qualitative research questions mental health

55 research questions about mental health

Last updated

11 March 2024

Reviewed by

Brittany Ferri, PhD, OTR/L

Research in the mental health space helps fill knowledge gaps and create a fuller picture for patients, healthcare professionals, and policymakers. Over time, these efforts result in better quality care and more accessible treatment options for those who need them.

Use this list of mental health research questions to kickstart your next project or assignment and give yourself the best chance of producing successful and fulfilling research.

• Why does mental health research matter?

Mental health research is an essential area of study. It includes any research that focuses on topics related to people’s mental and emotional well-being.

As a complex health topic that, despite the prevalence of mental health conditions, still has an unending number of unanswered questions, the need for thorough research into causes, triggers, and treatment options is clear.

Research into this heavily stigmatized and often misunderstood topic is needed to find better ways to support people struggling with mental health conditions. Understanding what causes them is another crucial area of study, as it enables individuals, companies, and policymakers to make well-informed choices that can help prevent illnesses like anxiety and depression.

• How to choose a strong mental health research topic

As one of the most important parts of beginning a new research project, picking a topic that is intriguing, unique, and in demand is a great way to get the best results from your efforts.

Mental health is a blanket term with many niches and specific areas to explore. But, no matter which direction you choose, follow the tips below to ensure you pick the right topic.

Prioritize your interests and skills

While a big part of research is exploring a new and exciting topic, this exploration is best done within a topic or niche in which you are interested and experienced.

Research is tough, even at the best of times. To combat fatigue and increase your chances of pushing through to the finish line, we recommend choosing a topic that aligns with your personal interests, training, or skill set.

Consider emerging trends

Topical and current research questions are hot commodities because they offer solutions and insights into culturally and socially relevant problems.

Depending on the scope and level of freedom you have with your upcoming research project, choosing a topic that’s trending in your area of study is one way to get support and funding (if you need it).

Not every study can be based on a cutting-edge topic, but this can be a great way to explore a new space and create baseline research data for future studies.

Assess your resources and timeline

Before choosing a super ambitious and exciting research topic, consider your project restrictions.

You’ll need to think about things like your research timeline, access to resources and funding, and expected project scope when deciding how broad your research topic will be. In most cases, it’s better to start small and focus on a specific area of study.

Broad research projects are expensive and labor and resource-intensive. They can take years or even decades to complete. Before biting off more than you can chew, consider your scope and find a research question that fits within it.

Read up on the latest research

Finally, once you have narrowed in on a specific topic, you need to read up on the latest studies and published research. A thorough research assessment is a great way to gain some background context on your chosen topic and stops you from repeating a study design. Using the existing work as your guide, you can explore more specific and niche questions to provide highly beneficial answers and insights.

• Trending research questions for post-secondary students

As a post-secondary student, finding interesting research questions that fit within the scope of your classes or resources can be challenging. But, with a little bit of effort and pre-planning, you can find unique mental health research topics that will meet your class or project requirements.

Examples of research topics for post-secondary students include the following:

How does school-related stress impact a person’s mental health?

To what extent does burnout impact mental health in medical students?

How does chronic school stress impact a student’s physical health?

How does exam season affect the severity of mental health symptoms?

Is mental health counseling effective for students in an acute mental crisis?

• Research questions about anxiety and depression

Anxiety and depression are two of the most commonly spoken about mental health conditions. You might assume that research about these conditions has already been exhausted or that it’s no longer in demand. That’s not the case at all.

According to a 2022 survey by Centers for Disease Control and Prevention (CDC), 12.5% of American adults struggle with regular feelings of worry, nervousness, and anxiety, and 5% struggle with regular feelings of depression. These percentages amount to millions of lives affected, meaning new research into these conditions is essential.

If either of these topics interests you, here are a few trending research questions you could consider:

Does gender play a role in the early diagnosis of anxiety?

How does untreated anxiety impact quality of life?

What are the most common symptoms of anxiety in working professionals aged 20–29?

To what extent do treatment delays impact quality of life in patients with undiagnosed anxiety?

To what extent does stigma affect the quality of care received by people with anxiety?

Here are some examples of research questions about depression:

Does diet play a role in the severity of depression symptoms?

Can people have a genetic predisposition to developing depression?

How common is depression in work-from-home employees?

Does mood journaling help manage depression symptoms?

What role does exercise play in the management of depression symptoms?

• Research questions about personality disorders

Personality disorders are complex mental health conditions tied to a person’s behaviors, sense of self, and how they interact with the world around them. Without a diagnosis and treatment, people with personality disorders are more likely to develop negative coping strategies during periods of stress and adversity, which can impact their quality of life and relationships.

There’s no shortage of specific research questions in this category. Here are some examples of research questions about personality disorders that you could explore:

What environments are more likely to trigger the development of a personality disorder?

What barriers impact access to care for people with personality disorders?

To what extent does undiagnosed borderline personality disorder impact a person’s ability to build relationships?

How does group therapy impact symptom severity in people with schizotypal personality disorder?

What is the treatment compliance rate of people with paranoid personality disorder?

• Research questions about substance use disorders

“Substance use disorders” is a blanket term for treatable behaviors and patterns within a person’s brain that lead them to become dependent on illicit drugs, alcohol, or prescription medications. It’s one of the most stigmatized mental health categories.

The severity of a person’s symptoms and how they impact their ability to participate in their regular daily life can vary significantly from person to person. But, even in less severe cases, people with a substance use disorder display some level of loss of control due to their need to use the substance they are dependent on.

This is an ever-evolving topic where research is in hot demand. Here are some example research questions:

To what extent do meditation practices help with craving management?

How effective are detox centers in treating acute substance use disorder?

Are there genetic factors that increase a person’s chances of developing a substance use disorder?

How prevalent are substance use disorders in immigrant populations?

To what extent do prescription medications play a role in developing substance use disorders?

• Research questions about mental health treatments

Treatments for mental health, pharmaceutical therapies in particular, are a common topic for research and exploration in this space.

Besides the clinical trials required for a drug to receive FDA approval, studies into the efficacy, risks, and patient experiences are essential to better understand mental health therapies.

These types of studies can easily become large in scope, but it’s possible to conduct small cohort research on mental health therapies that can provide helpful insights into the actual experiences of the people receiving these treatments.

Here are some questions you might consider:

What are the long-term effects of electroconvulsive therapy (ECT) for patients with severe depression?

How common is insomnia as a side effect of oral mental health medications?

What are the most common causes of non-compliance for mental health treatments?

How long does it take for patients to report noticeable changes in symptom severity after starting injectable mental health medications?

What issues are most common when weaning a patient off of an anxiety medication?

• Controversial mental health research questions

If you’re interested in exploring more cutting-edge research topics, you might consider one that’s “controversial.”

Depending on your own personal values, you might not think many of these topics are controversial. In the context of the research environment, this depends on the perspectives of your project lead and the desires of your sponsors. These topics may not align with the preferred subject matter.

That being said, that doesn’t make them any less worth exploring. In many cases, it makes them more worthwhile, as they encourage people to ask questions and think critically.

Here are just a few examples of “controversial” mental health research questions:

To what extent do financial crises impact mental health in young adults?

How have climate concerns impacted anxiety levels in young adults?

To what extent do psychotropic drugs help patients struggling with anxiety and depression?

To what extent does political reform impact the mental health of LGBTQ+ people?

What mental health supports should be available for the families of people who opt for medically assisted dying?

• Research questions about socioeconomic factors & mental health

Socioeconomic factors—like where a person grew up, their annual income, the communities they are exposed to, and the amount, type, and quality of mental health resources they have access to—significantly impact overall health.

This is a complex and multifaceted issue. Choosing a research question that addresses these topics can help researchers, experts, and policymakers provide more equitable and accessible care over time.

Examples of questions that tackle socioeconomic factors and mental health include the following:

How does sliding scale pricing for therapy increase retention rates?

What is the average cost to access acute mental health crisis care in [a specific region]?

To what extent does a person’s environment impact their risk of developing a mental health condition?

How does mental health stigma impact early detection of mental health conditions?

To what extent does discrimination affect the mental health of LGBTQ+ people?

• Research questions about the benefits of therapy

Therapy, whether that’s in groups or one-to-one sessions, is one of the most commonly utilized resources for managing mental health conditions. It can help support long-term healing and the development of coping mechanisms.

Yet, despite its popularity, more research is needed to properly understand its benefits and limitations.

Here are some therapy-based questions you could consider to inspire your own research:

In what instances does group therapy benefit people more than solo sessions?

How effective is cognitive behavioral therapy for patients with severe anxiety?

After how many therapy sessions do people report feeling a better sense of self?

Does including meditation reminders during therapy improve patient outcomes?

To what extent has virtual therapy improved access to mental health resources in rural areas?

• Research questions about mental health trends in teens

Adolescents are a particularly interesting group for mental health research due to the prevalence of early-onset mental health symptoms in this age group.

As a time of self-discovery and change, puberty brings plenty of stress, anxiety, and hardships, all of which can contribute to worsening mental health symptoms.

If you’re looking to learn more about how to support this age group with mental health, here are some examples of questions you could explore:

Does parenting style impact anxiety rates in teens?

How early should teenagers receive mental health treatment?

To what extent does cyberbullying impact adolescent mental health?

What are the most common harmful coping mechanisms explored by teens?

How have smartphones affected teenagers’ self-worth and sense of self?

• Research questions about social media and mental health

Social media platforms like TikTok, Instagram, YouTube, Facebook, and X (formerly Twitter) have significantly impacted day-to-day communication. However, despite their numerous benefits and uses, they have also become a significant source of stress, anxiety, and self-worth issues for those who use them.

These platforms have been around for a while now, but research on their impact is still in its infancy. Are you interested in building knowledge about this ever-changing topic? Here are some examples of social media research questions you could consider:

To what extent does TikTok’s mental health content impact people’s perception of their health?

How much non-professional mental health content is created on social media platforms?

How has social media content increased the likelihood of a teen self-identifying themselves with ADHD or autism?

To what extent do social media photoshopped images impact body image and self-worth?

Has social media access increased feelings of anxiety and dread in young adults?

• Mental health research is incredibly important

As you have seen, there are so many unique mental health research questions worth exploring. Which options are piquing your interest?

Whether you are a university student considering your next paper topic or a professional looking to explore a new area of study, mental health is an exciting and ever-changing area of research to get involved with.

Your research will be valuable, no matter how big or small. As a niche area of healthcare still shrouded in stigma, any insights you gain into new ways to support, treat, or identify mental health triggers and trends are a net positive for millions of people worldwide.

Get started today

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• 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

2149 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.

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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).

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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.

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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.

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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

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

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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

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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

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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.

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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.

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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.

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This introductory chapter explicates the conceptual background of the volume. It describes the tradition of the Qualitative Research in Mental Health (QRMH) conferences and illuminates the transdisciplinary field of mental health as well as the current discourse of mental health as global challenge. Innovative elements of the book chapters are pointed out and related to main features of qualitative research in general and in mental health research specifically, like power issues and ethical considerations, the meaningfulness of process research and naturalistic settings, how to accumulate knowledge by doing metasynthesis and how research can become an intervention. Finally, the chapter gives an outline of the book’s structure.

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Borcsa, M., Willig, C., Schröer-Werner, S. (2021). Introduction: Qualitative Research in Mental Health—Innovation and Collaboration. In: Borcsa, M., Willig, C. (eds) Qualitative Research Methods in Mental Health. Springer, Cham. https://doi.org/10.1007/978-3-030-65331-6_1

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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

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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.

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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].

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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.

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Additional file 1..

Interview topic guide: Adult groups.

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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

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35 Qualitative research methods in mental health

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In this chapter I set out to introduce the reader to qualitative research in mental health. I describe its main methods of inquiry, and its underpinning foundational and philosophical principles. I give numerous examples of where qualitative research has been fruitfully employed in community psychiatry. I then describe criteria of rigour which can be used to assess the strength and contribution of any qualitative study in mental health. I believe qualitative research continues to offer interesting insights into the prevention, diagnosis, phenomenology, treatment, management, and understanding of psychiatric disorder. It may also assist resolution of current policy imperatives, such as calls for person-centred care, and more thorough evaluations of service effectiveness.

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• 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

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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).

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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.

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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.

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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

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Received : 20 December 2022

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Published : 14 November 2023

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

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Qualitative research methods in mental health

• PMID: 21856603
• DOI: 10.1136/ebmh.13.2.35

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.

• Evidence-Based Medicine*
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ORIGINAL RESEARCH article

&quot;i have to fight for them to investigate things&quot;: a qualitative exploration of physical and mental healthcare for women diagnosed with mental illness.

• 1 La Trobe University, Melbourne, Australia
• 2 Sunshine Coast Mind and Neuroscience Thompson Institute, University of the Sunshine Coast, Sunshine Coast, Queensland, Australia
• 3 School of Law, College of Arts, Social Sciences and Commerce, La Trobe University, Melbourne, Victoria, Australia
• 4 School of Global, Urban and Social Studies, College of Design and Social Context, RMIT University, Melbourne, Victoria, Australia
• 5 School of English, Drama and Film, College of Arts and Humanities, University College Dublin, Dublin, Ireland
• 6 School of Social and Political Science, Faculty of Arts, University of Melbourne, Melbourne, Victoria, Australia
• 7 Charles Sturt University, Bathurst, New South Wales, Australia

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Introduction: Women play a significant role in the management of their own healthcare and that of others, however women diagnosed with mental illness and physical health concerns experience significant health inequalities as compared to people living without mental health concerns. Methods: In this paper, we reflect on the experiences of 20 cis women diagnosed with mental and physical health concerns who agreed to be a part of this research. This qualitative study is part of the larger Healthtalk Australia research project which was not gender specific. Female participants shared many experiences of mental and physical healthcare in interviews with researchers that pointed to the need for a gendered approach to addressing health inequalities. Consequently, we iteratively consolidated transcripts of interviews with participants into thematic categories facilitated by NVIVO 12. Results: We identified two broad themes and a set of subthemes: in the doctor's officeexperience of labelling; negotiating medications; and interactions with physical and mental health, and outside the doctor's office -responses to trauma, financial concerns, and reliance on participant's internal resources to get healthcare needs met. Discussion: We conclude that participants in this study undertook significant work to manage their own healthcare needs, despite being challenged by clinicians and systems that failed to see them as whole people with expertise regarding their own health.

Keywords: mental illness, Women, physical health, Patient-doctor relationship, self-determination, diagnosis

Received: 23 Dec 2023; Accepted: 12 Apr 2024.

Copyright: © 2024 Zirnsak, Elwyn, McLoaughlan, Le Couteur, Green, Hill, Roberts and Maylea. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Tessa-May Zirnsak, La Trobe University, Melbourne, Australia

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

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Special Issue on “Qualitative Inquiry in Mental Health Research with Young People”

Katherine m. boydell.

1 Black Dog Institute, School of Psychiatry, University of New South Wales, Randwick, NSW 2031, Australia

Michael Hodgins

2 School of Women’s and Children’s Health, University of New South Wales, Randwick, NSW 2031, Australia; [email protected]

Associated Data

Not applicable.

This editorial to the Special Issue on Qualitative Inquiry in Mental Health Research with Young People provides an overview of the importance of qualitative inquiry to the field of child and youth mental health. The issue highlights research using qualitative methods to depict the lived experiences and contribution of young people in areas that reflect important mental health concerns, ranging from anxiety, non-suicidal self-injury, positive resilience in young people in times of crisis, and drug and alcohol treatment.

1. Introduction

Qualitative inquiry provides an opportunity for research participants to offer authentic experiential evidence to help shape policy and mental health service provision from an evidence-based perspective. Qualitative methods provide richly textured, thick description to supplement the breadth of understanding afforded by quantitative methods, elicit the perspectives and lived experience of research participants, explore issues that have not been well studied, develop conceptual theories or test hypotheses, or examine a phenomenon or intervention.

This Special Issue aims to discuss new knowledge and cutting-edge developments in qualitative mental health research with young people through selected works, each making an important contribution to the extant knowledge base. It represents a forum for disseminating pertinent research findings and innovative ideas and methods from the field.

Young people are rarely meaningfully involved in contributing to the development, implementation, and evaluation of interventions designed to address their mental health challenges [ 1 ]. However, qualitative methods, which are increasingly being taken up in the mental health arena [ 2 ], are well suited to research with young people. They offer the opportunity for young people to express their perspectives and share their experiences using strategies that encourage meaningful involvement [ 3 ]. The most common techniques in the qualitative researcher’s toolbox are individual semi-structured interviews, focus groups, document reviews, and participant observation. Recent work has introduced arts-based qualitative methods such as photovoice [ 4 ], digital storytelling [ 5 ] and body mapping [ 6 ]. The application of such qualitative methods is broad, ranging from exploratory work in generating knowledge, building theory and conceptual frameworks to understanding the phenomena under study, and influencing practice and policy change [ 7 ]. Qualitative methods are generally integral to youth-centred, participatory approaches that privilege the experiences and perspectives of participants in research.

2. The Special Issue

This Special Issue highlights research using qualitative methods to depict the lived experiences and contribution of young people in areas that reflect important mental health concerns, ranging from non-suicidal self-injury, positive resilience in young people in times of crisis, and drug and alcohol treatment.

The contributors to this Special Issue drew from a range of methodological perspectives and employed a variety of qualitative data collection methods, including arts-based methods, such as body mapping, photovoice and ecomaps, secondary documents, in-depth interviews, participant observation and journaling. The contributors also drew upon diverse forms of analysis including hermeneutic phenomenology, reflexive thematic analysis, case study, and narrative analysis. The studies described were conducted in Canada, Europe (UK, Germany, Austria), and Australia.

Cus et al. [ 8 ] use reflexive thematic analysis to qualitatively assess user needs and preferences of 15 young women (12–18 years) who engaged in non-suicidal self-injury regarding smartphone mental health interventions. Their goal was to develop a framework for engaging digital resources for mental health and to generate ideas on how future mental health interventions could potentially be more engaging. Young people’s responses are organised along three different contexts: the mental health condition, the person using the intervention and the technology. Identified preferences were for a more flexible user-driven approach, support for young people in moments of crisis when they experience the urge to self-injure, content that is adaptive to everyday life settings such as home and school, and receipt of support at different times.

COVID-19 has been associated with loneliness, distress, and anxiety in young people. In Dadich and colleagues’ [ 9 ] methodological article, exemplars sourced from social media platforms are used to highlight the creative brilliance of young people during these times of crisis. These secondary sources reflect how the arts can be used to highlight positive experiences during crisis and learn from the creative brilliance of young people. The authors posit that positive organisational arts-based youth scholarship has utility for understanding the ways in which young people use the arts to redress negativity and focus on agency, peace, and collectedness. Positive organisational scholarship allows for the examination, understanding and promotion of experiences that generate positive emotion and bolster resilience.

Francis and her colleagues [ 10 ] investigated parent and pre-adolescent perspectives regarding screen use and the source of conflict around social media in a small town in Ontario, Canada. Using a qualitative analysis of naturalistic conversation, they found that parents and children have conflicts regarding screens, hold different perspectives, and place different values on screen use. Young people were willing to compromise about screen use with their parents and recognised the potential costs and benefits of screen use. The authors conclude that social messaging and media discussion about screen use needs to change.

The methodological article by Macken and her colleagues [ 11 ] explores the utility of using body mapping, an arts-based method, in the drug and alcohol treatment sector in Sydney, Australia, to explore young people’s strengths and support networks. They found body mapping facilitated discussions on subject matter normally challenging for young people to talk about. It engaged and focused young people on a task and created a platform for the expression of strengths and supports. The creative process of crafting a body map encouraged reflection, allowed ownership of the story conveyed, and generated a feeling of pride and accomplishment. Visual methods such as body mapping hold promise for working with young participants in alcohol and other drug treatment and other research settings as an engaging and less confrontational form of data collection.

The service experiences of young people and their parents/carers who completed Dialectical Behaviour Therapy (DBT) treatment in the UK were explored by Ratnaweera and co-authors [ 12 ]. Young people indicated that the treatment program was experienced as a person-centred approach, and resulted in a new way of living, better self-understanding, and the acquisition of new skills. Parents/carers expressed their experience of improved relationships, feeling supported, and enhanced quality of life.

Samir and colleagues [ 13 ] acknowledged the dearth of research that involves young people from culturally and linguistically diverse communities in the entire research process, including design, analysis, and dissemination. Their health priority mapping work with a Youth Advisory Group in South West Sydney revealed that their main areas of concern when thinking about health were mental health and stress. The research team highlight the bottom-up approach they used to meaningfully involve young students in the process; for example, using young people as workshop facilitators.

Woodgate and her colleagues [ 14 ] sought to highlight the voice of young people in Winnipeg, Canada, living with anxiety. They drew upon in-depth interviews, photovoice and ecomaps. Anxiety was described by youth as a ‘monster’—with associated feelings of fear, loss and pain, but also hope. This represents the first study to reveal that young people use metaphors to make sense of living with anxiety; they provide insights into the broader views of their lived space, lived body, lived time and lived relationships. The authors conclude by arguing for the use of narrative and visual metaphors as a communicative strategy to convey the experiences of young people to researchers, clinicians, and the public.

3. Conclusions

This Special Issue provides a broad overview of established and emerging qualitative methodological approaches and methods used to involve young people in mental health research. It represents the richness and strength of the field currently, which will no doubt continue to contribute mental health outcomes for young people moving forward.

Author Contributions

This Special Issue on Qualitative Inquiry in Mental Health Research with Young People was edited jointly by K.M.B. and M.H. This editorial was written jointly by the editors. All authors have read and agreed to the published version of the manuscript.

This research received no external funding.

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Accumulating harm and waiting for crisis: Parents perspectives of accessing Child and Adolescent Mental Health Services for their autistic child experiencing mental health difficulties

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Background Autistic children and young people are at increased risk of mental health difficulties, but often face barriers when seeking help from Child and Adolescent Mental Health Services (CAMHS). There is limited literature exploring the accessibility of CAMHS for autistic young people, particularly from parents perspectives. The present study aimed to 1) explore the experiences of parents/carers seeking help from CAMHS for their autistic childs mental health difficulties, and 2) gain parents perceptions of the accessibility of CAMHS support for their child and understand what could be improved. Methods A mixed-methods survey design was used to learn from parents/carers. 300 parents/carers took part from across the UK between June and October 2023. Quantitative data were analysed using descriptive statistics, and qualitative data using qualitative content analysis. Results Findings demonstrated the ongoing struggles that parents/carers faced when seeking professional help from CAMHS for their child. Many were not referred to CAMHS or were rejected without an assessment, often due to issues relating to diagnostic overshadowing, a high threshold for assessment, or a lack of professional knowledge about autism and care pathways. Those who were referred reported a lack of reasonable adjustments and offers of ineffective or inappropriate therapies, leaving young people unable to engage, and thus not benefiting. Ultimately, parents felt their childs mental health difficulties either did not improve or declined to the point of crisis. However, there was a recognition that some professionals were kind and compassionate, and provided the validation that parents needed. Conclusions There is a need for a more neuro-inclusive and personalised approach in CAMHS, from the professionals themselves, in the adjustments that are offered, and in the therapies that are provided. Further research, funding, and training are urgently needed to ensure mental health support is accessible, timely, and effective for autistic CYP.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

This study did not receive any funding.

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Ethics committee of Liverpool John Moores University gave ethical approval for this work (reference: 23/PSY/046).

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

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The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

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