qualitative case study mental health

Log in using your username and password

• Search More Search for this keyword Advanced search
• Latest content
• Topic collections
• BMJ Journals More You are viewing from: Google Indexer

You are here

• Volume 13, Issue 2
• Qualitative Research Methods in Mental Health
• Article Text
• Article info
• Citation Tools
• Rapid Responses
• Article metrics

• Sarah Peters
• Correspondence to : Dr Sarah Peters, School of Psychological Sciences, The University of Manchester, Coupland Building 1, Oxford Road M13 9PL, UK; sarah.peters{at}manchester.ac.uk

As the evidence base for the study of mental health problems develops, there is a need for increasingly rigorous and systematic research methodologies. Complex questions require complex methodological approaches. Recognising this, the MRC guidelines for developing and testing complex interventions place qualitative methods as integral to each stage of intervention development and implementation. However, mental health research has lagged behind many other healthcare specialities in using qualitative methods within its evidence base. Rigour in qualitative research raises many similar issues to quantitative research and also some additional challenges. This article examines the role of qualitative methods within mental heath research, describes key methodological and analytical approaches and offers guidance on how to differentiate between poor and good quality qualitative research.

https://doi.org/10.1136/ebmh.13.2.35

Statistics from Altmetric.com

Request permissions.

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

The trajectory of qualitative methods in mental health research

Qualitative methodologies have a clear home within the study of mental health research. Early and, arguably, seminal work into the study of mental illnesses and their management was based on detailed observation, moving towards theory using inductive reasoning. Case studies have been long established in psychiatry to present detailed analysis of unusual cases or novel treatments. Participant observation was the principle method used in Goffman's seminal study of psychiatric patients in asylums that informed his ideas about the institutionalising and medicalising of mental illness by medical practice. 1 However, the 20th century saw the ‘behaviourist revolution’, a movement where quantification and experimentation dominated. Researchers sought to identify cause and effects, and reasoning became more deductive – seeking to use data to confirm theory. The study of health and illness was determined by contemporary thinking about disease, taking a biomedical stance. Psychologists and clinical health researchers exploited natural science methodologies, attempting to measure phenomenon in their smallest entities and do so as objectively as possible. This reductionist and positivist philosophy shaped advances in research methods and meant that qualitative exploration failed to develop as a credible scientific approach. Indeed, ‘objectivity’ and the ‘discovery of truth’ have become synonymous with ‘scientific enquiry’ and qualitative methods are easily dismissed as ‘anecdotal’. The underlying epistemology of this approach chimes well with medical practice for which training is predominately in laboratory and basic sciences (such as physics and chemistry) within which the discourse of natural laws dominate. To this end, research in psychiatry still remains overwhelmingly quantitative. 2

Underlying all research paradigms are assumptions. However, most traditional researchers remain unaware of these until they start to use alternative paradigms. Key assumptions of quantitative research are that facts exist that can be quantified and measured and that these should be examined, as far as possible, objectively, partialling out or controlling for the context within which they exist. There are research questions within mental health where this approach can hold: where phenomenon of interest can be reliably and meaningfully quantified and measured, it is feasible to use data to test predictions and examine change. However, for many questions these assumptions prove unsatisfying. It is often not possible or desirable to try and create laboratory conditions for the research; indeed it would be ecologically invalid to do so. For example, to understand the experience of an individual who has been newly diagnosed with schizophrenia, it is clearly important to consider the context within which they live, their family, social grouping and media messages they are exposed to. Table 1 depicts the key differences between the two methodological approaches and core underlying assumptions for each.

• View inline

Comparison of underlying assumptions of quantitative and qualitative research approaches

It should be cautioned that it is easy to fall into the trap of categorising studies as either quantitative or qualitative. The two traditions are often positioned within the literature as opposing and in conflict. This division is unhelpful and likely to impede methodological advancement. Though, undeniably, there are differences in the two approaches to research, there are also many exceptions that expose this dichotomy to be simplistic: some qualitative studies seek to test a priori hypotheses, and some quantitative studies are atheoretical and exploratory. 3 Hence it is more useful to consider research methodologies as lying along a spectrum and that researchers should be familiar with the full range of methodologies, so that a method is chosen according to the research question rather than the researcher's ability.

Rationale for qualitative methods in current mental health research

There are a number of scientific, practical and ethical reasons why mental health is an area that can particularly benefit from qualitative enquiry. Mental health research is complex. Health problems are multifactorial in their aetiology and the consequences they have on the individual, families and societies. Management can involve self-help, pharmacological, educative, social and psychotherapeutic approaches. Services involved are often multidisciplinary and require liaison between a number of individuals including professionals, service-users and relatives. Many problems are exacerbated by poor treatment compliance and lack of access to, or engagement with, appropriate services. 4

Engagement with mental health research can also be challenging. Topics may be highly sensitive or private. Individuals may have impaired capacity or be at high risk. During the research process there may be revelations of suicidal ideation or criminal activity. Hence mental health research can raise additional ethical issues. In other cases scepticism of services makes for reluctant research participants. However, if we accept the case that meaningful research can be based in subjective enquiry then qualitative methods provide a way of giving voice to participants. Qualitative methods offer an effective way of involving service-users in developing interventions for mental health problems 5 ensuring that the questions asked are meaningful to individuals. This may be particularly beneficial if participants are stakeholders, for example potential users of a new service.

Qualitative methods are valuable for individuals who have limited literacy skills who struggle with pencil and paper measures. For example qualitative research has proved fruitful in understanding children's concepts of mental illness and associated services. 6

How qualitative enquiry is used within mental health research

There are a range of types of research question where qualitative methods prove useful – from the development and testing of theory, to the piloting and establishing efficacy of treatment approaches, to understanding issues around translation and implementation into routine practice. Each is discussed in turn.

Development and testing of theory

Qualitative methods are important in exploratory work and in generating understanding of a phenomenon, stimulating new ideas or building new theory. For example, stigma is a concept that is recognised as a barrier to accessing services and also an added burden to mental health. A focus-group study sought to understand the meaning of stigma from the perspectives of individuals with schizophrenia, their relatives and health professionals. 7 From this they developed a four-dimensional theory which has subsequently informed interventions to reduce stigma and discrimination that target not only engagement with psychiatric services but also interactions with the public and work. 7

Development of tools and measures

Qualitative methods access personal accounts, capturing how individuals talk about a lived experience. This can be invaluable for designing new research tools. For example, Mavaddat and colleagues used focus groups with 56 patients with severe or common mental health problems to explore their experiences of primary care management. 8 Nine focus groups were conducted and analysis identified key themes. From these, items were generated to form a Patient Experience Questionnaire, of which the psychometric properties were subsequently examined quantitatively in a larger sample. Not only can dimensions be identified, the rich qualitative data provide terminology that is meaningful to service users that can then be incorporated into question items.

Development and testing of interventions

As we have seen, qualitative methods can inform the development of new interventions. The gold-standard methodology for investigating treatment effectiveness is the randomised controlled trial (RCT), with the principle output being an effect size or demonstration that the primary outcome was significantly improved for participants in the intervention arm compared with those in the control/comparison arm. Nevertheless, what will be familiar for researchers and clinicians involved in trials is that immense research and clinical learning arises from these substantial, often lengthy and expensive research endeavours. Qualitative methods provide a means to empirically capture these lessons, whether they are about recruitment, therapy training/supervision, treatment delivery or content. These data are essential to improve the feasibility and acceptability of further trials and developing the intervention. Conducting qualitative work prior to embarking on an RCT can inform the design, delivery and recruitment, as well as engage relevant stakeholders early in the process; all of these can prevent costly errors. Qualitative research can also be used during a trial to identify reasons for poor recruitment: in one RCT, implementing findings from this type of investigation led to an increased randomisation rate from 40% to 70%. 9

Nesting qualitative research within a trial can be viewed as taking out an insurance policy as data are generated which can later help explain negative or surprising findings. A recent trial of reattribution training for GPs to manage medically unexplained symptoms demonstrated substantial improvements in GP consultation behaviour. 10 However, effects on clinical outcomes were counterintuitive. A series of nested qualitative studies helped shed light as to why this was the case: patients' illness models were complex, and they resisted engaging with GPs (who they perceived as having more simplistic and dualistic understanding) because they were anxious it would lead to non-identification or misdiagnosis of any potential future disease 11 , an issue that can be addressed in future interventions. Even if the insights are unsurprising to those involved in the research, the data collected have been generated systematically and can be subjected to peer review and disseminated. For this reason, there is an increasing expectation from funding bodies that qualitative methodologies are integral to psychosocial intervention research.

Translation and implementation into clinical practice

Trials provide limited information about how treatments can be implemented into clinical practice or applied to another context. Psychological interventions are more effective when delivered within trial settings by experts involved in their development than when they are delivered within clinical settings. 12 Qualitative methods can help us understand how to implement research findings into routine practice. 13

Understanding what stakeholders value about a service and what barriers exist to its uptake is another evidence base to inform clinicians' practice. Relapse prevention is an effective psychoeducation approach that helps individuals with bipolar disorder extend time to relapse. Qualitative methodologies identified which aspects of the intervention service-users and care-coordinators value, and hence, are likely to utilise in routine care. 14 The intervention facilitated better understanding of bipolar disorder (by both parties), demonstrating, in turn, a rationale for medication. Patients discovered new, empowering and less socially isolated ways of managing their symptoms, which had important impacts on interactions with healthcare staff and family members. Furthermore, care-coordinators' reported how they used elements of the intervention when working with clients with other diagnoses. The research also provided insights as to where difficulties may occur when implementing a particular intervention into routine care. For example, for care-coordinators this proved a novel way of working with clients that was more emotionally demanding, thus highlighting the need for supervision and managerial support. 14

Beginners guide to qualitative approaches: one size doesn't fit all

Just as there is a range of quantitative research designs and statistical analyses to choose from, so there are many types of qualitative methods. Choosing a method can be daunting to an inexperienced or beginner-level qualitative researcher, for it requires engaging with new terms and ways of thinking about knowledge. The following summary sets out analytic and data-generation approaches that are used commonly in mental health research. It is not intended to be comprehensive and is provided only as a point of access/familiarisation to researchers less familiar with the literature.

Data generation

Qualitative data are generated in several ways. Most commonly, researchers seek a sample and conduct a series of individual in-depth interviews, seeking participants' views on topics of interest. Typically these last upwards of 45 min and are organised on the basis of a schedule of topics identified from the literature or pilot work. This does not act as a questionnaire, however; rather, it acts as a flexible framework for exploring areas of interest. The researcher combines open questions to elicit free responses, with focused questions for probing and prompting participants to provide effective responses. Usually interviews are audio-recorded and transcribed verbatim for subsequent analysis.

As interviews are held in privately, and on one-to-one basis, they provide scope to develop a trusting relationship so that participants are comfortable disclosing socially undesirable views. For example, in a study of practice nurses views of chronic fatigue syndrome, some nurses described patients as lazy or illegitimate – a view that challenges the stereotype of a nursing professional as a sympathetic and caring person. 15 This gives important information about the education and supervision required to enable or train general nurses to ensure that they are capable of delivering psychological interventions for these types of problems.

Alternatively, groups of participants are brought together for a focus group, which usually lasts for 2 hours. Although it is tempting to consider focus groups as an efficient way of acquiring data from several participants simultaneously, there are disadvantages. They are difficult to organise for geographically dispersed or busy participants, and there are compromises to confidentiality, particularly within ‘captive’ populations (eg, within an organisation individuals may be unwilling to criticise). Group dynamics must be considered; the presence of a dominant or self-professed expert can inhibit the group and, therefore, prevent useful data generation. When the subject mater is sensitive, individuals may be unwilling to discuss experiences in a group, although it often promotes a shared experience that can be empowering. Most of these problems are avoided by careful planning of the group composition and ensuring the group is conducted by a highly skilled facilitator. Lester and colleagues 16 used focus-group sessions with patients and health professionals to understand the experience of dealing with serious mental illness. Though initially participants were observed via focus-group sessions that used patient-only and health professional only groups, subsequently on combined focus groups were used that contained both patients and health professionals. 16 The primary advantage of focus groups is that they enable generation of data about how individuals discuss and interact about a phenomenon; thus, a well-conducted focus group can be an extremely rich source of data.

A different type of data are naturally occurring dialogue and behaviours. These may be recorded through observation and detailed field notes (see ethnography in Table 2 ) or analysed from audio/ video-recordings. Other data sources include texts, for example, diaries, clinical notes, Internet blogs and so on. Qualitative data can even be generated through postal surveys. We thematically analysed responses to an open-ended question set within a survey about medical educators' views of behavioural and social sciences (BSS). 17 From this, key barriers to integrating BSS within medical training were identified, which included an entrenched biomedical mindset. The themes were analysed in relation to existing literature and revealed that despite radical changes in medical training, the power of the hidden curriculum persists. 17

Key features of a range of analytical approaches used within mental health research

Analysing qualitative data

Researchers bring a wide range of analytical approaches to the data. A comprehensive and detailed discussion of the philosophy underlying different methods is beyond the scope of this paper; however, a summary of the key analytical approaches used in mental health research are provided in Table 2 . An illustrative example is provided for each approach to offer some insight into the commonalities and differences between methodologies. The procedure for analysis for all methods involves successive stages of data familiarisation/immersion, followed by seeking and reviewing patterns within the data, which may then be defined and categorized as specific themes. Researchers move back and forth between data generation and analysis, confirming or disconfirming emerging ideas. The relationship of the analysis to theory-testing or theory-building depends on the methodology used.

Some approaches are more common in healthcare than others. Interpretative phenomenological (lPA) analysis and thematic analysis have proved particularly popular. In contrast, ethnographic research requires a high level of researcher investment and reflexivity and can prove challenging for NHS ethic committees. Consequently, it remains under used in healthcare research.

Recruitment and sampling

Quantitative research is interested in identifying the typical, or average. By contrast, qualitative research aims to discover and examine the breadth of views held within a community. This includes extreme or deviant views and views that are absent. Consequently, qualitative researchers do not necessarily (though in some circumstances they may) seek to identify a representative sample. Instead, the aim may be to sample across the range of views. Hence, qualitative research can comment on what views exist and what this means, but it is not possible to infer the proportions of people from the wider population that hold a particular view.

However, sampling for a qualitative study is not any less systematic or considered. In a quantitative study one would take a statistical approach to sampling, for example, selecting a random sample or recruiting consecutive referrals, or every 10th out-patient attendee. Qualitative studies, instead, often elect to use theoretical means to identify a sample. This is often purposive; that is, the researcher uses theoretical principles to choose the attributes of included participants. Healey and colleagues conducted a study to understand the reasons for individuals with bipolar disorder misusing substances. 18 They sought to include participants who were current users of each substance group, and the recruitment strategy evolved to actively target specific cases.

Qualitative studies typically use far smaller samples than quantitative studies. The number varies depending on the richness of the data yielded and the type of analytic approach that can range from a single case to more than 100 participants. As with all research, it is unethical to recruit more participants than needed to address the question at hand; a qualitative sample should be sufficient for thematic saturation to be achieved from the data.

Ensuring that findings are valid and generalisable

A common question from individuals new to qualitative research is how can findings from a study of few participants be generalised to the wider population? In some circumstances, findings from an individual study (quantitative or qualitative) may have limited generalisability; therefore, more studies may need to be conducted, in order to build local knowledge that can then be tested or explored across similar groups. 4 However, all qualitative studies should create new insights that have theoretical or clinical relevance which enables the study to extend understanding beyond the individual participants and to the wider population. In some cases, this can lead to generation of new theory (see grounded theory in Table 2 ).

Reliability and validity are two important ways of ascertaining rigor in quantitative research. Qualitative research seeks to understand individual construction and, by definition, is subjective. It is unlikely, therefore, that a study could ever be repeated with exactly the same circumstances. Instead, qualitative research is concerned with the question of whether the findings are trustworthy; that is, if the same circumstances were to prevail, would the same conclusions would be drawn?

There are a number of ways to maximise trustworthiness. One is triangulation, of which there are three subtypes. Data triangulation involves using data from several sources (eg, interviews, documentation, observation). A research team may include members from different backgrounds (eg, psychology, psychiatry, sociology), enabling a range of perspectives to be used within the discussion and interpretation of the data. This is termed researcher triangulation . The final subtype, theoretical triangulation, requires using more than one theory to examine the research question. Another technique to establish the trustworthiness of the findings is to use respondent validation. Here, the final or interim analysis is presented to members of the population of interest to ascertain whether interpretations made are valid.

An important aspect of all qualitative studies is researcher reflexivity. Here researchers consider their role and how their experience and knowledge might influence the generation, analysis and interpretation of the data. As with all well-conducted research, a clear record of progress should be kept – to enable scrutiny of recruitment, data generation and development of analysis. However, transparency is particularly important in qualitative research as the concepts and views evolve and are refined during the process.

Judging quality in qualitative research

Within all fields of research there are better and worse ways of conducting a study, and range of quality in mental health qualitative research is variable. Many of the principles for judging quality in qualitative research are the same for judging quality in any other type of research. However, several guidelines have been developed to help readers, reviewers and editors who lack methodological expertise to feel more confident in appraising qualitative studies. Guidelines are a prerequisite for the relatively recent advance of methodologies for systematic reviewing of qualitative literature (see meta-synthesis in Table 2 ). Box 1 provides some key questions that should be considered while studying a qualitative report.

Box 1 Guidelines for authors and reviewers of qualitative research (adapted from Malterud 35 )

▶ Is the research question relevant and clearly stated?

Reflexivity

▶ Are the researcher's motives and background presented?

Method, sampling and data collection

▶ Is a qualitative method appropriate and justified?

▶ Is the sampling strategy clearly described and justified?

▶ Is the method for data generation fully described

▶ Are the characteristics of the sample sufficiently described?

Theoretical framework

▶ Was a theoretical framework used and stated?

▶ Are the principles and procedures for data organisation and analysis described and justified?

▶ Are strategies used to test the trustworthiness of the findings?

▶ Are the findings relevant to the aim of the study?

▶ Are data (e.g. quotes) used to support and enrich the findings?

▶ Are the conclusions directly linked to the study? Are you convinced?

▶ Do the findings have clinical or theoretical value?

▶ Are findings compared to appropriate theoretical and empirical literature?

▶ Are questions about the internal and external validity and reflexivity discussed?

▶ Are shortcomings of the design, and the implications these have on findings, examined?

▶ Are clinical/theoretical implications of the findings made?

Presentation

▶ Is the report understandable and clearly contextualised?

▶ Is it possible to distinguish between the voices of informants and researchers?

▶ Are sources from the field used and appropriately referenced?

Conclusions and future directions

Qualitative research has enormous potential within the field of mental health research, yet researchers are only beginning to exploit the range of methods they use at each stage of enquiry. Strengths of qualitative research primarily lie in developing theory and increasing understanding about effective implementation of treatments and how best to support clinicians and service users in managing mental health problems. An important development in the field is how to integrate methodological approaches to address questions. This raises a number of challenges, such as how to integrate textual and numerical data and how to reconcile different epistemologies. A distinction can be made between mixed- method design (eg, quantitative and qualitative data are gathered and findings combined within a single or series of studies) and mixed- model study, a pragmatist approach, whereby aspects of qualitative and quantitative research are combined at different stages during a research process. 19 Qualitative research is still often viewed as only a support function or as secondary to quantitative research; however, this situation is likely to evolve as more researchers gain a broader skill set.

Though it is undeniable that there has been a marked increase in the volume and quality of qualitative research published within the past two decades, mental health research has been surprisingly slow to develop, compared to other disciplines e.g. general practice and nursing, with relatively fewer qualitative research findings reaching mainstream psychiatric journals. 2 This does not appear to reflect overall editorial policy; however, it may be partly due to the lack of confidence on the part of editors and reviewers while identifying rigorous qualitative research data for further publication. 20 However, the skilled researcher should no longer find him or herself forced into a position of defending a single-methodology camp (quantitative vs qualitative), but should be equipped with the necessary methodological and analytical skills to study and interpret data and to appraise and interpret others' findings from a full range of methodological techniques.

• Crawford MJ ,
• Cordingley L
• Dowrick C ,
• Edwards S ,
• ↵ MRC Developing and Evaluating Complex Interventions 2008
• Nelson ML ,
• Quintana SM
• Schulze B ,
• Angermeyer MC
• Mavaddat N ,
• Lester HE ,
• Donovan J ,
• Morriss R ,
• Barkham M ,
• Stiles WB ,
• Connell J ,
• Chew-Graham C ,
• England E ,
• Kinderman P ,
• Tashakkoria A ,
• Ritchie J ,
• Ssebunnya J ,
• Chilvers R ,
• Glasman D ,
• Finlay WM ,
• Strauss A ,
• Hodges BD ,
• Dobransky K
• Dixon-Woods M ,
• Fitzpatrick R ,
• Espíndola CR ,

Read the full text or download the PDF:

• Open access
• Published: 13 October 2023

A qualitative exploration of young people’s mental health needs in rural and regional Australia: engagement, empowerment and integration

• Christiane Klinner   ORCID: orcid.org/0000-0001-9313-6799 1 ,
• Nick Glozier 1 , 2 ,
• Margaret Yeung 1 ,
• Katrina Conn   ORCID: orcid.org/0000-0002-0476-9146 1 , 3 &
• Alyssa Milton   ORCID: orcid.org/0000-0002-4326-0123 1 , 2  

BMC Psychiatry volume  23 , Article number:  745 ( 2023 ) Cite this article

2293 Accesses

1 Citations

Metrics details

Australian rural and regional communities are marked by geographic isolation and increasingly frequent and severe natural disasters such as drought, bushfires and floods. These circumstances strain the mental health of their inhabitants and jeopardise the healthy mental and emotional development of their adolescent populations. Professional mental health care in these communities is often inconsistent and un-coordinated. While substantial research has examined the barriers of young people’s mental health and help-seeking behaviours in these communities, there is a lack of research exploring what adolescents in rural and regional areas view as facilitators to their mental health and to seeking help when it is needed. This study aims to establish an in-depth understanding of those young people’s experiences and needs regarding mental health, what facilitates their help-seeking, and what kind of mental health education and support they want and find useful.

We conducted a qualitative study in 11 drought-affected rural and regional communities of New South Wales, Australia. Seventeen semi-structured (14 group; 3 individual) interviews were held with 42 year 9 and 10 high school students, 14 high school staff, and 2 parents, exploring participants’ experiences of how geographical isolation and natural disasters impacted their mental health. We further examined participants’ understandings and needs regarding locally available mental health support resources and their views and experiences regarding mental illness, stigma and help-seeking.

Thematic analysis highlighted that, through the lens of participants, young people’s mental health and help-seeking needs would best be enabled by a well-coordinated multi-pronged community approach consisting of mental health education and support services that are locally available, free of charge, engaging, and empowering. Participants also highlighted the need to integrate young people’s existing mental health supporters such as teachers, parents and school counselling services into such a community approach, recognising their strengths, limitations and own education and support needs.

Conclusions

We propose a three-dimensional Engagement, Empowerment, Integration model to strengthen young people’s mental health development which comprises: 1) maximising young people’s emotional investment (engagement); 2) developing young people’s mental health self-management skills (empowerment); and, 3) integrating mental health education and support programs into existing community and school structures and resources (integration).

Peer Review reports

Mental health service use is considerably lower in rural and regional communities than in urban areas in both Australia [ 1 , 2 ] and internationally [ 3 , 4 , 5 ]. Young people (YP) in particular have been reluctant to seek formal mental health support, which has been attributed to stigma and negative beliefs towards mental health services and professionals [ 6 , 7 ]. Such reluctance is particularly pronounced in rural and regional communities where mental health stigma rapidly spreads through social networks and “sticks” to the individual [ 3 ]. This phenomenon has been associated with higher levels of socio-economic disadvantage [ 8 ], social conservatism [ 9 ] and social visibility in these communities resulting in reduced privacy [ 10 , 11 ], with lack of confidentiality cited as a major concern of YP when considering accessing mental health services [ 8 ]. Professional mental health care in rural and regional areas is often inconsistent and un-coordinated [ 3 , 12 ], with help-seekers being required to travel large distances [ 13 ] and experiencing lengthy service waitlist [ 14 ]. The wellbeing of these communities is also more affected by increasingly severe and prevalent natural disasters. Prolonged drought, for example, coupled with feelings of isolation has been shown to impact YP’s mental health, making them feel overwhelmed and worry about their families, friends, money and their futures [ 15 , 16 ].

While there is substantial research examining the barriers of YP’s mental health help-seeking behaviour in drought-affected rural and regional areas, less is known about what types of supports, programs and education facilitates their help-seeking [ 17 ]. In a recent systematic review on the barriers, facilitators and interventions for mental health help-seeking behaviours in adolescents, only 19 of 56 studies identified help-seeking facilitators [ 6 ]. These included previous positive experience with health services and higher levels of mental health literacy. Most research examining enablers of YP’s help-seeking is from the perspective of adults, parents and teachers (e.g., [ 14 , 18 , 19 , 20 , 21 , 22 ]). There is a lack of research examining what YP in rural and regional areas view as facilitators to seeking help when it is needed. The few studies that have examined help-seeking facilitators report that confidentiality and accessibility of mental health services [ 23 ], for the availability of more school counselling services [ 24 ], and YP desire to develop mental health self-management skills [ 15 ] to support the mental health help-seeking process.

This research program had 2 overarching aims. The first aim, which is reported in this article, was to establish a more in-depth understanding of YP’s experiences and needs regarding their mental health help-seeking, and explore mental health education, support and programs in rural and regional communities, complemented by the views of their teachers and parents. The second aim, which is reported elsewhere [ 25 ], was to evaluate the batyr@school program which was to be delivered at the participating schools within the year. The schools were selected to participate in the program by the New South Wales Department of Education as they were identified as communities which had, at the time of establishing the research, been experiencing severe drought — a recurring natural event in Australia that has been linked to adverse mental health outcomes in the affected communities [ 26 , 27 ]. The primary research question for the research reported in this article was: What are the attitudes and needs of young people, their teachers and parents regarding mental health and help-seeking in drought affected r ural and regional areas of Australia?

Study design

This study used qualitative pre- and post-intervention data from an evaluation of the batyr@school intervention [ 28 ] delivered to YP, teachers and parents in drought affected communities in Australia [ 25 ]. Semi-structured interviews (group and individual) were conducted to enable an in-depth exploration of participants’ views, experiences and needs about this sensitive topic [ 29 , 30 ]. While acknowledging its limitations [ 31 ], we used the COnsolidated criteria for REporting Qualitative research checklist (COREQ checklist [ 32 ], See Supplementary File ).

Ethical approval for this study was provided by the University of Sydney Human Research Ethics Committee (Protocol number 2020/607). Subsequent approval was provided via the NSW State Education Research Applications Process (SERAP Number 2020373).

Setting, participants and recruitment

The participants comprised three stakeholder groups: high school students aged 14–15 years (grade 9 and 10 in Australia; n  = 42; 24 females, 18 males), high school staff (primarily teachers but also administrators and Wellbeing Officers) ( n  = 14; 10 females, 4 males) and two parents of high school students ( n  = 2; females). Detailed participant demographics and inclusion criteria are available as a Supplementary File . Participants were recruited through 11 participating high schools who were willing to take part in the qualitative research component of the wider batyr@school evaluation. In total, 26 rural and regional school communities from drought-affected areas of New South Wales were invited to participate in focus groups or individual interviews. Focus groups were selected as the main form of data collection as this reduced the administrative burden on schools in supporting the research. Individual interviews were also offered depending on the needs of the participant (eg. time constraints, unable to attend a focus group, personal preference, accessibility issues). Of these schools, 20 participated in the mixed methods evaluation, and 11 consented to conducting the qualitative research component. Of the six schools that did not participate, 5 cited that they were under too much administrative burden to take part, and one school had experienced a recent mental health trauma so felt the timing was not appropriate.

Participants for the focus groups and interviews were recruited through a combination of passive recruitment (via distribution of info sheets through the participating schools’ communication channels to staff, parents and students) [ 33 ] and snowball sampling [ 34 ]. The intention was to minimise perceived pressure to participate whilst utilising the schools’ social networks [ 35 ]. Written informed consent was obtained from all participants.

Data collection

From June 2021 to June 2022, the chief investigator (a qualitative researcher and psychologist), supported by a postgraduate student, conducted 14 group and three individual interviews with a total of 57 participants. The group interview size ranged from 2 to 5 participants. Of the 11 student interviews, three included the active participation of a teacher. Some schools considered the presence of a teacher necessary because the student interviews were conducted during school hours. Sixteen interviews were held via Zoom, and one parent interview via telephone. The sessions lasted between 20 and 115 min (mean duration 50 min). All interviews were audio-recorded, transcribed verbatim, de-identified and checked for accuracy. One teacher who was unable to participate in an interview provided a one-page written feedback on the interview questions, which was included in the data set.

Two of the research team members, both with extensive experience in qualitative research, reviewed the transcripts alongside data gathering and adapted the interview guide for further interviews as initial themes evolved and the need for more data in particular topic areas emerged [ 36 ]. This reflexive iteration between data gathering and analysis also served to refine focus and understanding of the data, and to determine when theme saturation was achieved [ 37 ]. The interviews explored 4 questions: 1) participants’ views on how drought impacted their local community from a mental health perspective, 2) participants’ understanding of locally available mental health support resources, 3) YP’s help-seeking experiences including what participants would do if a(nother) YP reached out to them for mental health support, and 4) participants’ views on their communities’ attitudes and beliefs about mental ill health, stigma and help-seeking. Participants were also asked for improvement suggestions in all 4 focus areas. The final interview guide is available as a Supplementary File .

In the process of reviewing the interview transcripts and listening to the audio files, one qualitative researcher developed an extensive analytical memo. This memo initially contained rich descriptions of preliminary themes identified inductively as important relative to the research question, interspersed reflexive comments on their potential meaning and relationships to each other [ 38 ]. This expansive phase of memo-writing followed a process of structuring and abstraction of the data in which themes and sub-themes were consolidated in team discussions, using a critical realist approach [ 39 ]. As a result of this process, the analytic memo had transformed into a framework that was used to report the results. The authors (who had a diverse mix of backgrounds including: qualitative researchers, mental health professionals, a teacher, a university student and an expert by experience; two of the research team were young people themselves (i.e. aged under 25 years [ 40 ]) and one was residing in a regional community) collaboratively refined the written results in several rounds of discussion and editing. The findings were also triangulated with the initial qualitative findings of an internal batyr @school baseline evaluation report [ 25 ], which had previously been analysed, interpreted and iteratively refined by the same team excluding one qualitative researcher who led this study’s analysis. This collaborative approach to analysis encourages high levels of reflexivity based on comparisons between the multiple personal and professional perspectives of all involved.

Terminology

This study was set in a high school environment. Therefore, the term ‘student’ is used when referring to the YP who participated in this study and the term ‘young person/people (YP)’ in reference to adolescents generally. The term ‘participants’ is used when referring to all three study participant groups. Otherwise, the participant group is specified; for example, ‘Students said…’.

In the following results section YP’s perspectives, experiences and needs regarding mental health help-seeking, stigma, and education and support services in drought-affected rural and regional communities are described. This is complemented by the views of their teachers and parents. The participants’ descriptions of the barriers to each of these above areas relating to their community, family, school, peers and individuals are provided. Importantly, these barriers are followed by their suggested solutions and facilitators to help-seeking and support. The most salient participant quotes are included in the text and ancillary quotes illustrating the findings further are presented in a Supplementary File .

Barriers to mental wellbeing and coping mechanisms

Community level.

Students vividly described their communities’ existential stressors caused by drought and other recurring natural events such as floods, bushfires and mice plagues, all straining the community’s mental wellbeing (See Supplementary File , Quote 1). In some communities these stressors coincided with high levels of social disadvantage, substance abuse and domestic violence (Quote 2). Participants described how these existential and economic stressors affected YPs’ mental health (Quote 3). Long distances to the nearest healthcare services (GPs, specialists, hospitals), long wait times to obtain an appointment and a lack of local youth mental health services made it difficult for YP and their families to access professional help when they needed it (Quote 4a-4b). Both students and teachers summarised the, at times, complete absence of accessible mental health services and contrasted them to those perceived to be available in urban areas (Quote 5 and below):

In [capital city], there was a lot of resources; and when I come here, there's nothing […] There's a whole lot of issues with suicide and attempted suicide. I think there's a headspace, but I don't know where that is. I think it might be in [nearest city, two hours’ drive away]. Which is nowhere near here. We're in the middle of nowhere. It seems to me like there's a really high, a lot higher incidence of sexual assault and suicidal ideation here. I mean, it's really hard to compare these two populations, but it does seem that way to me. And there's no services. [Teacher_B4]

Mental health services that were provided as one-off visits to rural and regional schools were seen as lacking coordination and continuity, impacting their effectiveness (Quote 6). Students also emphasised the absence of suitable places outside of home and school where they could socialise and informally support each other’s mental health. Community events that provided social opportunities were limited, and youth and community centres were perceived as lacking essential infrastructure and personnel (Quote 7–8), and were not viewed as desirable for 14–15-year-olds to attend – being more suited to pre-adolescent children (Quotes 7–8).

Family level

With limited access to professional mental health and youth support services in the community, good relationships with parents were pivotal to students’ mental wellbeing (Quote 9). Some students valued talking with their parents about mental health, and felt understood and supported when a parent with lived experience of mental ill health shared their experience with them (Quote 10). However, participants described parents, especially fathers, often as time-poor, absent from home, and/or struggling with their own mental health in the face of the rural challenges (Quotes 11–13). Students (and one parent) highlighted that as parents were often lacking mental health literacy and skills, they tended to ignore or dismiss their children’s mental health concerns (Quote 14–16). This lack of knowledge was attributed to stigma, open conversations about mental health being a relatively new phenomenon, fear of appearing weak, stress, or hoping the issue would just go away (Quote 14–16). Students also reported how, at times, mental health issues entrusted to their parents leaked into the community (Quote 17). Others described how parents acted out their mental health struggles via physical aggression, which was viewed as role-modelling unhelpful behaviours to their children:

S1: I've seen parents who have engaged in their children's, like, dramas […] And it's so hard, because a lot of the behavioural issues do come from parents. Like, it often stems from like your roots […] S2: And how their parents deal with their own issues, there’s like, a lot of physical fighting in our community too. I definitely notice. [Female Student_B1]

Some students described situations where they or their friends had felt invalidated by their parents (or carers) when trying to share. YP withdrew from sharing their mental health issues with their parents due to negative experiences with it. This also put up a barrier for some students to access online mental health support in case it was witnessed by their parents (Quotes 18–19). Other YP described that this feeling of reluctance, combined with a lack of local mental health services, made it difficult for YP to seek non-local professional help as they relied on parental support to physically get to an appointment (Quotes 20–22). One teacher also described some parents’ lack of cooperation regarding their adolescent children’s mental health treatment in situations when it was initiated by the school (Quote 23).

School level

Students reported strongly valuing the educational mental health programs that had been provided at school by visiting services (e.g., batyr@school [an interactive mental health program for high school students in years 9 to 12 delivered by facilitators and young people with lived experience of mental ill health that aims to reduce stigma, and educate and empower students to reach out for help when needed ( www.batyr.com.au )]; Tomorrow Man, Tomorrow Woman [a mental health program for year 10 high school students that aims to cultivate awareness among emerging young women and men of the pressures that come from gender stereotypes. The program aims to grow emotional literacy and develops skills around cultivating mental wellbeing for themselves and others ( https://leonsec.vic.edu.au/tomorrow-man-tomorrow-woman/ )]; Elephant Ed [a sex education workshops for year 5 to year 12 students ( www.elephanted.com.au )]), but considered this to be a drop in the ocean. Participants felt that a whole-of-community approach was needed, which extended to including educating parents and other adults in the community (Quote 35 and 35a). Some students had not experienced any school-based mental health programs (noting a batyr@school program was scheduled for delivery at their school over the following months as it was part of the research evaluation).

The majority of schools had local school counselling services which provided what was described by students and school staff as essential and sought-after mental health support for students. School counselling, however, was extremely under resourced and not meeting demand — as it was commonly only available one day per week, was often booked out for weeks in advance, and follow up appointments were difficult to obtain (Quote 36 and below):

We've actually got massive waiting lists at the moment for students to see people with mental health training, counsellors, we've got, we've got an undersupply. We've got a school psychologist who's got waiting lists, we got a school counsellor who's got waiting lists and we've got a student support officer who's got a waiting list. [Teacher_F6]

A teacher described how their school self-funded a psychologist whose work had markedly improved the mental wellbeing of students over years (Quote 37). As part of this, parents were included in the counselling services to YP and given support how to parent YP with mental health issues which was also viewed as effective approach (Quote 37). Other teachers commented on their school counsellors’ limits and, at times, inadequate qualifications (Quote 38–39). A minority of students were unaware that their school provided a counselling service (“ Do we even have a school counsellor?” [Male Student_F3]); some students were reluctant to visit their school counsellor out of fear of being singled out by the school community (Quote 40).

Both students and teachers described teachers as essential for YPs’ mental wellbeing. Students trusted their teachers and relied on their ability to help. Teachers were highly committed, and often proud, to provide mental health support to their students (Quotes 42–44). Teachers —particularly those with student wellbeing support briefs in their roles like Physical Education teachers, Wellbeing Officers, Year Advisors and Principals — provided mental health counselling to students when school counselling services were unavailable or when approached by students, both formally and informally (Quotes 45–46). They also provided emergency mental health services for students to support and bridge gaps in the chain of professional and home care (Quotes 47–48), and they supported and educated parents (Quotes 49–50). At the same time, teachers expressed feeling overwhelmed by the extent to which a growing number of students needed acute mental health support. They described this as navigating on the edge between feeling obliged, and wanting, to provide mental health support on one hand and being at their limits on the other. These limits, as reported by teachers, included feeling overstretched and often unable to balance the time to fit mental health education and support in with their multiple teaching responsibilities (Quotes 51–53 and below):

[Teachers] have got so much on their plate with what they've got to do in learning outcomes and all that sort of stuff. They don't really have time to think about these things [referring to students’ mental health] as well. [Teacher_F11]

Teachers also emphasised that they sometimes felt ill-equipped regarding their mental health knowledge and skills to help students with complex mental health needs (Quotes 55 and below):

I feel on edge when I try to give the kids advice because I'm not trained in that, like I know myself, I've raised three kids, you know. I've done heaps in my life experience. But at the end of the day, I'm not a counsellor, I'm not a psychologist […] and yet we’re expected to be. [Teacher_B5]

Teachers felt uncertain where to draw the line between YPs’ privacy versus their caring responsibility as teachers (Quote 56); and also reported that, despite their best intentions, their own patience and empathy was challenged in regard to students with behavioural disorders:

We’ll have empathy for kids that have got really obvious issues, but then there's the other sort of kids that’ll be in your class, that exhibit disruptive sort of behaviour, and there might be some sort of issue behind that. And people are much less understanding of that, I mean, I find myself I’m much less understanding of that sort of behaviour than I was previously. [Teacher_B4]

Peer friendship and mutual support were of utmost importance to students (Quote 67). One student, for example, enthusiastically spoke of the mental health benefits of having initiated a boys social media chat group for the purpose of mutual support (Quote 68). Concurrently, students were acutely aware of their limitations regarding supporting each other’s mental health. They felt weighted down by the responsibility that came with giving, offering, or even just intending to support their friends, and were extremely keen to learn how to help each other more effectively (Quotes 69–71). A parent described YP’s attempts to help each other as “ the blind leading the blind ” (Quote 72).

Individual level

Participants reported above-mentioned existential stressors on the community, stretched and insufficiently equipped parents and teachers, a collective silencing (i.e., not talking about) of mental health issues, and a lack of local mental health support weighed on YP at an individual level. This culminated in students knowing when ‘something’ was wrong with their mental health, but often did not know how to describe let alone deal with ‘it’ effectively (Quotes 58–59). Participants described a variety of unhelpful mental health coping mechanisms that they had used themselves or observed in peers. These included: accepting mental health issues as normal (Quote below) and suppressing negative feelings (Quote 60).

Our feelings are so normalized that it's OK to be sad a lot of the time. It's OK to be angry all the time, which you don't want to be angry and sad all the time. That's not, it's OK to be sad and angry sometimes, but we don't want to do it all the time. And I think that's another issue. We don't register that something is wrong, you know […] it kind of doesn't process that it's not that's not how it has to be, like you can get help. But I don't think we realize that we need it. [Female Student_B1]

When the weight of bottling up mental health issues became overwhelming, some YP relieved their mental stress in maladaptive ways, making their social surroundings obscurely yet acutely aware that they were not coping. Such ‘concealed cries for help’ ranged from attention seeking behaviour (Quote 61), physical aggression against teachers (Quote 62), towards each other (Quote 63), and towards themselves in form of self-harm and suicide, with self-harm incidents at times being shared with peers on social media. The latter was described by students and teachers as concealed cries for attention and/or support:

Suicidal self-harm, which self-harm just seems to periodically go with depression and anxiety, now, that's just how this coping strategy that young people have developed like they don't know what else to do that puts them in this next level. [Teacher_F8]

YPs’ maladaptive stress relief behaviours further increased the mental stress load on other YP and their social circles. Examples given by participants were students’ and teachers’ anxiety coming to school out of fear of being the target of physical aggression (Quote 64), and getting distressed by seeing peers’ self-harm stories on social media (Quote 65). Posted self-harm stories were also perceived as problematic by some participating YP as they thought to be normalising self-harm as a legitimate means of mental stress relief:

The whole idea of social media has become kind of destroyed by that image that like to have depression, you've got to be self-harming. [Female Student_B1]

However, participants also reported YPs’ constructive attempts of dealing with mental distress where parental and professional support were lacking, or unwanted out of concern of being dismissed or singled out. These attempts centred around YP helping (and seeking help from) each other as described in section ‘ Peer level ’. Several students knew of the availability of online mental health resources from school advertisements (Quote 41). The uptake of these online mental health services, however, was mixed. Some students valued the anonymity that online help offered; others hesitated to use it because of “ the security risk associated with putting stuff out on the internet” [MS_B3], or because they preferred talking face-to-face with someone (MS_B3). Others hadn’t considered accessing online help at all for themselves (M + FS_F12).

Impact of COVID-19 compared to other stressors and major events

While the data gathering for this study was conducted during the height of the COVID pandemic (June 2021 to June 2022), and the impact of the pandemic was touched on in the occasional interview/focus group (mostly prompted by the interviewer), we found that the pandemic did not significantly impact, exacerbate, or otherwise change the nature of young people’s mental health needs. Geographic remoteness, long-term drought, and other natural disasters such as floods and bush fires were together much deeper and complex existential stressors on rural and regional YP and their mental health than the comparatively shorter restrictions to urban areas that came with COVID-19. Social distancing and lockdown restrictions for example were viewed as a non-issue in communities without COVID cases. Moreover, remoteness, social distance and isolation were well-known factors that all participants reported to navigate long before the pandemic started, with its restrictions not incurring a substantial difference to day-to-day life.

Mental health stigma

In all interviews, participants described the presence of stigma in the community limiting addressing mental health issues and accessing appropriate support, including in the school playground and at home. Mental health self-stigma was characterised by (a fear of) being seen as weird or weak – the latter more so among boys and men; being ashamed to be different; and being (scared of getting) judged negatively (Quotes 24–28). Students and teachers reported how fear-based negative connotations around mental ill health prevented YP and their families from talking about their feelings and seeking mental health support, especially in smaller communities where everyone knew each other (Quotes 29–32 and below):

They don’t feel comfortable but yeah, or they think oh, that's a shame. I'm not going to be going to ask for help, like, people might tease me. [Female Student_B1]

Students described how a lack of mental health awareness in the community perpetuated the mental health stigma (Quote 33), and noted that being educated about “awkward” themes made it easier for them to talk about them (Quote 34).

Mental health solutions

Multi-pronged approach to mental health education.

All participant groups emphasised the need to take a multi-pronged approach to mental health education and support, with programs and services not only for YP, but also for parents and teachers and the community as a whole (Quote 73-74a), to tackle the communal mental health stigma and enable managing mental health issues without shame (Quote 75). Students in particular stressed the importance of educating parents and teachers (Quote 76). They wanted their parents to gain more mental health awareness, know how to identify mental ill health, act appropriately when their adolescent child displayed signs of mental ill health, know where to get help and how to keep mental health issues confidential (Quotes 77–80). Indeed, students yearned for their parents’ mental health understanding and appropriate behaviour (Quote 81). It was rare for students to report that their parents already had “ a really good idea of what to do ” (FS_F5). Educating parents was also a high priority for teacher and parent participants (Quotes 82–83). All participant groups also stressed the need to upskill teachers on how to identify and support YP with mental health issues (Quotes 84–86). Several teachers wanted mental health education to be part of the core teacher training (Quote 87).

Local, face-to-face, free of charge mental health services

Participants wanted mental health services to be offered locally, that is, in their community, to overcome the access barrier and to get personal face-to-face support. They wanted mental health services to be offered free of charge, especially during times of financial hardship caused by recurring natural events (Quotes 88–93). Some participants also emphasised a need to review how school counselling services operate including how well their training addressed the needs of school communities (Quotes 94–95). One teacher considered mental health education as the foundation for other learning to happen and suggested implementing it into the school curriculum (Quote 96).

Relatable, engaging, and inspiring mental health programs

Relatability was the desired mental health intervention characteristic that participants referred to most often and most passionately. Specifically, students wanted mental health programs to be tailored to their local circumstances, with demonstrations of empathy and understanding for them (Quote 97). More importantly, participants found programs extremely relatable and effective when they portrayed the perspective of YP with lived mental ill health experience, as in the batyr @school program (Quotes 98–99 and below).

I think it was really good that [Y9 students] heard […] the story of that young girl […] she wasn't going anywhere. She had no money. She was homeless, living in a car […]. But the kids, really, they were captivated by her. I remember looking around when she was speaking and they were just staring at her, like, in awe, yeah. And a lot of kids, when they had to write a message about the program, wrote about her on their piece of paper. [Teacher_F10]

Students contrasted this with mental health programs that only consisted of standard lecture format presentations, rated these as “ disengaging ” (Quote 100–101). Students also opened up when mental health programs included interactive elements such as group discussions and physical activity games. They found these highly engaging as they could contribute their opinions and experiences, release stress while physically engaging in fun activities, and maintain focus (Quotes 102–104). Group discussions were most accepted when the groups were small and homogenous regarding YPs’ age, gender and mental health needs (Quotes 105–108).

Empowering YP

Students highly valued peer friendships, if not depending on them in the face of the rural and regional challenges. They often preferred providing mental health support to each other over approaching their parents or teachers or accessing professional mental health support (Quotes 109–110), especially mental health services with whom they had no pre-existing relationship (see next section). Obtaining practical strategies how to help each other and increasing their confidence in talking about mental health were therefore top priorities for students, rarely addressed by the existing mental health support options available to them (Quotes 111–113). Some of the more outspoken students, and students with a lived experience of mental ill health, also valued opportunities where they could act as mental health ambassadors to give their peers “ that little push to come out ” (MS_B3), pass on their experiences and inspire other YP (Quotes 114–115).

Confidentiality and trust

Confidentiality around using mental health support was extremely important to students. Many of them were deeply afraid of being identified as in need of mental health support (due to the stigma identified above); they were only prepared to open up if they felt it was absolutely safe to do so and they could trust their helper (Quotes 116–117). Trust, confidentiality and safety for them developed with knowing the helper, preferably in person, being able to relate to them, and having a positive personal relationship with them. For the students who participated in our study, these criteria tended to be met mostly by peers and teachers, less so by parents and school counselling services, and least by health professionals and online helplines not previously known to students. Face-to-face contact, relatability, engagement and empowerment of YP all contributed to enhancing YP’s trust, as detailed in the earlier parts of this section.

Early and ongoing preventative mental health education

All participant groups emphasised that mental health education for YP should start early and be taught throughout all high school years, with some participants wanting mental health education to start in primary school (Quotes 118–122). Similar to the mental health education goals for parents and teachers (see section Multi-pronged approach above), participants suggested that mental health programs for YP should raise mental health awareness, teach how to recognise mental ill health, develop mental health self-help strategies, and address and break through stigma and stereotypes that were detrimental to YP’s mental health (Quotes 123–127).

This was the first known Australian qualitative study to explore the barriers, needs and solutions of 14 to 15 year-old YP in drought-affected rural and regional communities regarding MH education, help-seeking and support, specifically focussing on how to facilitate help-seeking. The key findings through the lens of YP, their teachers and parents were that help-seeking would best be enabled by a multi-pronged community approach to mental health education and support. More specifically, they wanted such mental health education and support to be locally available to all community members, free of charge, relatable, engaging, and empowering. Participants felt the need for mental health education to take a preventative approach, emphasise the development of mental health self-management skills, start in early school years, and be offered throughout all high school years to both YP and parents. For teachers in rural and regional areas, facilitating help-seeking for YP with mental health problems led to a tension between being students’ trusted, first point of call for mental health support on one hand and feeling overwhelmed and under-skilled regarding providing this support on the other. Following, a three-dimensional approach to improving the MH situation for YP in rural and regional communities in Australia by facilitating Engagement, Empowerment and Integration is discussed in context with existing literature (See Supplementary File : Principles and Facilitators).

Emotional engagement is crucial in the effectiveness of mental health programs, as for example shown by the literature on contact-based interventions [ 41 , 42 ]. Our study adds to this literature by demonstrating how relatability facilitates emotional engagement and, at least temporarily, this can break through stigma in rural and regional communities and improve YPs’ mental health help-seeking behaviour. Hearing the lived experience mental health stories of other YP, a contact-based intervention and core component of the batyr @school program [ 28 ], was by YP, their teachers and parents perceived as particularly relatable, engaging and meaningful. Our findings demonstrate how the perceived relatability of this intervention emotionally opened up YP towards sharing their own mental health stories. Given the high acceptance of this type of interventions from this sample, more research needs be conducted into how lived experience storytelling can be harnessed as a tool to make mental health programs relatable, and thus maximise YPs engagement and help-seeking behaviour. Further research into this area could be a valuable contribution to the currently inconclusive literature in the field of contact-based interventions [ 43 ].

An important variable in the relatability of lived experience storytelling and, more broadly, a mental health education intervention as a whole, is the delivery mode. While in this study, participants preferred face-to-face over online delivery, citing trust, confidentiality and interactivity as limiting factors of online programs, systematic review evidence suggests that online interventions can provide similarly effective anti-stigma results as face-to-face sessions [ 44 ]. More studies are needed to consolidate these findings. In any case, digital delivery has a potential to add extra scaffolding to face-to-face, providing further information and support to those who want it or don’t have access to face-to-face programs, for example, due to their geographical remoteness.

Another variable relating to emotional engagement in this sample of YP was the depth of insight mental health program facilitators had of the local communities they worked with. This included insight into the specific economic and environmental challenges rural and regional communities faced and how these challenges impacted their members. YP for example connected better with counsellors who “ understood drought ” [ 15 ] or who had experienced bushfires. Following this rationale, it seems advantageous to deliver locally tailored mental health education and support by professionals who are familiar with the culture and needs of individual communities [ 10 , 24 ]. Further research into the importance of this aspect is indicated.

Empowerment

While emotionally engaging YP is important, it is not enough. Corroborating with existing literature, the present study found that YP wanted to feel a sense of empowerment and active participation in the process of learning about and managing their mental health, and seeking help [ 10 , 45 , 46 ]. This sample of YP asked to be equipped with more confidence and skills around talking about and managing their mental health. They described wanting to feel a sense of choice and self-determination. Further, a desire for empowerment was raised by YP alongside their preference for informal, especially peer-based mental health support, which is also a common theme in the literature [ 11 , 45 , 47 , 48 ] as is the finding that such informal sources are notoriously under-resourced and under-qualified (e.g., [ 11 ]). Further investigation into whether (and how) YPs’ desire for self-determination and peer-based mental health support can be harnessed is warranted. For example, in the context of developing mental health youth ambassadors — as done in the Student Chapter of the batyr @school program [ 28 ] and the Canadian Stop Now and Plan (SNAP®) Boys (e.g., [ 49 ]). This could be especially useful in rural and regional communities where professional mental health services are scarce and YP rely on strong peer friendships. With appropriate professional guidance, there is potential for YP to grow into role models for ‘good’ mental health management, building from the bottom up a positive mental health culture in their social networks including on social media to reshape current, often maladaptive, mental ill health models and discourses [ 50 , 51 ]. YP’s desire for more educated parents also speaks to a bottom-up empowerment approach to tackling mental health issues in rural and regional communities where parents are often found to feel helpless when it comes to understanding and supporting their children’s mental health [ 14 , 19 , 20 ]. Clearly, empowerment is unlikely to result from one-off interventions. It rather needs a systematic, well-coordinated and integrated mental health approach as outlined following.

Integration

In line with existing literature, our findings highlight the need for a multi-dimensional integration and coordination approach to the provision of mental health education and support in rural and regional communities. An integrated approach requires first and foremost better coordination between school- and non-school-based mental health services so that YP are offered seamless and ongoing mental health education and support solutions rather than uncoordinated or one-off piecemeal [ 3 , 12 ]. The current findings also show that embedding mental health education in school curricula earlier, more prominently and consistently throughout schooling years was requested by participants as a way to equip YP with mental health knowledge and management skills before mental health issues arise. While this may not be unique to rural and regional areas, it could be an important avenue to tackling mental health stigma and increasing help-seeking when needed, particularly because these communities can be underpinned by social conservatism and lack anonymity [ 9 , 10 , 11 ].

Intensifying school-based mental health education and support, however, has its own issues. Teachers, including welfare officers, have been shown to increasingly navigate at the edge of their time availability and mental health competence, calling for training and resources on how to identify and provide early mental health support for students [ 18 , 21 , 52 , 53 , 54 ]. Recent nation-wide surveys of teachers and the public have shown a link between teachers’ mental health care role and burnout: as teachers assume an increasingly influential role in developing YPs’ social and emotional development, with the public relying on them to do so [ 55 ], teacher burnout and exodus of the profession is rising [ 56 ]. Furthermore, school counselling services cannot completely meet the burgeoning demands for students’ mental health support in rural and regional Australia. Frequently covering multiple rural and regional communities, school counselling services often operate on a one-day-per week basis, are booked out well in advance and, regularly stretched for time, experience concerning levels of burnout [ 57 , 58 ]. We recommend more research be done on the role that external/visiting mental health programs can play in rural and regional areas and thus build on selective studies that have shown that such programs can relieve school staff and emotionally engage YP in unique and novel ways that cannot easily be replicated by schools who are bound to rather uniform structures, curricula and lesson formats [ 25 ]. There might also be a place for the integration of social workers into a multi-pronged mental health approach with the aim to strengthen social connections and support between YP and their families, schools and communities [ 59 , 60 ].

Whichever integration model is chosen, attention must be given to the careful coordination of school-based with community-based and visiting services to ensure smooth transitions, consistency and continuation of mental health education and support for YP throughout their formative high school years and beyond [ 17 ]. Co-design, also known as participatory design, with key stakeholders including YP, teachers, parents and mental health organisations, could be an important way of ensuring mental health education and support programs meet the needs and wants of (school) communities and the YP they are targeting. Participatory design places stakeholders at the centre of the design process and is part of a paradigm shift towards collaborative bottom-up engagement whereby stakeholders jointly explore and create solutions to program design and service delivery [ 61 ]. Recommendations for best practice in clinical mental health service design already emphasise the need to involve YP in the planning, implementation and evaluation of services [ 62 ] and this must be extended to community-based interventions [ 63 , 64 , 65 ].

Strengths and limitations

A key strength of this study was the recruitment of a large sample of YP from a diverse range of rural and regional areas of Australia. Their perspectives were complemented and triangulated with those of rural and regional teachers and two parents. However, due to the conservative recruitment methods we used, our sample was likely biased towards participants with a certain familiarity with, and confidence in talking about, mental health issues. Other limitations of this study relating to the participants include the presence of a teacher in 4 out of 7 student interviews, possibly inducing some students to say different things to what they would have shared had they been interviewed without the presence of their teacher. Further to this, three adult participants were interviewed individually, as they needed to be conducted at a time that was convenient to them in order to participate. It is acknowledged that these interviews may glean more information and depth, compared to the focus groups. Further, although we followed processes to establish theme saturation [ 37 ], it is acknowledged that only two parents participated, and their views were not drastically distinct to other participating adults. Given the constraints of the evaluation, a greater focus on student recruitment was prioritised, however more diverse set of parent voices could have consolidated our finding on parental support of YP in drought affected rural and regional Australia.

The design of the evaluation research was such that some of the focus groups were conducted prior to the implementation of the batyr @school program to address the first research aim (i.e. to understand experiences and needs regarding mental health help-seeking, and explore mental health education, support and programs in rural and regional communities) and some were conducted after the batyr @school program was implemented as part of the program evaluation’s second aim. As both sets of focus groups were used in data analysis, results are interpreted through a lens of school-based mental health programs. This is important as although eco-systemic enablers to help-seeking (such as service provision models, family environment, community attitudes) are addressed in the findings and elsewhere in research focusing on rural and regional areas (e.g., [ 14 , 18 , 19 , 20 , 21 , 22 ]), the solutions presented in this discussion centre around what schools and the schooling systems can do in practice to enable better mental health education, programs and support. Further to this, topic guide development was influenced by the evaluation questions, not necessarily the literature concerning young people's help-seeking or general mental health and help-seeking when impacted by drought.

Another limitation is that for the focus groups that were conducted after batyr @school program implementation, the voices of students who had not attended the batyr @school program, and YP outside of the school system were lacking. There is evidence that such unheard voices form a significant portion of YP who need but don’t reach out for mental health support [ 47 , 66 , 67 ]. There is a need for further research into understanding how to engage and support these “silent” adolescent populations to best identify how to facilitate and support help-seeking. Further to this, future studies should consider investigating the needs of young people outside the 14–15 year age range, and seek to compare perspectives based on different demographics including young people who identify with minority groups such as young people with an Aboriginal and Torres Strait Islander background, LGBTQIA + young people, and young people who have a non-English speaking background, particularly those who have arrived as refugees.

Our study highlights important facilitators of mental health education and support for YP in drought-affected rural and regional areas of Australia. These include a multi-pronged, preventative, local community approach with an emphasis on early and ongoing development of YP’s self-management skills. We propose a three-dimensional Engagement, Empowerment, Integration approach which comprises: 1) maximising YP’s emotional engagement; 2) empowering YP to manage their mental health through developing practical coping skills; and, 3) integrating MH education and support programs into existing community and school structures and resources. Integration needs to be well coordinated in respect to time, place and capacity-related factors. Particular regard should be given to the important support roles teachers, school counselling services, social workers and parents can and already do play in the social and emotional development of YP.

Terms and abbreviations used

YP: Young person or young people. This term is used interchangeably with ‘adolescents’ and refers in this study to 14–15 year-old students who are enrolled in the high school years 9 and 10. The cited literature (Background and Discussion sections) refers to adolescents using a variety of age groups, ranging from age 10 to 19 years (reference [ 6 ]), to 14–18 years (reference [ 7 ]) and 12–18 years (reference [ 8 ]).

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Handley TE, Kay-Lambkin FJ, Inder KJ, Lewin TJ, Attia JR, Fuller J, et al. Self-reported contacts for mental health problems by rural residents: predicted service needs, facilitators and barriers. BMC Psychiatry. 2014;14(1):249.

PubMed   PubMed Central   Google Scholar  

Bowman S, McKinstry C, McGorry P. Youth mental ill health and secondary school completion in Australia: time to act. Early Interv Psychiatry. 2017;11(4):277–89.

PubMed   Google Scholar  

Gamm L, Stone S, Pittman S. Mental health and mental disorders—a rural challenge: a literature review. Rural Healthy People. 2010;2(1):97–114.

Google Scholar  

Morales DA, Barksdale CL, Beckel-Mitchener AC. A call to action to address rural mental health disparities. J Clin Transl Sci. 2020;4(5):463–7.

Anderson JK, Howarth E, Vainre M, Jones P, Humphrey A. A scoping literature review of service-level barriers for access and engagement with mental health services for children and young people. Child Youth Serv Rev. 2017;77:164–76.

Aguirre Velasco A, Cruz ISS, Billings J, Jimenez M, Rowe S. What are the barriers, facilitators and interventions targeting help-seeking behaviours for common mental health problems in adolescents? a systematic review. BMC Psychiatry. 2020;20(1):293.

Hudson J, Ingram V. Stigma-reduction & help-seeking in Australian classrooms. Sydney: Macquarie University, Centre for Emotional Health; 2017.

Quine S, Bernard D, Booth M, Kang M, Usherwood T, Alperstein G, et al. Health and access issues among Australian adolescents: a rural-urban comparison. Rural Remote Health. 2003;3(4):1–11.

Vanderbeck RM, Dunkley CM. Young people’s narratives of rural-urban difference. Child Geogr. 2003;1(2):241–59.

Waid C, Steven S, Sinclair L, Priest L, Petrie S, Carson DB, Peter, P. Report: Interventions for Rural and Remote Youth Mental Health. Carlton University; 2019. p. 1–9. https://doi.org/10.22215/sdhlab/2019.4 .

Francis K, Boyd C, Aisbett D, Newnham K, Newnham K. Rural adolescents’ attitudes to seeking help for mental health problems. Youth Stud Aust. 2006;25(4):42–9.

Salinas-Perez JA, Gutierrez-Colosia MR, Furst MA, Suontausta P, Bertrand J, Almeda N, et al. Patterns of mental health care in remote areas: Kimberley (Australia), Nunavik (Canada), and Lapland (Finland): Modèles de soins de santé mentale dans les régions éloignées: Kimberley (Australie), Nunavik (Canada) et Laponie (Finlande). Can J Psychiatr. 2020;65(10):721–30.

Aisbett D, Boyd CP, Francis KJ, Newnham K. Understanding barriers to mental health service utilization for adolescents in rural Australia. Rural Remote Health. 2007;7(1):1–10.

Salamone-Violi GM, Chur-Hansen A, Winefield HR. In this day and age why is it still so hard to find the right type of help? Carers’ perspectives regarding child and adolescent mental health services: a qualitative study. Adv Ment Health. 2017;15(1):58–70.

Carnie TL, Berry HL, Blinkhorn SA, Hart CR. In their own words: young people’s mental health in drought-affected rural and remote NSW. Aust J Rural Health. 2011;19(5):244–8.

Dean JG, Stain HJ. Mental health impact for adolescents living with prolonged droughtajr_1107 32.. 37. Aust J Rural Health. 2010;18:32–7.

Perkins A, Clarke J, Smith A, Oberklaid F, Darling S. Barriers and enablers faced by regional and rural schools in supporting student mental health: a mixed-methods systematic review. Aust J Rural Health. 2021;29(6):835–49.

Graham A, Phelps R, Maddison C, Fitzgerald R. Supporting children’s mental health in schools: teacher views. Teach Teach. 2011;17(4):479–96.

Boydell KM, Pong R, Volpe T, Tilleczek K, Wilson E, Lemieux S. Family perspectives on pathways to mental health care for children and youth in rural communities. J Rural Health. 2006;22(2):182–8.

Reardon T, Harvey K, Baranowska M, O’Brien D, Smith L, Creswell C. What do parents perceive are the barriers and facilitators to accessing psychological treatment for mental health problems in children and adolescents? a systematic review of qualitative and quantitative studies. Eur Child Adolesc Psychiatr. 2017;26(6):623–47.

Trudgen M, Lawn S. What is the threshold of teachers’ recognition and report of concerns about anxiety and depression in students? an exploratory study with teachers of adolescents in regional Australia. J Psychol Couns Sch. 2011;21(2):126–41.

Jorm AF, Kitchener BA, Sawyer MG, Scales H, Cvetkovski S. Mental health first aid training for high school teachers: a cluster randomized trial. BMC Psychiatry. 2010;10(1):51.

Ivancic L, Cairns K, Shuttleworth L, Welland L, Fildes J, Nicholas M. Lifting the weight: Understanding young people’s mental health and service needs in regional and remote Australia. 2018.

Boyd CP, Hayes L, Nurse S, Aisbett D, Francis K, Newnham K, et al. Preferences and intention of rural adolescents toward seeking help for mental health problems. Rural Remote Health. 2011;11(1):122–34.

Milton A, Yeung M, Conn K, Glozier N. batyr@school in Drought Affected Regional School Communities. Sydney: University of Sydney; 2021.

Vins H, Bell J, Saha S, Hess JJ. The mental health outcomes of drought: a systematic review and causal process diagram. Int J Environ Res Public Health. 2015;12(10):13251–75.

Edwards B, Gray M, Hunter B. The impact of drought on mental health in rural and regional Australia. Soc Indic Res. 2015;121(1):177–94.

batyr. batyr@school info pack. online at https://www.batyr.com.au/batyr-school/ : batyr; 2019.

Fielding N. Qualitative interviewing. In: Gilbert. N, editor. Researching social life (2nd edition). London: Sage; 2001. p. 123–44.

Brinkmann S. Qualitative interviewing: Oxford university press; 2013.

Buus N, Perron A. The quality of quality criteria: Replicating the development of the Consolidated Criteria for Reporting Qualitative Research (COREQ). Int J Nurs Stud. 2020;102: 103452.

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.

Khatamian FP. Challenges of recruitment and retention of university students as research participants: lessons learned from a pilot study. J Aust Libr Inf Assoc. 2018;67(3):278–92.

Biernacki P, Waldorf D. Snowball sampling: problems and techniques of chain referral sampling. Sociol Methods Res. 1981;10(2):141–63.

Miller WE, Kreiner DS. Student perception of coercion to participate in psychological research. N Am J Psychol. 2008;10(1).

Srivastava P, Hopwood N. A practical iterative framework for qualitative data analysis. Int J Qual Methods. 2009;8(1):76–84.

Francis JJ, Johnston M, Robertson C, Glidewell L, Entwistle V, Eccles MP, et al. What is an adequate sample size? operationalising data saturation for theory-based interview studies. Psychol Health. 2010;25(10):1229–45.

Birks M, Chapman Y, Francis K. Memoing in qualitative research: probing data and processes. J Res Nurs. 2008;13(1):68–75.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.

Gao CX, Filia KM, Bedi G, Menssink JM, Brown E, Rickwood DJ, et al. Understanding the complexity, patterns, and correlates of alcohol and other substance use among young people seeking help for mental ill-health. Soc Psychiatry Psychiatr Epidemiol. 2023:1–11.

Cooper J, Hunter C, Owen-Smith A, Gunnell D, Donovan J, Hawton K, et al. “Well it’s like someone at the other end cares about you.” a qualitative study exploring the views of users and providers of care of contact-based interventions following self-harm. Gen Hosp Psychiatry. 2011;33(2):166–76.

Chen S-P, Sargent E, Stuart H. Effectiveness of school-based interventions on mental health stigmatization. Handbook of school-based mental health promotion: Springer; 2018. p. 201–12.

Jorm AF. Effect of contact-based interventions on stigma and discrimination: a critical examination of the evidence. Psychiatr Serv. 2020;71(7):735–7.

Janoušková M, Tušková E, Weissová A, Trančík P, Pasz J, Evans-Lacko S, et al. Can video interventions be used to effectively destigmatize mental illness among young people? a systematic review. Eur Psychiatry  2017;41(1):1–9.

Martínez-Hernáez A, DiGiacomo SM, Carceller-Maicas N, Correa-Urquiza M, Martorell-Poveda MA. Non-professional-help-seeking among young people with depression: a qualitative study. BMC Psychiatr. 2014;14(1):124.

Orlowski S, Lawn S, Antezana G, Venning A, Winsall M, Bidargaddi N, et al. A rural youth consumer perspective of technology to enhance face-to-face mental health services. J Child Fam Stud. 2016;25(10):3066–75.

Rothì DM, Leavey G. Mental health help-seeking and young people: a review. Pastor Care Educ. 2006;24(3):4–13.

Rickwood D, Deane FP, Wilson CJ, Ciarrochi J. Young people’s help-seeking for mental health problems. Aust E-J Adv Mental Health. 2005;4(3):218–51.

Sewell KM, Fredericks K, Mohamud A, Kallis J, Augimeri LK. Youth experiences in evaluating the Canadian SNAP® Boys youth leadership program. Child Adolesc Soc Work J. 2020;37(3):301–14.

Jadayel R, Medlej K, Jadayel JJ. Mental disorders: a glamorous attraction on social media. J Teach Educ. 2017;7(1):465–76.

O’Reilly M, Dogra N, Whiteman N, Hughes J, Eruyar S, Reilly P. Is social media bad for mental health and wellbeing? exploring the perspectives of adolescents. Clin Child Psychol Psychiatry. 2018;23(4):601–13.

Rothì DM, Leavey G, Best R. On the front-line: Teachers as active observers of pupils’ mental health. Teach Teach Educ. 2008;24(5):1217–31.

Shelemy L, Harvey K, Waite P. Supporting students’ mental health in schools: what do teachers want and need? Emot Behav Diffic. 2019;24(1):100–16.

Loades ME, Mastroyannopoulou K. Teachers’ recognition of children’s mental health problems. Child Adolesc Mental Health. 2010;15(3):150–6.

Heffernan A, Bright D, Longmuir F, Magyar B. Perceptions of Australian schooling: What matters in 2021. Monash University; 2021.

Longmuir F, Gallo Cordoba B, Phillips M, Allen KA, Moharami M. Australian Teachers’ Perceptions of their Work in 2022. Monash University, https://bridges.monash.edu/articles/report/Australian_Teachers_Perceptions_of_their_Work_in_2022/21212891 ; 2022.

Earle K-M. Burnout in NSW school counsellors: relationships between mindfulness, career-sustaining practices and work setting. J Stud Engagem Educ Matters. 2017;7(1):71–96.

King C, Subotic-Kerry M, O’Dea B. An exploration of the factors associated with burnout among NSW secondary school counsellors. J Psychol Couns Sch. 2018;28(2):131–42.

Maple M, Pearce T, Gartshore S, MacFarlane F, Wayland S. Social work in rural New South Wales school settings: addressing inequalities beyond the school gate. Aust Soc Work. 2019;72(2):219–32.

Smith J. Locational disadvantage and the role of school counsellors and social workers: “Doing whatever it takes” to support children, families and communities. Commun Child Fam Aus. 2018;12(1):43–63.

Milton AC, Stewart E, Ospina-Pinillos L, Davenport T, Hickie IB. Participatory design of an activities-based collective mentoring program in after-school care settings: connect, promote, and protect program. JMIR Pediatr Parent. 2021;4(2):e22822.

Early Psychosis Guidelines Working Group. Australian clinical guidelines for early psychosis. Melbourne, Australia: Orygen The National Centre of Excellence in Youth Mental Health; 2016.

Corrigan P. Effect of contact-based interventions on stigma and discrimination. Psychiatr Serv. 2020;71(12):1324–5.

Freebairn L, Occhipinti J-A, Song YJC, Skinner A, Lawson K, Lee GY, et al. Participatory methods for systems modeling of youth mental health: implementation protocol. JMIR Res Protoc. 2022;11(2):e32988.

Milton A, Zelalem M, Ballesteros K, McClean T, Hartog S, Bray-Rudkin L, et al. Supporting children’s social connection and well-being in school-age care: mixed methods evaluation of the connect, promote, and protect program. JMIR Pediatr Parent. 2023;6:e44928.

O’Connor PJ, Martin B, Weeks CS, Ong L. Factors that influence young people’s mental health help-seeking behaviour: a study based on the health belief model. J Adv Nurs. 2014;70(11):2577–87.

Rickwood DJ, Deane FP, Wilson CJ. When and how do young people seek professional help for mental health problems? Med J Aust. 2007;187(S7):S35–9.

Download references

Acknowledgements

We thank the students, staff and families from the participating NSW public schools. We also thank batyr and their enthusiastic team who have helped on this project including.

Amy Brown, India Smith, Zoe Dunnill, Sarah Morris and Tom Riley. We would also like to extend our thanks the Department of Education team for their ongoing support of this research.

This study was funded by a grant from the Australian Department of Education and batyr, and was partially supported by the Australian Government through the Australian Research Council's Centre of Excellence for Children and Families over the Life Course (Project ID CE200100025).

Author information

Authors and affiliations.

Central Clinical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia

Christiane Klinner, Nick Glozier, Margaret Yeung, Katrina Conn & Alyssa Milton

Australian Research Council (ARC), Centre of Excellence for Children and Families over the Life Course, Sydney, Australia

Nick Glozier & Alyssa Milton

NSW Department of Education, NSW, Australia

Katrina Conn

You can also search for this author in PubMed   Google Scholar

Contributions

AM conceived this study. AM and NG designed this study. AM conducted the interviews oversaw the interpretation of the data at all stages. MY supported the interviews and conducted a preliminary analysis of data with AM, KC and NG. CK analysed the data and drafted the manuscript. CK and AM refined and revised the manuscript with the help of NG, MY and KC.

Corresponding author

Correspondence to Alyssa Milton .

Ethics declarations

Ethics approval and consent to participate.

Ethical approval for this study was provided by the University of Sydney Human Research Ethics Committee (Protocol number 2020/607). Subsequent approval was provided via the NSW State Education Research Applications Process (SERAP Number 2020373). All participants provided written informed consent. The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008. Informed consent was obtained from all study participants.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1., additional file 2., additional file 3., additional file 4., additional file 5., rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Klinner, C., Glozier, N., Yeung, M. et al. A qualitative exploration of young people’s mental health needs in rural and regional Australia: engagement, empowerment and integration. BMC Psychiatry 23 , 745 (2023). https://doi.org/10.1186/s12888-023-05209-6

Download citation

Received : 12 April 2023

Accepted : 21 September 2023

Published : 13 October 2023

DOI : https://doi.org/10.1186/s12888-023-05209-6

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Youth mental health
• High school students
• Help-seeking
• Mental health education and support
• Rural and regional Australia
• Qualitative research

BMC Psychiatry

ISSN: 1471-244X

• Submission enquiries: [email protected]
• General enquiries: [email protected]

• Research article
• Open access
• Published: 01 July 2020

Lived experiences: a focus group pilot study within the MentALLY project of mental healthcare among European users

• Malin Axelsson   ORCID: orcid.org/0000-0001-5493-8334 1 ,
• Viktor Schønning 2 , 3 ,
• Claudi Bockting 4 ,
• Ann Buysse 5 ,
• Mattias Desmet 6 ,
• Alexis Dewaele 5 ,
• Theodoros Giovazolias 7 ,
• Dewi Hannon 5 ,
• Konstantinos Kafetsios 8 ,
• Reitske Meganck 6 ,
• Spyridoula Ntani 7 ,
• Kris Rutten 9 ,
• Sofia Triliva 7 ,
• Laura Van Beveren 9 ,
• Joke Vandamme 5 ,
• Simon Øverland 3 , 10 &
• Gunnel Hensing 2  

BMC Health Services Research volume  20 , Article number:  605 ( 2020 ) Cite this article

7344 Accesses

5 Citations

1 Altmetric

Metrics details

Mental healthcare is an important component in societies’ response to mental health problems. Although the World Health Organization highlights availability, accessibility, acceptability and quality of healthcare as important cornerstones, many Europeans lack access to mental healthcare of high quality. Qualitative studies exploring mental healthcare from the perspective of people with lived experiences would add to previous research and knowledge by enabling in-depth understanding of mental healthcare users, which may be of significance for the development of mental healthcare. Therefore, the aim of the current study was to describe experiences of mental healthcare among adult Europeans with mental health problems.

In total, 50 participants with experiences of various mental health problems were recruited for separate focus group interviews in each country. They had experiences from both the private and public sectors, and with in- and outpatient mental healthcare. The focus group interviews ( N  = 7) were audio recorded, transcribed verbatim and analysed through thematic analysis. The analysis yielded five themes and 13 subthemes.

The theme Seeking and trying to find help contained three subthemes describing personal thresholds for seeking professional help, not knowing where to get help, and the importance of receiving help promptly. The theme Awaiting assessment and treatment contained two subthemes including feelings of being prioritized or not and feelings of being abandoned during the often-lengthy referral process. The theme Treatment: a plan with individual parts contained three subthemes consisting of demands for tailored treatment plans in combination with medications and human resources and agreement on treatment. The theme Continuous and respectful care relationship contained two subthemes describing the importance of continuous care relationships characterised by empathy and respect. The theme Suggestions for improvements contained three subthemes highlighting an urge to facilitate care contacts and to increase awareness of mental health problems and a wish to be seen as an individual with potential.

Facilitating contacts with mental healthcare, a steady contact during the referral process, tailored treatment and empathy and respect are important aspects in efforts to improve mental healthcare. Recommendations included development of collaborative practices between stakeholders in order to increase general societal awareness of mental health problems.

Peer Review reports

Mental health problems are among the dominant causes of non-fatal health loss in Europe [ 1 ] affecting 17.3% ( n  = 84 million) of the European population [ 2 ]. The high prevalence of mental health problems and associated needs for mental healthcare pose a significant challenge for politicians and healthcare providers all over Europe [ 2 , 3 ]. Still, a large proportion of Europeans lack access to high quality mental healthcare. Delayed or ineffective treatment of mental health problems has negative consequences for the individual but also for society, as it affects work participation and contributes to increased sickness absence [ 3 ].

The World Health Organization (WHO) has developed a framework, Availability, Accessibility, Acceptability and Quality of healthcare (AAAQ), as an analytic tool to clarify how the right to health [ 4 ], as stated in the United Nations (UN) declaration of universal human rights §25 [ 5 ], can be understood in terms of provision of healthcare (Table  1 ). The possibility to provide healthcare of high AAAQ standards is related to the overall healthcare system in each country, which in turn depends both on the economic situation and on political decisions [ 4 ]. The individual’s right to mental healthcare is in any case indisputable and ratified by the UN, the WHO and the European Union (EU) levels [ 4 ]. However, according to a report from the Organisation for Economic Co-operation and Development (OECD) many individuals with mental health problems do not receive necessary treatment, indicating an international treatment gap of approximately 50% depending on the type of mental health problem [ 2 ]. In a cross-sectional study conducted in six European countries aimed at estimating the unmet need for mental healthcare at population level, 3.1% of the adult general population reported an unmet need for mental healthcare and 6.5% of those having mental problems were defined as being in need of mental healthcare [ 6 ]. Europeans with mental health problems who have received treatment regarded the effectiveness of mental healthcare as low [ 7 ]. Concerns regarding the quality of mental healthcare provided in primary care have also been raised by patients who experienced that they were stuck with ineffective medication treatments instead of being provided psychosocial care [ 8 ]. This coincides with Barbato and colleagues [ 9 ] who state that Europeans seeking help for their mental health problems are often prescribed ineffective treatments. Importantly, if patients experience the mental health treatment as ineffective they are more likely to discontinue their treatment [ 10 ], which in turn could jeopardize their recuperation.

There are different factors leading to delay in mental healthcare seeking, such as, structural barriers in terms of availability of mental healthcare [ 10 , 11 ], economic barriers [ 10 , 12 ], and transportation [ 12 ]. Attitudes in terms of a wish to deal with the problem yourself [ 10 ] and self-stigma constitute other barriers in seeking professional help for mental problems [ 10 , 12 , 13 , 14 , 15 ]. Rüsch et al. [ 16 ] made a distinction between social stigma and the self-stigma that can occur because of the negative attitudes held by other people. Self-stigma has been associated with both less openness to and less perceived value of professional treatment for mental problems [ 17 ]. Another phenomenon that has been forwarded as relevant to help-seeking behaviour is mental health literacy [ 18 ]. Indeed, Xu and colleagues [ 19 ] reviewed the effectiveness of interventions aimed at promoting help-seeking for mental health problems and found that increasing mental health literacy had a positive effect on professional help-seeking.

Important perspectives have emerged from previous qualitative studies. Newman et al. [ 11 ] as well as Gilburt et al. [ 20 ] have highlighted that the relationship between service users and professionals within mental healthcare is important as it form a basis for interaction and support, which is important to combat mental health problems. A qualitative study on mental health services provided to immigrants in 16 European countries [ 21 ] found consistent challenges to ensure optimal treatment for this marginalized group. The authors further suggest that recommendation for best practice may be appropriate at a European level. The majority of previous qualitative studies in this field capturing experiences from people with lived experiences have emerged from single countries, such as the United Kingdom and Ireland. Qualitative studies add to the research field but few studies take a cross-country perspective.

In summary, the burden of mental health problems in Europe challenges healthcare to offer high-standard mental healthcare corresponding to the AAAQ framework but quality improvement should be a continuous effort [ 4 ]. So far, most studies and reports of mental healthcare provision in Europe are based on quantitative data. The European Mental Health Action Plan 2013–2020 [ 3 ] stipulates that research in mental health assessing needs is to be supported and proposes that persons with mental health problems and their families are involved in quality control. Therefore, conducting qualitative studies that elicit an in-depth exploration of the perspectives of people with lived experiences of mental health problems and the use of mental health services would add to previous research and knowledge by increasing awareness and utilizing the expertise of this group. This can contribute to an in-depth understanding that can inspire and form the basis for quality improvement and development of mental healthcare in Europe.

The aim of this study was to describe experiences of mental healthcare among adult Europeans with mental health problems.

The current study is part of MentALLY - Together for better mental healthcare - a European collaborative effort between Belgium, Cyprus, Greece, the Netherlands, Norway and Sweden. MentALLY is a pilot project that has received funding from the European Parliament and the intention of the project is to gather qualitative data to improve European mental healthcare ( http://mentally-project.eu ). The current study is based on qualitative focus group interviews.

Participants

The total number of participants ( N  = 50) were adults recruited for separate focus group interviews in the six countries. All participants had personal experiences of mental health problems and treatment from the mental healthcare services in their countries. The participants’ experiences were varied in type, length and time of contacts with the health care. Table  2 summarizes the recruitment procedures in each country and presents the study population. In all countries, the recruitment was done in several different ways to reach persons that might be interested in sharing their experiences. In all countries the initial contact was followed by written information about the MentALLY project after which the persons made their decision to participate.

Data collection

Data were collected through focus group interviews between April and November 2018. In total seven focus groups lasting between 73 and 141 min were conducted, each consisting of 4–14 participants (Table 2 ). MentALLY is a pilot project including six countries to test whether the study design and methods were useful in a cross-country approach. We therefore choose to limit the data collection to one focus group per country with one exception in Cyprus where two focus groups were conducted. The focus groups were facilitated by a social psychologist and a clinical psychologist in Greece, by a social psychologist in Cyprus, by a psychologist in Belgium, by registered nurses in Sweden, by a clinical psychologist, a psychology student and a physiotherapist in Norway and in the Netherlands by a communication scientist supervised by a clinical psychologist. Number of facilitators in each focus groups are accounted for in the Table 2 . All focus groups were held in the native language of each country.

A special effort was made to create a pleasant and hospitable atmosphere. Each focus group discussion began by providing information about the MentALLY pilot project and the interview procedures. Permission to audio record the interview was provided by the participants. They also provided written informed consent and demographic information including their age, sex, mental health problems and type of mental healthcare they had experienced. Registration of diagnoses or treatment site was not included in the ethics approval application in Norway, and this information was therefore not gathered at individual level.

The focus group interviews followed an interview guide that was developed in English by the MentALLY teams in collaboration. Thereafter the interview guide was translated into the different native languages using back-translation techniques [ 22 ]. The interview guide is presented in Table  3 . The interviews started with opening questions regarding positive and negative experiences with mental healthcare to inspire the participants to start talking and thinking about their experiences of mental healthcare. Gradually the questions became more focused relating to the organization of mental healthcare, changes needed to reach the goal of optimal mental healthcare and questions relating to the participants’ experiences of access to mental healthcare, issues related to diagnosis and referral, as well as treatment and collaboration. The interviews ended with questions about uncovered topics and the most important aspects of mental healthcare were discussed [ 23 ]. The audiotaped interview material was transcribed verbatim and translated into English in each country. Each participant was given a code to preserve confidentiality.

The initial analysis of the transcripts in the native language was conducted by the MentALLY teams in each country separately, except for the data from Cyprus and the Netherlands that were analysed by the Greek and Belgian teams, respectively. The transcripts and the analysis from each country were then translated into English to enable the creation of a common result covering all countries. The analyses followed the thematic analysis as described by Braun and Clark [ 24 ]. Adhering to a common analysis template in all MentALLY teams, the analysis was driven by an analytic interest to acquire a more detailed understanding [ 24 ] of experiences of access, diagnosis and referral, treatment and collaboration regarding mental healthcare.

Ethical considerations

Ethical approvals were granted from the Review Boards at Ghent University in Belgium, the University of Crete in Greece (Επι.Δ.Ε. i.e. Ethical Committee, 6/2018/16-05-2018) and the Regional Ethical Review board in Gothenburg in Sweden (474–18). In Cyprus, the Mental Health Services of the Ministry of Health gave permission to conduct the study (4.2.09.37/7). In the Netherlands, an application was sent to the Medical Ethical Committee of Academic Medical Hospital of the University of Amsterdam and an exemption was given as all subjects were healthy and non-invasive procedures were used (no number was given due to the exemption). The Regional Committees for Medical and Health Research Ethics in Norway deemed the project outside the realm of medical ethics assessment. Therefore, an assessment and approval from data protection officer at the Norwegian Institute of Public Health was collected. Following written and verbal information about the study, all participants signed an informed consent before the focus group interviews started.

The results are based on the thematic analyses of focus group interviews where a total of 50 participants with lived experiences of mental health problems and of receiving mental healthcare participated. As a group, the focus group participants had experiences from mental healthcare in both private and public sectors, and from in- and outpatient mental healthcare for various mental health problems. The participants had experiences of a wide range of mental healthcare treatment offers. Figure  1 depicts the experiences across five themes and 13 subthemes.

Illustration of themes and subthemes describing experiences of mental healthcare in six European countries

Seeking and trying to find help

The participants shared their experiences of what hindered or helped them in seeking and trying to find help for their mental health problems. Some of these experiences were related to accessibility to mental healthcare.

Overcoming personal thresholds

To seek help for mental health problems was described as a process in which the participants had to overcome different personal thresholds. According to some of the participants, one of the first thresholds to overcome was to accept and acknowledge that they were facing mental health problems that required professional care. Furthermore, they needed to be courageous enough to make a decision to contact a healthcare provider, which for some was an easier threshold to overcome than for others.

“You admit to yourself that something is wrong, and you go to a psychiatrist – the way you go to a GP or any other doctor. Why not? If you have a problem, you need to do that in order to get well”. (3 Cyprus).

“There is a threshold for having the courage to contact the care system to begin with.” (4 Sweden)

“The first time I came with a very deep depression, it was difficult to seek help, it was shameful.” (4 Norway).

This process and its thresholds consisted of both internal and external aspects, which could delay or even prevent the participants from seeking mental healthcare. Some were experienced in a context of negative attitudes, stereotypes and other aspects of public stigma surrounding mental health problems.

“In Cyprus, people with mental health issues are stigmatized” … // … “This is a big problem in Cyprus. Someone may suffer from a mild depression and leave it without treatment because of what society is going to think”. (1 Cyprus).

“...// … break through certain taboos, because I believe it is the biggest problem in Belgium. To break through the taboo of psychic health.” (1 Belgium).

Besides a process of acceptance and courage lived in a context of public stigma, there were other personal thresholds for seeking mental healthcare. For some of the participants these thresholds were related to previous negative experiences with the use of mental healthcare, while others had problems affording the care they needed and consequently were prevented from accessing necessary mental healthcare.

“ … // … this is a very important thing, that you...that there are far too many people who are terrified to have anything to do with mental healthcare, because...and then they have been there, and they know what they are talking about.” (1 Sweden).

“Ah yes just financial accessibility for everyone he, because that is the first block for many people because we may have now...// … many people may be lucky enough to have an insurance or I don’t know, but there are also people who have no insurance and mutuality that is refunded … // … ”(2 Belgium).

“I couldn’t get an appointment in the public sector. I went to the private sector. … // … There are people that haven’t got the financial resources to get help (in the private sector)”. (4 Greece)

“ … // … you don’t have the money to go to a clinic. So what can you do? Where can you go?” (6 Cyprus).

Where do I turn?

Related to the above described difficulties uncertainties about where to turn to seek care and treatment i.e. access to mental healthcare were brought up in the focus group discussions. Experiences of not finding the way through “the wilderness” of healthcare offers was mentioned and, as was to not know at all where to turn to receive help. Some found information by chance or by persons in their network. A common experience in the studied countries was the lack of easy found information about how to access mental healthcare.

“ I found it by myself. Circumstances helped me, a higher power if you want. I went to an event, found a pamphlet and I started going there. ” (1 Greece).

“A friend told me about it – I had no idea such a facility existed. ” (2 Cyprus).

“Well, I am thinking about when you don’t know exactly where to turn to. Where do I go, what should I do, who should I talk to? It does seem pretty unclear. Where do I begin, where do I call?” (2 Sweden).

“I think it is a... a wilderness, that you don’t know where to go.” (3 Belgium).

“And plenty exist, but we need to find what is what and what exists,” (1 Norway).

“Sometimes unfortunately you get tips that have worked for other, but did not help me. But I do notice that, I have been helped a lot by these tips by others.” (1 Netherlands).

The importance of getting help in time

To get help just in time was brought up as an important aspect of access to mental healthcare. Quite some time could pass before contact with a healthcare provider was made. Reasons were associated with the thresholds of acceptance, courage and public stigma that had to be overcome before help was sought, and in addition was the time it took to figure out where to find help. There were also acute situations when urgent contact with mental healthcare was made. Nonetheless, immediate access to mental healthcare was always regarded as crucial. When they contacted a healthcare provider the situation was described as acute or highly open in the sense that the need for help and the wish to get help was combined. This was described as important to combat the mental health problems with support of professionals. However, there were disagreements regarding waiting times as the participants had different experiences of waiting times when contacting mental healthcare. Some had very good experiences of getting help in time and had not been confronted with waiting times.

“...I haven’t been confronted with waiting times.” (5 Belgium).

“I called in the morning, made an appointment and came here (mental healthcare) on the same day. It was all very easy ”. (3 Cyprus).

“I didn’t have the same experience. My psychiatrist immediately helped me.” (3 Netherlands).

For others it was more difficult to access mental healthcare due to long waiting times, which appeared to be very common. They described the waiting as being in a desperate situation characterised as a matter of survival or death. Additionally, the long waiting times for treatment resulted in strenuous and unbearable situations for their relatives.

“Yes, I had to wait several times for a long time. But at the same time, 3 weeks are hellish as well. When you are suicidal for 3 weeks, it becomes too much.” (1 Netherlands).

“ There are people who have died waiting to be put on the waiting list (to enter a rehabilitation program for their addiction). There are mothers who are really begging out there (in the rehabilitation centre) elderly people praying and crying. ” (3 Greece).

Even as a patient within the psychiatric care system, it was not easy to access the care they needed to deal with their mental health problems. During the experienced long waiting times feelings of resignation emerged. The open window of a need and wish for help seemed to be time dependent.

“You cannot find the doctors and the professionals when you need them. They are not there when you need them. You need them and you feel they have abandoned you.” (2 Greece).

“ … and when I looked for care through the care system, I didn’t even get an appointment with a psychologist before I gave up and began to self-medicate instead, sort of thing. It is these waiting times that I would emphasize have really been a major obstacle for me.” (3 Sweden)

Awaiting assessment and treatment

Other experiences of the mental healthcare in the focus groups performed in six different European countries were related to how the mental healthcare functioned. When the participants eventually got in contact with healthcare and asked for help to fight their mental health problems, some of them experienced that their health problems were not prioritized and not always carefully assessed while others had experiences of being prioritized and properly cared for. When being referred to another level of care, feelings of being abandoned arose for some participants during the waiting time, because they experienced that no one cared for them. According to these participants, there seemed to be a lack of support in between the appointments and different levels of care. On the contrary, other participants described a smoother referral process to the level of care they deemed correct.

Feelings of being prioritized or not

Some participants expressed that healthcare professionals did not take mental health problems as seriously as somatic conditions. That experience led in turn to the feeling that healthcare providers did not prioritize mental health problems. In contrast, other participants shared experiences of being prioritized and thus being more or less immediately assessed and referred to correct level of care. Thus, the feelings of being or not being prioritized in care were individual experiences but also understood as structural differences. Some participants felt that they had to exaggerate their problems, and especially the risk of committing suicide, to receive help when being in need. In opposition, other participants shared their positive experiences of how well they had been cared for.

“I am aware that it isn’t something that is seen with the eye, but still if others can see it, a caregiver should as well. I find that so hard to understand. When it comes to physical problems, they do not just send someone home, they do not say yes, it’s cancer, just rest up a bit and perhaps the tumour goes away.” (1 Netherlands).

“I would want it to be easier to get help. Because I have said so many times that I want help, but then I do not get it. And they say to the patients: “have you tried taking your own life”, and “no, then you do not get to be admitted”. But you need to be admitted before you get so sick, in order to avoid getting sick.” (1 Norway).

“I think that I have received a lot of good help, actually. I have been treated in the mental health system for many, many, many years, in periods … // … I am still in contact with a psychiatrist for medication and stuff, and I think that I have received a lot of help and support … //...well, mainly through the open mental health system .” (6 Sweden)

“I have a few positive stories. For me, I was always referred to a good institute or caregiver. Well not always, but most of the time. And when I was sent to the wrong place, they would send me through to the correct place quite quickly. It never ended up being terrible. Sometimes you hear those stories of how it turns out bad. But it went well, even with files. The referrals in general were good.” (1 Netherlands).

“I’ve also been admitted to the psychiatric ward of the general hospital. That was very nice. Everything was ready and waiting for you.” (4 Cyprus).

Experiences that nurtured the perception of not being a priority were related also to the quality of mental healthcare, and related negative experiences. It was discussed that a careful anamnesis was required to diagnose mental health problems accurately and that preferably a psychiatrist should be involved from the beginning of the diagnostic process. However, the experience of the diagnostic procedure did not always correspond to these requirements. It was argued that time limitations and associated deficiencies in diagnostics and referrals from general practitioners were a major problem, and better support for general practitioners was mentioned as important.

“When the doctor saw me, he said “you have schizophrenia”. He just looked at me! He did not examine me for more than one minute and he diagnosed me with schizophrenia.” (1 Greece).

“ … // … that the patient is heard, and seen and gets good help on time, and gets good referrals. The primary doctors need to be strengthened so the patient gets the correct help in the specialist healthcare service that is very, very important.” (2 Norway).

Abandoned in nowhere land

The referral process was experienced as long and tiresome with long gaps between inpatient and outpatient care by some of the participants. Without a functional care chain, some experiences concerned feelings of being trapped and abandoned in nowhere land struggling with the mental health problems without support from any healthcare professionals.

“That it is very difficult, that you must just keep on nagging and fighting, to fight a lot and you don’t have the strength to do that. I find that it is a huge problem, when you are waiting, because you are in the care queue and waiting for a referral, and waiting for something to happen with the referral, and then you just have to keep at them, you have to call, you have to nag, and you don’t have the strength, so you just wait, quiet and being nice. So not much happens. That’s my experience.” (2 Sweden).

“It can take a long time before the assessment happens, and in the meantime the patient sits around and is not getting the help he should have.” (6 Norway).

“I had experienced it as different islands at the same time. No contact between general practitioner and therapist … // … There was no contact in general between anyone. They all just did their thing, and without me having any say.” (6 Netherlands).

Treatment: a plan with different parts

The participants shared their experiences of what aspects in the treatment for their mental health problems that had helped and hindered their recuperation. As previously mentioned, there were thresholds to overcome aggravated by public stigma. Once overcome the time was described as crucial since care was often sought late and when symptoms were severe, and in some cases even life threatening. But also in less severe situations the window between need and motivation to seek help could be closed due to experiences of unfair treatment or feelings of being abandoned. However, the participants also experienced it as a long process to recuperate from the mental health problems. During the discussions in all focus groups, the participants highlighted that it required a combination of different kinds of help and treatment to get better. Depending on individual needs, it seemed important that the treatment was individually planned and that a combination of treatments was the most effective.

Medication: the first line of treatment

Although the participants argued that an individualized treatment entailing different parts was needed to recuperate, some of them seemed to experience that medication was usually the first line of treatment prescribed. However, there was a variation of experiences regarding the medication treatment. On one hand, some of the participants recognized the importance of medication because either it had improved their condition or because it helped them to avoid negative outcomes i.e. relapses. On the other hand, some of them argued that there was an over-prescription of medication – sometimes against their will.

“I would be unable to function right now without the medication. I’d be much worse if I didn’t take it. Much worse. The medication I’m taking helps me a lot. If it weren’t for it, I’d take drugs, or start drinking. Taking it is in my best interest – not the doctor’s or the pharmacist’s.” (4 Cyprus).

“ … // … they press in more and more medicines, and if you try to say, wait a bit, I want some form of therapy or tool so that I can get somewhere with my problem, well then they just prescribe more medication that they don’t follow up and it just gets worse and they don’t check up, sort of thing, whether those medicines work together.” (2 Sweden).

An interplay between human resources

In all focus groups, the participants emphasized that medication regimens were not the only solution and therefore they discussed the elements in mental healthcare that they regarded as necessary for them to get better besides medications. Naturally, there was a variation of what elements that was considered as beneficial to get better from the mental health problems. They discussed that different resources were needed to meet their treatment needs and an interplay between resources was seen as treating the patient as a whole person. Among the resources mentioned to be involved in the treatment was healthcare professionals with experiences and competencies from different specializations. Additionally, patients themselves should also play an active part and participate in the treatment planning.

“In principle, we cannot treat someone with medications without psychological support. I think that everyone must do their part. That is, a person arrives at the doctor, that is, the psychiatrist, he will do his own work, and there must be a psychologist. What does this person have behind him? He has family, children, and legal issues? There should be a social worker who has a different role from the psychologist. It is a different job. … // … There should be different specialties.” (3 Greece).

“I think there is much in being able to take part in your own treatment, that you are a part of planning the treatment, and actually writing your own treatment together with your therapist, what sort of treatment you want, what is written in the journal, to be a part of planning the treatment course. However, it will probably be like that now in the set clinical pathways, that you are able to take part in your own treatment.” (3 Norway).

The continued discussion focused on the benefits and challenges with involvement of significant others in the treatment. Some participants considered significant others as an essential resource. Without them they risked fighting the mental health problems on their own. They argued that their next of kin should be invited to be involved so they could have a better understanding of the situation but also so they could provide the necessary support. In contrast, the involvement of significant others was also experienced as challenging as they could contribute to further distress by being unsupportive. Another challenge, highlighted by some of participants, was to be open about mental health problems and talk with their significant others about their problems.

“Perhaps professionals could require you bring someone with you during the visit. Things such as a visit from the GP. You first visit a specialist and you forget half of it so that they ask you to make a checklist. Because you are in such a bad place. I have had that problem for my whole life, making a list but never finishing it. Take your mother with you, is how I would describe it. That should become a standard. It is a smart thing to do.” (5 Netherlands)

“And it’s also a little hard to hear people tell you that it’s nothing and you’ll get over it. Personally, I had to face that too. My environment didn’t realize I was going through something serious … // … I had to fight on my own in order to make it”. (3 Cyprus).

“ … // … the word taboo, as long as we don’t break through it and don’t dare to talk with our children and our relatives” (1 Belgium).

Another element in the treatment that was regarded as essential and helpful to get better was inclusion of people who were experts by experience.

“Actually the best therapists are those who have experienced it themselves … and sometimes I wonder that is a kind of … if my psychiatrist is sitting in front of me, that is book knowledge … that person can never know what a depression is, that person can never know what an eating disorder is, he knows it but just due to experience, but that person cannot … at first-hand experience it. And the biggest help I got was actually from people with the same problems.” (1 Belgium).

An important part in the treatment, which facilitated for them to get better was the encouragement of social health i.e., contacts with their social context and labour market. When struggling with mental health problems, it was sometimes difficult to maintain one’s social health. Getting help to maintain or re-establish contacts with the labour market and social networks was considered essential.

“But it is important to address all problems the person is presenting. It is not certain that the psychiatry or the substance abuse is the worst. It could be economy, it could be living conditions, there are many other things that play a role, it is not only psychiatry”. (1 Norway)

“...// … even if the Social Insurance Agency is outside the care system it is an extremely important part of care, because it is the whole reason that you have security in being able to pay your bills and stuff.” (1 Sweden).

Treatment in agreement

The importance of consent in different stages of the therapeutic process was discussed during the focus groups. The option to interrupt the therapy and voice concerns towards their care provider was emphasized. Moreover, experiences of involuntary hospitalization and treatment had left some of the participants traumatized and very critical about the practices and the legislation that support these types of interventions. Negative experiences were also related to the reluctance to seek care discussed above.

“I think that is also still a big problem that a lot of people don’t dare to take a step themselves to … to stop with that... and say, ‘he isn’t doing anything for me, I have to go to somebody else.” (7 Belgium).

“This distressed me too much because they took me with handcuffs; they took me in a patrol car as if I was some criminal … // … I have yet to recover from that hospitalization. I have completely compromised; I have fully complied with what the doctor said I did what she told me but deep inside me I am not well to be honest. I’m not well. And this hospitalization was a horrible experience for me. And I have not been able to overcome it and I will never overcome it. They brought me in with handcuffs as though I was a criminal. There should be a court hearing when there is an involuntary hospitalization. No one has called me to defend myself in any court or trial. These things happen only in Greece. This only happens in Greece”. (1 Greece).

Continuous and respectful care relationship

When combatting the mental health problems, the participants described that they were in an extremely vulnerable situation. They had overcome the first reluctance to admit their problem and recognized a need to get help as soon as possible. For some of the participants, earlier negative experiences had to be set aside. During this period participants experienced that they were quite dependent on the relationship with the healthcare professionals, who represented the possibility to get better. Thus the characteristics of the care relationship was important to help them recuperate from the mental health problems.

Not wanting to start all over again

The importance of continuity in care relationships was underlined because that was regarded as helpful in contrast to having to explain everything all over again when meeting new healthcare professionals. Continuity was described as having a steady care contact with one or a few healthcare professionals who were very involved in their care process and who oversaw the whole process and took the necessary steps in the direction of recuperation. The process of needing to start all over again, every time a new treatment started or when having to meet new healthcare professionals, was experienced as exhausting and a hinder to get better.

“Then just to have a person...yes, partly to one who is...sort of like a coach for that person, a little like a mentor or coach, and that it is one person, so that they are not replaced all the time so you get new people, even if you do not have this first input, it is also important that you have regular staff, ...// … ” (1 Sweden).

“With my second depression, after my first child, my counsellor, took the initiative, as she saw it was going, left, to come together with me and my general practitioner and my social worker. This instead of having me tell my story over and over again.” (3 Netherlands).

Being met with respect and empathy

The situation of being vulnerable was a highlighted experience related to the fact that it was very difficult to stand up for yourself while struggling with mental health problems. However, being met as unique human beings in a respectful manner by healthcare professionals eased the situation. In contrast, stigmatizing attitudes and the often-oppressive way mental health professionals imposed a therapy or a course of intervention was experienced as the opposite: unhelpful and did not promote the collaboration.

“Everyone should be treated as a person, as a distinct individual as all of us are” (3 Greece).

“ I wrote a list before I came here and at the top of the list is respect for the individual and ...yes, I totally agree. I experience strongly that you...just like that you didn’t have a voice any longer, I am used to be listened to and taken seriously. Suddenly, I just felt that, aha, here comes a new mental case.” (1 Sweden).

“I wish for better attitudes among healthcare professionals, especially when it comes to the most serious diagnoses. There is a lot of prejudice and stigma, and you often get treated as a diagnosis, and I think that is condemnable.” (6 Norway).

“They (the psychiatrists) continue to oppress me. They would tell me you will take it (the medication) or you will go in, or I‘ll go back into the psychiatric hospital” (1 Greece).

The healthcare professionals’ empathic ability was emphasized as a necessary ingredient in the care relationship. The participants reasoned that empathy made the healthcare professionals able to put themselves in the position of their patients and understand them better, which in turn influenced the quality of care. They wanted to feel a willingness on behalf of the healthcare professionals to help them to get better. A feeling that they were authentically cared for instead of feeling as if they just were a number on a list for the healthcare professional.

“It means empathy; being able to understand the problem so you can help. It means therapists themselves should be able to feel what each one of us is going through. Because if you don’t, you can’t help”. (5 Cyprus).

“After a while I got the feeling I was number five of the day. They would have gaps in knowledge about me and then I would be like ‘Yes, but last time we agreed on this and this.’ I call it empathic ability. They lacked that.” (7 Netherlands).

“It is like a conveyor belt, you feel like that when you walk in, so I almost never go to the doctor. But when I go, I have gathered some things and when I get to point three, he does not have more time, and then we have to take it next time, and then it is two months to the next time, if it is not urgent. They have too many patients on their lists.” (1 Norway).

Suggestions for improvements

During the discussions of experiences of mental healthcare, the participants came up with different suggestions, which they thought would contribute to quality improvement of mental healthcare and to increase awareness of mental health problems in society.

Facilitating care contacts

Based on the challenges of getting in contact with the mental healthcare system, the participants discussed several creative suggestions, which were seen as important future possibilities to improve availability and accessibility. One suggestion was an emergency reception like the immediate help available for somatic health problems. This help should be adjusted to the kind of mental health problems the patients are struggling with and be based on a correct diagnosis. Besides an emergency reception, the participants also suggested care contact in the form of a knowledgeable contact point that could navigate the care seeker to the correct mental healthcare. Additionally, the availability of an informative website for finding help was regarded as good practice.

“It would like to have a kind of basic post for mental healthcare. Kind of like an EHBO (First aid), where you could go for help. It would help lots of people. There would be a faster process, instead of the long waiting lists. It would cost the taxpayer less as well.” (1 Netherlands).

“I was thinking that if there was...well, you have Contact Point in mental health, if that could have a double function so that you call there, explain that you are feeling ill with this and that, but I don’t know where to turn. If they had the knowledge to then direct you onwards, like railway points in some way. Not just that you can book appointments there, but also that you call there and sort of...I don’t know, where do I go now, and they can help you and direct you onwards, that could be a good thing to have, if you could just talk on the phone.” (2 Sweden).

Another suggestion was that healthcare professionals should send patients in the right direction by explaining different types of available treatments for their specific problems and the purpose of these treatments. It could be described as an expectation that professionals work not only for their own type of treatment but is aware of and have knowledge in other type of treatments and willing to refer patients further.

“There are infinite psychologists but if you are no psychologist you don’t know... // … cognitive behaviour therapy what does that include, you have a psychologist that works in a certain manner...but we are not aware of it and I believe that they should explain to us everything that exists”. (5 Belgium).

“ … // … I also think about this thing about...there has been a lot of focus on CBT, cognitive behavioural therapy, now, and it...I have received another type of therapy, and also have had CBT, and I feel it like this, that CBT is not always suitable, just that, it is very narrowly focused. A lot of people need a completely different type of therapy, but it is just that everybody needs to fit in the same folder today. And I don’t think that it is good. It must be changed.” (6 Sweden).

Other resources that would presumably improve accessibility to mental healthcare are having a better geographical spread of mental healthcare services or an expansion of mobile teams providing home consultations on demand.

“I think that, instead of having a bigger building, the facility should spread to other cities … // … We need to have such facilities close to us. It’s not enough for me to come here and see a doctor for 10 or 30 minutes. Or to have to wait for 3 months, for 2 months at least or for 1 month until the date of my appointment comes ”. (2 Cyprus).

“And then there are these mobile teams, … //... if you have established a contact they can come on home visits, and that is...// … and that is exactly a step that I think would help very many people,” (4 Sweden).

Increasing awareness of mental health problems

The participants discussed their wishes for more proactive efforts in society aimed at reducing stigma and increasing knowledge about mental health. Suitable arenas for such initiatives were for example schools and workplaces. It was suggested that mental health promotion should start already in primary schools as a way of increasing awareness and understanding about mental health problems.

“So, I think there should be an education campaign. … // … we need to get to young people in schools. So that young people know what can happen to anyone. Because what’s happening to me may happen tomorrow to my neighbour. They should know how to handle it, know how to deal with it. Now there are drugs, treatments, and institutions. There are many good and remarkable doctors. So, I think people need to be informed”. (3 Greece).

“One thing is that, I think that we touched on it earlier, but that you could also work quite a lot proactively on public health and have more healthy living thoughts that have more focus on the mental health parts, too, that you can hear about it in school at an early age, and I think that it would be an incredibly important tool for public health. As we said earlier, building up this knowledge, too, that you can sort of...I don’t want to say normalise, because I think that would give a negative connotation, but in some way still normalise mental illness.” (3 Sweden)

Some participants described the usefulness of experts with experience being involved in team meetings, in meetings with politicians, in education for healthcare professionals. They described that involving former patients might broaden up new perspectives above and beyond theoretical knowledge. By being involved in these things, they wanted care providers and policy makers to understand what mental health problems are really like.

“I think that it’s very important that there is uhm good education but there is still a big difference between book knowledge and experience knowledge and if both sectors would cooperate I think that...//... that there would be more understanding, much more indeed... as (name participant) said about changing that mentality or saying ‘politics’ or so, that doesn’t go … doesn’t go so easily but we, from our difficult things we can convert it in that positive one and work with that, witness, to inform people correctly.” (9 Belgium).

An individual with potential

The focus group discussions had a clear message that it was important to be treated as individuals with potential, with strengths in addition to vulnerabilities and with ability to strengthen their health. This was something that the participants meant could improve treatment for mental health problems. Some participants also suggested that alternative treatment options which they meant could facilitate for them to recuperate from the mental health problems were included in the treatment. Importantly, the treatment should not focus solely on the mental health problems but also on the healthy parts that could be strengthened.

“It is important that the care providers look at what our talents are, our powerful points and not just at what is going wrong.” (8 Belgium).

“ … // … to treat an illness is also to...you need to sort of treat the people who are ill … // … strengthening the healthy, because focusing too much on the illness makes you more ill, and then it is easy to be, sort of...it goes in a ring, a downward spiral. And exactly that somewhere in care...exactly that thing about the individual, empowered, not just focusing on the illness but also ensuring that you do things that strengthen and retain function. I think, that is how it works in the somatic world, strengthening and retaining, and that should also exist in mental healthcare, I think. And that should be of political interest, too.” (4 Sweden).

The aim of this study was to describe experiences of mental healthcare among adult Europeans with mental health problems. Focus groups were chosen as a suitable form of data collection allowing the participants to share and discuss their experiences of mental healthcare. Experiences of seeking and trying to find help were related to overcoming personal threshold of accepting the problems and need for care, not knowing where to turn and to get help in time. Awaiting assessment and treatment included feelings of being prioritized or not and feelings of being abandoned. Experiences of treatment disclosed a need for more tailored treatment plans including more pieces than medication treatment. Continuity in mental healthcare and being met with respect and empathy were raised as crucial in care relationships. Possibilities for future improvements were put forward entailing suggestions to increase the societal awareness of mental health problems.

The AAAQ framework refers to availability, accessibility, acceptability and quality in healthcare [ 4 ]. Interestingly, all aspects of this framework came up in different ways in the focus group interviews. This was of particular interest since the study was not designed with AAAQ in mind, it did not guide the focus group interviews and it was not used as an analytical tool during the analysis of the interviews. However, the AAAQ were used as a tool to discuss the findings and mirror the users’ experiences in a framework based in rights and expert opinions. Availability was the least discussed aspect, but several suggestions of mental healthcare facilities that were non-existing were mentioned such as a special first aid emergency unit for persons with common mental health problems, since fast and good quality support was seen as helpful in general. It was considered a way to secure the emotional ground and as a help to get well. Mental health first aid programmes introduced by Kitchner and Jorm [ 25 ] have been evaluated as effective for provision of first aid support for individuals developing mental health problems [ 26 ]. This started as an effort to educate lay persons to recognize and provide a first support for someone with mental health problems prior to a professional care contact being established [ 25 ]. Mental health first aid can be a form of available help for individuals developing mental health problems, but it needs to be aligned with available professional mental healthcare that is easily accessible.

Experiences of accessing mental healthcare were clearly addressed during the focus group interviews. Accessibility refers mainly to the idea that healthcare should be easy to access, affordable and geographically close [ 4 ]. The current results showed that some participants experienced structural barriers in terms of difficulties in accessing mental healthcare but also barriers related to personal economic conditions, which is in accordance with previous research highlighting insufficient accessibility [ 11 ] as obstructing mental healthcare seeking. Geographical closeness of mental healthcare facilities was seen as important by the participants and they gave creative suggestions to improve access. One suggestion was mobile teams that could do home visits on demand. Mobile mental health units have been proven successful in remote areas in Greece by reducing hospitalizations. These units also seem to encourage patients with psychosis to receive treatment thanks to accessibility and non-restrictive care [ 27 ]. A similar French initiative in terms of a mobile mental intensive care unit has been evaluated as functional for individuals with their first episode of psychosis and those being at risk of mental health problems [ 28 ]. Another suggestion was to build smaller units throughout a region instead of large hospitals in urban areas. Thus, moving mental healthcare closer to those in need instead of centralizing might be one option to increase both availability and accessibility.

Accessibility also stipulates that information about healthcare should be provided in an understandable way [ 4 ] but importantly, the participants displayed a need for information about mental healthcare. An interesting angle to this was brought up by the focus groups participants who wanted a broader information on accessible treatment methods. They had experienced that professionals often were devoted to a specific type of care (cognitive behaviour therapy or medication to mention two) while participants wanted a broader palette to choose from. This is particularly interesting in the ongoing development of evidence based healthcare; certain types of treatments receive less attention or are more difficult to investigate which give them a disadvantage on the healthcare market, be it private or public.

Furthermore, the experiences regarding accessibility also contained expressions of uncertainty about where to turn when having overcome the threshold to actually seek mental healthcare. This expressed need for information about how to access mental healthcare and different treatment methods could be understood as a need for better mental health literacy. Mental health literacy has been described as relevant for seeking mental healthcare [ 18 ] and interventions aimed at increasing mental health literacy have shown a favourable effect on seeking mental healthcare [ 19 ]. A suggestion from the focus group participants was that web-based tools could be used to improve access information. Web-based interventions targeting mental health literacy have been proven effective if they contain a structured program, are directed towards a specific population, provide evidence-based content in a pedagogical manner and are interactive [ 29 ].

The current results also demonstrated a wish for more proactive efforts in society aimed at reducing stigma and increasing general awareness of mental health problems in society, which could be interpreted as a plea for better general mental health literacy. Information campaigns in schools were suggested, which is in line with previous research showing that efforts to improve mental health literacy in schools are effective among adolescents. Campaigns both in the community and in schools can improve mental health literacy in general leading to improved readiness to act on mental health problems [ 30 , 31 ]. It could be argued that the current results point towards a clear harmony between experiential knowledge from the perspective of people with lived experiences and scientific evidence, but there is a gap without a firm bridge connecting these knowledge practices. One scope of the European mental health action plan is to establish accessible care that meets peoples’ needs [ 4 ]. Hence, initiatives focusing on improving mental health literacy may be one notion for policymakers to consider. This corresponds to both patients’ experiences and scientific evidence as well as the AAAQ framework which emphasizes the importance of evidence-based knowledge regarding treatment, and service as a quality criterion [ 4 ]. In fact, it can be hypothesized that an improved population mental health literacy in the population will reduce stigma and improve individual mental health literacy. Policymakers, mental healthcare and healthcare professionals are obviously important drivers in such a process.

It was obvious that there were thresholds to overcome before seeking mental healthcare. The first was to acknowledge that one had mental health problems and then to ignore stigmatizing attitudes. These experiences are in accordance with the results in a review by Newman et al. [ 11 ] showing that seeking mental healthcare is a complex effort involving aspects such as overcoming stigma but also prolonged suffering among individuals who did not admit that they needed help. Regarding stigma, reviews show that stigma is associated with mental healthcare seeking [ 13 , 14 , 15 ]. It was evident that stigma prevailed in all countries included in the present study both as social- and self-stigma and perhaps of outmost importance stigmatizing attitudes from healthcare professionals. Because stigma appears to influence mental healthcare seeking [ 12 , 13 , 14 ] and as a result most likely delay initiation of treatment or perhaps even worsen the mental health condition, actions are urgent. Unmet needs for mental healthcare can lead to secondary negative consequences such as reduced capacity to work and sickness absence. Essentially, our study also showed that third parties i.e. next of kin are affected by worries, responsibilities and reduced quality of life. Before Europe can move towards a better mental healthcare, stigmatizing attitudes need to be combatted on all levels in society.

From the experiences shared in the focus groups, it was clear that individualized care was requested containing different parts tailored to each patient’s problems and needs. Being treated as a routine patient was not supportive in the process of combatting the mental health problems according to the participants in the current study. In fact, person-centred care with healthcare professionals working in teams involving patients and their families has been put forward as a future direction of mental healthcare [ 32 ], which is also in line with acceptability in the AAAQ framework underlining placing the patient/person in the centre [ 4 ]. Among the needs that focus group participants mentioned were social treatment including support to become knowledgeable of how society works and being prepared to make contacts with authorities. Participants mentioned the vulnerable situation a person with mental health problems encounters and that this vulnerability can be a major barrier. Mental health problems impact on ability to participate in the labour market [ 2 ] and may even postpone return to work [ 33 ]. It is therefore of vital importance to remember social health when planning treatment for persons with mental health problems. An enhanced collaboration between mental healthcare, social authorities and policymakers is most likely an urgent matter to develop strategies aimed at supporting individuals with mental health problems to improve their social health and to act on exclusion from the labour market and society in general. In this respect, empowerment could play an important role as previous research has demonstrated associations between empowerment and occupational engagement among persons with mental health problems [ 34 ]. It was brought up during the focus group discussions that is was important to be seen as an individual with potential, which can be interpreted as a wish to be empowered. The WHO action plan [ 3 ] has also emphasized that empowerment is one important value to defend among persons with mental health problems. It has also been argued by McAllistar and colleagues [ 35 ] that empowerment serves as an essential outcome measure for patients with long-term health conditions. Because empowerment is associated with both well-being and rehabilitation among persons with mental health problems [ 36 , 37 ] efforts to enhance empowerment is suggested as one crucial part of mental health treatment.

Another aspect of acceptability is the provision of a respectful encounter [ 4 ] which may be related to the results illustrating the importance of continuity and a desire to be met in a respectful empathic way by the healthcare professionals. Continuity has been discussed in many healthcare contexts and both patients and healthcare professionals ask for better continuity [ 38 ]. Again, patients with mental health problems might be more vulnerable to a lack of continuity since trust, confidence and treatment alliances between the healthcare professional and the patient are fundamental ingredients in mental healthcare. Continuity in mental healthcare is a prerequisite in order to build care relationships [ 11 ] and having a trusting care relationship with one or a few healthcare professionals has been considered as good continuity because it means personal stories do not have to be recounted every time [ 39 ]. This is in line with the current results showing that the participants asked for better continuity because they did not want to start all over again when contacting mental healthcare. Moreover, being met in an empathic respectful way was also essential because struggling with mental health problems was experienced as being in a very vulnerable situation, often without the resources to make one’s voice heard. Moreover, negative experiences from former care contacts seemed to nurture a negative expectation spiral leading to delays in taking new contacts when their mental health worsened. This delay may lead to impaired prognosis and poorer opportunity to recuperate and in turn to potential higher costs for society in terms of sick leave and healthcare. Thus, a respectful and empathic encounter was called for which has also been found in previous research with persons who have experienced mental health problems [ 40 ]. It seems important to develop competence in healthcare professionals to manage their own negative attitudes to mental illness and promote supportive behaviour. Therefore, the current study strongly suggests that syllabuses in educations leading to professions within healthcare and social services contain learning activities focusing on patient/person centred care and empathic and respectful communication and encounters.

Quality in healthcare, which refers to evidence or knowledge-based treatment and services [ 4 ], was not explicitly framed in the experiences in the current study, but aspects of quality were embedded in the discussions, for instance in relation to the treatment. In accordance with previous research [ 8 ], the participants raised concerns regarding treatment. They experienced that medication was the first line of treatment prescribed and that over-prescriptions occurred. Although they acknowledged the value of medications, they asked for a treatment entailing different parts and not medication alone. Cuijpers et al. [ 41 ], showed that combining pharmacotherapy with psychotherapy in adults with common mental health problems appears to be more effective than pharmacotherapy alone. Another suggested part of the treatment that could be related to quality was to involve significant others in terms of persons with experiences of mental health problems and next of kin. Persons with their own experiences, so called peers, were regarded as trustworthy because they shared similar experiences as the participants. In fact, peers can help to combat stigma and being part of a peer support network can offer space to focus on other aspects than mental illness [ 42 ]. Concerning involvement of next of kin, it has been suggested that families are invited to be involved in the treatment [ 43 ]. Family involvement has for instance resulted in reduced relapses and hospitalizations for individuals with schizophrenia [ 44 ]. Cohen et al. [ 45 ] found that many individuals with mental health problems wanted their families to be involved but that it could interfere with privacy and integrity and therefore needed to be individually negotiated. The participants in the current study displayed an openness to involve next of kin because thanks to their support they avoided fighting the mental health problems on their own. Furthermore, involving next of kin when receiving information from healthcare professionals was regarded as a quality check because the information was sometimes difficult to remember and understand. In light of the fact that approximately 84 million Europeans have mental health problems [ 2 ], even more are affected as next of kin, which may point towards a shift from patient/person centred to family focused mental healthcare comprising treatment with different parts individually determined. Thoughts about a more multifaceted treatment, which was raised in the focus group discussions, can of course be seen in relation to available resources in the society and within mental healthcare. However, a treatment that does not lead to improved mental health is not profitable neither from an individual perspective nor from a societal perspective. Based on the current study, there is a need for more flexible and individualized treatment for persons with mental health problems. Of course, this must be seen in relation to realistic resources but also in relation to costs of treatment failure. As a suggestion, more intervention studies are needed to evaluate the effect of more flexible or person-centred mental health treatments with individual recuperation and cost effectiveness as outcome measures.

Methodological considerations

A strength of the current study is that the participants represent several European countries and that there is a variation in age, mental health problems and experiences from different forms of mental healthcare. Another strength is that different ways of recruiting were used to ensure a good spread in patient experiences. For example, if participants had only been recruited from psychiatric specialist clinics the experiences would probably have been less varied. Another aspect regarding the recruitment is that all focus group interviews were conducted in urban areas which may indicate that most experiences are related to mental healthcare in larger cities. However, no information about geographical location of the received mental healthcare was collected, which could be regarded as a short-coming and interfere with the applicability of the results. Nevertheless, future studies should preferably address experiences of mental healthcare outside larger cities. As previously described, MentALLY is a pilot project including six countries to test whether the study design and methods were useful in a cross-country approach, which is to be considered as a strength. But a limitation is that only one focus group was performed in each country, except from in Cyprus where two were conducted. As in all qualitative research it is important that the results are not interpreted as possible to generalize in a similar sense as for quantitative studies. The transferability of the findings would have been strengthened with more focus groups in each country not related to mere numbers but rather to a broader patterns of experiences represented in the groups. Comparisons between countries have been avoided.

Moreover, because the participants were recruited through a self-selection process, the findings might not reflect the broader population of people with lived experiences of mental healthcare. To ensure trustworthiness of the results, the analysis was first conducted in each country in the native languages in order to reduce the risk of misinterpretations. The analysis was also supported with verbatim quotations, which could be considered as a strength. As the focus group interviews were held in the native languages, nuances might have been lost in the translation process, an inherent challenge in studies relying on different languages. Regarding trustworthiness, during the analysis, preliminary findings have been presented and discussed with stakeholders from non-governmental network organizations connected to the MentALLY pilot project. Another potential limitation may be that the Dutch data were analysed by the MentALLY team in Belgium but the team in the Netherlands scrutinized the content of the results. It is to be noted that all teams have read the results and contributed with intellectual and critical input. The focus group interviews were conducted adhering to a strict study protocol including an interview guide for conformity between the six MentALLY teams. The interview guide was not pilot tested, which could be regarded as a shortcoming. This and the fact that the analysis followed an analysis template and was driven by what Braun and Clark [ 24 ] refer to as an analytic interest to acquire a more detailed analysis of preconceived aspects could have resulted in aspects of experiences of mental healthcare not being covered in this study. Still, the intention with qualitative research is to gain an in-depth understanding of a phenomenon in this case mental healthcare with focus on access, diagnosis and referral, treatment and collaboration in six European countries from a patient perspective and this intention is regarded as reached.

The present study is limited as it involved a small sample of people with lived experiences from each of the involved countries. However, qualitative studies as the present are not designed for wide generalizability, but to gain a rich and deeper understanding of variations of human experiences [ 46 ], and our results should be appraised accordingly. As this study is a pilot project to explore experiences of mental healthcare across countries and potentially learn from these, detailed analyses linking their experiences to the specific healthcare infrastructures in each country were beyond the scope of the current study. However, based on the current study, we suggest at least three methodological adjustments would be beneficial: First, we would suggest a mixed method approach comparing experiences from patients to a detailed overview of the treatment modalities and capacity in mental health care. Second, we would recommend an immersed qualitative study to explore questions and findings related to stigma further. This includes stigma from health care personnel, which the participants reported across all focus groups. Third, we would aim to also include survey data to approach a wider sense of generalizations and comparisons of key findings between countries. The findings from the current pilot project has been important to illustrate that a cross-country comparison study with a qualitative approach is feasible. The results indicate that there are similar and cross-cutting experiences and questions in mental health care that should be addressed for several European countries.

The following suggestions emerged: Mental healthcare can become more accessible through mobile teams and e-health, a steady contact can facilitate the process of diagnosis and referral, mental health treatment needs to be tailored for each individual containing more parts than medication but with the addition of an empathic respectful encounter. Increased collaboration between stakeholders to act on stigma and improvement of mental health literacy is warranted.

Availability of data and materials

The data collected and analysed during the current study are not publicly available due to research ethical reasons.

Abbreviations

Availability, accessibility, acceptability and quality of healthcare

European union

Organisation for economic co-operation and development

United Nations

World health organization

Global, regional, and national disability-adjusted life-years (DALYs) for 359 diseases and injuries and healthy life expectancy (HALE) for 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. GBD 2017 DALYs and HALE collaborators. Lancet. 2018. https://doi.org/10.1016/S0140-6736(18)32335-3 .

OECD/EU (2018 Health at a glance: Europe 2018: state of health in the EU cycle, OECD publishing, Paris 2018. https://doi.org/ https://doi.org/10.1787/health_glance_eur-2018-en . Accessed 27 June 2019.

WHO 2015. The European Mental Health Action Plan 2013-2020. 2015; http://www.euro.who.int/en/publications/abstracts/european-mental-health-action-plan-20132020-the . Accessed 27 June 2019.

WHO. Gender, equity and human rights. Availability, accessibility, acceptability, quality. 2016; https://www.who.int/gender-equity-rights/knowledge/aaaq-infographic/en/ . Accessed 27 June 2019.

United Nations. Universal Declaration of Human Rights. https://www.un.org/en/universal-declaration-human-rights/ . [].

Alonso, et al. Population level of unmet need for mental healthcare in Europe. Br J Psychiatry. 2007;190:299–306.

Article   Google Scholar  

Ten haven M, et al. Are attitudes towards mental health help-seeking associated with service use? results from the european study of epidemiology of mental disorders. Soc Psychiat Epidemiol. 2010. https://doi.org/10.1007/s00127-009-0050-4 .

Cerimele JM, Fortneya JC, Pyne JM, Curran GM. Bipolar disorder in primary care: a qualitative study of clinician and patient experiences with diagnosis and treatment. Fam Pract. 2018. https://doi.org/10.1093/fampra/cmy019 .

Barbato A, Vallarino M, Rapisarda F, Lora A, and Caldas de Almeida JM. Access to mental health care in Europe 2014. https://ec.europa.eu/health/sites/health/files/mental_health/docs/ev_20161006_co02_en.pdf . Accessed 27 June 2019.

Andrade LH, Alonso J, Mneimneh Z, Wells JE, Al-Hamzawi A, Borges G, Bromet E, Bruffaerts R, de Girolamo G, de Graaf R, Florescu S, Gureje O, Hinkov HR, Hu C, Huang Y, Hwang I, Jin R, Karam EG, Kovess-Masfety V, Levinson D, Matschinger H, O'Neill S, Posada-Villa J, Sagar R, Sampson NA, Sasu C, Stein DJ, Takeshima T, Viana MC, Xavier M, Kessler RC. Barriers to mental health treatment: results from the WHO world mental health surveys. Psychol Med. 2014;44:1303–17.

Article   CAS   Google Scholar  

Newman D. O’Reilly, lee S H, Kennedy C. mental health service users’ experiences of mental healthcare: an integrative literature review. J Psychiatr Ment Health Nurs. 2015;22:171–82.

Packness A, Halling A, Simonsen E, Waldorff FB, Hastrup LH. Are perceived barriers to accessing mental healthcare associated with socioeconomic position among individuals with symptoms of depression? Questionnaire-results from the Lolland-Falster health study, a rural Danish population study. BMJ Open. 2019. https://doi.org/10.1136/bmjopen-2018-023844 .

Clement S, et al. What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychol Med. 2015. https://doi.org/10.1017/S0033291714000129 .

Schnyder N, Panczak R, Groth N, Schultze-Lutter F. Association between mental health-related stigma and active help-seeking: systematic review and meta-analysis. Br J Psychiatry. 2017. https://doi.org/10.1192/bjp.bp.116.189464 .

Ali K, Farrer L, Fassnacht DB, Gulliver A, Bauer S, Griffiths KM. Perceived barriers and facilitators towards help-seeking for eating disorders: a systematic review. Int J Eat Disord. 2017;50(1):9–21. https://doi.org/10.1002/eat.22598 Epub 2016 Aug 16.

Article   PubMed   Google Scholar  

Rüsch N, Angermeyer MC, Corrigan PW. Mental illness stigma: concepts, consequences, and initiatives to reduce stigma. Eur Psychiatry. 2005;20(8):529–39.

Coppens E, et al. Public attitudes toward depression and help-seeking in four European countries baseline survey prior to the OSPI-Europe intervention. J Affect Disord. 2013;150:320–9.

Schomerus G, Angermeyer MC. Stigma and its impact on help-seeking for mental disorders: what do we know? Epidemiol Psichiatr Soc. 2008;17:31–7.

Xu Z, Huang F, Kösters M, Staiger T, Becker T, Thornicroft G, Rüsch N. Effectiveness of interventions to promote help-seeking for mental health problems: systematic review and metaanalysis. Psychol Med 2018. https://doi.org/ https://doi.org/10.1017/S0033291718001265 . Accessed 27 June 2019.

Gilburt H, Rose D, Slade M. The importance of relationships in mental health care: a qualitative study of service users' experiences of psychiatric hospital admission in the UK. BMC Health Serv Res. 2008;8:92. https://doi.org/10.1186/1472-6963-8-92 .

Article   PubMed   PubMed Central   Google Scholar  

Sandhu S, Bjerre NV, Dauvrin M, Dias S, Gaddini A, Greacen T, Ioannidis E, Kluge U, Jensen NK, Lamkaddem M, Puigpinós i Riera R, Kósa Z, Wihlman U, Stankunas M, Straßmayr C, Wahlbeck K, Welbel M, Priebe S. Experiences with treating immigrants: a qualitative study in mental health services across 16 European countries. Soc Psychiatry Psychiatr Epidemiol. 2013;48(1):105–16. https://doi.org/10.1007/s00127-012-0528-3 Epub 2012 Jun 20.

Brislin RW. Back-translation for cross-cultural research. J Cross-Cult Psychol. 1970;1:185–216.

Krueger R, Casey A-M, Focus groups. A practical guide for applied research. Thousand Oaks: SAGE Publications Inc.; 2009.

Google Scholar  

Braun V, Clark V. Using thematic analysis in psychology. Qual Res Psychol. 2008;3(2):77–101.

Kitchener BA, Jorm AF. Mental health first aid: an international programme for early intervention. Early Interv Psychiatry. 2008;2:55–61.

Morgan AJ, Ross A, Reavley NJ. Systematic review and meta-analysis of mental health first aid training: effects on knowledge, stigma, and helping behaviour. PLoS One. 2018. https://doi.org/10.1371/journal.pone.0197102 .

Peritogiannis V, Manthopoulou T, Gogou A, Mavreas V. Mental healthcare delivery in rural Greece: a 10-year account of a Mobile mental health unit. J Neurosci Rural Pract. 2017. https://doi.org/10.4103/jnrp.jnrp_142_17 .

Lecardeur L, Meunier-Cussac S, Dollfus S. Mobile intensive care unit: a case management team dedicated to early psychosis in France. Early Interv Psychiatry. 2018. https://doi.org/10.1111/eip.12674 .

Brijnath B, Protheroe J, Mahtani KR, Antoniades J. Do web-based mental health literacy interventions improve the mental health literacy of adult consumers? results from a systematic review. J Med Internet Res. 2016. https://doi.org/10.2196/jmir.5463 .

Skre I, Friborg O, Breivik C, Johnsen LI, Arnesen Y, Wang CE. A school intervention for mental health literacy in adolescents: effects of a non-randomized cluster controlled trial. BMC Public Health. 2013. https://doi.org/10.1186/1471-2458-13-873 .

Jorm AF. Mental health literacy: empowering the community to take action for better mental health. Am Psychol. 2012. https://doi.org/10.1037/a0025957 .

Gask L, Coventry P. Person-centred mental health care: the challenge of implementation. Epidemiol Psychiatr Sci. 2012. https://doi.org/10.1017/S2045796012000078 .

Hensing G, Bertilsson M, Ahlborg G Jr, Waern M, Vaez M. Self-assessed mental health problems and work capacity as determinants of return to work: a prospective general population-based study of individuals with all-cause sickness absence. BMC Psychiatry. 2013. https://doi.org/10.1186/1471-244X-13-259 .

Hultqvist J, Eklund M, Leufstadius C. Empowerment and occupational engagement among people with psychiatric disabilities. Scand J Occup Ther. 2015;22(1):54–61. https://doi.org/10.3109/11038128.2014.934916 .

McAllister M, Dunn G, Payne K, Davies L, Todd C. Patient empowerment: the need to consider it as a measurable patient-reported outcome for chronic conditions. BMC Health Serv Res. 2012;12:157 http://www.biomedcentral.com/1472-6963/12/157 .

Johanson S, Bejerholm U. The role of empowerment and quality of life in depression severity among unemployed people with affective disorders receiving mental healthcare. Disabil Rehabil. 2017;39(18):1807–13. https://doi.org/10.1080/09638288.2016.1211758 .

Grealish A, Tai S, Hunter A, Emsley R, Murrells T, Morrison AP. Does empowerment mediate the effects of psychological factors on mental health, well-being, and recovery in young people? Psychol Psychother. 2017;90(3):314–35. https://doi.org/10.1111/papt.12111 .

Parker G, Corden A, Heaton J. Experiences of and influences on continuity of care for service users and carers: synthesis of evidence from a research programme. Health Soc Care Community. 2011. https://doi.org/10.1111/j.1365-2524.2011.01001.x .

Biringer E, Hartveit M, Sundfør B, Ruud T, Borg M. Continuity of care as experienced by mental health service users - a qualitative study. BMC Health Serv Res. 2017. https://doi.org/10.1186/s12913-017-2719-9 .

Porter S, Lexén A, Johanson S, Bejerholm U. Critical factors for the return-to-work process among people with affective disorders: voices from two vocational approaches. Work. 2018;60:221–34. https://doi.org/10.3233/WOR-182737 .

Cuijpers P, Sijbrandij M, Koole SL, Andersson G, Beekman AT, Reynolds CF 3rd. The efficacy of psychotherapy and pharmacotherapy in treating depressive and anxiety disorders: a meta-analysis of direct comparisons. World Psychiatry. 2013. https://doi.org/10.1002/wps.20038 .

Huggett C, Birtel MD, Awenat YF, Fleming P, Wilkes S, Williams S, Haddock G. A qualitative study: experiences of stigma by people with mental health problems. Psychol Psychother. 2018. https://doi.org/10.1111/papt.12167 .

Doody O, Butler MP, Lyons R, Newman D. Families' experiences of involvement in care planning in mental health services: an integrative literature review. J Psychiatr Ment Health Nurs. 2017. https://doi.org/10.1111/jpm.12369 .

Pharoah F, Mari J, Rathbone J, Wong W. Family intervention for schizophrenia. Cochrane Database Syst Rev. 2010. https://doi.org/10.1002/14651858.CD000088.pub2 .

Cohen AN, Drapalski AL, Glynn SM, Medoff D, Fang LJ, Dixon LB. Preferences for family involvement in care among consumers with serious mental illness. Psychiatr Serv. 2013. https://doi.org/10.1176/appi.ps.201200176 .

Polit DF, Beck CT. Generalization in quantitative and qualitative research: myths and strategies. Int J Nurs Stud. 2010;47(11):1451–8. https://doi.org/10.1016/j.ijnurstu.2010.06.004 Epub 2010 Jul.

Download references

Acknowledgements

All participants are acknowledged for contributing with their time and lived experiences to enable the study.

The study was funded by the European Parliament (Pilot Project Grant PP-2-2016, Topic: PP-2-2-2016). The funding body had no role in or influence over the study design, the execution of the study, the data analysis or the writing of the study. Open access funding provided by Malmö University.

Author information

Authors and affiliations.

Department of Care Science, Faculty of Health and Society, Malmö University, Jan Waldenströms gata 25 – F416, SE-205 06, Malmö, Sweden

Malin Axelsson

Department of Public Health and Community Medicine, Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Gothenburg, Sweden

Viktor Schønning & Gunnel Hensing

Department of Health Promotion, Division of Mental and Physical Health, Norwegian Institute of Public Health, Bergen, Norway

Viktor Schønning & Simon Øverland

Amsterdam UMC, Department of Psychiatry (AMC) and Institute for Advanced Studies, University of Amsterdam, Amsterdam, the Netherlands

Claudi Bockting

Department of Experimental Clinical and Health Psychology, Faculty of Psychology and Educational Sciences, Ghent University, Ghent, Belgium

Ann Buysse, Alexis Dewaele, Dewi Hannon & Joke Vandamme

Department of Psychoanalysis and Clinical Consulting, Faculty of Psychology and Educational Sciences, Ghent University, Ghent, Belgium

Mattias Desmet & Reitske Meganck

Department of Psychology, University of Crete, Rethymno, Crete, Greece

Theodoros Giovazolias, Spyridoula Ntani & Sofia Triliva

Aristotle University of Thessaloniki, Thessaloniki, Greece

Konstantinos Kafetsios

Department of Educational Studies, Faculty of Psychology and Educational Sciences, Ghent University, Ghent, Belgium

Kris Rutten & Laura Van Beveren

Division of Mental and Physical Health, Norwegian Institute of Public Health & Department of Psychosocial Science, University of Bergen, Bergen, Norway

Simon Øverland

You can also search for this author in PubMed   Google Scholar

Contributions

The MentALLY teams in each country (Belgium: AB, MD, AD, DH, RM, KR, LVB, JV; Greece: TG, KK, SN, ST; Netherlands: CB; Norway: VS, SØ; Sweden: MA, GH) applied for ethical approvals, invited participants, organized the focus group interviews and collected the data. Initial analyses of the transcripts in the native languages were conducted by the MentALLY teams in each country separately (Belgium: AB, MD, AD, DH, RM, KR, LVB, JV; Greece: TG, KK, SN, ST; Netherlands: CB; Norway: VS, SØ; Sweden: MA, GH), except for the data from the Netherlands and Cyprus that were analysed by the team in Belgium (AB, MD, AD, DH, RM, KR, LVB, JV) and Greece (TG, KK, SN, ST) respectively. The MentALLY themes in Norway and Sweden (VS, SØ, MA, GH,) then created a common result covering all countries and drafted the manuscript. All MentALLY teams have contributed by critically revising the manuscript for important intellectual content (MA, VS, CB, AB, MD, AD, TG, DH, KK, RM, SN, KR, ST, LVB, JV, SØ, GH). All authors (MA, VS, CB, AB, MD, AD, TG, DH, KK, RM, SN, KR, ST, LVB, JV, SØ, GH) have read and approved the final manuscript.

Corresponding author

Correspondence to Malin Axelsson .

Ethics declarations

Ethics approval and consent to participate.

Ethical approvals were granted from the Review Boards at Ghent University in Belgium, the University of Crete in Greece (Επι.Δ.Ε. i.e. Ethical Committee, 6/2018/16-05-2018) and the Regional Ethical Review board in Gothenburg in Sweden (474–18). In Cyprus, the Mental Health Services of the Ministry of Health gave permission to conduct the study (4.2.09.37/7). In the Netherlands, an application was sent to the Medical Ethical Committee of Academic Medical Hospital of the University of Amsterdam and an exemption was given as all subjects were healthy and non-invasive procedures were used (no number was given due to the exemption). The Regional Committees for Medical and Health Research Ethics in Norway found the project outside the realm of medical ethics assessment. Therefore, an assessment and approval from a data protection officer at the Norwegian Institute of Public Health was collected. Following written and verbal information about the study, all participants signed an informed consent before the focus group interviews started.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests .

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Axelsson, M., Schønning, V., Bockting, C. et al. Lived experiences: a focus group pilot study within the MentALLY project of mental healthcare among European users. BMC Health Serv Res 20 , 605 (2020). https://doi.org/10.1186/s12913-020-05454-5

Download citation

Received : 18 September 2019

Accepted : 22 June 2020

Published : 01 July 2020

DOI : https://doi.org/10.1186/s12913-020-05454-5

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Collaboration
• Lived experiences
• Mental health literacy
• Service-users

BMC Health Services Research

ISSN: 1472-6963

• General enquiries: [email protected]

• Open access
• Published: 26 July 2021

A qualitative study about the mental health and wellbeing of older adults in the UK during the COVID-19 pandemic

• A. R. McKinlay 1 ,
• D. Fancourt 1 &
• A. Burton 1  

BMC Geriatrics volume  21 , Article number:  439 ( 2021 ) Cite this article

55k Accesses

53 Citations

8 Altmetric

Metrics details

The objective of this study was to examine factors that threatened and protected the wellbeing of older adults living in the UK during social distancing restrictions due to the COVID-19 pandemic.

Semi-structured telephone or video interviews with 20 adults aged over 70. Purposive sampling methods were used to increase diversity within the group. Transcripts were analysed using reflexive thematic analysis.

Participants described potential threats to their wellbeing during the pandemic, including fears for mortality, grieving normal life, and concerns for the future. Participants also described activities and behaviours that helped to protect their mental health, including adopting a slower pace of life, maintaining routine, socialising, and using past coping skills. Many participants drew on their resilience and life experience to self-manage fear and uncertainty associated with the pandemic, using their time during lockdown to reflect or organise end-of-life affairs.

This study provides UK-based evidence that while some older adults experienced challenges during the first wave of COVID-19, many were resilient throughout social distancing restrictions despite early reported concerns of mental health consequences among the older adult population. Our findings highlight the importance of maintaining access to essentials to promote feelings of normality and use of social support to help reduce uncertainty in times of pandemics.

Peer Review reports

Introduction

Existing concerns about the wellbeing of older adults were exacerbated when severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) was declared a pandemic by the World Health Organisation on March 11th, 2020 [ 39 ]. Older adults were identified as especially vulnerable to the virus with high rates of fatalities [ 17 ], particularly in some residential care homes [ 9 , 35 ] during the first wave of the virus [ 23 ]. Hospitalisation rates were high among those living with long term conditions (LTCs) [ 10 , 17 ], many of which affect the older adult population [ 12 , 30 ]. The UK government imposed their first social distancing restrictions on March 23rd, 2020, where adults over the age of 70 were required to self-isolate and “lockdown” at home for 3 months to reduce their infection risk.

Drawing on evidence of negative psychological responses observed during previous epidemics [ 5 ], concerns rose among stakeholders at the start of the pandemic that there would be adverse effects of the COVID-19 pandemic on mental health and wellbeing. Whilst under usual circumstances, older adults do tend to experience psychosocial wellbeing that is equal or better than that of younger age groups [ 11 ], it was predicted that due to the specific isolation rules for older adults and their heightened risk from the virus, psychosocial consequences such as loneliness would be exacerbated in older age groups [ 21 ], leading to negative effects on mental and physical health [ 22 , 34 ]. At a population level, mental health during the COVID-19 pandemic was negatively impacted [ 42 ], but evidence suggests older adults on average experienced more stable and less negative outcomes compared with other subgroups [ 20 , 38 ]. It is presently unclear why this was, or what underlying factors accounted for the experiences reported by older adults during lockdown.

Several theories could help to explain the apparent psychological resilience of older adults during the pandemic. Offers of support from social contacts [ 25 ], a stable living environment [ 6 , 7 ], cohabiting with others [ 19 ], and financial security [ 20 ] may have helped protect many in this group against adverse effects of social distancing measures by providing a psychological buffer against distress. Additionally, older adults may draw on previous life experiences to perceive a greater sense of coherence in the events of the pandemic. Sense of coherence theory incorporates comprehensibility (ability to understand and integrate), manageability (ability to navigate and manage) and meaningfulness (sense making) in relation to interpretation of a new health threat [ 1 ]. It has been shown to support better navigation of life stressors [ 1 ] and is a strong predictor of health status among older adults [ 16 ]. Life wisdom accumulated by older age has also been found to increase the use of problem-focused coping skills, which may protect against distress [ 14 ]. However, whether factors such as these do indeed explain the responses amongst older adults remains unexplored.

Understanding the factors that are transferable across age groups is essential in developing future interventions and policy for those most at risk of harm due to social distancing measures during the pandemic. Further, whilst the average mental health symptom scores and wellbeing levels of older adults have been better than amongst younger age groups during the first wave of the pandemic in the UK [ 15 ], this does not necessarily imply that older adults were psychologically unaffected. Therefore, this study explored in detail the experiences of older adults living in the UK, with two specific research questions: (1) How was the mental health of older adults affected during the pandemic? (2) What factors have protected mental health in older adults during this time?

Study design

This research was undertaken as part of the COVID-19 Social Study (CSS) that began on March 21st 2020 [ 6 , 7 ], which is the largest UK panel survey study on social life during the COVID-19 pandemic. The overall aims of this work are to explore the psychosocial impact of the pandemic among people living in the UK. In this qualitative substudy, conducted separately from the CSS survey, we elicited perspectives of older adults through qualitative interviews, which were carried out from May until September in 2020. We deployed phenomenological methodology to interrogate the data and focus on individual accounts of experience, coupled with reflexive thematic analysis techniques for analysing and framing the research data. The University College London Ethics Committee reviewed and approved this study (Project ID: 14895/005). Content in the following sections are informed by the COREQ reporting guidelines [ 37 ].

Recruitment

Eligibility criteria included: aged 70 years or older, and the ability to speak English sufficiently to understand the study participant information sheet and consent form. We recruited participants by listing the substudy in the CSS newsletter (reaching 3919 subscribers), social media, and through two community organisations who circulated study information within their networks. We did not record response rates during recruitment. People interested in participating were asked to contact the research team directly via email. In order to understand a range of individual experiences, we screened for characteristics (such as gender, ethnicity, educational level) based on previous findings highlighting how some demographics factors have been associated with adverse mental health during the pandemic [ 15 ]. Thus, we used purposive sampling methods to ensure that 20 adults aged over 70 were selected from diverse backgrounds in terms of gender, ethnicity, marital status, and living situation. Recruitment ended after 20 one-off interviews, as the lead author AM identified no new themes during the analysis.

A researcher (AM or AB) responded to expressions of interest in the study with further details about the study and an invitation to ask additional questions. All participants then provided written informed consent prior to attending a remote interview by telephone or video call. Participants were offered a £10 shopping voucher as an expression of gratitude. A team of female, postgraduate-level, qualitative healthcare researchers conducted all interviews (AM, AB, LB, AR, SC). No researcher had prior relations with any research participant. Interview times ranged from 16 to 85 min and lasted for 50 min on average. A complete interview guide can be found in Supplementary File  1 . In brief, interview topics included: normal life before the pandemic, understanding of social distancing guidelines, social life, mental health, and prospection (for question examples, refer Table  1 ). Interview guide questions and prompts were developed based on concepts from social integration and health theory [ 2 ] and Antonovsky’s Sense of Coherence theory [ 13 ]. For example,  “Has the pandemic meant that you have any worries for the future? How are these different from the worries you had before?” Although all general topics were discussed during interviews, not all questions or prompts were used or indeed relevant to each participant’s unique circumstances. Interviewers were guided about the questions and prompts to use according to participant responses.

Data analysis

Researchers audio recorded the interviews with consent from participants, which were then transcribed verbatim by a professional transcription service. All transcripts were manually checked for anonymity after transcription before importing into Nvivo version 12 for analysis. Transcripts were not returned to participants for comment or correction, nor did they provide feedback on the findings. For consistency of coding approach, AM and AB double coded 3 transcripts at the start of data analysis and discussed issues of salience raised by participants. We did not calculate the intercoder reliability or quantify agreement during this stage [ 29 ], but rather focused on the impressions that both researchers had on topics of importance when coding the same passage of text. The lead researcher (AM) used an inductive and deductive, reflexive thematic analysis approach, informed by Braun and Clarke [ 3 , 4 ]. An initial coding framework was established from the topic guide, which was formulated based on supporting theory regarding social network structure, social ties, social support (i.e., [ 1 , 2 ]). This framework was applied to each transcript through line-by-line coding, then the framework was updated with new codes as AM identified new concepts in the transcripts described by participants. Themes and subthemes were therefore developed based on participant narratives, and these were presented to the CSS research team on 3 occasions throughout the analysis stages for formative feedback.

Of those who agreed to take part, 9 participants were women and 11 men, with an average age of 79 (Table  2 ). Fourteen participants reported having a physical health condition, including hypertension, diabetes, arthritis, high blood pressure and cancer. Two participants had an anxiety-related mental health condition diagnosed prior to the pandemic, and 3 said they had caregiving responsibilities for a spouse or family member.

Participants reported varied and nuanced experiences from the outset of the COVID-19 pandemic. We therefore generated two overarching themes, each with 4 subthemes. Many participants described potential threats to their wellbeing, including fears for mortality, grieving normal life, restricted access to support, and concerns for the future. However, many spoke of how they protected mental health in response to pandemic-related uncertainty, including adopting a slower pace of life, maintaining routine, socialising, and using past coping skills.

Potential threats to wellbeing

Some participants described a transient period of uncertainty at the start of the first UK lockdown, associated with nervousness and lack of sleep that resolved quickly. Many were understandably concerned about the impact the pandemic was having on their end-of-life experience and consequences for the rest of the world (Table  3 ). Overall, the government restrictions were described as “fair enough” and “required” by many; however, a commonly reported concern among participants was a fear of needing healthcare assistance during the COVID-19 lockdown. Some participants were worried about catching COVID-19 and additional risks due to their age, ethnicity, and medical history. Others said that lockdown measures meant they were unable to engage in activities that usually formed part of their self-care routine.

Concerns about end-of-life, ageing, and mortality

More than half of the group spoke about how the pandemic caused them to think about their experience of end-of-life, ageing, and mortality.

‘It’s just this idea of all of a sudden realising that I’m getting really old. I think that may be the biggest thing, and it’s a combination of getting really old, and the pandemic is probably accentuating it a bit.’ p10, female, aged 75-79

Those who were retired were particularly worried about the physical or cognitive impact of lockdown on their experience of ageing.

‘I thought I’m going to be forced into being isolated at home. Can’t go to the gym, can’t go out walking, I’m going to physically deteriorate. And I really was quite scared about that.’ p1, male, aged 80-84

Some planned for the possibility of becoming unwell from COVID. For instance, one participant had instructed his family to “stay away” should he become gravely ill, to protect them from the virus. For several participants, a reminder of their own mortality risk came from knowing someone who had passed away from COVID:

‘We’ve had one friend who was in his sixties… Suddenly went into hospital went on a respirator and sadly he died. He’s the only person we know who has directly been affected by it. It hits you and it makes you realise your own mortality. Especially when they keep saying it affects older people worse, so you do worry.’ p13, male, aged 75-79

Several participants described concerns about their perceived vulnerability to COVID due to their age, ethnic group, or pre-existing health concerns:

‘It is scary for us at our age. The thought of getting COVID, that really frightens me and frightens me for anybody close to me that if they got it. It really terrifies me. So, we have been very, very careful.’ p11, female, aged 70-74

Grieving the loss of normality

Understandable emotional responses and a longing for normality were frequently described by participants. Some felt the activities they previously enjoyed, like travelling, going to the theatre, or “hitting a tennis ball,” would never return to the normal they were used to. Others said they felt their life was on hold until the virus was under control or a vaccine was introduced.

‘The new normal is not going to be at all like the old normal, I don't think. We won’t really be able to live the kind of life that we lived before until there’s a vaccine, and it looks as though the vaccine is going to be a very long way off.’ p4, female, aged 70-74

Some said they felt grief about the impact COVID was having on the world, particularly regarding death, hardships, and suffering of others.

‘I knew of the wars and the disease and the hunger, but I think COVID has just put a whole blanket round the lot of it and makes it so immense, the state of the world. The horrible state of the world and that is very depressing when you think about it.’ p19, female, aged 80-84

Several said they did not think a COVID vaccine would help life “go back to where we were before.”

‘Whatever happens, even if a vaccine comes, we will never return to shaking strangers’ hands.’ p16, male, aged 75-79

Healthcare concerns

Concerns about catching COVID were variable among the group, but many were more fearful of being hospitalised for any reason because they believed they were at increased risk of death.

‘A lot of people are scared stiff of catching [COVID], I’m not. The only thing I’m scared of is being carted off to a hospital. I want to die peacefully at home, and I would happily do that any night.’ p8, male, aged 90-94

Those living alone in particular worried about the lack of available health services during lockdown, should anything “go wrong” with their health independently from COVID.

‘A friend of mine has just been diagnosed with breast cancer. She’s had to wait about nine weeks for her op… so you worry about if something like that happened to me, would I get the medical attention I need?’ p12, female, aged 75-79

The potential health threat of COVID meant some participants were scared to leave the house.

‘I do feel that perhaps I should be going out more and that sort of thing, but myself and many, many, almost all my friends say that they are very scared to go out.’ p2, female, 70-74

Several participants had decided to self-isolate before the national restrictions were introduced, mainly due to concerns about age-related vulnerability and pre-existing health conditions.

‘Come mid-March when it all happened… we decided ourselves to lockdown before other people did… I’m over 75 and I’ve got blood pressure controlled by medication but I’m over 75. My BMI was over 30… So, I was worried and we were worried. So, we totally shut down.’ p16, male, aged 75-79

Unable to engage with activities that protect wellbeing

Due to social distancing and travel restrictions, some participants were unable to engage in activities such as weekly religious ceremonies, theatre groups, and sports. Although some activities were able to be undertaken online, this was not always possible.

‘Since COVID, [community activities have] all closed down. Well yes, the book club totally because we can’t discuss books over the phone and also people are of an age where you can’t do social media, whatever you call it.’ p19, female, aged 80-84

Several participants commented on the consequences of an abrupt change in routine on their wellbeing during lockdown.

‘That was the first thing that hit me, boredom. I had no idea what the hell am I going to do next, because I was used to a routine and suddenly the routine was completely disrupted…Now suddenly I had nothing to do and I was really lost. I was walking round the house like a bloody zombie trying to find something to do.’ p15, male, aged 80-84

Protective activities and Behaviours

Despite voicing threats to wellbeing, many participants were positive in reflecting on their lockdown experience. This was attributed to a slowed pace of life, maintaining a routine, using coping skills and resources, and accessing social support (Table 3 ).

Slowing the pace of life

The most commonly reported experience during lockdown was feeling like the pace of life had slowed on an individual and societal level, with more time alone to reflect. Although some participants had described a loss of leisure during lockdown, many had found time for new hobbies, reading, crafts, gardening, and learning a new language.

“Sometimes I wake up in the morning, and I think, oh, it’s another day in lockdown, but I think… there are some little positive benefits…Before lockdown, we were all rushing around doing lots of things, and now we’ve had to slow down. And actually, slowing down has been quite nice. And we’re living in the kind of retirement now that, maybe, our grandparents might have lived, when you just cultivate your garden and do your knitting and crochet... But just generally living a slower pace of life.“ p4, female, aged 70-74

Others felt that being required to stay at home presented an opportunity to focus more on their health by going for regular walks and taking up new forms of physical activity. For some, this was the first time in decades they had been so physically active.

“I’ve now started to ride a proper bike as well. I live in a Close, so we don’t get any through traffic and I can cycle around that Close and I do a few laps. But I haven’t ridden a bike for 60 years.” p1, male, aged 80–84

Half of the group said the slowed pace of life gave more time for introspection: “I’m not rushing around so much anymore, it’s given me the time and the opportunity to notice small things.” p4, female, aged 70–74. In particular, many women in the group said they reflected on their life differently and in a more meaningful or positive way than before. Some used this process of reflection to think about the changes they would make to their lives as a result of their pandemic experience.

‘Having grown quite a lot, I feel quite positive about that. I also think I’m going to try and, maybe, achieve more things when I come out of this [lockdown]. I think when you retire, and as you get older, you become very comfortable in your life. I think, perhaps, I was a bit too comfortable. I need to get out and be more proactive.’ p6, female, aged 70-74

Benefits of routine and social responsibility

Nearly half of participants said that maintaining a routine and sense of purpose was important for their wellbeing during the COVID-19 lockdown: “ You have to have a purpose you see. I think mental resilience is all about having a sense of purpose.” (p15, male, aged 80–84).

Many female participants said they experienced meaningful benefits from social responsibilities, such as cooking a meal for family, phoning friends to check in, or caring for a pet:

‘The important thing is to have the necessity to do things. Whether it is to get in touch with people, to write a piece of something… Obligations are a good source of maintaining ones feeling of self-worth, if you like. So I think it’s very important to make sure that whatever it is, even though you may feel oh what a nuisance I’ve got to do that, the very fact of having to do it is a great psychological benefit.’ p3, female, aged 70-74

Social interactions and support

The nature of socialising had changed since the start of lockdown for many but not all participants. Several said they were socialising to try to carry on “life as normal” , particularly keeping in regular contact with family. For some, this resulted in strengthened relationship bonds and connectedness:

‘I think it has made me and my husband stronger really. We’ve never spent as much time together actually… I think we’ve coped with the shopping and organising that. And we’ve been baking together, we’ve never done things like that. And we took it in turns to cook and tidy up after. We have done really well together. I’m really proud of us.’ p11, female, aged 70-74

Utilising skills, experience and accessing practical resources to cope

Participants who had used mental health services in the past spoke of utilising the skills they had previously learned to help cope with the COVID-19 crisis, including use of mindfulness and meditation.

‘I had a wonderful counsellor who I saw about once a year, and she would set me on the right path. And eventually, after many years of trying, I found a mindfulness and meditation book, about the middle of last year… so I feel that that has been a great help to me. Usually I try in the morning and certainly in the evening, before I go to bed, I do some meditation.’ p2, female, 70-74

Others described experiences of hardship in the past that they used as a comparison with COVID times, such as living through war, displacement, and illness:

‘I was diagnosed with what they call non-invasive bladder cancer… Having gone through the concern of something like that, perhaps Covid, you know, you put it into perspective.’ P13, male, aged 75-79

For some who lived alone, they spoke of being accustomed to isolation long before the pandemic arrived: “I’m a fairly sort of isolated person anyway.” p1, male, aged 80–84 . Several said they were accustomed to being alone due to widowhood or retirement, and therefore lockdown did not prompt a dramatic change in their daily living or social life:

‘I’ve been retired for a nice long time… So, in many ways the lockdown, on one side it hasn’t impacted a great deal, because I was used to being at home and certainly over the past two years to being home alone.’ p20, male, aged 80-84

Participants frequently mentioned their access to practical resources and basic necessities that helped reduce uncertainty, such as access to online shopping for home food deliveries and offers from others to drop off medication. Such arrangements had been made during lockdown, with additional support offered by family, friends, and neighbours.

‘I’ve had online shopping every week since lockdown and I haven’t been to any shop. Prescriptions were delivered and anything I wanted, my daughter would fetch.’ p18, female, aged 80-84

In this study, we sought the views of older adults living in the UK about factors that threatened or protected their mental health and wellbeing during the COVID-19 pandemic. Our study identified understandable emotional responses to the pandemic including fears relating to the virus, the future, and mortality. These are justified in the face of unprecedented circumstances, such as those brought about by COVID-19 [ 28 ]. Overall, older adults mostly described engaging with activities and behaviours that helped to protect their mental health and could explain their improved wellbeing relative to other age-groups. For the most part, participants enjoyed feeling less social pressure and having more time for their hobbies. Similarities in experience were drawn by this group between a slower pace of life germane to retirement and day-to-day realities of the COVID-19 lockdown. As described by older adults in Japan [ 36 ], COVID-19 restrictions introduced comparatively few changes to daily life compared with other groups. Those who experienced greater daily changes and uncertainty, such as parents of young children, working age adults and those affected by financial difficulties, have reported greater levels emotional distress during the pandemic [ 32 ]. Fewer changes and transitions experienced by older adults may therefore explain some of the differences observed in levels of psychological distress.

Congruent with international research [ 25 ], many participants began to self-isolate earlier than guidance required and perhaps consequently, practical arrangements were in place for access to essentials from the outset of lockdown (for instance, food and medication deliveries offered to people aged over 70), resulting in greater sense of coherence of COVID-19 as a potential health threat. Being at home early meant less opportunities for virus exposure, perhaps reducing fear of virus transmission and creating an environment of stable predictability (comprehensibility). Many older adults were offered online shopping slots or received offers of help from friends, family or neighbours for medication collection, meaning access to supplies was not restricted (manageability). And for the most part, older adults in our study made sense of the pandemic with reference to previous major events in their lives, such as war and displacement. Explanations about their behaviours and adherence during this time was described as behaviour “for the greater good” for the rest of society (meaningfulness).

Factors that threatened mental health and wellbeing during COVID-19

Given early evidence publicised on mortality risk for older adults [ 41 ], it is unsurprising participants frequently discussed concerns about their end-of-life. Studies have shown an association between social isolation and reduced physical performance, [ 31 ] causing concern among some participants in our study, with many taking extra steps to preserve their activity levels. While this may have provided positive health benefits in the short term, of most concern is the fear many participants described in leaving the house to access routine or preventative health care, which may have longer-term implications for public health services. Aligned with international research [ 24 ], participants in our study also worried about the impact of COVID-19 on the world and spoke of the impact this had for their wellbeing on a daily basis. Feelings of grief and loss were frequently reported and will likely be felt across many societies in response to the pandemic.

Factors that protected mental health and wellbeing during COVID-19

Quantitative data collected during the first UK lockdown suggests that those with restricted finances and access to basic needs experienced higher levels of adversity during the first wave of the pandemic [ 40 ]. Many participants in our study reported having access to basic supplies (via online shopping slots and medication deliveries) and high levels of perceived social support, which may have helped to create a buffer against stress and uncertainty. National averages showed infrequent experiences of loneliness among older adults during the pandemic [ 26 ], which may be explained by our finding that participants engaged frequently in online methods of interaction, spent time with pets, and/or had regular remote “check-ins” with friends and family to mitigate against loneliness. As such, the heightened concern about loneliness in this age group early on in the pandemic may have led older adults and those around them to proactively take steps that helped prevent these experiences in many individuals. Indeed, many participants reported enhanced feelings of connectedness with social contacts throughout the lockdown, which can prevent isolation and protect against emotional distress [ 34 ]. However, a small number of participants did not feel connected, particularly those who had been separated from their family because of the pandemic, highlighting the difficulties experienced when such support was not available.

Implications

This study highlights a number of important implications. First, the potential threats to wellbeing amongst older adults require further consideration as they have implications for the immediate future and for future pandemics. In trying to remove barriers to healthcare access, supporting older adults in engaging with telecare may be a helpful alternative for some health concerns. However, in our CSS work involving people with mental health conditions in the UK, we found service users felt this was an unhelpful substitute [ 8 , 9 ]. Future research must address indirect health consequences of the pandemic resultant of delayed or diminished access to healthcare during the lockdown. Second, as discussed elsewhere [ 18 ], interventions to mitigate the impact of prolonged isolation on experiences of grief are warranted. Grief can prompt search for meaning and seeking out others with similar experiences. Clinicians play a role in supporting people in processing their grief associated with COVID-19, but spaces online and within groups may also facilitate healing from loss experienced during the pandemic [ 18 ]. Schemes such as social prescribing could be deployed to support older adults psychosocially, and may provide additional support in the aftermath of COVID-19 [ 33 ]. Finally, it is evident that forward-planning by families and communities to address initial concerns about older adults during the pandemic played an important role in supporting their coping and buffering against loneliness, isolation, and uncertainty. For future pandemics, such a response is again encouraged. In particular, interventions that bolster feelings of certainty and connectedness may serve as helpful targets for those experiencing pandemic-related distress.

Strengths and limitations

A strength of this research is that data were collected from participants via purposive recruitment throughout the first UK lockdown and as restrictions began to ease before the second wave. However, findings must be interpreted cautiously. Our participants were generally healthy, with well-established social networks, living in the community, and predominantly without solo caregiving responsibilities. Therefore, their experiences are not likely to be representative of those living with serious health concerns, who may be more likely to have experienced distress during the pandemic [ 27 ]. We conducted interviews via video call or telephone, which meant being able to capture experiences safely amid restrictions, but also means that those without access to the internet or telephone would not have had equitable access to participate and may have faced additional challenges. We also did not collect data on, or sample based on socioeconomic status or previous COVID-19 infection. To our knowledge, no participant had experienced a confirmed diagnosis. Future studies are needed to ascertain how older adults who experienced COVID-19 were impacted psychologically [ 26 ].

Conclusions

Contrary to early concerns at the start of the pandemic, the mental health of older adults fared well compared with other age groups, and this study adds to the literature on this topic by providing evidence as to why these results may have been found. Overall, many participants described their experience of lockdown as a time for reduced social pressures and increased opportunities for personal growth. However, this group experienced challenges, particularly among those who were concerned about staying well, advancing frailty, or hospitalisation risk. This research therefore highlights the importance of nuance when considering the relative better experiences of older adults. It also provides valuable insight into factors that protected wellbeing of older adults during the COVID-19 pandemic, which may be utilised by policy makers to support at-risk groups who have experienced psychological hardship during the crisis, including timely access to essential supplies, communicating offers of help to improve perceived support, and providing structure and routine in times of uncertainty.

Availability of data and materials

The datasets generated and analysed during the current study are not publicly available and are not available from the corresponding author on request due to reasons concerning participant privacy and confidentiality.

Antonovsky A. Health, Stress, and Coping. San Francisco: Jossey-Bass Inc; 1979.

Berkman LF, Glass T, Brissette I, Seeman TE. From social integration to health: Durkheim in the new millennium. Soc Sci Med. 2000;51(6):843–57.

Article   CAS   PubMed   Google Scholar  

Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exercise Health. 2019;11(4):589–97. https://doi.org/10.1080/2159676X.2019.1628806 .

Article   Google Scholar  

Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis?. Qual Res Psychol. 2020:1–25. https://doi.org/10.1080/14780887.2020.1769238 .

Brooks SK, Webster RK, Smith LE, Woodland L, Wessely S, Greenberg N, et al. The psychological impact of quarantine and how to reduce it: rapid review of the evidence. Lancet. 2020;395(10227):912–20. https://doi.org/10.1016/S0140-6736(20)30460-8 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Bu F, Steptoe A, Fancourt D. Loneliness during a strict lockdown: trajectories and predictors during the COVID-19 pandemic in 38,217 United Kingdom adults. Soc Sci Med. 2020a;265:113521. https://doi.org/10.1016/j.socscimed.2020.113521 .

Article   PubMed   PubMed Central   Google Scholar  

Bu F, Steptoe A, Mak HW, Fancourt D. Time-use and mental health during the COVID-19 pandemic: A panel analysis of 55,204 adults followed across 11 weeks of lockdown in the UK: Medrxiv: The Preprint Server for Health Sciences; 2020b. https://doi.org/10.1101/2020.08.18.20177345 .

Burton A, McKinlay AR, Aughterson H, Fancourt D. Impact of the Covid-19 pandemic on the mental health and wellbeing of adults with mental health conditions in the UK: A qualitative interview study: Medrxiv: The Preprint Server for Health Sciences; 2020a. https://doi.org/10.1101/2020.12.01.20241067 .

Burton JK, Bayne G, Evans C, Garbe F, Gorman D, Honhold N, et al. Evolution and effects of COVID-19 outbreaks in care homes: A population analysis in 189 care homes in one geographical region of the UK. Lancet Healthy Longevity. 2020b;1(1):e21–31. https://doi.org/10.1016/S2666-7568(20)30012-X .

Article   PubMed   Google Scholar  

CDC COVID-19 Response Team, CDC COVID-19 Response Team, Bialek S, Boundy E, Bowen V, Chow N, Cohn A, et al. Severe outcomes among patients with coronavirus disease 2019 (COVID-19)—United States, February 12–March 16, 2020. MMWR Morb Mortal Wkly Rep. 2020;69(12):343–6. https://doi.org/10.15585/mmwr.mm6912e2 .

Charles ST, Carstensen LL. Social and emotional aging. Annu Rev Psychol. 2010;61(1):383–409. https://doi.org/10.1146/annurev.psych.093008.100448 .

Denton FT, Spencer BG. Chronic health conditions: changing prevalence in an aging population and some implications for the delivery of health care services. Can J Aging. 2010;29(1):11–21. https://doi.org/10.1017/S0714980809990390 .

Eriksson M, Lindstrom B. Antonovsky’s sense of coherence scale and its relation with quality of life: A systematic review. J Epidemiol Community Health. 2007;61(11):938–44. https://doi.org/10.1136/jech.2006.056028 .

Etezadi S, Pushkar D. Why are wise people happier? An explanatory model of wisdom and emotional well-being in older adults. J Happiness Stud. 2013;14(3):929–50. https://doi.org/10.1007/s10902-012-9362-2 .

Fancourt D, Steptoe A, Bu F. Trajectories of anxiety and depressive symptoms during enforced isolation due to COVID-19 in England: A longitudinal observational study. Lancet Psychiatry. 2020;8(2):141–9. https://doi.org/10.1016/S2215-0366(20)30482-X .

Forbes DA. Enhancing mastery and sense of coherence: important determinants of health in older adults. Geriatr Nurs. 2001;22(1):29–32. https://doi.org/10.1067/mgn.2001.113532 .

Garg S, Kim L, Whitaker M, O’Halloran A, Cummings C, Holstein R, et al. Hospitalization rates and characteristics of patients hospitalized with laboratory-confirmed coronavirus disease 2019—COVID-NET, 14 states, March 1–30, 2020. MMWR Morb Mortal Wkly Rep. 2020;69(15):458–64. https://doi.org/10.15585/mmwr.mm6915e3 .

Goveas JS, Shear MK. Grief and the COVID-19 pandemic in older adults. Am J Geriatr Psychiatry. 2020;28(10):1119–25. https://doi.org/10.1016/j.jagp.2020.06.021 .

Groarke JM, Berry E, Graham-Wisener L, McKenna-Plumley PE, McGlinchey E, Armour C. Loneliness in the UK during the COVID-19 pandemic: cross-sectional results from the COVID-19 psychological wellbeing study. PLoS One. 2020;15(9):e0239698. https://doi.org/10.1371/journal.pone.0239698 .

Holingue C, Badillo-Goicoechea E, Riehm KE, Veldhuis CB, Thrul J, Johnson RM, et al. Mental distress during the COVID-19 pandemic among US adults without a pre-existing mental health condition: findings from American trend panel survey. Prev Med. 2020;139:106231. https://doi.org/10.1016/j.ypmed.2020.106231 .

Holmes EA, O’Connor RC, Perry VH, Tracey I, Wessely S, Arseneault L, et al. Multidisciplinary research priorities for the COVID-19 pandemic: A call for action for mental health science. Lancet Psychiatry. 2020;7(6):547–60. https://doi.org/10.1016/S2215-0366(20)30168-1 .

Holt-Lunstad J, Smith TB, Baker M, Harris T, Stephenson D. Loneliness and social isolation as risk factors for mortality: A meta-analytic review. Perspect Psychol Sci. 2015;10(2):227–37. https://doi.org/10.1177/1745691614568352 .

Ioannidis JPA, Axfors C, Contopoulos-Ioannidis DG. Second versus first wave of COVID-19 deaths: shifts in age distribution and in nursing home fatalities: Medrxiv: The Preprint Server for Health Sciences; 2020. https://doi.org/10.1101/2020.11.28.20240366 .

Kivi M, Hansson I, Bjälkebring P. Up and about: older adults’ well-being during the COVID-19 pandemic in a Swedish longitudinal study. J Gerontol B Psychol Sci Soc Sci. 2020;76(2):e4–9. https://doi.org/10.1093/geronb/gbaa084 .

Article   PubMed Central   Google Scholar  

Krendl AC, Perry BL. The impact of sheltering-in-place during the COVID-19 pandemic on older adults’ social and mental well-being. J Gerontol B Psychol Sci Soc Sci. 2020. https://doi.org/10.1093/geronb/gbaa110 .

Li LZ, Wang S. Prevalence and predictors of general psychiatric disorders and loneliness during COVID-19 in the United Kingdom. Psychiatry Res. 2020;291:113267. https://doi.org/10.1016/j.psychres.2020.113267 .

Lima CK, de Medeiros Carvalho PM, Lima ID, de Oliveira Nunes JV, Saraiva JS, de Souza RI, et al. The emotional impact of coronavirus 2019-nCoV (new coronavirus disease). Psychiatry Res. 2020;287:112915. https://doi.org/10.1016/j.psychres.2020.112915 .

Morgan C, Rose N. Multidisciplinary research priorities for the COVID-19 pandemic. Lancet Psychiatry. 2020;7(7):e33. https://doi.org/10.1016/S2215-0366(20)30230-3 .

O’Connor C, Joffe H. Intercoder reliability in qualitative research: debates and practical guidelines. Int J Qual Methods. 2020;19:160940691989922. https://doi.org/10.1177/1609406919899220 .

Office for National Statistics. (2020). People with long-term health conditions, UK: January to December 2019. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/adhocs/11478peoplewithlongtermhealthconditionsukjanuarytodecember2019

Google Scholar  

Philip KEJ, Polkey MI, Hopkinson NS, Steptoe A, Fancourt D. Social isolation, loneliness and physical performance in older-adults: fixed effects analyses of a cohort study. Sci Rep. 2020;10(1):13908. https://doi.org/10.1038/s41598-020-70483-3 .

Pierce M, Hope H, Ford T, Hatch S, Hotopf M, John A, et al. Mental health before and during the COVID-19 pandemic: A longitudinal probability sample survey of the UK population. Lancet Psychiatry. 2020;7(10):883–92. https://doi.org/10.1016/S2215-0366(20)30308-4 .

Razai MS, Oakeshott P, Kankam H, Galea S, Stokes-Lampard H. Mitigating the psychological effects of social isolation during the covid-19 pandemic. BMJ. 2020:m1904. https://doi.org/10.1136/bmj.m1904 .

Santini ZI, Jose PE, York Cornwell E, Koyanagi A, Nielsen L, Hinrichsen C, et al. Social disconnectedness, perceived isolation, and symptoms of depression and anxiety among older Americans (NSHAP): A longitudinal mediation analysis. Lancet Public Health. 2020;5(1):e62–70. https://doi.org/10.1016/S2468-2667(19)30230-0 .

Strang P, Fürst P, Schultz T. Excess deaths from COVID-19 correlate with age and socio-economic status. A database study in the Stockholm region. Ups J Med Sci. 2020;125(4):297–304. https://doi.org/10.1080/03009734.2020.1828513 .

Takashima R, Onishi R, Saeki K, Hirano M. Perception of COVID-19 restrictions on daily life among Japanese older adults: A qualitative focus group study. Healthcare. 2020;8(4):450. https://doi.org/10.3390/healthcare8040450 .

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57. https://doi.org/10.1093/intqhc/mzm042 .

van Tilburg TG, Steinmetz S, Stolte E, van der Roest H, de Vries DH. Loneliness and mental health during the COVID-19 pandemic: A study among Dutch older adults. J Gerontol B Psychol Sci Soc Sci. 2020. https://doi.org/10.1093/geronb/gbaa111 .

World Health Organisation. (2020). Coronavirus disease 2019 (COVID-19) Situation Report – 51. https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200311-sitrep-51-covid-19.pdf?sfvrsn=1ba62e57_10

Wright L, Steptoe A, Fancourt D. Are we all in this together? Longitudinal assessment of cumulative adversities by socioeconomic position in the first 3 weeks of lockdown in the UK. J Epidemiol Community Health. 2020:jech-2020-214475. https://doi.org/10.1136/jech-2020-214475 .

Wu Z, McGoogan JM. Characteristics of and important lessons from the coronavirus disease 2019 (COVID-19) outbreak in China: summary of a report of 72 314 cases from the Chinese Center for Disease Control and Prevention. JAMA. 2020;323(13):1239–42. https://doi.org/10.1001/jama.2020.2648 .

Xiong J, Lipsitz O, Nasri F, Lui LMW, Gill H, Phan L, et al. Impact of COVID-19 pandemic on mental health in the general population: A systematic review. J Affect Disord. 2020;277:55–64. https://doi.org/10.1016/j.jad.2020.08.001 .

Download references

Acknowledgements

The researchers are grateful for the support of AgeUK, the Alzheimer’s Society and Healthwise Wales during recruitment. Many thanks to Anna Roberts, Louise Baxter Sara Esser and Rana Conway for their help with conducting interviews. Thank you to the COVID-19 Social Study Team (Tom May, Katey Warren, Joanna Dawes, and Henry Aughterson) who provided feedback on the themes and subthemes. We wish to thank the anonymous reviewers for their constructive suggestions that helped us to refine this manuscript.

This work was supported by the Nuffield Foundation [WEL/FR-000022583], but the views expressed are those of the authors and not necessarily the Foundation. The study was also supported by the MARCH Mental Health Network funded by the Cross-Disciplinary Mental Health Network Plus initiative supported by UK Research and Innovation [ES/S002588/1], and by the Wellcome Trust [221400/Z/20/Z]. DF was funded by the Wellcome Trust [205407/Z/16/Z].

Author information

Authors and affiliations.

Research Department of Behavioural Science and Health, Institute of Epidemiology & Health Care, University College London, 1-19 Torrington Place, London, WC1E 7HB, UK

A. R. McKinlay, D. Fancourt & A. Burton

You can also search for this author in PubMed   Google Scholar

Contributions

DF and AB were involved with study design. AM collected study data and led the analysis and interpretation of study findings, with support from AB. AM wrote the first paper draft. DF and AB provided critical revisions. All authors have read and approve the final version of the manuscript.

Corresponding author

Correspondence to A. R. McKinlay .

Ethics declarations

Ethics approval and consent to participate.

The University College London Ethics Committee reviewed and approved this study (Project ID: 14895/005). After receipt of a Participant Information Sheet and opportunity to ask questions, all participants then provided written informed consent to participate. We confirm that all methods were carried out in accordance with relevant guidelines and regulations under ethics approval, including participants’ informed consent to participate.

Consent for publication

All participants provided written informed consent for study publication.

Competing interests

None declared.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1..

Interview topic guide: Adult groups.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

McKinlay, A.R., Fancourt, D. & Burton, A. A qualitative study about the mental health and wellbeing of older adults in the UK during the COVID-19 pandemic. BMC Geriatr 21 , 439 (2021). https://doi.org/10.1186/s12877-021-02367-8

Download citation

Received : 14 January 2021

Accepted : 29 June 2021

Published : 26 July 2021

DOI : https://doi.org/10.1186/s12877-021-02367-8

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Older adults
• Mental health
• Social support

BMC Geriatrics

ISSN: 1471-2318

• Submission enquiries: [email protected]
• General enquiries: [email protected]

The web of silence: a qualitative case study of early intervention and support for healthcare workers with mental ill-health

Affiliation.

• 1 School of Rehabilitation Science, McMaster University, Institute for Applied Health Science, 4th Floor, 1400 Main St, W,, Hamilton ON L8S 1C7, Canada. [email protected].
• PMID: 24507543
• PMCID: PMC3929153
• DOI: 10.1186/1471-2458-14-138

Background: There is a high rate of stress and mental illness among healthcare workers, yet many continue to work despite symptoms that affect their performance. Workers with mental health issues are typically ostracized and do not get the support that they need. If issues are not addressed, however, they could become worse and compromise the health and safety, not only of the worker, but his/her colleagues and patients. Early identification and support can improve work outcomes and facilitate recovery, but more information is needed about how to facilitate this process in the context of healthcare work. The purpose of this study was to explore the key individual and organizational forces that shape early intervention and support for healthcare workers who are struggling with mental health issues, and to identify barriers and opportunities for change.

Methods: A qualitative, case study in a large, urban healthcare organization was conducted in order to explore the perceptions and experiences of employees across the organization. In-depth interviews were conducted with eight healthcare workers who had experienced mental health issues at work as well as eight workplace stakeholders who interacted with workers who were struggling (managers, coworkers, union leaders). An online survey was completed by an additional 67 employees. Analysis of the interviews and surveys was guided by a process of interpretive description to identify key barriers to early intervention and support.

Results: There were many reports of silence and inaction in response to employee mental health issues. Uncertainty in identifying mental health problems, stigma regarding mental ill health, a discourse of professional competence, social tensions, workload pressures, confidentiality expectations and lack of timely access to mental health supports were key forces in preventing employees from getting the help that they needed. Although there were a few exceptions, the overall study findings point to many barriers to supporting employees with mental health issues.

Conclusions: In order to address the complex knowledge, attitudinal, interpersonal and organizational barriers to action, a multi-layered knowledge translation strategy is needed, that considers not only mental health literacy and anti-stigma interventions, but addresses the unique context of the work environment that can act as a barrier to change.

Publication types

• Research Support, Non-U.S. Gov't
• Delivery of Health Care / organization & administration*
• Early Medical Intervention
• Health Personnel / psychology*
• Mental Disorders / diagnosis
• Mental Disorders / psychology
• Mental Disorders / therapy*
• Organizational Culture
• Professional Competence
• Professional Impairment / psychology*
• Qualitative Research
• Social Stigma
• Workplace / psychology

Advertisement

Barriers to Accessing Mental Health Care Under the Mental Health Services Act: A Qualitative Case Study in Orange County, California

• Original Paper
• Published: 19 September 2022
• Volume 59 , pages 381–390, ( 2023 )

Cite this article

• Elizabeth Siantz   ORCID: orcid.org/0000-0001-8305-3818 1 ,
• Sarah Hiller 2 ,
• Victoria D. Ojeda 2 &
• Todd P. Gilmer 2  

1289 Accesses

8 Altmetric

Explore all metrics

Despite progress made under California’s Mental Health Services Act, limited access to care for cultural and linguistic minority groups remains a serious issue in community mental health. In this qualitative study we report findings from a large-scale community-level assessment that explored barriers to accessing care from the perspectives of multiple stakeholders including county advisors, advocates, community members, and consumers representing a range of cultural and linguistic communities in Orange County, California. We conducted 14 focus groups with N = 112 participants. Qualitative analysis revealed that system fragmentation, limited availability of linguistically appropriate care, and stigma continue to undermine access to mental health care. Peer health navigation and culturally responsive peer support are potential ways to promote service engagement with persons from cultural and linguistic minority groups that encounter barriers when accessing mental health services.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price includes VAT (Russian Federation)

Instant access to the full article PDF.

Rent this article via DeepDyve

Institutional subscriptions

Similar content being viewed by others

Demand and access to mental health services: a qualitative formative study in Nepal

Natassia F Brenman, Nagendra P Luitel, … Mark J D Jordans

A Community Mental Health Needs Assessment of a Racially and Ethnically Diverse Population in New England: Narratives from Community Stakeholders

Rosalie A. Torres Stone, Esteban V. Cardemil, … Karyn E. Clark

Reimagining mental health care for newcomer children and families: a qualitative framework analysis of service provider perspectives

Amanda Sim, Afreen Ahmad, … Katholiki Georgiades

Amelia Seraphia, Derr (2016) Mental Health Service Use Among Immigrants in the United States: A Systematic Review. Psychiatric Services 67(3) 265-274 10.1176/appi.ps.201500004

Article   Google Scholar  

Alegría, M., Alvarez, K., Ishikawa, R. Z., DiMarzio, K., & McPeck, S. (2016). Removing obstacles to eliminating racial and ethnic disparities in behavioral health care. Health Affairs , 35 (6), 991–999. doi: https://doi.org/10.1377/hlthaff.2016.0029

Ashwood, K., Chamberlain, et al. (2018). Evaluation of the Mental Health Services Act in Los Angeles County: implementation and outcomes for key programs.Rand Health Quarterly,

Bombard, Y., Baker, G. R., Orlando, E., Fancott, C., Bhatia, P., Casalino, S., & Pomey, M. P. (2018). Engaging patients to improve quality of care: a systematic review. Implementation Science , 13 (1), 1–22. doi: https://doi.org/10.1186/s13012-018-0784-z

Boivin, A., Lehoux, P., Lacombe, R., Burgers, J., & Grol, R. (2014). Involving patients in setting priorities for healthcare improvement: a cluster randomized trial. Implementation Science , 9 (1), 24. doi: https://doi.org/10.1186/1748-5908-9-24

Boyatzis, R. E. (1998). Transforming qualitative information: Thematic analysis and code development. Sage Publications, Inc.

Buchmueller, T. C., & Levy, H. G. (2020). The ACA’s Impact On Racial And Ethnic Disparities In Health Insurance Coverage And Access To Care. Health Affairs , 39 (3), 395–402. doi: https://doi.org/10.1377/hlthaff.2019.01394

Cabassa, L. J., Siantz, E., Nicasio, A., Guarnaccia, P., & Lewis-Fernández, R. (2014). Contextual factors in the health of people with serious mental illness. Qualitative Health Research , 24 (8), 1126–1137. doi: https://doi.org/10.1177/1049732314541681

Cashin, C., Scheffler, R., Felton, M., et al. (2008). Transformation of the California mental health system: stakeholder-driven planning as a transformational activity. Psychiatric Services , 59 , 1107–1114. doi: https://doi.org/10.1176/ps.2008.59.10.1107

Chinman, M., George, P., Dougherty, R. H., Daniels, A. S., Ghose, S. S., Swift, A., & Delphin-Rittmon, M. E. (2014). Peer support services for individuals with serious mental illnesses: assessing the evidence. Psychiatric Services, 65(4), 429-441. https://doi.org/10.1176/appi.ps.201300244

Coleman, K. J., Stewart, C., Waitzfelder, B. E., Zeber, J. E., Morales, L. S., Ahmed, A. T., & Hunkeler, E. M. (2016). Racial-ethnic differences in psychiatric diagnoses and treatment across 11 health care systems in the mental health research network. Psychiatric Services , 67 (7), 749–757. doi: https://doi.org/10.1176/appi.ps.201500217

County Funding Request for Mental Health Services Act (MHSA) Community Program Planning. Letter No. 05 – 01. Sacramento, State of California, Department of Mental Health, Jan 18, 2005. Available at: https://www.dhcs.ca.gov/formsandpubs/MHArchiveLtrs/MH-Ltrs05-01.pdf

Derr, A. S. (2016). Mental health service use among immigrants in the United States: A systematic review. Psychiatric Services. 67(3), 265–274

Felton, M. C., Cashin, C. E., & Brown, T. T. (2010). What does it take? California county funding requests for recovery-oriented full service partnerships under the Mental Health Services Act. Community Mental Health Journal , 46 (5), 441–451. Doi: https://doi.org/10.1007/s10597-010-9304-6

Gilmer, T. P., Stefancic, A., Tsemberis, S., et al. (2014). Full-service partnerships among adults with serious mental illness in California: impact on utilization and costs. Psychiatric Services , 65 , 1120–1125. https://doi.org/10.1176/appi.ps.201300380

Gilmer, T. P., Henwood, B. F., Goode, M., Sarkin, A. J., & Innes-Gomberg, D. (2016). Implementation of integrated health homes and health outcomes for persons with serious mental illness in Los Angeles County. Psychiatric Services , 67 (10), 1062–1067. doi https://doi.org/10.1176/appi.ps.201500092

Health Resources Service Administration: Retrieved from: https://data.hrsa.gov/tools/shortage-area/hpsa-find Accessed 6/23/2022

Kelly, E., Fulginiti, A., Pahwa, R., Tallen, L., Duan, L., & Brekke, J. S. (2014). A pilot test of a peer navigator intervention for improving the health of individuals with serious mental illness. Community mental health journal, 50(4), 435–446

Macdonell, K., Christie, K., Robson, K., Pytlik, K., Lee, S. K., & O’Brien, K. (2013). Implementing family-integrated care in the NICU: engaging veteran parents in program design and delivery. Advancing Neonatal Care , 13 (4), 262–269. doi: https://doi.org/10.1097/ANC.0b013e31829d8319

Manuel, J. I. (2018). Racial/ethnic and gender disparities in health care use and access. Health Services Research , 53 (3), 1407–1429. doi: https://doi.org/10.1111/1475-6773.12705

Miles, M. B., & Huberman, A. M. (1994). Qualitative Data Analysis: An Expamded Sourcebook (2nd ed.). Thousand Oaks: Sage

Google Scholar  

Sunderji, N., Nicholas Angl, E., Polaha, J., & Gao, C. (2019). Why and how to use patient-oriented research to promote translational research

Ojeda, V. D., Hiller, S. P., Hurst, S., Jones, N., McMenamin, S., Burgdorf, J., & Gilmer, T. P. (2016). Implementation of Age-Specific Services for Transition-Age Youths in California. Psychiatric Services , 67 (9), 970–976. doi: https://doi.org/10.1176/appi.ps.201500084

Ojeda, V. D., Munson, M. R., Jones, N., Berliant, E., & Gilmer, T. P. (2021). The Availability of Peer Support and Disparities in Outpatient Mental Health Service Use Among Minority Youth with Serious Mental Illness. Administration and Policy in Mental Healthand Mental Health Services Research , 48 (2), 290–298. doi: https://doi.org/10.1007/s10488-020-01073-8

Park-Lee, E., Lipari, R. N., Hedden, S. L., Kroutil, L. A., & Porter, J. D. (2012). 2017 Sep. CBHSQ Data Review . Rockville (MD): Substance Abuse and Mental Health Services Administration (US). Receipt of Services for Substance Use and Mental Health Issues Among Adults: Results from the 2016 National Survey on Drug Use and Health

Siantz, E., Henwood, B., & Baezcondi-Garbanati, L. (2018). From physical wellness to cultural brokering: Unpacking the roles of peer providers in integrated health care settings. Community Mental Health Journal , 54 (8), 1127–1135. doi: https://doi.org/10.1007/s10597-018-0320-2

Starks, S. L., Arns, P. G., Padwa, H., Friedman, J. R., Marrow, J., Meldrum, M. L., & Braslow, J. T. (2017). System transformation under the California Mental Health Services Act: Implementation of full-service partnerships in LA County. Psychiatric Services , 68 (6), 587–595. doi: https://doi.org/10.1176/appi.ps.201500390

Substance Abuse and Mental Health Services Administration (2019). Key substance use and mental health indicators in the United States: Results from the 2018 National Survey on Drug Use and Health (HHS Publication No. PEP19-5068, NSDUH Series H-54). Retrieved from https://www.samhsa.gov/data/

Substance Abuse and Mental Health Services Administration, Racial. (2015). Ethnic Differences in Mental Health Service Use among Adults. HHS Publication No. SMA-15-4906 . Rockville, MD: Substance Abuse and Mental Health Services Administration

Nadiya, Sunderji Allyson, Ion Annie, Zhu Athina, Perivolaris David, Rodie Benoit H., Mulsant (2019) Challenges in conducting research on collaborative mental health care: a qualitative study. CMAJ Open 7(2) E405-E414 /cmajo/7/2/E405.atom https://doi.org/10.9778/cmajo.20180172

Palinkas, L. A., Criado, V., Fuentes, D., Shepherd, S., Milian, H., Folsom, D., & Jeste, D. V. (2007). Unmet needs for services for older adults with mental illness: comparison of views of different stakeholder groups. The American Journal of Geriatric Psychiatry , 15(6), 530-540

Patton, M. Q. (2005). Qualitative research. In Encyclopedia of statistics in behavioral science. Hoboken: Wiley.

Report to the Governer and Legislature (Dec 2013). Sacramento, CA,Mental Health Services Oversight and Accountability Commission,

Tran, L. D., & Ponce, N. A. (2017). Who gets needed mental health care? Use of mental health services among adults with mental illness in California. California Journal of Health Promotion , 15 (1), 36–45. https://doi.org/10.32398/cjhp.v15i1.1887

Villamil-Grest, C., Siantz, E., & Cederbaum, J. A. (2021). Behavioral health services use among racial and ethnic groups: Results from the California Health Interview Survey. Journal of Immigrant and Minority Health. 1-7. doi: https://doi.org/10.1007/s10903-021-01250-3

Download references

Author information

Authors and affiliations.

College of Social Work, University of Utah, Salt Lake City, UT, USA

Elizabeth Siantz

Herbert Wertheim School of Public Health and Human Longevity Sciences, University of California San Diego, La Jolla, CA, USA

Sarah Hiller, Victoria D. Ojeda & Todd P. Gilmer

You can also search for this author in PubMed   Google Scholar

Corresponding author

Correspondence to Elizabeth Siantz .

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Siantz, E., Hiller, S., Ojeda, V.D. et al. Barriers to Accessing Mental Health Care Under the Mental Health Services Act: A Qualitative Case Study in Orange County, California. Community Ment Health J 59 , 381–390 (2023). https://doi.org/10.1007/s10597-022-01016-7

Download citation

Received : 09 March 2022

Accepted : 01 August 2022

Published : 19 September 2022

Issue Date : February 2023

DOI : https://doi.org/10.1007/s10597-022-01016-7

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Mental health equity
• Qualitative
• Community mental health
• Cultural and linguistic diversity
• Access to mental health services
• Find a journal
• Publish with us
• Track your research

Diane Kratt 1 *

AM J QUALITATIVE RES, Volume 2, Issue 1, pp. 22-40

https://doi.org/10.29333/ajqr/5792

OPEN ACCESS   3339 Views   6279 Downloads

Download Full Text (PDF)

Given the prevalence of children’s mental health disorders, teachers’ roles have expanded to include identifying students with mental health needs and delivering mental health interventions. However, teachers rarely receive mental health training. This study’s purpose was to explore teachers’ perspectives on an educator mental health competency framework proposed by a group of researchers using the following questions: (a) how the competencies could guide and inform their practice; (b) how the teachers would react if the competencies were adopted; and (c) what suggestions they had for improving the competencies. The participants’ responses indicated that they needed more knowledge on mental health and larger systems of support to increase their classroom effectiveness. Overall, the teachers supported the adoption of the competencies but had reservations regarding the necessary training and implementation process. Although the participants did not provide direct suggestions on revisions to the competencies, they did imply suggestions. Findings support the use of the mental health curriculum framework in the development of teacher mental health training. Several implications for practice are proposed including the addition of mental health curriculum in teacher preparation programs and the necessity for school administrators to create a school culture and infrastructure to effectively support school mental health.

Keywords: school mental health, educator competencies, teacher preparation, professional development, social emotional development

• Adelman, H. S., & Taylor, L. (2010). Mental health in schools: Engaging learners, preventing problems, and improving schools. Thousand Oaks, CA: Corwin.
• Anderson-Butcher, D. (2006). The role of the educator in early identification, referral, and linkage. In R. Waller (Ed.), Fostering child & adolescent mental health in the classroom (pp. 257-274). Thousand Oaks, CA: Sage Publications. doi:10.4135/9781452232355.n15
• Arslan, S. & Yiğit, M. F. (2016). Investigation of the Impact of Emotional Intelligence Efficacy on Teachers' Multicultural Attitudes. Journal of Education and Practice, 7(11), 147-157.
• Ball, A., Iachini, A. L., Bohnenkamp, J. H., Togno, N. M., Brown, E. L., Hoffman, J. A., & George, M. W. (2016). School mental health content in state in-service K-12 teaching standards in the United States. Teaching and Teacher Education, 60, 312-320. doi:10.1016/j.tate.2016.08.020
• Bishop, D. C., Giles, S. M., & Bryant, K. S. (2005). Teacher receptiveness toward web-based training and support. Teaching and Teacher Education, 21(1), 3-14. doi:10.1016/j.tate.2004.11.002
• Bradshaw, C. P., Bottiani, J. H., Osher, D., & Sugai, G. (2014). The integration of positive behavioral interventions and supports and social and emotional learning. In M. Weist, N. Lever, C. Bradshaw, & J. Owens (Eds.), Handbook of school mental health (pp. 101- 118). New York, NY: Springer.
• Cammack, N. L., Brandt, N. E., Slade, E., Lever, N. A., & Stephan, S. (2014). Funding expanded school mental health programs. In M. Weist, N. Lever, C. Bradshaw, & J. Owens (Eds.), Handbook of school mental health (pp. 17-30). New York, NY: Springer.
• Carothers, D. & Parfitt, C. (2017). Disability or Language Difference: How Do We Decide? American Journal of Qualitative Research, 1(1), 1-12.
• Climie, E. A. (2015). Canadian children’s mental health building capacity in school-based intervention. Intervention in School and Clinic, 51(2), 122-125.
• Creswell, J.W. (2013). Qualitative inquiry & research design: Choosing among five approaches (3rd ed.). Los Angeles, CA: Sage Publications.
• Deniz, M., & Ersoy, E. (2016). Examining the Relationship of Social Skills, Problem Solving and Bullying in Adolescents. International Online Journal of Educational Sciences, 8(1), 1 -7.
• Ekornes, S. (2017). Teacher stress related to student mental health promotion: The match between perceived demands and competence to help students with mental health problems. Scandinavian Journal of Educational Research, 61(3), 333-353. doi:10.1080/00313831.2016.1147068
• Elias, M. J., Zins J. E., Graczyk, P. A., & Weissberg, R. P. (2003). Implementation, sustainability, and scaling up of social-emotional and academic innovations in public schools. School Psychology Review, 32(3), 303-319.
• Ersoy, E. (2015). Assessment of Adolescent Perceptions on Parental Attitudes on Different Variables. Journal of Education and Training Studies, 3(5), 165-176.
• Ersoy, E., & Ugur, H. (2015). The Relationship between Students’ Self-esteem and Parental Attitudes in Turkish Society. The Anthropologist, 21(1-2), 112-119.
• Ersoy, E., & Deniz, M. E. (2016). Psychometric Properties of the Gifted Students' Coping with Anger and Decision Making Skills Scale. Journal of Education and Practice, 7(15), 121-128.
• Franklin, C. G. S., Kim, J. S., Ryan, T. N., Kelly, M. S., & Montgomery, K. L. (2012). Teacher involvement in school mental health interventions: A systematic review. Children and Youth Services Review, 34(5), 973-982. doi:10.1016/j.childyouth.2012.01.027
• Gray, D. E., Ilse, P., & Watson, S. (2011). Spanning the HRD academic-practitioner divide: Bridging the gap through mode 2 research. Journal of European Industrial Training, 35(3), 247-263. doi:10.1108/03090591111120403
• Gore, J. M. & Gitlin, A. D. (2004). [RE]visioning the academic-teacher divide: Power and knowledge in the educational community. Teachers and Teaching, 10(1), 35-58. doi:10.1080/13540600320000170918
• Graham, A., Phelps, R., Maddison, C., & Fitzgerald, R. (2011). Supporting children’s mental health in schools: Teacher views. Teachers and Teaching: Theory and Practice, 17(4), 479-496.
• Greenglass, E. R., & Burke, R. J. (2003). Teacher Stress. In M. F. Dollard, A. H. Winefield, & H. Winefield (Eds.), Occupational Stress in the Service Professions (pp. 213-236). London: Taylor & Francis. doi:10.1201/9780203422809.ch8
• Han, S. S., & Weiss B. (2005). Sustainability of teacher implementation of school-based mental health programs. Journal of Abnormal Child Psychology, 33(6), 665-679. doi:10.1007/s10802-005-7646-2 Brooks, J. G. (1999, December 30). In search of understanding: The case for constructivist classrooms. [Review of the book, by C. Halpern]. American Journal of Qualitative Research, 1(1), 32-36.
• Hoagwood, K. E., Cavaleri, M. A., Olin, S. S., Burns, B. J., Slaton, E., Gruttadaro, D. & Hughes, R. (2010). Family support in children’s mental health: A review and synthesis. Clinical Child and Family Psychology Review, 13(1), 1-45.
• Jorm, A. F., Kitchener, B. A., Sawyer, M. G., Scales, H., & Cvetkovski, S. (2010). Mental health first aid training for high school teachers: A cluster randomized trial. BMC Psychiatry, 10(51). doi:10.1186/1471-244X-10-51
• Knowles, M. S. (1984). Andragogy in action: Applying modern principles of adult learning. San Francisco, CA: Jossey-Bass.
• Koller, J. R., Osterlind, S., Paris, K., & Weston, K. J. (2004). Differences between novice and expert teachers’ undergraduate preparation and ratings of importance in the area of children’s mental health. International Journal of Mental Health Promotion, 6(2), 40-45.
• Lafee, S. (2013). The school’s role in students’ mental health. School Administrator, 7(70), 24-30.
• Mazzer, K. R. & Rickwood, D. J. (2014). Teachers’ role breadth and perceived efficacy in supporting student mental health. Advances in School Mental Health Promotion, 8(1), 29-41. doi:10.1080/1754730X.2014.978119
• McDaniel, H. L., Schiele, B. E., Taylor, L. K., Haak, J., & Weist, M. D. (2014). Strengthening components and processes of family involvement in school mental health. In M. Weist, N. Lever, C. Bradshaw, & J. Owens (Eds.), Handbook of school mental health (pp. 195-207). New York, NY: Springer. doi:10.1007/978-1-4614-7624-5_15
• McGorry, P., Bates, T., & Birchwood, M. (2013). Designing youth mental health services for the 21st century: Examples from Australia, Ireland and the UK. The British Journal of Psychiatry, 202(54), 30–35. doi:10.1192/bjp.bp.112.119214
• Meldrum, L., Venn, D., & Kutcher, S. (2009). Mental health in schools: How teachers have the power to make a difference. Health & Learning Magazine, 8, 3-5.
• National Center for Educational Statistics. (2014). Fast Facts. Washington, DC: Author. Retrieved from http://nces.ed.gov/fastfacts/display.asp?id=372
• National Research Council and Institute of Medicine. (2009). Preventing mental, emotional, and behavioral disorders among young people: Progress and possibilities. M.E. O’Connell, T. Boat, & K.E. Warner (Eds.), Board of Children, Youth, and Families, Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.
• Nellis, L. M. (2012). Maximizing the effectiveness of building teams in response to intervention implementation. Psychology in the Schools, 49(3), 245-256. doi:10.1002/pits.21594
• New Freedom Commission on Mental Health. (2003). Achieving the promise: Transforming mental health care in America final report (DHHS Pub. No. SMA-03-3832). Rockville, MD: U.S. Department of Health and Human Services.
• O’Connell, M. E., Boat, T., & Warner, K. E. (2009). Preventing mental, emotional, and behavioral disorders among young people: Progress and possibilities. Washington, DC: Committee on the Prevention of Mental Disorders and Substance Abuse Among Children, Youth, and Young Adults: Research Advances and Promising Interventions; Institute of Medicine; National Research Council, The National Academies Press.
• Paternite, C. E., & Johnston, T. C. (2005). Rationale and strategies for central involvement of educators in effective school-based mental health programs. Journal of Youth and Adolescence, 14(1), 41-49. doi:10.1007/s10964-005-1335-x
• Phillippo, K. L. & Kelly, M. S. (2014). On the fault line: A qualitative exploration of high school teachers’ involvement with student mental health issues. School Mental Health, 6(3). doi:10.1007/s12310-013-9113-5
• Rossen, E., & Cowan, K.C. (2014). Improving mental health in schools. Phi Delta Kappan, 96(4), 8-13. doi:10.1177/0031721714561438
• Rothi, D. M., Leavey, G., & Best, R. (2008). On the front-line: Teachers as active observers of pupils’ mental health. Teaching and Teacher Education, 24(5), 1217-1231. doi:10.1016/j.tate.2007.09.011
• Sawyer, M. G., Arney, F. M., Baghurst, P. A., Clark, J. J., Graetz, B. W., Kosky, R. J., Nurcombe, B., Patton, G. C., Prior, M. R., Raphael, B., Rey, J. M., Whaites, L. C., & Zubrick, S. R. (2001). The mental health of young people in Australia: key findings from the child and adolescent component of the national survey of mental health and well-being. Australian and New Zealand Journal of Psychiatry, 35(6), 806–814. doi:10.1046/j.1440-1614.2001.00964.x
• Schonert-Reichl, K. A. (2017). Social and emotional learning and teachers. The Future of Children, 27(1), 137-155.
• Shernoff, E.S., Frazier, S.L., Marinez-Lora, A.M., Lakind, D., Atkins, M.S., Jakobsons, L., Hamre, B.K., Bhaumik, D.K., Parker-Katz, M., Neal, J.W., Smylie, M.A., & Patel, D.A. (2016). Expanding the role of school psychologists to support early career teachers: A mixed-method study. School Psychology Review, 45(2), 226-249. doi:10.17105/SPR45-2.226-249
• Stake, R.E. (1995). The art of case study research. Thousand Oaks, CA: Sage Publications.
• Volk, A. A., Craig, W., Boyce, W., & King, M. (2006). Perceptions of parents, mental health, and school amongst Canadian adolescents from the provinces and the northern territories. Canadian Journal of School Psychology, 21(1-2), 33-46.
• Walter, H. J., Gouze, K., & Lim, K. G. (2006). Teachers’ beliefs about mental health needs in inner city elementary schools. Journal of the American Academy of Child and Adolescent Psychiatry, 45(1), 61-68.
• Waxman, R. P., Weist, M. D., & Benson, D. M. (1999). Toward collaboration in the growing education-mental health interface. Clinical Psychology Review, 19(2), 239-253. doi:10.1016/S0272-7358(98)00072-5
• Weist, M. D., & Evans, S. W. (2005). Expanded school mental health: Challenges and opportunities in an emerging field. Journal of Youth and Adolescence, 34(1), 3–6. doi:10.1007/s10964-005-1330-2
• Weist, M. D., Lever, N. A., Bradshaw, C. P., & Owens, J. S. (2014). Further advancing the field of school mental health. In M. Weist, N. Lever, C. Bradshaw, & J. Owens (Eds.), Handbook of school mental health (pp. 1-14). New York, NY: Springer. doi:10.1007/978-1-4614-7624-5_1
• Weist, M. D., Mellin, E. A., Chambers, K. L., Lever, N. A., Haber, D., & Blaber, C. (2012). Challenges to collaboration in school mental health and strategies for overcoming them. Journal of School Mental Health, 82(2), 97-105. doi:10.1111/j.1746-1561.2011.00672.x
• Weston, K. J., Anderson-Butcher, D., & Burke, R. W. (2008). Developing a comprehensive curriculum framework for teacher preparation in expanded school mental health. Advances in School Mental Health Promotion, 1(4), 25-36. doi:10.1080/1754730X.2008.9715737
• Weyns, T., Verschueren, K., Leflot, G., Onghena, P., Wouters, S., & Colpin, H. (2017). The role of teacher behavior in children's relational aggression development: A five-wave longitudinal study. Journal of School Psychology, 64, 17-27. doi:10.1016/j.jsp.2017.04.008
• Whitley, J., Smith, J. D., & Vaillancourt, T. (2012). Promoting mental health literacy among educators: Critical in school-based prevention and intervention. Canadian Journal of School Psychology, 28(1), 56-70. doi:10.1177/0829573512468852
• Williams, J. H., Horvath, V. E., Wei, H., Van Dorn, R. A., & Jonson-Reid, M. (2007). Teacher’s perspectives of children’s mental health service needs in urban elementary schools. Children & Schools, 29(2), 95-107.
• World Health Organization. (2003). Investing in mental health [Report]. Geneva, Switzerland: Author. Retrieved from www.who.int/mental_health/en/investing_in_mnh_final.pdf
• Yigit, I. H., & Tatch, A. (2017). Syrian refugees and Americans: Perceptions, attitudes and insights. American Journal of Qualitative Research, 1(1), 13-31.

• Open access
• Published: 14 November 2023

Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness

• Emily Watson 1 ,
• Sue Fletcher-Watson 2 &
• Elizabeth Joy Kirkham 2 , 3 , 4  

BMC Medical Ethics volume  24 , Article number:  99 ( 2023 ) Cite this article

1200 Accesses

2 Altmetric

Metrics details

Improving the ways in which routinely-collected mental health data are shared could facilitate substantial advances in research and treatment. However, this process should only be undertaken in partnership with those who provide such data. Despite relatively widespread investigation of public perspectives on health data sharing more generally, there is a lack of research on the views of people with mental illness.

Twelve people with lived experience of mental illness took part in semi-structured interviews via online video software. Participants had experience of a broad range of mental health conditions including anxiety, depression, schizophrenia, eating disorders and addiction. Interview questions sought to establish how participants felt about the use of routinely-collected health data for research purposes, covering different types of health data, what health data should be used for, and any concerns around its use.

Thematic analysis identified four overarching themes: benefits of sharing mental health data, concerns about sharing mental health data, safeguards, and data types. Participants were clear that health data sharing should facilitate improved scientific knowledge and better treatments for mental illness. There were concerns that data misuse could become another way in which individuals and society discriminate against people with mental illness, for example through insurance premiums or employment decisions. Despite this there was a generally positive attitude to sharing mental health data as long as appropriate safeguards were in place.

Conclusions

There was notable strength of feeling across participants that more should be done to reduce the suffering caused by mental illness, and that this could be partly facilitated by well-managed sharing of health data. The mental health research community could build on this generally positive attitude to mental health data sharing by following rigorous best practice tailored to the specific concerns of people with mental illness.

Peer Review reports

Large data sets, such as those generated from the routinely-collected data in health records, are becoming increasingly important for public health, contributing to improved service implementation, earlier disease prevention and treatment advances [ 1 , 2 , 3 ]. The term “routinely-collected data” has been defined in different ways, but in general it refers to data that were originally collected for a purpose other than research [ 4 ]. This could include but is not limited to health records [ 5 ], Census information [ 6 ], social media posts [ 7 ], and information held by government departments [ 8 ]. The present work focuses primarily, though not exclusively, on health records as a source of routinely-collected data. In relation to mental health, routinely-collected data has been used for a range of purposes, including developing more effective ways to identify suicide risk [ 9 ], examining the effect of neighbourhood regeneration on mental health [ 10 ], and identifying the extent to which antipsychotic medication is being prescribed for autistic children [ 11 ].

Research which uses routinely-collected data has advantages and disadvantages when compared to the more traditional research approach of recruiting individual participants to a specific study. When working with traditional methods researchers have more control and flexibility over the types of data that are collected and the research questions they can ask [ 12 ]. On the other hand, researchers using routinely-collected data can often access very large samples which facilitate discovery of small statistical effects which would be difficult to find in smaller samples [ 8 , 12 ]. Furthermore, routinely-collected health data can theoretically include all individuals who receive health care, as they do not rely on patients’ ability to contribute their own time and effort to research studies [ 13 , 14 , 15 ]. This can facilitate data samples that are more representative of the target population [ 16 ]. Both traditional methods and routinely-collected data are important for mental health research.

Whilst routinely-collected data can have major benefits for health research, they should only be used in a manner that is acceptable to the people whose data are being studied. In the case of health records, this may be the general public, or the individuals living with the condition(s) being investigated. The dangers of attempting to use such data without broad societal support were illustrated by the public failure of the “care.data” scheme. This was an English initiative designed to gather data from health records which was suspended and then scrapped following widespread public and professional outcry [ 17 ]. Carter and her colleagues argue that the scheme violated two of the key components involved in the use of routinely-collected data: trust, and confidence that the data would be used for public good. By contrast, successful UK initiatives such as the Case Register Interactive Search tool (CRIS) and the Secure Anonymised Data Linkage (SAIL) databank prioritised patient and public involvement in both their inception and their ongoing operations [ 18 , 19 ].

Previous work on this topic has found relatively high levels of public support for health data sharing (73–93% positive; 20 , 21 – 23 ]. However, this support is somewhat conditional, such that individuals typically want their data to be handled by an organisation they trust and used for the public good rather than for profit [ 24 , 25 ]. Research also suggests that people’s views vary according to the perceived sensitivity of the data, with mental health data cited as an example of sensitive health data [ 26 , 27 ]. The extent to which people with mental illness agree with this perception of mental health data as especially sensitive, or how they feel more broadly about sharing mental health data, remains unclear [ 28 ]. This is because the views of people with mental illness are largely missing from literature on health data sharing [ 23 , 28 ]. For example, none of the 25 studies emerging from Aitken and colleagues’ systematic literature review on health data sharing had explicitly recruited people with mental illness [ 25 ].

The small amount of prior research which has focused on the preferences of people with mental illness found that factors which influence willingness to share health data include their prior experiences with health care services [ 23 , 29 , 30 ], stigma and the perceived risk of discrimination [ 31 ], and, similar to the wider general public, their trust in the organisation accessing the data [ 32 ]. There is also early evidence to suggest that people with mental illness may actually be more willing than those without to share their health data for research purposes [ 24 ], at least once other factors such as lower overall satisfaction with healthcare have been accounted for [ 23 ]. This may be due to a desire to help other people with the same health conditions [ 23 , 28 ]. However, this finding of increased willingness to share such data is not universal [ 33 ].

At present, researchers’ access to routinely-collected mental health data is heavily limited, in part due to concerns around the presumed sensitivity of such data [ 34 ]. However, it remains unclear whether this approach reflects the preferences of people with mental illness, due to a lack of research on the topic [ 24 ]. Much of the research which does exist in this field focuses on survey data [ 20 , 23 , 24 ], and is therefore better suited to identifying what people think rather than why they think it. Understanding the details and rationale behind people’s perspectives is necessary if efforts to increase the use of routinely-collected mental health data are to succeed [ 17 ]. In light of this, we conducted semi-structured interviews with 12 people with a range of mental health conditions to explore their perspectives on the use of routinely-collected mental health data for research purposes. The aim of the research was to identify how people with mental illness feel about mental health data sharing, and to understand why they felt this way.

Recruitment

Prior to the present interview study, our research team conducted a UK-wide online survey examining perspectives on mental health data sharing. This project is described in detail elsewhere [ 23 , 35 ]. Briefly, the survey was completed by approximately 1500 participants who responded to advertisements publicised via social media, posters, a science festival, and relevant research and clinical networks. Information on participant mental health was collected during the survey using a list of conditions that had been reviewed by clinicians, with an option for a free text entry if a specific condition was not covered. Individuals who took part in the survey were asked to leave their email address if they were interested in taking part in an interview on the same topic (mental health data sharing).

This list of email addresses was used to invite people with mental health conditions to take part in the present interview study. We aimed to make the interview sample as representative of the UK population as possible by prioritising invitations to demographic groups that were under-represented in the survey (men, people from minoritised ethnicities, and people who had not attended university). Prior to issuing invitations, we used the survey responses to identify potential participants with a diverse range of mental health conditions. We also sought specifically to invite participants from the minority who had responded “no” when the survey asked if they would share their mental health data for research purposes. This was challenging because the vast majority of survey participants (89.7%) had responded “yes” to this question, and those who didn’t often also did not consent to be followed up for this study.

Participants

Interview participants demographics, presented in Table  1 , were extracted from their aforementioned survey responses. The demographics of the interview sample were similar to the demographics of the survey sample [ 23 ], especially with respect to ethnicity and location within the UK. However, the interview sample contained a higher portion of male participants (50%) than the survey sample (33%), and as such more closely represented the gender distribution of the UK as a whole. While both the survey and interview samples contained a high proportion of individuals who had attended university, this was especially high in the interview sample (interview: 92%, survey: 60%). Participants’ experiences of mental illness were extracted from the survey data and confirmed at the beginning of the interview.

Positionality statement

This paper is written by three white women from the UK, two of whom are researchers and one of whom is a medical student at the time of writing. The interviewer is a female researcher who has lived experience of mental illness, a PhD in Psychology, and professional expertise in working with mental health data. She is part of a university research group which uses Big Data to answer questions about mental health. The person who analysed the data is a female fifth-year medical student (at the time of writing) who has completed a placement in psychiatry. She has previous experience in qualitative research during her intercalated BSc year and a BSc in Physical Activity for Health. The student who completed the analysis was supervised by the researcher who conducted the interviews.

Interviews were arranged by email. The participants did not have any other contact with the interviewing researcher prior to the interviews themselves. The participant information sheet stated that individuals aged 16 or over who had lived experience of mental illness and experience of using the NHS (for any reason) were “ invited to take part in an interview about [their] views on sharing health data for research purposes”. The University which hosted the research was named on the information sheet. The information sheet did not contain details about the interviewer’s background, but it could be deduced that she was a woman with a PhD.

Interview guide

The interview guide was developed through discussion within the research team, including an advisory group of community representatives (with lived experience of mental illness and working in mental health services) around the question “How do people feel about data sharing?”. An interview script from a previous qualitative study conducted by SFW’s team was used for guidance during the design phase [ 36 ]. The interview guide was semi structured, and the interviewer asked complementary questions if she deemed it appropriate. The interviewer engaged in a practice interview with Suzy Syrett, a peer researcher who has lived experience of mental illness and expertise in conducting research interviews. The full interview guide is available in the supplementary material.

Ethical approval for this study was provided by the Department of Clinical and Health Psychology Ethics Research Panel, University of Edinburgh, ref STAFF147. The research was performed in accordance with the ethical principles of the Declaration of Helsinki. All participants were provided with an information sheet and completed an informed consent form prior to taking part in the research. Semi-structured interviews were carried out online via Skype between July and November 2019. The researcher continued to conduct interviews until the point at which perceived data saturation was reached [ 37 , 38 ]: i.e. there was the subjective impression that each new participant was largely presenting perspectives already represented in the data. No other individuals were present at the time of interview. Before asking the pre-determined questions, the interviewer allowed time for the participant to become comfortable. It has been shown that allowing for this familiarity to develop fosters in-depth discussions [ 39 , 40 ]. During this time the interviewer described the terminology that she intended to use during the interview (i.e. “mental illness”) and checked whether the participant was comfortable with this terminology, or if they would prefer that the interviewer used different wording. The interviewer also spoke informally with the participant to check how they were in themselves and to reiterate the topic of the interview. Participants were asked if they would like to go through the information sheet (which they had read previously) with the interviewer, and if they had any questions about the interview process. This allowed the interviewer and participant to confirm that informed consent remained in place, and that the participant’s capacity to consent had not changed since they agreed to take part in the research. Once this had been established, the interviewer checked that the participant was happy for the subsequent conversation to be recorded. The interviewer then turned on the recording device and began the interview.

Interviews were recorded using the MP3 Skype recorder, which recorded only audio. The researcher who conducted the interviews transcribed five of the interviews and the remainder were transcribed by a paid professional transcriber. Due to a technical error, one interview was not recorded. In this case the interviewer’s notes were used instead. All identifiable information was removed from transcripts.

Data analysis

The structure of the analytical process was informed by the Framework Method [ 41 ], and both inductive and deductive coding were employed. Themes were not pre-planned and were derived from the dataset, but they were shaped by the research question: namely to discover how people with mental illness felt about mental health data sharing. The analysing researcher began by coding three transcripts, then using this information to develop a framework of codes (matrix). This framework matrix was then used to code the remaining transcripts (Fig.  1 ). After all transcripts had been coded, the analysing researcher used the completed matrix to interpret the data and generate themes. The themes were then reviewed by the other researchers. Following analysis, a thematic tree was created (Fig.  2 ).

The Framework Method (Amended from Gale, Heath, Cameron, Rashid & Redwood, 2013)

Hierarchical Thematic Map

Twelve interviews were conducted with people who had personal experience of mental illness. The mean interview length was 36 min, with the shortest interview lasting 15 min and the longest lasting 77 min.

Through framework analysis, four top level themes and eight subthemes were identified (Fig.  2 ). Details of the themes are included in Table  2 alongside illustrative quotes. Most participants were positive about data sharing for mental health research purposes, with one person stating “I am overwhelmingly I think, positive about data sharing, including with mental health ”. This generally positive attitude was accompanied by acknowledgement of the ways in which legitimate and illegitimate data access could be used to discriminate against people with mental illness, and a desire to mitigate against this.

Theme 1: benefits of sharing mental health data

Subtheme 1: delivering improvements for others with mental illness.

There was an overarching perception that sharing data could drive research progress, which in turn could reduce the suffering of other people with mental health conditions. One participant said, “if there was a button I could push and take bipolar disorder away from the world I would” . Several participants described the potential ways increased data sharing could support scientific research, using phrases such as “statistical power” in reference to the ability to uncover more effects with larger sample sizes. One participant stated “I don’t mind researchers having that information because I strongly believe in helping”. Participants talked about the role of research in uncovering the aetiology of mental health conditions, and valued the role of data in supporting robust research.

Subtheme 2: improving treatment and management of mental health conditions

Multiple participants described negative personal experiences of UK mental health services and their accessibility. They referred to UK mental health services as “ restrictive ”, “ shocking ” and “ frustrating ”, with one participant stating they hoped that “the NHS finally gets the funding it needs” . Within this context participants highlighted the potential for data sharing to facilitate improved mental health services. They also felt that sharing mental health data could lead to better treatments for mental ill health, with some discussing the concept of “personalised medicine,” in which treatments are tailored to a specific patient or group of patients. The adoption of a personalised medicine approach has helped to reduce mortality in cancer and heart disease, yet remains absent from mental health care, in part due to an historical lack of large mental health datasets [ 42 ]. The value of personalised medicine for mental health was highlighted by several of the participants’ own experiences of “trial and error”, with one individual expressing frustration about being placed on eleven different medications before finding one that worked.

Theme 2: concerns about sharing mental health data

Subtheme 3: stigma.

Concerns about being subject to stigma from the researchers who would potentially have access to their data came up several times, with one participant worrying that researchers may have “dangerous world views on certain mental health issues.” Participants also noted that greater access to mental health data could allow for increased discrimination from healthcare professionals. For example, one participant discussed the potential for increased data sharing to lead to more “diagnostic overshadowing”. Diagnostic overshadowing describes a phenomenon in which patients with mental illness are less likely to receive appropriate and timely care for a physical health condition because clinicians incorrectly attribute their symptoms to mental illness [ 43 ].

Subtheme 4: data misuse and data breaches

Many participants discussed concerns about data breaches, ranging from data misuse by private sector companies to impacts on their personal life. They expressed fear of being “excluded from reasonably priced insurance” , worries about “employer discrimination” and even losing child custody. It is important to note that these concerns were not necessarily focused on the risk of a data breach per se, but the risk of a data breach within a society that already discriminates against people with mental illness. For example, one participant discussed his experience of being denied life insurance after he bought his house, noting that “[mental health] seems to be the most strictly clamped down [on by insurance companies] out of anything else”, more so than physical risk factors such as smoking. He added, “it makes you feel uneasy that you are being financially disadvantaged because of some [mental illness] symptoms that you have had”.

Theme 3: safeguards

Subtheme 5: personnel.

Participants believed that researchers should have access to their mental health data on a “need to know” basis and that they should only be able to access specific information relevant to their research. Further, the concept of researcher accountability and institutional oversight appeared important, with one individual stating they would like any issues to be “tracked back” to the researcher.

Subtheme 6: practical measures

Overall participants appeared to have a high degree of understanding of safeguards in place for maintaining confidentiality within research. This may be due to the high proportion of participants with postgraduate degrees and relevant professional experience in the current sample. In fact, one individual said, “I am a fairly knowledgeable member of the public, so I don’t know if I am typical in that sense” . Most participants were happy for their data to be shared if all identifiable information was removed. However, some participants voiced concerns about being identified even if “ pseudonyms ” were used.

The principle of informed consent seemed very important to participants with regards to data sharing, with one participant saying, “ I think if information is going to get passed on, I would like to say yes or no…knowing that you can withdraw at any time.” However, there were inconsistencies between participants with regards to what they considered to be appropriate consent processes. One individual wanted to give consent on a “case by case” basis, whilst others didn’t feel as strongly.

Theme 4: data types

Subtheme 7: useful data.

A few participants identified that demographic data about people with mental health conditions might be particularly useful in research, with one individual stating that acquisition of such data “might help inform sort of realising that there is sort of major socio-economic issues in this particular health issue”. Furthermore, qualitative data such as “opinions on the service” and how doctors are “talking about the patients” were deemed particularly relevant to research. Several participants also mentioned the potential value of collecting data on factors associated with suicide. One participant commented on making the most of the existing data within NHS health records, “I think if my data could be used in a, a more secure way then I would be very happy with that. Otherwise, it’s just sitting there, and people could be benefitting from that” .

Subtheme 8: sensitive Data

Participants expressed opinions about certain data types being particularly sensitive. Some referred to social media data as being “a bit personal”. Notably, many participants identified genetic data as being particularly sensitive, raising concerns such as the possibility of “eugenics”. As aforementioned, the risk of identification in relation to mental health data worried participants. Participants held contrasting views about the relative sensitivities of physical and mental health data. Some participants believed that they should be considered “ equal ”, whilst others made it clear they thought that mental health data were more personal.

This research used interviews and thematic analysis to investigate how people with mental illness feel about sharing their mental health data for research purposes. Broadly speaking, participants perceived mental health data sharing as a resource that could be used to improve the lives of the wider population of people with mental illness. In particular, there was a focus on the potential for mental health data to facilitate scientific understanding, better treatment options, and improved services. Concerns were often connected to the potential for increased data access (whether sanctioned or illicit) to facilitate discrimination from researchers, healthcare professionals, and wider society (e.g. insurance companies). Participants generally advocated for the use of appropriate safeguards, such as de-identification or restrictions on who could access the data. There was an appreciation that a broad range of routinely-collected data could be useful for mental health research (e.g. demographic data, language used by health professionals), but the perceived sensitivity of these different types of data varied across participants.

The present finding that mental health data should be used for the “greater good” of people with mental illness is similar to the wider literature on the broader public’s perspective on sharing routinely-collected health data for research purposes [ 25 , 44 ]. Previous work has found that support for data sharing is linked to the perceived benefits to community, public and science [ 45 ]. Given the strength of feeling from many of the participants in the present research, it is possible that this altruistic approach to sharing health data may be particularly salient amongst people with mental illness (though we acknowledge that the limited representativeness of the present sample precludes firm assumptions of this nature). There was an overarching sense from the interviews that living with mental illness is extremely difficult, and many participants were motivated by a desire to prevent others going through the same experiences they had. Increased data sharing was perceived as one way to achieve this goal.

A core theme of the present research was the backdrop of stigma and discrimination against people with mental illness in society. Some, though not all, participants perceived mental health data as more sensitive than physical health data, and those that did often couched their concerns in the context of the risk of experiencing more discrimination, whether from researchers, healthcare professionals, private companies, or wider society [ 43 , 46 ]. Research into perspectives on routinely-collected data often refers to mental health data as “sensitive” [ 12 ], but the reasons behind this assumption have been relatively under-explored [ 23 ]. The present study adds more nuance to this topic and reiterates the chilling effect of stigma on scientific progress. In our co-produced guidance for mental health data science we highlighted the need for researchers to recognise the wider context in which their work takes place and take a proactive approach to reducing stigma within the field [ 16 , 47 ].

Participants highlighted various ways to mitigate the risks associated with sharing mental health data in a potentially discriminatory society. This included the need for particular care around de-identification [ 34 , 48 ], and a reminder that researchers should consider the various ways individuals could be identified from pseudonymous data (e.g. the combination of information across multiple fields could be used to identify an individual). In some cases participants also highlighted the need for control over their data in the form of consent mechanisms. The topic of consent is arguably one of the most challenging within health data sharing. Whilst members of the public sometimes express that they want to provide consent on a case-by-case basis, this can be impractical and work against some of the aforementioned benefits of data sharing, such as the unique opportunities afforded by large sample sizes. Notably, Aitken and colleagues [ 25 ] found in their systematic review that, though their initial preference may be for opt-in consent, participants typically move away from this model of consent following discussion of its implications. Nevertheless, it is important that policy decisions acknowledge the broad range of views surrounding the topic of consent. One option proposed by Jones and colleagues [ 24 ] would be to manage research access to NHS health data on an opt-out basis, with participants given the option to opt-out on the basis of whether the data would be used for clinical or research purposes, and whether or not it would be potentially identifiable. Future work should build on this nuanced approach to the question of consent, for example by exploring how people with mental illness feel about providing advanced and/or retrospective consent for research access to their health records.

Although the aim of this research was to examine perspectives on mental health data sharing, it would be remiss not to discuss participants’ difficulties accessing adequate care from UK mental health services. It is important to note that these interviews were conducted in 2019, prior to the onset of the Covid-19 pandemic. This highlights that whilst the pandemic has increased the burden on mental health services [ 49 ], these services were already struggling to meet people’s needs prior to the pandemic [ 23 ]. The myriad challenges faced by under-funded mental health services in the UK are extensive and have been discussed elsewhere [ 35 , 50 , 51 , 52 ]. However, one lesser-known impact of under-resourced mental health services is the effect on research and development. Many of the UK government’s priorities, such as the development of digital infrastructure, embedding of inclusive practices, and prioritisation of mental health [ 53 , 54 , 55 , 56 ], are held back by struggling services’ inability to facilitate them. Practical ways in which these goals are being hindered include reliance on over-stretched NHS staff to record high quality data [ 57 ], limited structural capacity to facilitate the data flow between the NHS and trusted researchers [ 34 , 57 ], and a low level of satisfaction with the NHS [ 58 ] which itself has been associated with reduced willingness to share mental health data [ 23 ]. Thus, investing in mental health services would likely have the added benefit of facilitating faster scientific progress in the field of mental health.

Strengths and limitations

A key strength of this study is that the sample was made up of individuals with mental health conditions, whose opinions are rarely prioritised in research on health data sharing. Importantly, individuals had experience with a variety of mental health conditions, including schizophrenia, bipolar disorder and depression. The results of qualitative research are not designed to be applicable to the entire population. Nonetheless, a limitation of this study is the lack of racial diversity within the dataset. Eleven of the twelve participants were white. This is especially pertinent to the topic of mental health data sharing, given the associations between minoritised populations and mental health, and the many historical and recent examples of racism within health research [ 59 , 60 , 61 , 62 , 63 , 57 , 58 , 59 , 60 , 56 ]. In addition, the current interview sample was highly educated, which may have influenced their knowledge of and attitudes towards data sharing. Furthermore, as noted in the positionality statement, the researchers are similar to most of the interview participants in terms of their ethnicity and educational experience. This could have limited the extent to which the research project was able to highlight perspectives outside of the contributors’ shared frame of reference.

It is possible that self-selection bias was present. It is feasible that individuals who volunteered to participate in an interview on the topic of mental health data hold more positive views towards mental health data sharing than those with mental illness who did not volunteer. As described above, participants were invited to take part if they had agreed to be contacted for this purpose following completion of our previous survey on health data sharing [ 23 ]. When recruiting for the present study we actively tried to invite individuals who had previously responded in the survey that “no”, they were unwilling to share their mental health data for research purposes. However, given that only 10.3% of the full survey sample selected this option, this was challenging, and as a result only two of the final interview sample had responded “no”. Despite this, the participants did vary on a more nuanced survey question in which they used a 5-point Likert scale to indicate how likely they would be to share mental health data, with four of the 12 participants responding “very unlikely” or “unlikely”.

Future directions

[ 63 ]As identified, fear of stigma is a major concern with regards to mental health data sharing. Future research could examine whether interventions designed to reduce mental health stigma are predictive of changes in attitudes to mental health data sharing. Additional findings from this project suggest that knowledge about data safeguards is important to individuals. As such, researchers should endeavour to make these processes transparent, such as by following published guidance on good practice in mental health data sharing [ 47 ].

In light of the aforementioned limited representativeness of the current sample, it is important that future research includes more perspectives from those who are less commonly included in work of this nature. In particular, researchers need to do more to actively reach out to people from Black communities [ 59 ], people with co-morbid mental and physical health conditions, and people with fewer educational qualifications. Measures to support these endeavours include drawing on organisation-level tools such as the Race Equality Framework [ 59 ], ensuring that funding bids include costings for proper payment of participants, and inviting people from under-represented groups to collaborate on research design and recruitment.

Broadly speaking, the participants in the present research wanted routinely-collected mental health data to be put to use for the good of those living with mental illness. In practice, however, UK researchers’ ability to access these data is highly restricted and varies by location [ 8 , 34 ]. Progress is being made via initiatives such as the SAIL databank in Wales [ 19 ], the Clinical Record Interactive Search (CRIS) in London [ 18 ], and DATAMIND, a UK-wide mental health data hub set up in 2021 [ 64 ]. With respect to the regulatory environment, the Goldacre Review, published in 2022, makes various recommendations for more streamlined sharing of health data in the future [ 53 ]. However, it remains unclear whether the proposed changes would be able to facilitate the time-sensitive cross-disciplinary data sharing necessary for highly effective mental health research [ 57 ]. Whilst safeguards are clearly important, it is essential that policy-makers do not let arbitrary restrictions limit the transformative potential of routinely-collected data for people living with mental illness.

This interview study provided insight into how people with lived experience of mental illness feel about sharing routinely-collected mental health data. The findings bore similarities to previous work on the general public’s views on health data sharing, especially in the belief that health data should be used for societal good and protected by safeguards such as de-identification and secure data storage. However, the present findings also elucidated considerations around data sharing that are especially pertinent to those living with mental illness. On the whole, participants were driven by their own experiences with mental illness to support measures (such as secure data sharing) that could prevent other people suffering to the extent that they had done. They also frequently situated concerns around data misuse within the wider context of discrimination, envisioning or recalling incidents where information on their mental health status could be or had been used to discriminate against them. These findings broadly support researchers’ calls for more streamlined access to mental health data under appropriate conditions [ 34 , 57 ]. Going forward, researchers and policy makers working in mental health data science should continue to strive for scientific and clinical progress whilst also acknowledging and seeking to reduce the stigma that threatens to hold this back.

Data availability

The dataset generated and analysed during the current study is not publicly available in order to protect participant privacy. An anonymised version of the dataset is available upon reasonable request from the corresponding author (Elizabeth Kirkham).

Kruse CS, Goswamy R, Raval Y, Marawi S. Challenges and Opportunities of Big Data in Health Care: a systematic review. JMIR Med Inform. 2016;4(4):e38.

Article   Google Scholar  

Fylan B, Marques I, Ismail H, Breen L, Gardner P, Armitage G, et al. Gaps, traps, bridges and props: a mixed-methods study of resilience in the medicines management system for patients with heart failure at hospital discharge. BMJ open. 2019;9(2):e023440.

Bates DW, Saria S, Ohno-Machado L, Shah A, Escobar G. Big Data in Health Care: using analytics to identify and manage high-risk and high-cost patients. Health Aff. 2014;33(7):1123–31.

Langan SM, Schmidt SA, Wing K, Ehrenstein V, Nicholls SG, Filion KB, et al. The reporting of studies conducted using observational routinely collected health data statement for pharmacoepidemiology (RECORD-PE). BMJ. 2018;363:k3532.

Pisani E, Aaby P, Breugelmans JG, Carr D, Groves T, Helinski M, et al. Beyond open data: realising the health benefits of sharing data. BMJ. 2016;355:i5295.

Grundy E, Boyle P, O’Reilly D, Young H. Developing integrated analyses of the England & Wales, Scottish and Northern Ireland Census Longitudinal Studies: health and mortality as a case study: full research Report, ESRC End of Award Report. Swindon, UK; 2009.

Hibbin RA, Samuel G, Derrick GE. From a fair game to a form of Covert Research: Research Ethics Committee Members’ differing notions of consent and potential risk to participants within Social Media Research. J Empir Res Hum Res Ethics. 2018;13(2):149–59.

Iveson M, Deary I. Navigating the landscape of non-health administrative data in Scotland: a researcher?s narrative [version 2; peer review: 2 approved]. Wellcome Open Research. 2019;4(97).

Simon GE, Johnson E, Lawrence JM, Rossom RC, Ahmedani B, Lynch FL, et al. Predicting suicide attempts and suicide deaths following outpatient visits using Electronic Health Records. Am J Psychiatry. 2018;175(10):951–60.

White J, Greene G, Farewell D, Dunstan F, Rodgers S, Lyons RA, et al. Improving Mental Health through the regeneration of deprived neighborhoods: a natural experiment. Am J Epidemiol. 2017;186(4):473–80.

Brophy S, Kennedy J, Fernandez-Gutierrez F, John A, Potter R, Linehan C, et al. Characteristics of children prescribed Antipsychotics: analysis of routinely Collected Data. J Child Adolesc Psychopharmacol. 2018;28(3):180–91.

McIntosh AM, Stewart R, John A, Smith DJ, Davis K, Sudlow C, et al. Data science for mental health: a UK perspective on a global challenge. Lancet Psychiatry. 2016;3(10):993–8.

Furimsky I, Cheung AH, Dewa CS, Zipursky RB. Strategies to enhance patient recruitment and retention in research involving patients with a first episode of mental illness. Contemp Clin Trials. 2008;29(6):862–6.

Woodall A, Morgan C, Sloan C, Howard L. Barriers to participation in mental health research: are there specific gender, ethnicity and age related barriers? BMC Psychiatry. 2010;10:10.

Kaminsky A, Roberts LW, Brody JL. Influences upon willingness to participate in schizophrenia research: an analysis of narrative data from 63 people with schizophrenia. Ethics & Behavior. 2003;13(3):279–302.

Kirkham EJ, Crompton CJ, Iveson MH, Beange I, McIntosh AM, Fletcher-Watson S. Co-development of a best practice checklist for Mental Health Data Science: a Delphi Study. Front Psychiatry. 2021;12(901).

Carter P, Laurie GT, Dixon-Woods M. The social licence for research: why care.data ran into trouble. J Med Ethics. 2015;41(5):404–9.

Stewart R, Soremekun M, Perera G, Broadbent M, Callard F, Denis M, et al. The South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLAM BRC) case register: development and descriptive data. BMC Psychiatry. 2009;9(1):51.

Jones K, Ford D, Lyons R. The SAIL Databank: 10 years of spearheading data privacy and research utility 2007–2017. Wales, UK; 2017.

Luchenski SA, Reed JE, Marston C, Papoutsi C, Majeed A, Bell D. Patient and public views on Electronic Health Records and their uses in the United Kingdom: cross-sectional survey. J Med Internet Res. 2013;15(8).

Buckley BS, Murphy AW, MacFarlane AE. Public attitudes to the use in research of personal health information from general practitioners’ records: a survey of the irish general public. J Med Ethics. 2011;37(1):50–5.

King T, Brankovic L, Gillard P. Perspectives of australian adults about protecting the privacy of their health information in statistical databases. Int J Med Informatics. 2012;81(4):279–89.

Kirkham EJ, Lawrie SM, Crompton CJ, Iveson MH, Jenkins ND, Goerdten J, et al. Experience of clinical services shapes attitudes to mental health data sharing: findings from a UK-wide survey. BMC Public Health. 2022;22(1):357.

Jones LA, Nelder JR, Fryer JM, Alsop PH, Geary MR, Prince M et al. Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK. Bmj Open. 2022;12(4).

Aitken M, Jorre JD, Pagliari C, Jepson R, Cunningham-Burley S. Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Med Ethics. 2016;17.

Grant A, Ure J, Nicolson DJ, Hanley J, Sheikh A, McKinstry B et al. Acceptability and perceived barriers and facilitators to creating a national research register to enable ‘direct to patient’ enrolment into research: the Scottish Health Research Register (SHARE). BMC Health Serv Res. 2013;13.

Robling MR, Hood K, Houston H, Pill R, Fay J, Evans HM. Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. J Med Ethics. 2004;30(1):104–9.

Shen N, Sequeira L, Silver MP, Carter-Langford A, Strauss J, Wiljer D. Patient privacy perspectives on Health Information Exchange in a Mental Health Context: qualitative study. Jmir Mental Health. 2019;6(11).

Shen N, Bernier T, Sequeira L, Strauss J, Silver MP, Carter-Langford A, et al. Understanding the patient privacy perspective on health information exchange: a systematic review. Int J Med Inform. 2019;125:1–12.

Soni H, Ivanova J, Grando A, Murcko A, Chern D, Dye C et al. A pilot comparison of medical records sensitivity perspectives of patients with behavioral health conditions and healthcare providers. Health Inf J. 2021;27(2).

Grando MA, Murcko A, Mahankali S, Saks M, Zent M, Chern D, et al. A study to elicit behavioral health patients’ and Providers’ opinions on Health Records Consent. J Law Med Ethics. 2017;45(2):238–59.

Caine K, Hanania R. Patients want granular privacy control over health information in electronic medical records. J Am Med Inform Assoc. 2013;20(1):7–15.

Soni H, Grando A, Murcko A, Diaz S, Mukundan M, Idouraine N et al. State of the art and a mixed-method personalized approach to assess patient perceptions on medical record sharing and sensitivity. J Biomed Inform. 2020;101.

Ford T, Mansfield KL, Markham S, McManus S, John A, O’Reilly D, et al. The challenges and opportunities of mental health data sharing in the UK. Lancet Digit Health. 2021;3(6):e333–e6.

Kirkham EJ, Fletcher-Watson S, Beange I, Chan SWY, Lawrie SM. Patient satisfaction with mental and physical health services: findings from a UK-wide online survey [version 1; peer review: 1 approved]. Wellcome Open Research. 2022;7(198).

Crompton CJ, Hallett S, Ropar D, Flynn E, Fletcher-Watson S. I never realised everybody felt as happy as I do when I am around autistic people’: a thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family. Autism. 2020;24(6):1438–48.

Morse JM. The significance of Saturation. Qual Health Res. 1995;5(2):147–9.

Sandelowski M. Sample size in qualitative research. Res Nurs Health. 1995;18(2):179–83.

Braun V, Clarke V. Successful Qualitative Research: A Practical Guide for Beginners2013.

Elliott R, Fischer CT, Rennie DL. Evolving guidelines for publication of qualitative research studies in psychology and related fields. Br J Clin Psychol. 1999;38(3):215–29.

Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13(1):117.

Trivedi MH. Right patient, right treatment, right time: biosignatures and precision medicine in depression. World Psychiatry. 2016;15(3):237–8.

Nash M. Diagnostic overshadowing: a potential barrier to physical health care for mental health service users. Mental Health Practice. 2013;17:22–6.

Aitken M, Porteous C, Creamer E, Cunningham-Burley S. Who benefits and how? Public expectations of public benefits from data-intensive health research. Big Data & Society. 2018;5(2):2053951718816724.

Howe N, Giles E, Newbury-Birch D, McColl E. Systematic review of participants’ attitudes towards data sharing: a thematic synthesis. J Health Serv Res Policy. 2018;23(2):123–33.

Clement S, Schauman O, Graham T, Maggioni F, Evans-Lacko S, Bezborodovs N, et al. What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychol Med. 2015;45(1):11–27.

Kirkham EJ, Iveson M, Beange I, Crompton CJ, McIntosh A, Fletcher-Watson S. A stakeholder-derived best practice checklist for mental health data science in the UK. Edinburgh, UK: University of Edinburgh; 2020.

Google Scholar  

Ohm P. Broken promises of privacy: responding to the surprising failure of anonymization. UCLA l Rev. 2009;57:1701.

Lavis P. Running hot: the impact of the pandemic on mental health services. London; 2022.

Stuart R, Shah P, Olive RR, Trevillion K, Henderson C. Experiences of every mind matters, Public Health England’s adult mental health literacy campaign: a qualitative interview study. BMC Public Health. 2023;23(1):398.

Downs J, Ayton A, Collins L, Baker S, Missen H, Ibrahim A. Untreatable or unable to treat? Creating more effective and accessible treatment for long-standing and severe eating disorders. The Lancet Psychiatry. 2023;10(2):146–54.

Cummins I. The impact of Austerity on Mental Health Service Provision: a UK Perspective. Int J Environ Res Public Health. 2018;15(6):1145.

Goldacre B, Morley J, Better. Broader, Safer: Using health data for research and analysis. A review commissioned by the Secretary of State for Health and Social Care. London, UK; 2022.

Department for Digital C. Media & Sport. Data Ethics Framework. UK Government; 2018.

Department for Science IaT. Science and Technology Framework - taking a systems approach to UK science & technology. London, UK; 2023.

National Institute for Health and Care Research. Our Key Priorities London, UK: NIHR; 2023 [Available from: https://www.nihr.ac.uk/about-us/our-key-priorities/ .

Astle DE, Moore A, Marryat L, Viding E, Mansfield KL, Fazel M, et al. We need timely access to mental health data: implications of the Goldacre review. Lancet Psychiatry. 2023;10(4):242–4.

Morris J, Schlepper L, Dayan M, Jefferies D, Maguire D, Merry L et al. Public satisfaction with the NHS and social care in 2022: Results from the British Social Attitudes Survey. London, UK; 2023.

Race Equality Public Action Group. The Race Equality Framework. London, UK; 2022.

Iwamasa GY, Sorocco KH, Koonce DA. Ethnicity and clinical psychology: a content analysis of the literature. Clin Psychol Rev. 2002;22(6):931–44.

Coid JW, Kirkbride JB, Barker D, Cowden F, Stamps R, Yang M, et al. Raised incidence rates of all psychoses among migrant groups: findings from the East London first episode psychosis study. Arch Gen Psychiatry. 2008;65(11):1250–8.

Williams DR. Stress and the Mental Health of populations of Color: advancing our understanding of race-related stressors. J Health Soc Behav. 2018;59(4):466–85.

Meyer OL, Castro-Schilo L, Aguilar-Gaxiola S. Determinants of mental health and self-rated health: a model of socioeconomic status, neighborhood safety, and physical activity. Am J Public Health. 2014;104(9):1734–41.

Datamind, The Hub for Mental Health Informatics Research Development. Health Data Research UK; 2023 [Available from: https://datamind.org.uk/ .

Download references

Acknowledgements

The authors would like to thank the participants who made this research possible. They would also like to thank Suzy Syrett for assisting EJK in preparing for the interviews, and the Edinburgh Pathfinder Stakeholder Advisory Group who advised on the overarching programme of work.

This project received funding from the Medical Research Council (grant number MC_PC_17209). EJK is supported by the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement n° 847776). The funding bodies had no role in the design of the study, in the collection, analysis, and interpretation of the data or in writing the manuscript.

Author information

Authors and affiliations.

University of Edinburgh Medical School, Edinburgh, UK

Emily Watson

Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK

Sue Fletcher-Watson & Elizabeth Joy Kirkham

Clinical Psychology, School of Health in Social Science, University of Edinburgh, Edinburgh, UK

Elizabeth Joy Kirkham

Medical School, Teviot Place, Edinburgh, EH8 9AG, UK

You can also search for this author in PubMed   Google Scholar

Contributions

EW analysed the data, interpreted the data, and drafted the manuscript. EJK made substantial contributions to the design of the work and the interpretation of the data. EJK also acquired the data and substantively revised the manuscript. SFW conceptualised the work and made substantial contributions to the design of the work. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Elizabeth Joy Kirkham .

Ethics declarations

Ethics approval and consent to participate.

Ethical approval for this study was provided by the Department of Clinical and Health Psychology Ethics Research Panel, University of Edinburgh, ref STAFF147. The research was performed in accordance with the ethical principles of the Declaration of Helsinki. All participants were provided with an information sheet and completed an informed consent form prior to taking part in the research.

Consent for publication

Not applicable as no personally identifiable information is included in the manuscript.

Competing interests

The authors declare that they have no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary Material 1

Rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Watson, E., Fletcher-Watson, S. & Kirkham, E.J. Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness. BMC Med Ethics 24 , 99 (2023). https://doi.org/10.1186/s12910-023-00961-6

Download citation

Received : 20 December 2022

Accepted : 24 September 2023

Published : 14 November 2023

DOI : https://doi.org/10.1186/s12910-023-00961-6

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Mental health
• Health data
• Patient perspectives
• Mental illness
• Qualitative
• Electronic health records

BMC Medical Ethics

ISSN: 1472-6939

• General enquiries: [email protected]

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• HHS Author Manuscripts

Introduction: Case Studies in the Ethics of Mental Health Research

Joseph millum.

Clinical Center Department of Bioethics/Fogarty International Center, National Institutes of Health, Bethesda, MD

This collection presents six case studies on the ethics of mental health research, written by scientific researchers and ethicists from around the world. We publish them here as a resource for teachers of research ethics and as a contribution to several ongoing ethical debates. Each consists of a description of a research study that was proposed or carried out and an in-depth analysis of the ethics of the study.

Building Global Capacity in Mental Health Research

According to the World Health Organization (WHO), there are more than 450 million people with mental, neurological, or behavioral problems worldwide ( WHO, 2005a ). Mental health problems are estimated to account for 13% of the global burden of disease, principally from unipolar and bipolar depression, alcohol and substance-use disorders, schizophrenia, and dementia. Nevertheless, in many countries, mental health is accorded a low priority; for example, a 2005 WHO analysis found that nearly a third of low-income countries who reported a mental health budget spent less than 1% of their total health budget on mental health ( WHO, 2005b ).

Despite the high burden of disease and some partially effective treatments that can be implemented in countries with weaker healthcare delivery systems ( Hyman et al., 2006 ), there exist substantial gaps in our knowledge of how to treat most mental health conditions. A 2007 Lancet Series entitled Global Mental Health claimed that the “rudimentary level of mental health-service research programmes in many nations also contributes to poor delivery of mental health care” ( Jacob et al., 2007 ). Its recommendations for mental health research priorities included research into the effects of interactions between mental health and other health conditions ( Prince et al., 2007 ), interventions for childhood developmental disabilities ( Patel et al., 2007 ), cost-effectiveness analysis, the scaling up of effective interventions, and the development of interventions that can be delivered by nonspecialist health workers ( Lancet Global Mental Health Group, 2007 ). All of these priorities require research in environments where the prevailing health problems and healthcare services match those of the populations the research will benefit, which suggests that research must take place all around the world. Similarly, many of the priorities identified by the Grand Challenges in Mental Health Initiative require focus on local environments, cultural factors, and the health systems of low- and middle-income countries. All the challenges “emphasize the need for global cooperation in the conduct of research” ( Collins et al., 2011 ).

Notwithstanding the need for research that is sensitive to different social and economic contexts, the trend of outsourcing to medical research to developing countries shows no sign of abating ( Thiers et al., 2008 ). Consequently, a substantial amount of mental health research will, in any case, take place in low- and middle-income countries, as well as rich countries, during the next few years.

The need for local research and the continuing increase in the international outsourcing of research imply that there is a pressing need to build the capacity to conduct good quality mental health research around the world. However, the expansion of worldwide capacity to conduct mental health research requires more than simply addressing low levels of funding for researchers and the imbalance between the resources available in rich and poor countries. People with mental health disorders are often thought to be particularly vulnerable subjects. This may be a product of problems related to their condition, such as where the condition reduces the capacity to make autonomous decisions. It may also result from social conditions because people with mental disorders are disproportionately likely to be poor, are frequently stigmatized as a result of their condition, and may be victims of human rights abuses ( Weiss et al., 2001 ; WHO, 2005a ). As a result, it is vitally important that the institutional resources and expertise are in place for ensuring that this research is carried out ethically.

Discussion at a special session at the 7th Global Forum on Bioethics in Research revealed the perception that many mental health researchers are not very interested in ethics and showed up a lack of ethics resources directly related to their work. This collection of case studies in the ethics of mental health research responds to that gap.

This collection comprises six case studies written by contributors from around the world ( Table 1 ). Each describes a mental health research study that raised difficult ethical issues, provides background and analysis of those issues, and draws conclusions about the ethics of the study, including whether it was ethical as it stood and how it ought to be amended otherwise. Three of the case studies are written by scientists who took part in the research they analyzed. For these cases, we have asked scholars independent of the research to write short commentaries on them. It is valuable to hear how the researchers themselves grapple with the ethical issues they encounter, as well as to hear the views of people with more distance from the research enterprise. Some of the ethical issues raised here have not been discussed before in the bioethics literature; others are more common concerns that have not received much attention in the context of international research. The case studies are intended to both expand academic discussion of some of the key questions related to research into mental health and for use in teaching ethics.

Case studies are an established teaching tool. Ethical analyses of such cases demonstrate the relevance of ethics to the actual practice of medical research and provide paradigmatic illustrations of the application of ethical principles to particular research situations. Concrete cases help generate and guide discussion and assist students who have trouble dealing with ethical concepts in abstraction. Through structured discussion, ethical development and decision-making skills can be enhanced. Moreover, outside of the teaching context, case study analyses provide a means to generate and focus debate on the relevant ethical issues, which can both highlight their importance and help academic discussion to advance.

People working in mental health research can benefit most from case studies that are specific to mental health. Even though, as outlined below, many of the same ethical problems arise in mental health research as elsewhere, the details of how they arise are important. For example, the nature of depression and the variation in effectiveness of antidepressive medication make a difference to how we should assess the ethics of placebo-controlled trials for new antidepressants. Moreover, seeing how familiar ethical principles are applied to one's own research specialty makes it easier to think about the ethics of one's own research. The cases in this collection highlight the commonalities and the variation in the ethical issues facing researchers in mental health around the world.

The current literature contains some other collections of ethics case studies that may be useful to mental health researchers. I note four important collections here, to which interested scholars may want to refer. Lavery et al.'s (2007) Ethical Issues in International Bio-medical Research provides in-depth analyses of ethically problematic research, mostly in low- and middle-income countries, although none of these cases involve mental health. Cash et al.'s (2009) Casebook on Ethical Issues in International Health Research also focuses on research in low- and middle-income countries, and several of the 64 short case descriptions focus on populations with mental health problems. Two further collections focus on mental health research, in particular. Dubois (2007) and colleagues developed short and longer US-based case studies for teaching as part of their “Ethics in Mental Health Research” training course. Finally, Hoagwood et al.'s (1996) book Ethical Issues in Mental Health Research with Children and Adolescents contains a casebook of 61 short case descriptions, including a few from outside the United States and Western Europe. For teachers and academics in search of more case studies, these existing collections should be very useful. Here, we expand on the available resources with six case studies from around the world with extended ethical analyses.

The remainder of this introduction provides an overview of some of the most important ethical issues that arise in mental health research and describes some of the more significant ethics guidance documents that apply.

Ethical Issues in Mental Health Research

The same principles can be applied in assessing the ethics of mental health research as to other research using human participants ( Emanuel et al., 2000 ). Concerns about the social value of research, risks, informed consent, and the fair treatment of participants all still apply. This means that we can learn from the work done in other areas of human subjects research. However, specific research contexts make a difference to how the more general ethical principles should be applied to them. Different medical conditions may require distinctive research designs, different patient populations may need special protections, and different locations may require researchers to respond to study populations who are very poor and lack access to health care or to significant variations in regulatory systems. The ethical analysis of international mental health research therefore needs to be tailored to its particularities.

Each case study in this collection focuses on the particular ethical issues that are relevant to the research it analyzes. Nevertheless, some issues arise in multiple cases. For example, questions about informed consent arise in the context of research with stroke patients, with students, and with other vulnerable groups. To help the reader compare the treatment of an ethical issue across the different case studies, the ethical analyses use the same nine headings to delineate the issues they consider. These are social value, study design, study population, informed consent, risks and benefits, confidentiality, post-trial obligations, legal versus ethical obligations, and oversight.

Here, I focus on five of these ethical issues as they arise in the context of international mental health research: (1) study design, (2) study population, (3) risks and benefits, (4) informed consent, and (5) post-trial obligations. I close by mentioning some of the most important guidelines that pertain to mental health research.

Study Design

The scientific design of a research study determines what sort of data it can generate. For example, the decision about what to give participants in each arm of a controlled trial determines what interventions the trial compares and what questions about relative safety and efficacy it can answer. What data a study generates makes a difference to the ethics of the study because research that puts human beings at risk is ethically justified in terms of the social value of the knowledge it produces. It is widely believed that human subject research without any social value is unethical and that the greater the research risks to participants, the greater the social value of the research must be to compensate ( Council for International Organizations of Medical Sciences [CIOMS], 2002 ; World Medical Association, 2008 ). However, changing the scientific design of a study frequently changes what happens to research participants, too. For example, giving a control group in a treatment trial an existing effective treatment rather than placebo makes it more likely that their condition will improve but may expose them to adverse effects they would not otherwise experience. Therefore, questions of scientific design can be ethically very complex because different possible designs are compared both in terms of the useful knowledge they may generate and their potential impact on participants.

One of the more controversial questions of scientific design concerns the standard of care that is offered to participants in controlled trials. Some commentators argue that research that tests therapeutic interventions is only permissible if there is equipoise concerning the relative merits of the treatments being compared, that is, there are not good reasons to think that participants in any arm of the trial are receiving inferior treatment ( Joffe and Truog, 2008 ). If there is not equipoise, the argument goes, then physician-researchers will be breaching their duty to give their patients the best possible care ( Freedman, 1987 ).

The Bucharest Early Intervention Project (BEIP) described in the case study by Charles Zeanah was a randomized controlled trial comparing foster care with institutional care in Bucharest, Romania. When designing the BEIP, the researchers wrestled with the issue of whether there was genuine equipoise regarding the relative merits of institutional and foster care. One interpretation of equipoise is that it exists when the professional community has not reached consensus about the better treatment ( Freedman, 1987 ). Childcare professionals in the United States were confident that foster care was superior, but there was no such confidence in Romania, where institutional care was the norm. Which, then, was the relevant professional community?

The equipoise requirement is justified by reference to the role morality of physicians: for a physician to give her patient treatment that she knows to be inferior would violate principles of therapeutic beneficence and nonmaleficence. As a result, the equipoise requirement has been criticized for conflating the ethics of the physician-patient relationship with the ethics of the researcher-participant relationship ( Miller and Brody, 2003 ). According to Miller and Brody (2003) , provided that other ethical requirements are met, including an honest null hypothesis, it is not unethical to assign participants to receive treatment regimens known to be inferior to the existing standard of care.

A subset of trial designs that violate equipoise are placebo-controlled trials of experimental treatments for conditions for which proven effective treatments already exist. Here, there is not equipoise because some participants will be assigned to placebo treatment, and ex hypothesi there already exists treatment that is superior to placebo. Even if we accept Miller and Brody's (2003) argument and reject the equipoise requirement, there remain concerns about these placebo-controlled trials. Providing participants with less effective treatment than they could get outside of the trial constitutes a research risk because trial participation makes them worse off. Moreover, on the face of it, a placebo-controlled trial of a novel treatment of a condition will not answer the most important scientific question about the treatment that clinicians are interested in: is this new treatment better than the old one? Consequently, in situations where there already exists a standard treatment of a condition, it has generally been considered unethical to use a placebo control when testing a new treatment, rather than using the standard treatment as an active-control ( World Medical Association, 2008 ).

Some psychiatric research provides scientific reasons to question a blanket prohibition on placebo-controlled trials when an effective intervention exists. For example, it is not unusual for antidepressive drugs to fail to show superiority to placebo in any given trial. This means that active-control trials may seem to show that an experimental drug is equivalent in effectiveness to the current standard treatment, when the explanation for their equivalence may, in fact, be that neither was better than placebo. Increasing the power of an active-control trial sufficiently to rule out this possibility may require an impractically large number of subjects and will, in any case, put a greater number of subjects at risk ( Carpenter et al., 2003 ; Miller, 2000 ). A 2005 trial of risperidone for acute mania conducted in India ( Khanna et al., 2005 ) was criticized for unnecessarily exposing subjects to risk ( Basil et al., 2006 ; Murtagh and Murphy, 2006 ; Srinivasan et al., 2006 ). The investigators' response to criticisms adopted exactly the line of argument just described:

A placebo group was included because patients with mania generally show a high and variable placebo response, making it difficult to identify their responses to an active medication. Placebo-controlled trials are valuable in that they expose the fewest patients to potentially ineffective treatments. In addition, inclusion of a placebo arm allows a valid evaluation of adverse events attributable to treatment v. those independent of treatment. ( Khanna et al., 2006 )

Concerns about the standard of care given to research participants are exacerbated in trials in developing countries, like India, where research participants may not have access to treatment independent of the study. In such cases, potential participants may have no real choice but to join a placebo-controlled trial, for example, because that is the only way they have a chance to receive treatment. In the Indian risperidone trial, the issue of exploitation is particularly stark because it seemed to some that participants were getting less than the international best standard of care, in order that a pharmaceutical company could gather data that was unlikely to benefit many Indian patients.

This is just one way in which trial design may present ethically troubling risks to participants. Other potentially difficult designs include washout studies, in which participants discontinue use of their medication, and challenge studies, in which psychiatric symptoms are experimentally induced ( Miller and Rosenstein, 1997 ). In both cases, the welfare of participants may seem to be endangered ( Zipursky, 1999 ). A variant on the standard placebo-controlled trial design is the withdrawal design, in which everyone starts the trial on medication, the people who respond to the medication are then selected for randomization, and then half of those people are randomized to placebo. This design was used by a Japanese research team to assess the effectiveness of sertraline for depression, as described by Shimon Tashiro and colleagues in this collection. The researchers regarded this design as more likely to benefit the participants because for legal reasons, sertraline was being tested in Japan despite its proven effectiveness in non-Japanese populations. Tashiro and colleagues analyze how the risks and benefits of a withdrawal design compare with those of standard placebo-controlled trials and consider whether the special regulatory context of Japan makes a difference.

Study Population

The choice of study population implicates considerations of justice. The Belmont Report, which lays out the ethical foundations for the United States system for ethical review of human subject research, says:

Individual justice in the selection of subjects would require that researchers … should not offer potentially beneficial research only to some patients who are in their favor or select only “undesirable” persons for risky research. Social justice requires that distinction be drawn between classes of subjects that ought, and ought not, to participate in any particular kind of research, based on the ability of members of that class to bear burdens and on the appropriateness of placing further burdens on already burdened persons. ( National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978 )

Two distinct considerations are highlighted here. The first (“individual justice”) requires that the researchers treat people equally. Morally irrelevant differences between people should not be the basis for deciding whom to enroll in research. For example, it would normally be unjust to exclude women from a phase 3 trial of a novel treatment of early-stage Alzheimer disease, given that they are an affected group. Some differences are not morally irrelevant, however. In particular, there may be scientific reasons for choosing one possible research population over another, and there may be risk-related reasons for excluding certain groups. For example, a functional magnetic resonance imaging study in healthy volunteers to examine the acute effects of an antianxiety medication might reasonably exclude left-handed people because their brain structure is different from that of right-handed people, and a study of mood that required participants to forego medication could justifiably exclude people with severe depression or suicidal ideation.

The second consideration requires that we consider how the research is likely to impact “social justice.” Social justice refers to the way in which social institutions distribute goods, like property, education, and health care. This may apply to justice within a state ( Rawls, 1971 ) or to global justice ( Beitz, 1973 ). In general, research will negatively affect social justice when it increases inequality, for example, by making people who are already badly off even worse off. The quotation from the Belmont Report above suggests one way in which research might violate a requirement of social justice: people who are already badly off might be asked to participate in research and so be made worse off. For example, a study examining changes in the brain caused by alcohol abuse that primarily enrolled homeless alcoholics from a shelter near the study clinic might only put at further risk this group who are already very badly off. An alternative way in which research can promote justice or injustice is through its results. Research that leads to the development of expensive new attention deficit hyperactivity disorder medication is likely to do little, if anything, to make the world more just. Research on how to improve the cognitive development of orphaned children in poor environments (like the BEIP) is much more likely to improve social justice.

This last point suggests a further concern about fairness—exploitation—that frequently arises in the context of international collaborative research in developing countries. Exploitation occurs, roughly, when one party takes “unfair advantage” of the vulnerability of another. This means that the first party benefits from the interaction and does so to an unfair extent ( Wertheimer, 1996 ). These conditions may be met in international collaborative research when the burdens of research fall disproportionately on people and institutions in developing countries, but the benefits of research, such as access to new treatments, accrue to people in richer countries. A number of case studies in this collection raise this concern in one way or another. For example, Virginia Rodriguez analyzes a proposed study of the genetic basis of antisocial personality disorder run by US researchers but carried out at sites in several Latin American countries. One of the central objections raised by one of the local national research ethics committees with regard to this study was that there appeared to be few, if any, benefits for patients and researchers in the host country.

Risks and Benefits

Almost all research poses some risk of harm to participants. Participants in mental health research may be particularly susceptible to risk in several ways. First, and most obviously, they may be physically or psychologically harmed as a result of trial participation. For example, an intervention study of an experimental antipsychotic may result in some serious adverse effects for participants who take the drug. Less obvious but still very important are the potential effects of stopping medication. As mentioned above, some trials of psychoactive medications require that patients stop taking the medications that they were on before the trial ( e.g ., the Japanese withdrawal trial). Stopping their medication can lead to relapse, to dangerous behavior (like attempted suicide), and could mean that their previous treatment regimen is less successful when they attempt to return to it. Participants who were successfully treated during a trial may have similar effects if they do not have access to treatment outside of the trial. This is much more likely to happen in research conducted with poor populations, such as the Indian mania patients.

The harms resulting directly from research-related interventions are not the only risk to participants in mental health research. Participation can also increase the risks of psychosocial harms, such as being identified by one's family or community as having a particular condition. Such breaches of confidentiality need not involve gross negligence on the part of researchers. The mere fact that someone regularly attends a clinic or sees a psychiatrist could be sufficient to suggest that they have a mental illness. In other research, the design makes confidentiality hard to maintain. For example, the genetic research described by Rodriguez involved soliciting the enrollment of the family members of people with antisocial personality disorder.

The harm from a breach of confidentiality is exacerbated when the condition studied or the study population is stigmatized. Both of these were true in the case Sana Loue describes in this collection. She studied the co-occurrence of severe mental illnesses and human immunodeficiency virus risk in African-American men who have sex with men. Not only was there shame attached to the conditions under study, such that they were euphemistically described in the advertisements for the research, but also many of the participants were men who had heterosexual public identities.

Informed Consent

Many people with mental disorders retain the capacity (ability) and competence (legal status) to give informed consent. Conversely, potential participants without mental problems may lack or lose capacity (and competence). Nevertheless, problems with the ability to consent remain particularly pressing with regard to mental health research. This is partly a consequence of psychological conditions that reduce or remove the ability to give informed consent. To study these conditions, it may be necessary to use participants who have them, which means that alternative participants who can consent are, in principle, not available. This occurred in the study of South African stroke patients described by Anne Pope in this collection. The researcher she describes wanted to compare the effectiveness of exercises designed to help patients whose ability to communicate was compromised by their stroke. Given their communication difficulties and the underlying condition, there would inevitably be questions about their capacity. Whether it is permissible to enroll people who cannot give informed consent into a study depends on several factors, including the availability of alternative study populations, the levels of risk involved, and the possible benefits to participants in comparison with alternative health care they could receive.

In research that expects to enroll people with questionable capacity to consent, it is wise to institute procedures for assessing the capacity of prospective participants. There are two general strategies for making these assessments. The first is to conduct tests that measure the general cognitive abilities of the person being assessed, as an IQ test does. If she has the ability to perform these sorts of mental operations sufficiently well, it is assumed that she also has the ability to make autonomous decisions about research participation. A Mini-Mental State Examination might be used to make this sort of assessment ( Kim and Caine, 2002 ). The second capacity assessment strategy focuses on a prospective participant's understanding and reasoning with regard to the specific research project they are deciding about. If she understands that project and what it implies for her and is capable of articulating her reasoning about it, then it is clear that she is capable of consenting to participation, independent of her more general capacities. This sort of assessment requires questions that are tailored to each specific research project and cannot be properly carried out unless the assessor is familiar with that research.

Where someone lacks the capacity to give consent, sometimes a proxy decision maker can agree to trial participation on her behalf. In general, proxy consent is not equivalent to individual consent: unless the proxy was expressly designated to make research decisions by the patient while capacitated, the proxy lacks the power to exercise the patient's rights. As a result, the enrollment of people who lack capacity is only acceptable when the research poses a low net risk to participants or holds out the prospect of benefiting them. When someone has not designated a proxy decision maker for research, it is common to allow the person who has the power to make decisions about her medical care also to make decisions about research participation. However, because medical care is directed at the benefit of the patient, but research generally is not aimed at the benefit of participants, the basis for this assumption is unclear. Its legal basis may be weak, too. For example, in her discussion of research on South African stroke patients, Pope notes the confusion surrounding the legality of surrogate decision makers, given that the South African constitution forbids proxy decision making for adults (unless they have court-appointed curators), but local and international guidance documents seem to assume it.

Although it is natural to think of the capacity to give consent as an all-or-nothing phenomenon, it may be better conceptualized as domain-specific. Someone may be able to make decisions about some areas of her life, but not others. This fits with assumptions that many people make in everyday life. For example, a 10-year-old child may be deemed capable of deciding what clothes she will wear but may not be capable of deciding whether to visit the dentist. The capacity to consent may admit of degrees in another way, too. Someone may have diminished capacity to consent but still be able to make decisions about their lives if given the appropriate assistance. For example, a patient with mild dementia might not be capable of deciding on his own whether he should move in with a caregiver, but his memory lapses during decision making could be compensated for by having his son present to remind him of details relevant to the decision. The concept of supported decision making has been much discussed in the literature on disability; however, its application to consent to research has received little attention ( Herr, 2003 ; United Nations, 2007 ).

The ability to give valid informed consent is the aspect of autonomy that is most frequently discussed in the context of mental health research, but it is not the only important aspect. Several of the case studies in this collection also raise issues of voluntariness and coercion. For example, Douglas Wassenaar and Nicole Mamotte describe a study in which professors enrolled their students, which raises the question of the vulnerability of student subjects to pressure. Here, there is both the possibility of explicit coercion and the possibility that students will feel pressure even from well-meaning researchers. For various reasons, including dependence on caregivers or healthcare professionals and the stigma of their conditions, people with mental illnesses can be particularly vulnerable to coercion.

Post-Trial Obligations

The obligations of health researchers extend past the end of their study. Participants'data remain in the hands of researchers after their active involvement in a study is over, and patients with chronic conditions who enroll in clinical trials may leave them still in need of treatment.

Ongoing confidentiality is particularly important when studying stigmatized populations (such as men who have sex with men as discussed by Sana Loue) or people with stigmatizing conditions (such as bipolar disorder). In research on mental illnesses, as with many medical conditions, it is now commonplace for researchers to collect biological specimens and phenotypic data from participants to use in future research (such as genome-wide association studies). Additional challenges with regard to confidentiality are raised by the collection of data and biological specimens for future research because confidentiality must then be guaranteed in a long period of time and frequently with different research groups making use of the samples.

Biobanking also generates some distinctive ethical problems of its own. One concerns how consent to the future use of biological specimens should be obtained. Can participants simply give away their samples for use in whatever future research may be proposed, or do they need to have some idea of what this research might involve in order to give valid consent? A second problem, which arises particularly in transnational research, concerns who should control the ongoing use of the biobank. Many researchers think that biological samples should not leave the country in which they were collected, and developing country researchers worry that they will not be allowed to do research on the biobanks that end up in developed countries. This was another key concern with the proposed study in Latin America.

In international collaborative research, further questions arise as a result of the disparities between developing country participants and researchers and developed country sponsors and researchers. For example, when clinical trials test novel therapies, should successful therapies be made available after the trial? If they should, who is responsible for ensuring their provision, to whom should they be provided, and in what does providing them consist? In the case of chronic mental illnesses like depression or bipolar disorder, patient-participants may need maintenance treatment for the rest of their lives and may be at risk if treatment is stopped. This suggests that the question of what happens to them after the trial must at least be considered by those who sponsor and conduct the trial and the regulatory bodies that oversee it. Exactly on whom obligations fall remains a matter of debate ( Millum, 2011 ).

Ethics Guidelines

A number of important policy documents are relevant to the ethics of research into mental disorders. The WMA's Declaration of Helsinki and the CIOMS' Ethical Guidelines for Biomedical Research both consider research on individuals whose capacity and/or competence to consent is impaired. They agree on three conditions: a) research on these people is justified only if it cannot be carried out on individuals who can give adequate informed consent, b) consent to such research should be obtained from a proxy representative, and c) the goal of such research should be the promotion of the health of the population that the research participants represent ( Council for International Organizations of Medical Sciences, 2002 ; World Medical Association, 2008 ). In addition, with regard to individuals who are incapable of giving consent, Guideline 9 of CIOMS states that interventions that do not “hold out the prospect of direct benefit for the individual subject” should generally involve no more risk than their “routine medical or psychological examination.”

In 1998, the US National Bioethics Advisory Commission (NBAC) published a report entitled Research Involving Persons with Mental Disorders That May Affect Decision-making Capacity ( National Bioethics Advisory Commission, 1998 ). As the title suggests, this report concentrates on issues related to the capacity or competence of research participants to give informed consent. Its recommendations are largely consistent with those made in the Declaration of Helsinki and CIOMS, although it is able to devote much more space to detailed policy questions (at least in the United States context). Two domains of more specific guidance are of particular interest. First, the NBAC report considers the conditions under which individuals who lack the capacity to consent may be enrolled in research posing different levels of risk and supplying different levels of expected benefits to participants. Second, it provides some analysis of who should be recognized as an appropriate proxy decision maker (or “legally authorized representative”) for participation in clinical trials.

Finally, the World Psychiatric Association's Madrid Declaration gives guidelines on the ethics of psychiatric practice. This declaration may have implications for what is permissible in psychiatric research, insofar as the duties of psychiatrists as personal physicians are also duties of psychiatrists as medical researchers. It also briefly considers the ethics of psychiatric research, although it notes only the special vulnerability of psychiatric patients as a concern distinctive of mental health research ( World Psychiatric Association, 2002 ).

The opinions expressed are the author's own. They do not reflect any position or policy of the National Institutes of Health, U.S. Public Health Service, or Department of Health and Human Services.

Disclosure : The author declares no conflict of interest.

• Basil B, Adetunji B, Mathews M, Budur K. Trial of risperidone in India—concerns. Br J Psychiatry. 2006; 188 :489–490. [ PubMed ] [ Google Scholar ]
• Beitz C. Political theory and international relations. Princeton, NJ: Princeton University Press; 1973. [ Google Scholar ]
• Carpenter WT, Appelbaum PS, Levine RJ. The Declaration of Helsinki and clinical trials: A focus on placebo-controlled trials in schizophrenia. Am J Psychiatry. 2003; 160 :356–362. [ PubMed ] [ Google Scholar ]
• Cash R, Wikler D, Saxena A, Capron A, editors. Casebook on ethical issues in international health research. Geneva, Switzerland: World Health Organization; 2009. Available at: http://whqlibdoc.who.int/publications/2009/9789241547727_eng.pdf . [ Google Scholar ]
• Collins PY, Patel V, Joestl SS, March D, Insel TR, Daar AS on behalf of the Scientific Advisory Board and the Executive Committee of the Grand Challenges on Global Mental Health. Grand challenges in global mental health. Nature. 2011; 475 :27–30. [ PMC free article ] [ PubMed ] [ Google Scholar ]
• Council for International Organizations of Medical Sciences. The international ethical guidelines for biomedical research involving human subjects. [Accessed on January 31, 2012]; 2002 Available at: http://www.cioms.ch/publications/layout_guide2002.pdf . [ PubMed ]
• DuBois JM. Ethical research in mental health. New York, NY: Oxford University Press; 2007. [ Google Scholar ]
• Emanuel EJ, Wendler D, Grady C. What makes clinical research ethical? JAMA. 2000; 283 :2701–2711. [ PubMed ] [ Google Scholar ]
• Freedman B. Equipoise and the ethics of clinical research. N Engl J Med. 1987; 317 :141–145. [ PubMed ] [ Google Scholar ]
• Herr SS. Self-determination, autonomy, and alternatives for guardianship. In: Herr SS, Gostin LO, Koh HH, editors. The human rights of persons with intellectual disabilities: Different but equal. Oxford, UK: Oxford University Press; 2003. pp. 429–450. [ Google Scholar ]
• Hoagwood K, Jensen PS, Fisher CB. Ethical issues in mental health research with children and adolescents. Mahwah, NJ: Lawrence Erlbaum Associates; 1996. [ Google Scholar ]
• Hyman S, Chisholm D, Kessler R, Patel V, Whiteford H. Chapter 31: Mental disorders. In: Jamison DT, Breman JG, Measham AR, Alleyne G, Claeson M, Evans DB, Jha P, Mills A, Musgrove P, editors. Disease control priorities in developing countries. 2nd. Washington, DC; New York, NY: Oxford University Press and the World Bank; 2006. [ Google Scholar ]
• Jacob KS, Sharan P, Mirza I, Garrido-Cumbrera M, Seedat S, Mari JJ, Sreenivas V, Saxena S. Global Mental Health 4: Mental health systems in countries: where are we now? Lancet. 2007; 370 :1061–1077. [ PubMed ] [ Google Scholar ]
• Joffe S, Truog RD. Equipoise and randomization. In: Emanuel EJ, Grady C, Crouch RA, Lie RK, Miller FG, Wendler D, editors. The oxford textbook of clinical research ethics. Oxford, UK: Oxford University Press; 2008. pp. 245–260. [ Google Scholar ]
• Khanna S, Vieta E, Lyons B, Grossman F, Eerdekens M, Kramer M. Risperidone in the treatment of acute mania: Double-blind, placebo-controlled study. Br J Psychiatry. 2005; 187 :229–234. [ PubMed ] [ Google Scholar ]
• Khanna S, Vieta E, Lyons B, Grossman F, Kramer M, Eerdekens M. Trial of risperidone in India—concerns. Authors' reply. Br J Psychiatry. 2006; 188 :491. [ Google Scholar ]
• Kim SYH, Caine ED. Utility and limits of the Mini Mental State Examination in evaluating consent capacity in Alzheimer's disease. Psychiatr Serv. 2002; 53 :1322–1324. [ PubMed ] [ Google Scholar ]
• Lancet Global Mental Health Group. Global Mental Health 6: Scale up services for mental disorders: a call for action. Lancet. 2007; 370 :1241–1252. [ PubMed ] [ Google Scholar ]
• Lavery J, Grady C, Wahl ER, Emanuel EJ, editors. Ethical issues in international biomedical research: A casebook. New York, NY: Oxford University Press; 2007. [ Google Scholar ]
• Miller FG, Rosenstein DL. Psychiatric symptom-provoking studies: An ethical appraisal. Biol Psychiatry. 1997; 42 :403–409. [ PubMed ] [ Google Scholar ]
• Miller FG. Placebo-controlled trials in psychiatric research: An ethical perspective. Biol Psychiatry. 2000; 47 :707–716. [ PubMed ] [ Google Scholar ]
• Miller FG, Brody H. A critique of clinical equipoise: Therapeutic misconception in the ethics of clinical trials. Hastings Cent Rep. 2003; 33 :19–28. [ PubMed ] [ Google Scholar ]
• Millum J. Post-trial access to antiretrovirals: Who owes what to whom? Bioethics. 2011; 25 :145–154. [ PMC free article ] [ PubMed ] [ Google Scholar ]
• Murtagh A, Murphy KC. Trial of risperidone in India—concerns. Br J Psychiatry. 2006; 188 :489. [ PubMed ] [ Google Scholar ]
• National Bioethics Advisory Commission. Research involving persons with mental disorders that may affect decision-making capacity. [Accessed January 31, 2012]; 1998 Available at: http://bioethics.georgetown.edu/nbac/capacity/toc.htm .
• National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical principles and guidelines for the protection of human subjects of research. Washington, DC: DHEW Publication; 1978. pp. 78–0012. No. (OS) [ PubMed ] [ Google Scholar ]
• Patel V, Araya R, Chatterjee S, Chisholm D, Cohen A, De Silva M, Hosman C, McGuire H, Rojas G, van Ommeren M. Global Mental Health 3: Treatment and prevention of mental disorders in low-income and middle-income countries. Lancet. 2007; 370 :991–1005. [ PubMed ] [ Google Scholar ]
• Prince M, Patel V, Saxena S, Maj M, Maselko J, Phillips MR, Rahman A. Global Mental Health 1: No health without mental health. Lancet. 2007; 370 :859–877. [ PubMed ] [ Google Scholar ]
• Rawls J. A theory of justice. Cambridge, MA: Harvard University Press; 1971. [ Google Scholar ]
• Thiers FA, Sinskey AJ, Berndt ER. Trends in the globalization of clinical trials. Nature Rev Drug Discov. 2008; 7 :13–14. [ Google Scholar ]
• Srinivasan S, Pai SA, Bhan A, Jesani A, Thomas G. Trial of risperidone in India—concerns. Br J Psychiatry. 2006; 188 :489. [ PubMed ] [ Google Scholar ]
• United Nations. Legal capacity and supported decision-making in from exclusion to equality: Realizing the rights of persons with disabilities. Geneva, Switzerland: United Nations; 2007. Available at: http://www.un.org/disabilities/default.asp?id=242 . [ Google Scholar ]
• Weiss MG, Jadhav S, Raguram R, Vounatsou P, Littlewood R. Psychiatric stigma across cultures: Local validation in Bangalore and London. Anthropol Med. 2001; 8 :71–87. [ Google Scholar ]
• Wertheimer A. Exploitation. Princeton, UK: Princeton University Press; 1996. [ Google Scholar ]
• World Health Organization. Glaring inequalities for people with mental disorders addressed in new WHO effort. [Accessed January 31, 2012]; 2005a Available at: http://www.who.int/mediacentre/news/notes/2005/np14/en/index.html .
• World Health Organization. Mental Health Atlas: 2005. [Accessed January 31, 2012]; 2005b Available at: http://www.who.int/mental_health/evidence/mhatlas05/en/index.html .
• World Medical Association. The Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. [Accessed January 31, 2012]; 2008 Available at: http://www.wma.net/en/30publications/10policies/b3/index.html .
• World Psychiatric Association. Madrid Declaration on Ethical Standards for Psychiatric Practice. [Accessed January 31, 2012]; 2002 Available at: http://www.wpanet.org/detail.php?section_id=5&content_id=48 .
• Zipursky RB. Ethical issues in schizophrenia research. Curr Psychiatry Rep. 1999; 1 :13–19. [ PubMed ] [ Google Scholar ]