qualitative data analysis in public health research

Collecting and Analyzing Qualitative Data

Brent Wolff, Frank Mahoney, Anna Leena Lohiniva, and Melissa Corkum

• Choosing When to Apply Qualitative Methods
• Commonly Used Qualitative Methods in Field Investigations
• Sampling and Recruitment for Qualitative Research
• Managing, Condensing, Displaying, and Interpreting Qualitative Data
• Coding and Analysis Requirements

Qualitative research methods are a key component of field epidemiologic investigations because they can provide insight into the perceptions, values, opinions, and community norms where investigations are being conducted ( 1,2 ). Open-ended inquiry methods, the mainstay of qualitative interview techniques, are essential in formative research for exploring contextual factors and rationales for risk behaviors that do not fit neatly into predefined categories. For example, during the 2014–2015 Ebola virus disease outbreaks in parts of West Africa, understanding the cultural implications of burial practices within different communities was crucial to designing and monitoring interventions for safe burials ( Box 10.1 ). In program evaluations, qualitative methods can assist the investigator in diagnosing what went right or wrong as part of a process evaluation or in troubleshooting why a program might not be working as well as expected. When designing an intervention, qualitative methods can be useful in exploring dimensions of acceptability to increase the chances of intervention acceptance and success. When performed in conjunction with quantitative studies, qualitative methods can help the investigator confirm, challenge, or deepen the validity of conclusions than either component might have yielded alone ( 1,2 ).

Qualitative research was used extensively in response to the Ebola virus disease outbreaks in parts of West Africa to understand burial practices and to design culturally appropriate strategies to ensure safe burials. Qualitative studies were also used to monitor key aspects of the response.

In October 2014, Liberia experienced an abrupt and steady decrease in case counts and deaths in contrast with predicted disease models of an increased case count. At the time, communities were resistant to entering Ebola treatment centers, raising the possibility that patients were not being referred for care and communities might be conducting occult burials.

To assess what was happening at the community level, the Liberian Emergency Operations Center recruited epidemiologists from the US Department of Health and Human Services/Centers for Disease Control and Prevention and the African Union to investigate the problem.

Teams conducted in-depth interviews and focus group discussions with community leaders, local funeral directors, and coffin makers and learned that communities were not conducting occult burials and that the overall number of burials was less than what they had experienced in previous years. Other key findings included the willingness of funeral directors to cooperate with disease response efforts, the need for training of funeral home workers, and considerable community resistance to cremation practices. These findings prompted the Emergency Operations Center to open a burial ground for Ebola decedents, support enhanced testing of burials in the private sector, and train private-sector funeral workers regarding safe burial practices.

Source: Melissa Corkum, personal communication.

Similar to quantitative approaches, qualitative research seeks answers to specific questions by using rigorous approaches to collecting and compiling information and producing findings that can be applicable beyond the study population. The fundamental difference in approaches lies in how they translate real-life complexities of initial observations into units of analysis. Data collected in qualitative studies typically are in the form of text or visual images, which provide rich sources of insight but also tend to be bulky and time-consuming to code and analyze. Practically speaking, qualitative study designs tend to favor small, purposively selected samples ideal for case studies or in-depth analysis ( 1 ). The combination of purposive sampling and open-ended question formats deprive qualitative study designs of the power to quantify and generalize conclusions, one of the key limitations of this approach.

Qualitative scientists might argue, however, that the generalizability and precision possible through probabilistic sampling and categorical outcomes are achieved at the cost of enhanced validity, nuance, and naturalism that less structured approaches offer ( 3 ). Open-ended techniques are particularly useful for understanding subjective meanings and motivations underlying behavior. They enable investigators to be equally adept at exploring factors observed and unobserved, intentions as well as actions, internal meanings as well as external consequences, options considered but not taken, and unmeasurable as well as measurable outcomes. These methods are important when the source of or solution to a public health problem is rooted in local perceptions rather than objectively measurable characteristics selected by outside observers ( 3 ). Ultimately, such approaches have the ability to go beyond quantifying questions of how much or how many to take on questions of how or why from the perspective and in the words of the study subjects themselves ( 1,2 ).

Another key advantage of qualitative methods for field investigations is their flexibility ( 4 ). Qualitative designs not only enable but also encourage flexibility in the content and flow of questions to challenge and probe for deeper meanings or follow new leads if they lead to deeper understanding of an issue (5). It is not uncommon for topic guides to be adjusted in the course of fieldwork to investigate emerging themes relevant to answering the original study question. As discussed herein, qualitative study designs allow flexibility in sample size to accommodate the need for more or fewer interviews among particular groups to determine the root cause of an issue (see the section on Sampling and Recruitment in Qualitative Research). In the context of field investigations, such methods can be extremely useful for investigating complex or fast-moving situations where the dimensions of analysis cannot be fully anticipated.

Ultimately, the decision whether to include qualitative research in a particular field investigation depends mainly on the nature of the research question itself. Certain types of research topics lend themselves more naturally to qualitative rather than other approaches ( Table 10.1 ). These include exploratory investigations when not enough is known about a problem to formulate a hypothesis or develop a fixed set of questions and answer codes. They include research questions where intentions matter as much as actions and “why?” or “why not?” questions matter as much as precise estimation of measured outcomes. Qualitative approaches also work well when contextual influences, subjective meanings, stigma, or strong social desirability biases lower faith in the validity of responses coming from a relatively impersonal survey questionnaire interview.

The availability of personnel with training and experience in qualitative interviewing or observation is critical for obtaining the best quality data but is not absolutely required for rapid assessment in field settings. Qualitative interviewing requires a broader set of skills than survey interviewing. It is not enough to follow a topic guide like a questionnaire, in order, from top to bottom. A qualitative interviewer must exercise judgment to decide when to probe and when to move on, when to encourage, challenge, or follow relevant leads even if they are not written in the topic guide. Ability to engage with informants, connect ideas during the interview, and think on one’s feet are common characteristics of good qualitative interviewers. By far the most important qualification in conducting qualitative fieldwork is a firm grasp of the research objectives; with this qualification, a member of the research team armed with curiosity and a topic guide can learn on the job with successful results.

Semi-Structured Interviews

Semi-structured interviews can be conducted with single participants (in-depth or individual key informants) or with groups (focus group discussions [FGDs] or key informant groups). These interviews follow a suggested topic guide rather than a fixed questionnaire format. Topic guides typically consist of a limited number ( 10– 15 ) of broad, open-ended questions followed by bulleted points to facilitate optional probing. The conversational back-and-forth nature of a semi-structured format puts the researcher and researched (the interview participants) on more equal footing than allowed by more structured formats. Respondents, the term used in the case of quantitative questionnaire interviews, become informants in the case of individual semi-structured in-depth interviews (IDIs) or participants in the case of FGDs. Freedom to probe beyond initial responses enables interviewers to actively engage with the interviewee to seek clarity, openness, and depth by challenging informants to reach below layers of self-presentation and social desirability. In this respect, interviewing is sometimes compared with peeling an onion, with the first version of events accessible to the public, including survey interviewers, and deeper inner layers accessible to those who invest the time and effort to build rapport and gain trust. (The theory of the active interview suggests that all interviews involve staged social encounters where the interviewee is constantly assessing interviewer intentions and adjusting his or her responses accordingly [ 1 ]. Consequently good rapport is important for any type of interview. Survey formats give interviewers less freedom to divert from the preset script of questions and formal probes.)

Individual In-Depth Interviews and Key-Informant Interviews

The most common forms of individual semi-structured interviews are IDIs and key informant interviews (KIIs). IDIs are conducted among informants typically selected for first-hand experience (e.g., service users, participants, survivors) relevant to the research topic. These are typically conducted as one-on-one face-to-face interviews (two-on-one if translators are needed) to maximize rapport-building and confidentiality. KIIs are similar to IDIs but focus on individual persons with special knowledge or influence (e.g., community leaders or health authorities) that give them broader perspective or deeper insight into the topic area ( Box 10.2 ). Whereas IDIs tend to focus on personal experiences, context, meaning, and implications for informants, KIIs tend to steer away from personal questions in favor of expert insights or community perspectives. IDIs enable flexible sampling strategies and represent the interviewing reference standard for confidentiality, rapport, richness, and contextual detail. However, IDIs are time-and labor-intensive to collect and analyze. Because confidentiality is not a concern in KIIs, these interviews might be conducted as individual or group interviews, as required for the topic area.

Focus Group Discussions and Group Key Informant Interviews

FGDs are semi-structured group interviews in which six to eight participants, homogeneous with respect to a shared experience, behavior, or demographic characteristic, are guided through a topic guide by a trained moderator ( 6 ). (Advice on ideal group interview size varies. The principle is to convene a group large enough to foster an open, lively discussion of the topic, and small enough to ensure all participants stay fully engaged in the process.) Over the course of discussion, the moderator is expected to pose questions, foster group participation, and probe for clarity and depth. Long a staple of market research, focus groups have become a widely used social science technique with broad applications in public health, and they are especially popular as a rapid method for assessing community norms and shared perceptions.

Focus groups have certain useful advantages during field investigations. They are highly adaptable, inexpensive to arrange and conduct, and often enjoyable for participants. Group dynamics effectively tap into collective knowledge and experience to serve as a proxy informant for the community as a whole. They are also capable of recreating a microcosm of social norms where social, moral, and emotional dimensions of topics are allowed to emerge. Skilled moderators can also exploit the tendency of small groups to seek consensus to bring out disagreements that the participants will work to resolve in a way that can lead to deeper understanding. There are also limitations on focus group methods. Lack of confidentiality during group interviews means they should not be used to explore personal experiences of a sensitive nature on ethical grounds. Participants may take it on themselves to volunteer such information, but moderators are generally encouraged to steer the conversation back to general observations to avoid putting pressure on other participants to disclose in a similar way. Similarly, FGDs are subject by design to strong social desirability biases. Qualitative study designs using focus groups sometimes add individual interviews precisely to enable participants to describe personal experiences or personal views that would be difficult or inappropriate to share in a group setting. Focus groups run the risk of producing broad but shallow analyses of issues if groups reach comfortable but superficial consensus around complex topics. This weakness can be countered by training moderators to probe effectively and challenge any consensus that sounds too simplistic or contradictory with prior knowledge. However, FGDs are surprisingly robust against the influence of strongly opinionated participants, highly adaptable, and well suited to application in study designs where systematic comparisons across different groups are called for.

Like FGDs, group KIIs rely on positive chemistry and the stimulating effects of group discussion but aim to gather expert knowledge or oversight on a particular topic rather than lived experience of embedded social actors. Group KIIs have no minimum size requirements and can involve as few as two or three participants.

Egypt’s National Infection Prevention and Control (IPC) program undertook qualitative research to gain an understanding of the contextual behaviors and motivations of healthcare workers in complying with IPC guidelines. The study was undertaken to guide the development of effective behavior change interventions in healthcare settings to improve IPC compliance.

Key informant interviews and focus group discussions were conducted in two governorates among cleaning staff, nursing staff, and physicians in different types of healthcare facilities. The findings highlighted social and cultural barriers to IPC compliance, enabling the IPC program to design responses. For example,

• Informants expressed difficulty in complying with IPC measures that forced them to act outside their normal roles in an ingrained hospital culture. Response: Role models and champions were introduced to help catalyze change.
• Informants described fatalistic attitudes that undermined energy and interest in modifying behavior. Response: Accordingly, interventions affirming institutional commitment to change while challenging fatalistic assumptions were developed.
• Informants did not perceive IPC as effective. Response: Trainings were amended to include scientific evidence justifying IPC practices.
• Informants perceived hygiene as something they took pride in and were judged on. Response: Public recognition of optimal IPC practice was introduced to tap into positive social desirability and professional pride in maintaining hygiene in the work environment.

Qualitative research identified sources of resistance to quality clinical practice in Egypt’s healthcare settings and culturally appropriate responses to overcome that resistance.

____________________ Source: Anna Leena Lohiniva, personal communication.

Visualization Methods

Visualization methods have been developed as a way to enhance participation and empower interviewees relative to researchers during group data collection ( 7 ). Visualization methods involve asking participants to engage in collective problem- solving of challenges expressed through group production of maps, diagrams, or other images. For example, participants from the community might be asked to sketch a map of their community and to highlight features of relevance to the research topic (e.g., access to health facilities or sites of risk concentrations). Body diagramming is another visualization tool in which community members are asked to depict how and where a health threat affects the human body as a way of understanding folk conceptions of health, disease, treatment, and prevention. Ensuing debate and dialogue regarding construction of images can be recorded and analyzed in conjunction with the visual image itself. Visualization exercises were initially designed to accommodate groups the size of entire communities, but they can work equally well with smaller groups corresponding to the size of FGDs or group KIIs.

Selecting a Sample of Study Participants

Fundamental differences between qualitative and quantitative approaches to research emerge most clearly in the practice of sampling and recruitment of study participants. Qualitative samples are typically small and purposive. In-depth interview informants are usually selected on the basis of unique characteristics or personal experiences that make them exemplary for the study, if not typical in other respects. Key informants are selected for their unique knowledge or influence in the study domain. Focus group mobilization often seeks participants who are typical with respect to others in the community having similar exposure or shared characteristics. Often, however, participants in qualitative studies are selected because they are exceptional rather than simply representative. Their value lies not in their generalizability but in their ability to generate insight into the key questions driving the study.

Determining Sample Size

Sample size determination for qualitative studies also follows a different logic than that used for probability sample surveys. For example, whereas some qualitative methods specify ideal ranges of participants that constitute a valid observation (e.g., focus groups), there are no rules on how many observations it takes to attain valid results. In theory, sample size in qualitative designs should be determined by the saturation principle , where interviews are conducted until additional interviews yield no additional insights into the topic of research ( 8 ). Practically speaking, designing a study with a range in number of interviews is advisable for providing a level of flexibility if additional interviews are needed to reach clear conclusions.

Recruiting Study Participants

Recruitment strategies for qualitative studies typically involve some degree of participant self-selection (e.g., advertising in public spaces for interested participants) and purposive selection (e.g., identification of key informants). Purposive selection in community settings often requires authorization from local authorities and assistance from local mobilizers before the informed consent process can begin. Clearly specifying eligibility criteria is crucial for minimizing the tendency of study mobilizers to apply their own filters regarding who reflects the community in the best light. In addition to formal eligibility criteria, character traits (e.g., articulate and interested in participating) and convenience (e.g., not too far away) are legitimate considerations for whom to include in the sample. Accommodations to personality and convenience help to ensure the small number of interviews in a typical qualitative design yields maximum value for minimum investment. This is one reason why random sampling of qualitative informants is not only unnecessary but also potentially counterproductive.

Analysis of qualitative data can be divided into four stages: data management, data condensation, data display, and drawing and verifying conclusions ( 9 ).

Managing Qualitative Data

From the outset, developing a clear organization system for qualitative data is important. Ideally, naming conventions for original data files and subsequent analysis should be recorded in a data dictionary file that includes dates, locations, defining individual or group characteristics, interviewer characteristics, and other defining features. Digital recordings of interviews or visualization products should be reviewed to ensure fidelity of analyzed data to original observations. If ethics agreements require that no names or identifying characteristics be recorded, all individual names must be removed from final transcriptions before analysis begins. If data are analyzed by using textual data analysis software, maintaining careful version control over the data files is crucial, especially when multiple coders are involved.

Condensing Qualitative Data

Condensing refers to the process of selecting, focusing, simplifying, and abstracting the data available at the time of the original observation, then transforming the condensed data into a data set that can be analyzed. In qualitative research, most of the time investment required to complete a study comes after the fieldwork is complete. A single hour of taped individual interview can take a full day to transcribe and additional time to translate if necessary. Group interviews can take even longer because of the difficulty of transcribing active group input. Each stage of data condensation involves multiple decisions that require clear rules and close supervision. A typical challenge is finding the right balance between fidelity to the rhythm and texture of original language and clarity of the translated version in the language of analysis. For example, discussions among groups with little or no education should not emerge after the transcription (and translation) process sounding like university graduates. Judgment must be exercised about which terms should be translated and which terms should be kept in vernacular because there is no appropriate term in English to capture the richness of its meaning.

Displaying Qualitative Data

After the initial condensation, qualitative analysis depends on how the data are displayed. Decisions regarding how data are summarized and laid out to facilitate comparison influence the depth and detail of the investigation’s conclusions. Displays might range from full verbatim transcripts of interviews to bulleted summaries or distilled summaries of interview notes. In a field setting, a useful and commonly used display format is an overview chart in which key themes or research questions are listed in rows in a word processer table or in a spreadsheet and individual informant or group entry characteristics are listed across columns. Overview charts are useful because they allow easy, systematic comparison of results.

Drawing and Verifying Conclusions

Analyzing qualitative data is an iterative and ideally interactive process that leads to rigorous and systematic interpretation of textual or visual data. At least four common steps are involved:

• Reading and rereading. The core of qualitative analysis is careful, systematic, and repeated reading of text to identify consistent themes and interconnections emerging from the data. The act of repeated reading inevitably yields new themes, connections, and deeper meanings from the first reading. Reading the full text of interviews multiple times before subdividing according to coded themes is key to appreciating the full context and flow of each interview before subdividing and extracting coded sections of text for separate analysis.
• Coding. A common technique in qualitative analysis involves developing codes for labeling sections of text for selective retrieval in later stages of analysis and verification. Different approaches can be used for textual coding. One approach, structural coding , follows the structure of the interview guide. Another approach, thematic coding , labels common themes that appear across interviews, whether by design of the topic guide or emerging themes assigned based on further analysis. To avoid the problem of shift and drift in codes across time or multiple coders, qualitative investigators should develop a standard codebook with written definitions and rules about when codes should start and stop. Coding is also an iterative process in which new codes that emerge from repeated reading are layered on top of existing codes. Development and refinement of the codebook is inseparably part of the analysis.
• Analyzing and writing memos. As codes are being developed and refined, answers to the original research question should begin to emerge. Coding can facilitate that process through selective text retrieval during which similarities within and between coding categories can be extracted and compared systematically. Because no p values can be derived in qualitative analyses to mark the transition from tentative to firm conclusions, standard practice is to write memos to record evolving insights and emerging patterns in the data and how they relate to the original research questions. Writing memos is intended to catalyze further thinking about the data, thus initiating new connections that can lead to further coding and deeper understanding.
• Verifying conclusions. Analysis rigor depends as much on the thoroughness of the cross-examination and attempt to find alternative conclusions as on the quality of original conclusions. Cross-examining conclusions can occur in different ways. One way is encouraging regular interaction between analysts to challenge conclusions and pose alternative explanations for the same data. Another way is quizzing the data (i.e., retrieving coded segments by using Boolean logic to systematically compare code contents where they overlap with other codes or informant characteristics). If alternative explanations for initial conclusions are more difficult to justify, confidence in those conclusions is strengthened.

Above all, qualitative data analysis requires sufficient time and immersion in the data. Computer textual software programs can facilitate selective text retrieval and quizzing the data, but discerning patterns and arriving at conclusions can be done only by the analysts. This requirement involves intensive reading and rereading, developing codebooks and coding, discussing and debating, revising codebooks, and recoding as needed until clear patterns emerge from the data. Although quality and depth of analysis is usually proportional to the time invested, a number of techniques, including some mentioned earlier, can be used to expedite analysis under field conditions.

• Detailed notes instead of full transcriptions. Assigning one or two note-takers to an interview can be considered where the time needed for full transcription and translation is not feasible. Even if plans are in place for full transcriptions after fieldwork, asking note-takers to submit organized summary notes is a useful technique for getting real-time feedback on interview content and making adjustments to topic guides or interviewer training as needed.
• Summary overview charts for thematic coding. (See discussion under “Displaying Data.”) If there is limited time for full transcription and/or systematic coding of text interviews using textual analysis software in the field, an overview chart is a useful technique for rapid manual coding.
• Thematic extract files. This is a slightly expanded version of manual thematic coding that is useful when full transcriptions of interviews are available. With use of a word processing program, files can be sectioned according to themes, or separate files can be created for each theme. Relevant extracts from transcripts or analyst notes can be copied and pasted into files or sections of files corresponding to each theme. This is particularly useful for storing appropriate quotes that can be used to illustrate thematic conclusions in final reports or manuscripts.
• Teamwork. Qualitative analysis can be performed by a single analyst, but it is usually beneficial to involve more than one. Qualitative conclusions involve subjective judgment calls. Having more than one coder or analyst working on a project enables more interactive discussion and debate before reaching consensus on conclusions.
• Systematic coding.
• Selective retrieval of coded segments.
• Verifying conclusions (“quizzing the data”).
• Working on larger data sets with multiple separate files.
• Working in teams with multiple coders to allow intercoder reliability to be measured and monitored.

The most widely used software packages (e.g., NVivo [QSR International Pty. Ltd., Melbourne, VIC, Australia] and ATLAS.ti [Scientific Software Development GmbH, Berlin, Germany]) evolved to include sophisticated analytic features covering a wide array of applications but are relatively expensive in terms of license cost and initial investment in time and training. A promising development is the advent of free or low-cost Web-based services (e.g., Dedoose [Sociocultural Research Consultants LLC, Manhattan Beach, CA]) that have many of the same analytic features on a more affordable subscription basis and that enable local research counterparts to remain engaged through the analysis phase (see Teamwork criteria). The start-up costs of computer-assisted analysis need to be weighed against their analytic benefits, which tend to decline with the volume and complexity of data to be analyzed. For rapid situational analyses or small scale qualitative studies (e.g. fewer than 30 observations as an informal rule of thumb), manual coding and analysis using word processing or spreadsheet programs is faster and sufficient to enable rigorous analysis and verification of conclusions.

Qualitative methods belong to a branch of social science inquiry that emphasizes the importance of context, subjective meanings, and motivations in understanding human behavior patterns. Qualitative approaches definitionally rely on open-ended, semistructured, non-numeric strategies for asking questions and recording responses. Conclusions are drawn from systematic visual or textual analysis involving repeated reading, coding, and organizing information into structured and emerging themes. Because textual analysis is relatively time-and skill-intensive, qualitative samples tend to be small and purposively selected to yield the maximum amount of information from the minimum amount of data collection. Although qualitative approaches cannot provide representative or generalizable findings in a statistical sense, they can offer an unparalleled level of detail, nuance, and naturalistic insight into the chosen subject of study. Qualitative methods enable investigators to “hear the voice” of the researched in a way that questionnaire methods, even with the occasional open-ended response option, cannot.

Whether or when to use qualitative methods in field epidemiology studies ultimately depends on the nature of the public health question to be answered. Qualitative approaches make sense when a study question about behavior patterns or program performance leads with why, why not , or how . Similarly, they are appropriate when the answer to the study question depends on understanding the problem from the perspective of social actors in real-life settings or when the object of study cannot be adequately captured, quantified, or categorized through a battery of closed-ended survey questions (e.g., stigma or the foundation of health beliefs). Another justification for qualitative methods occurs when the topic is especially sensitive or subject to strong social desirability biases that require developing trust with the informant and persistent probing to reach the truth. Finally, qualitative methods make sense when the study question is exploratory in nature, where this approach enables the investigator the freedom and flexibility to adjust topic guides and probe beyond the original topic guides.

Given that the conditions just described probably apply more often than not in everyday field epidemiology, it might be surprising that such approaches are not incorporated more routinely into standard epidemiologic training. Part of the answer might have to do with the subjective element in qualitative sampling and analysis that seems at odds with core scientific values of objectivity. Part of it might have to do with the skill requirements for good qualitative interviewing, which are generally more difficult to find than those required for routine survey interviewing.

For the field epidemiologist unfamiliar with qualitative study design, it is important to emphasize that obtaining important insights from applying basic approaches is possible, even without a seasoned team of qualitative researchers on hand to do the work. The flexibility of qualitative methods also tends to make them forgiving with practice and persistence. Beyond the required study approvals and ethical clearances, the basic essential requirements for collecting qualitative data in field settings start with an interviewer having a strong command of the research question, basic interactive and language skills, and a healthy sense of curiosity, armed with a simple open-ended topic guide and a tape recorder or note-taker to capture the key points of the discussion. Readily available manuals on qualitative study design, methods, and analysis can provide additional guidance to improve the quality of data collection and analysis.

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A Review of Qualitative Data Analysis Practices in Health Education and Health Behavior Research

Affiliations.

• 1 1 Emory University, Atlanta, GA, USA.
• 2 2 Columbia University, New York, NY, USA.
• 3 3 Vanderbilt University, Nashville, TN, USA.
• PMID: 30227078
• PMCID: PMC6386595
• DOI: 10.1177/1090198118795019

Data analysis is one of the most important, yet least understood, stages of the qualitative research process. Through rigorous analysis, data can illuminate the complexity of human behavior, inform interventions, and give voice to people's lived experiences. While significant progress has been made in advancing the rigor of qualitative analysis, the process often remains nebulous. To better understand how our field conducts and reports qualitative analysis, we reviewed qualitative articles published in Health Education & Behavior between 2000 and 2015. Two independent reviewers abstracted information in the following categories: data management software, coding approach, analytic approach, indicators of trustworthiness, and reflexivity. Of the 48 ( n = 48) articles identified, the majority ( n = 31) reported using qualitative software to manage data. Double-coding transcripts was the most common coding method ( n = 23); however, nearly one third of articles did not clearly describe the coding approach. Although the terminology used to describe the analytic process varied widely, we identified four overarching trajectories common to most articles ( n = 37). Trajectories differed in their use of inductive and deductive coding approaches, formal coding templates, and rounds or levels of coding. Trajectories culminated in the iterative review of coded data to identify emergent themes. Few articles explicitly discussed trustworthiness or reflexivity. Member checks ( n = 9), triangulation of methods ( n = 8), and peer debriefing ( n = 7) were the most common procedures. Variation in the type and depth of information provided poses challenges to assessing quality and enabling replication. Greater transparency and more intentional application of diverse analytic methods can advance the rigor and impact of qualitative research in our field.

Keywords: health behavior; health promotion; qualitative methods; research design; training health professionals.

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Practical thematic analysis: a guide for multidisciplinary health services research teams engaging in qualitative analysis

• Related content
• Peer review
• Catherine H Saunders , scientist and assistant professor 1 2 ,
• Ailyn Sierpe , research project coordinator 2 ,
• Christian von Plessen , senior physician 3 ,
• Alice M Kennedy , research project manager 2 4 ,
• Laura C Leviton , senior adviser 5 ,
• Steven L Bernstein , chief research officer 1 ,
• Jenaya Goldwag , resident physician 1 ,
• Joel R King , research assistant 2 ,
• Christine M Marx , patient associate 6 ,
• Jacqueline A Pogue , research project manager 2 ,
• Richard K Saunders , staff physician 1 ,
• Aricca Van Citters , senior research scientist 2 ,
• Renata W Yen , doctoral student 2 ,
• Glyn Elwyn , professor 2 ,
• JoAnna K Leyenaar , associate professor 1 2
• on behalf of the Coproduction Laboratory
• 1 Dartmouth Health, Lebanon, NH, USA
• 2 Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, Lebanon, NH, USA
• 3 Center for Primary Care and Public Health (Unisanté), Lausanne, Switzerland
• 4 Jönköping Academy for Improvement of Health and Welfare, School of Health and Welfare, Jönköping University, Jönköping, Sweden
• 5 Highland Park, NJ, USA
• 6 Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St Louis, MO, USA
• Correspondence to: C H Saunders catherine.hylas.saunders{at}dartmouth.edu
• Accepted 26 April 2023

Qualitative research methods explore and provide deep contextual understanding of real world issues, including people’s beliefs, perspectives, and experiences. Whether through analysis of interviews, focus groups, structured observation, or multimedia data, qualitative methods offer unique insights in applied health services research that other approaches cannot deliver. However, many clinicians and researchers hesitate to use these methods, or might not use them effectively, which can leave relevant areas of inquiry inadequately explored. Thematic analysis is one of the most common and flexible methods to examine qualitative data collected in health services research. This article offers practical thematic analysis as a step-by-step approach to qualitative analysis for health services researchers, with a focus on accessibility for patients, care partners, clinicians, and others new to thematic analysis. Along with detailed instructions covering three steps of reading, coding, and theming, the article includes additional novel and practical guidance on how to draft effective codes, conduct a thematic analysis session, and develop meaningful themes. This approach aims to improve consistency and rigor in thematic analysis, while also making this method more accessible for multidisciplinary research teams.

Through qualitative methods, researchers can provide deep contextual understanding of real world issues, and generate new knowledge to inform hypotheses, theories, research, and clinical care. Approaches to data collection are varied, including interviews, focus groups, structured observation, and analysis of multimedia data, with qualitative research questions aimed at understanding the how and why of human experience. 1 2 Qualitative methods produce unique insights in applied health services research that other approaches cannot deliver. In particular, researchers acknowledge that thematic analysis is a flexible and powerful method of systematically generating robust qualitative research findings by identifying, analysing, and reporting patterns (themes) within data. 3 4 5 6 Although qualitative methods are increasingly valued for answering clinical research questions, many researchers are unsure how to apply them or consider them too time consuming to be useful in responding to practical challenges 7 or pressing situations such as public health emergencies. 8 Consequently, researchers might hesitate to use them, or use them improperly. 9 10 11

Although much has been written about how to perform thematic analysis, practical guidance for non-specialists is sparse. 3 5 6 12 13 In the multidisciplinary field of health services research, qualitative data analysis can confound experienced researchers and novices alike, which can stoke concerns about rigor, particularly for those more familiar with quantitative approaches. 14 Since qualitative methods are an area of specialisation, support from experts is beneficial. However, because non-specialist perspectives can enhance data interpretation and enrich findings, there is a case for making thematic analysis easier, more rapid, and more efficient, 8 particularly for patients, care partners, clinicians, and other stakeholders. A practical guide to thematic analysis might encourage those on the ground to use these methods in their work, unearthing insights that would otherwise remain undiscovered.

Given the need for more accessible qualitative analysis approaches, we present a simple, rigorous, and efficient three step guide for practical thematic analysis. We include new guidance on the mechanics of thematic analysis, including developing codes, constructing meaningful themes, and hosting a thematic analysis session. We also discuss common pitfalls in thematic analysis and how to avoid them.

Summary points

Qualitative methods are increasingly valued in applied health services research, but multidisciplinary research teams often lack accessible step-by-step guidance and might struggle to use these approaches

A newly developed approach, practical thematic analysis, uses three simple steps: reading, coding, and theming

Based on Braun and Clarke’s reflexive thematic analysis, our streamlined yet rigorous approach is designed for multidisciplinary health services research teams, including patients, care partners, and clinicians

This article also provides companion materials including a slide presentation for teaching practical thematic analysis to research teams, a sample thematic analysis session agenda, a theme coproduction template for use during the session, and guidance on using standardised reporting criteria for qualitative research

In their seminal work, Braun and Clarke developed a six phase approach to reflexive thematic analysis. 4 12 We built on their method to develop practical thematic analysis ( box 1 , fig 1 ), which is a simplified and instructive approach that retains the substantive elements of their six phases. Braun and Clarke’s phase 1 (familiarising yourself with the dataset) is represented in our first step of reading. Phase 2 (coding) remains as our second step of coding. Phases 3 (generating initial themes), 4 (developing and reviewing themes), and 5 (refining, defining, and naming themes) are represented in our third step of theming. Phase 6 (writing up) also occurs during this third step of theming, but after a thematic analysis session. 4 12

Key features and applications of practical thematic analysis

Step 1: reading.

All manuscript authors read the data

All manuscript authors write summary memos

Step 2: Coding

Coders perform both data management and early data analysis

Codes are complete thoughts or sentences, not categories

Step 3: Theming

Researchers host a thematic analysis session and share different perspectives

Themes are complete thoughts or sentences, not categories

Applications

For use by practicing clinicians, patients and care partners, students, interdisciplinary teams, and those new to qualitative research

When important insights from healthcare professionals are inaccessible because they do not have qualitative methods training

When time and resources are limited

Steps in practical thematic analysis

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We present linear steps, but as qualitative research is usually iterative, so too is thematic analysis. 15 Qualitative researchers circle back to earlier work to check whether their interpretations still make sense in the light of additional insights, adapting as necessary. While we focus here on the practical application of thematic analysis in health services research, we recognise our approach exists in the context of the broader literature on thematic analysis and the theoretical underpinnings of qualitative methods as a whole. For a more detailed discussion of these theoretical points, as well as other methods widely used in health services research, we recommend reviewing the sources outlined in supplemental material 1. A strong and nuanced understanding of the context and underlying principles of thematic analysis will allow for higher quality research. 16

Practical thematic analysis is a highly flexible approach that can draw out valuable findings and generate new hypotheses, including in cases with a lack of previous research to build on. The approach can also be used with a variety of data, such as transcripts from interviews or focus groups, patient encounter transcripts, professional publications, observational field notes, and online activity logs. Importantly, successful practical thematic analysis is predicated on having high quality data collected with rigorous methods. We do not describe qualitative research design or data collection here. 11 17

In supplemental material 1, we summarise the foundational methods, concepts, and terminology in qualitative research. Along with our guide below, we include a companion slide presentation for teaching practical thematic analysis to research teams in supplemental material 2. We provide a theme coproduction template for teams to use during thematic analysis sessions in supplemental material 3. Our method aligns with the major qualitative reporting frameworks, including the Consolidated Criteria for Reporting Qualitative Research (COREQ). 18 We indicate the corresponding step in practical thematic analysis for each COREQ item in supplemental material 4.

Familiarisation and memoing

We encourage all manuscript authors to review the full dataset (eg, interview transcripts) to familiarise themselves with it. This task is most critical for those who will later be engaged in the coding and theming steps. Although time consuming, it is the best way to involve team members in the intellectual work of data interpretation, so that they can contribute to the analysis and contextualise the results. If this task is not feasible given time limitations or large quantities of data, the data can be divided across team members. In this case, each piece of data should be read by at least two individuals who ideally represent different professional roles or perspectives.

We recommend that researchers reflect on the data and independently write memos, defined as brief notes on thoughts and questions that arise during reading, and a summary of their impressions of the dataset. 2 19 Memoing is an opportunity to gain insights from varying perspectives, particularly from patients, care partners, clinicians, and others. It also gives researchers the opportunity to begin to scope which elements of and concepts in the dataset are relevant to the research question.

Data saturation

The concept of data saturation ( box 2 ) is a foundation of qualitative research. It is defined as the point in analysis at which new data tend to be redundant of data already collected. 21 Qualitative researchers are expected to report their approach to data saturation. 18 Because thematic analysis is iterative, the team should discuss saturation throughout the entire process, beginning with data collection and continuing through all steps of the analysis. 22 During step 1 (reading), team members might discuss data saturation in the context of summary memos. Conversations about saturation continue during step 2 (coding), with confirmation that saturation has been achieved during step 3 (theming). As a rule of thumb, researchers can often achieve saturation in 9-17 interviews or 4-8 focus groups, but this will vary depending on the specific characteristics of the study. 23

Data saturation in context

Braun and Clarke discourage the use of data saturation to determine sample size (eg, number of interviews), because it assumes that there is an objective truth to be captured in the data (sometimes known as a positivist perspective). 20 Qualitative researchers often try to avoid positivist approaches, arguing that there is no one true way of seeing the world, and will instead aim to gather multiple perspectives. 5 Although this theoretical debate with qualitative methods is important, we recognise that a priori estimates of saturation are often needed, particularly for investigators newer to qualitative research who might want a more pragmatic and applied approach. In addition, saturation based, sample size estimation can be particularly helpful in grant proposals. However, researchers should still follow a priori sample size estimation with a discussion to confirm saturation has been achieved.

Definition of coding

We describe codes as labels for concepts in the data that are directly relevant to the study objective. Historically, the purpose of coding was to distil the large amount of data collected into conceptually similar buckets so that researchers could review it in aggregate and identify key themes. 5 24 We advocate for a more analytical approach than is typical with thematic analysis. With our method, coding is both the foundation for and the beginning of thematic analysis—that is, early data analysis, management, and reduction occur simultaneously rather than as different steps. This approach moves the team more efficiently towards being able to describe themes.

Building the coding team

Coders are the research team members who directly assign codes to the data, reading all material and systematically labelling relevant data with appropriate codes. Ideally, at least two researchers would code every discrete data document, such as one interview transcript. 25 If this task is not possible, individual coders can each code a subset of the data that is carefully selected for key characteristics (sometimes known as purposive selection). 26 When using this approach, we recommend that at least 10% of data be coded by two or more coders to ensure consistency in codebook application. We also recommend coding teams of no more than four to five people, for practical reasons concerning maintaining consistency.

Clinicians, patients, and care partners bring unique perspectives to coding and enrich the analytical process. 27 Therefore, we recommend choosing coders with a mix of relevant experiences so that they can challenge and contextualise each other’s interpretations based on their own perspectives and opinions ( box 3 ). We recommend including both coders who collected the data and those who are naive to it, if possible, given their different perspectives. We also recommend all coders review the summary memos from the reading step so that key concepts identified by those not involved in coding can be integrated into the analytical process. In practice, this review means coding the memos themselves and discussing them during the code development process. This approach ensures that the team considers a diversity of perspectives.

Coding teams in context

The recommendation to use multiple coders is a departure from Braun and Clarke. 28 29 When the views, experiences, and training of each coder (sometimes known as positionality) 30 are carefully considered, having multiple coders can enhance interpretation and enrich findings. When these perspectives are combined in a team setting, researchers can create shared meaning from the data. Along with the practical consideration of distributing the workload, 31 inclusion of these multiple perspectives increases the overall quality of the analysis by mitigating the impact of any one coder’s perspective. 30

Coding tools

Qualitative analysis software facilitates coding and managing large datasets but does not perform the analytical work. The researchers must perform the analysis themselves. Most programs support queries and collaborative coding by multiple users. 32 Important factors to consider when choosing software can include accessibility, cost, interoperability, the look and feel of code reports, and the ease of colour coding and merging codes. Coders can also use low tech solutions, including highlighters, word processors, or spreadsheets.

Drafting effective codes

To draft effective codes, we recommend that the coders review each document line by line. 33 As they progress, they can assign codes to segments of data representing passages of interest. 34 Coders can also assign multiple codes to the same passage. Consensus among coders on what constitutes a minimum or maximum amount of text for assigning a code is helpful. As a general rule, meaningful segments of text for coding are shorter than one paragraph, but longer than a few words. Coders should keep the study objective in mind when determining which data are relevant ( box 4 ).

Code types in context

Similar to Braun and Clarke’s approach, practical thematic analysis does not specify whether codes are based on what is evident from the data (sometimes known as semantic) or whether they are based on what can be inferred at a deeper level from the data (sometimes known as latent). 4 12 35 It also does not specify whether they are derived from the data (sometimes known as inductive) or determined ahead of time (sometimes known as deductive). 11 35 Instead, it should be noted that health services researchers conducting qualitative studies often adopt all these approaches to coding (sometimes known as hybrid analysis). 3

In practical thematic analysis, codes should be more descriptive than general categorical labels that simply group data with shared characteristics. At a minimum, codes should form a complete (or full) thought. An easy way to conceptualise full thought codes is as complete sentences with subjects and verbs ( table 1 ), although full sentence coding is not always necessary. With full thought codes, researchers think about the data more deeply and capture this insight in the codes. This coding facilitates the entire analytical process and is especially valuable when moving from codes to broader themes. Experienced qualitative researchers often intuitively use full thought or sentence codes, but this practice has not been explicitly articulated as a path to higher quality coding elsewhere in the literature. 6

Example transcript with codes used in practical thematic analysis 36

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Depending on the nature of the data, codes might either fall into flat categories or be arranged hierarchically. Flat categories are most common when the data deal with topics on the same conceptual level. In other words, one topic is not a subset of another topic. By contrast, hierarchical codes are more appropriate for concepts that naturally fall above or below each other. Hierarchical coding can also be a useful form of data management and might be necessary when working with a large or complex dataset. 5 Codes grouped into these categories can also make it easier to naturally transition into generating themes from the initial codes. 5 These decisions between flat versus hierarchical coding are part of the work of the coding team. In both cases, coders should ensure that their code structures are guided by their research questions.

Developing the codebook

A codebook is a shared document that lists code labels and comprehensive descriptions for each code, as well as examples observed within the data. Good code descriptions are precise and specific so that coders can consistently assign the same codes to relevant data or articulate why another coder would do so. Codebook development is iterative and involves input from the entire coding team. However, as those closest to the data, coders must resist undue influence, real or perceived, from other team members with conflicting opinions—it is important to mitigate the risk that more senior researchers, like principal investigators, exert undue influence on the coders’ perspectives.

In practical thematic analysis, coders begin codebook development by independently coding a small portion of the data, such as two to three transcripts or other units of analysis. Coders then individually produce their initial codebooks. This task will require them to reflect on, organise, and clarify codes. The coders then meet to reconcile the draft codebooks, which can often be difficult, as some coders tend to lump several concepts together while others will split them into more specific codes. Discussing disagreements and negotiating consensus are necessary parts of early data analysis. Once the codebook is relatively stable, we recommend soliciting input on the codes from all manuscript authors. Yet, coders must ultimately be empowered to finalise the details so that they are comfortable working with the codebook across a large quantity of data.

Assigning codes to the data

After developing the codebook, coders will use it to assign codes to the remaining data. While the codebook’s overall structure should remain constant, coders might continue to add codes corresponding to any new concepts observed in the data. If new codes are added, coders should review the data they have already coded and determine whether the new codes apply. Qualitative data analysis software can be useful for editing or merging codes.

We recommend that coders periodically compare their code occurrences ( box 5 ), with more frequent check-ins if substantial disagreements occur. In the event of large discrepancies in the codes assigned, coders should revise the codebook to ensure that code descriptions are sufficiently clear and comprehensive to support coding alignment going forward. Because coding is an iterative process, the team can adjust the codebook as needed. 5 28 29

Quantitative coding in context

Researchers should generally avoid reporting code counts in thematic analysis. However, counts can be a useful proxy in maintaining alignment between coders on key concepts. 26 In practice, therefore, researchers should make sure that all coders working on the same piece of data assign the same codes with a similar pattern and that their memoing and overall assessment of the data are aligned. 37 However, the frequency of a code alone is not an indicator of its importance. It is more important that coders agree on the most salient points in the data; reviewing and discussing summary memos can be helpful here. 5

Researchers might disagree on whether or not to calculate and report inter-rater reliability. We note that quantitative tests for agreement, such as kappa statistics or intraclass correlation coefficients, can be distracting and might not provide meaningful results in qualitative analyses. Similarly, Braun and Clarke argue that expecting perfect alignment on coding is inconsistent with the goal of co-constructing meaning. 28 29 Overall consensus on codes’ salience and contributions to themes is the most important factor.

Definition of themes

Themes are meta-constructs that rise above codes and unite the dataset ( box 6 , fig 2 ). They should be clearly evident, repeated throughout the dataset, and relevant to the research questions. 38 While codes are often explicit descriptions of the content in the dataset, themes are usually more conceptual and knit the codes together. 39 Some researchers hypothesise that theme development is loosely described in the literature because qualitative researchers simply intuit themes during the analytical process. 39 In practical thematic analysis, we offer a concrete process that should make developing meaningful themes straightforward.

Themes in context

According to Braun and Clarke, a theme “captures something important about the data in relation to the research question and represents some level of patterned response or meaning within the data set.” 4 Similarly, Braun and Clarke advise against themes as domain summaries. While different approaches can draw out themes from codes, the process begins by identifying patterns. 28 35 Like Braun and Clarke and others, we recommend that researchers consider the salience of certain themes, their prevalence in the dataset, and their keyness (ie, how relevant the themes are to the overarching research questions). 4 12 34

Use of themes in practical thematic analysis

Constructing meaningful themes

After coding all the data, each coder should independently reflect on the team’s summary memos (step 1), the codebook (step 2), and the coded data itself to develop draft themes (step 3). It can be illuminating for coders to review all excerpts associated with each code, so that they derive themes directly from the data. Researchers should remain focused on the research question during this step, so that themes have a clear relation with the overall project aim. Use of qualitative analysis software will make it easy to view each segment of data tagged with each code. Themes might neatly correspond to groups of codes. Or—more likely—they will unite codes and data in unexpected ways. A whiteboard or presentation slides might be helpful to organise, craft, and revise themes. We also provide a template for coproducing themes (supplemental material 3). As with codebook justification, team members will ideally produce individual drafts of the themes that they have identified in the data. They can then discuss these with the group and reach alignment or consensus on the final themes.

The team should ensure that all themes are salient, meaning that they are: supported by the data, relevant to the study objectives, and important. Similar to codes, themes are framed as complete thoughts or sentences, not categories. While codes and themes might appear to be similar to each other, the key distinction is that the themes represent a broader concept. Table 2 shows examples of codes and their corresponding themes from a previously published project that used practical thematic analysis. 36 Identifying three to four key themes that comprise a broader overarching theme is a useful approach. Themes can also have subthemes, if appropriate. 40 41 42 43 44

Example codes with themes in practical thematic analysis 36

Thematic analysis session

After each coder has independently produced draft themes, a carefully selected subset of the manuscript team meets for a thematic analysis session ( table 3 ). The purpose of this session is to discuss and reach alignment or consensus on the final themes. We recommend a session of three to five hours, either in-person or virtually.

Example agenda of thematic analysis session

The composition of the thematic analysis session team is important, as each person’s perspectives will shape the results. This group is usually a small subset of the broader research team, with three to seven individuals. We recommend that primary and senior authors work together to include people with diverse experiences related to the research topic. They should aim for a range of personalities and professional identities, particularly those of clinicians, trainees, patients, and care partners. At a minimum, all coders and primary and senior authors should participate in the thematic analysis session.

The session begins with each coder presenting their draft themes with supporting quotes from the data. 5 Through respectful and collaborative deliberation, the group will develop a shared set of final themes.

One team member facilitates the session. A firm, confident, and consistent facilitation style with good listening skills is critical. For practical reasons, this person is not usually one of the primary coders. Hierarchies in teams cannot be entirely flattened, but acknowledging them and appointing an external facilitator can reduce their impact. The facilitator can ensure that all voices are heard. For example, they might ask for perspectives from patient partners or more junior researchers, and follow up on comments from senior researchers to say, “We have heard your perspective and it is important; we want to make sure all perspectives in the room are equally considered.” Or, “I hear [senior person] is offering [x] idea, I’d like to hear other perspectives in the room.” The role of the facilitator is critical in the thematic analysis session. The facilitator might also privately discuss with more senior researchers, such as principal investigators and senior authors, the importance of being aware of their influence over others and respecting and eliciting the perspectives of more junior researchers, such as patients, care partners, and students.

To our knowledge, this discrete thematic analysis session is a novel contribution of practical thematic analysis. It helps efficiently incorporate diverse perspectives using the session agenda and theme coproduction template (supplemental material 3) and makes the process of constructing themes transparent to the entire research team.

Writing the report

We recommend beginning the results narrative with a summary of all relevant themes emerging from the analysis, followed by a subheading for each theme. Each subsection begins with a brief description of the theme and is illustrated with relevant quotes, which are contextualised and explained. The write-up should not simply be a list, but should contain meaningful analysis and insight from the researchers, including descriptions of how different stakeholders might have experienced a particular situation differently or unexpectedly.

In addition to weaving quotes into the results narrative, quotes can be presented in a table. This strategy is a particularly helpful when submitting to clinical journals with tight word count limitations. Quote tables might also be effective in illustrating areas of agreement and disagreement across stakeholder groups, with columns representing different groups and rows representing each theme or subtheme. Quotes should include an anonymous label for each participant and any relevant characteristics, such as role or gender. The aim is to produce rich descriptions. 5 We recommend against repeating quotations across multiple themes in the report, so as to avoid confusion. The template for coproducing themes (supplemental material 3) allows documentation of quotes supporting each theme, which might also be useful during report writing.

Visual illustrations such as a thematic map or figure of the findings can help communicate themes efficiently. 4 36 42 44 If a figure is not possible, a simple list can suffice. 36 Both must clearly present the main themes with subthemes. Thematic figures can facilitate confirmation that the researchers’ interpretations reflect the study populations’ perspectives (sometimes known as member checking), because authors can invite discussions about the figure and descriptions of findings and supporting quotes. 46 This process can enhance the validity of the results. 46

In supplemental material 4, we provide additional guidance on reporting thematic analysis consistent with COREQ. 18 Commonly used in health services research, COREQ outlines a standardised list of items to be included in qualitative research reports ( box 7 ).

Reporting in context

We note that use of COREQ or any other reporting guidelines does not in itself produce high quality work and should not be used as a substitute for general methodological rigor. Rather, researchers must consider rigor throughout the entire research process. As the issue of how to conceptualise and achieve rigorous qualitative research continues to be debated, 47 48 we encourage researchers to explicitly discuss how they have looked at methodological rigor in their reports. Specifically, we point researchers to Braun and Clarke’s 2021 tool for evaluating thematic analysis manuscripts for publication (“Twenty questions to guide assessment of TA [thematic analysis] research quality”). 16

Avoiding common pitfalls

Awareness of common mistakes can help researchers avoid improper use of qualitative methods. Improper use can, for example, prevent researchers from developing meaningful themes and can risk drawing inappropriate conclusions from the data. Braun and Clarke also warn of poor quality in qualitative research, noting that “coherence and integrity of published research does not always hold.” 16

Weak themes

An important distinction between high and low quality themes is that high quality themes are descriptive and complete thoughts. As such, they often contain subjects and verbs, and can be expressed as full sentences ( table 2 ). Themes that are simply descriptive categories or topics could fail to impart meaningful knowledge beyond categorisation. 16 49 50

Researchers will often move from coding directly to writing up themes, without performing the work of theming or hosting a thematic analysis session. Skipping concerted theming often results in themes that look more like categories than unifying threads across the data.

Unfocused analysis

Because data collection for qualitative research is often semi-structured (eg, interviews, focus groups), not all data will be directly relevant to the research question at hand. To avoid unfocused analysis and a correspondingly unfocused manuscript, we recommend that all team members keep the research objective in front of them at every stage, from reading to coding to theming. During the thematic analysis session, we recommend that the research question be written on a whiteboard so that all team members can refer back to it, and so that the facilitator can ensure that conversations about themes occur in the context of this question. Consistently focusing on the research question can help to ensure that the final report directly answers it, as opposed to the many other interesting insights that might emerge during the qualitative research process. Such insights can be picked up in a secondary analysis if desired.

Inappropriate quantification

Presenting findings quantitatively (eg, “We found 18 instances of participants mentioning safety concerns about the vaccines”) is generally undesirable in practical thematic analysis reporting. 51 Descriptive terms are more appropriate (eg, “participants had substantial concerns about the vaccines,” or “several participants were concerned about this”). This descriptive presentation is critical because qualitative data might not be consistently elicited across participants, meaning that some individuals might share certain information while others do not, simply based on how conversations evolve. Additionally, qualitative research does not aim to draw inferences outside its specific sample. Emphasising numbers in thematic analysis can lead to readers incorrectly generalising the findings. Although peer reviewers unfamiliar with thematic analysis often request this type of quantification, practitioners of practical thematic analysis can confidently defend their decision to avoid it. If quantification is methodologically important, we recommend simultaneously conducting a survey or incorporating standardised interview techniques into the interview guide. 11

Neglecting group dynamics

Researchers should concertedly consider group dynamics in the research team. Particular attention should be paid to power relations and the personality of team members, which can include aspects such as who most often speaks, who defines concepts, and who resolves disagreements that might arise within the group. 52

The perspectives of patient and care partners are particularly important to cultivate. Ideally, patient partners are meaningfully embedded in studies from start to finish, not just for practical thematic analysis. 53 Meaningful engagement can build trust, which makes it easier for patient partners to ask questions, request clarification, and share their perspectives. Professional team members should actively encourage patient partners by emphasising that their expertise is critically important and valued. Noting when a patient partner might be best positioned to offer their perspective can be particularly powerful.

Insufficient time allocation

Researchers must allocate enough time to complete thematic analysis. Working with qualitative data takes time, especially because it is often not a linear process. As the strength of thematic analysis lies in its ability to make use of the rich details and complexities of the data, we recommend careful planning for the time required to read and code each document.

Estimating the necessary time can be challenging. For step 1 (reading), researchers can roughly calculate the time required based on the time needed to read and reflect on one piece of data. For step 2 (coding), the total amount of time needed can be extrapolated from the time needed to code one document during codebook development. We also recommend three to five hours for the thematic analysis session itself, although coders will need to independently develop their draft themes beforehand. Although the time required for practical thematic analysis is variable, teams should be able to estimate their own required effort with these guidelines.

Practical thematic analysis builds on the foundational work of Braun and Clarke. 4 16 We have reframed their six phase process into three condensed steps of reading, coding, and theming. While we have maintained important elements of Braun and Clarke’s reflexive thematic analysis, we believe that practical thematic analysis is conceptually simpler and easier to teach to less experienced researchers and non-researcher stakeholders. For teams with different levels of familiarity with qualitative methods, this approach presents a clear roadmap to the reading, coding, and theming of qualitative data. Our practical thematic analysis approach promotes efficient learning by doing—experiential learning. 12 29 Practical thematic analysis avoids the risk of relying on complex descriptions of methods and theory and places more emphasis on obtaining meaningful insights from those close to real world clinical environments. Although practical thematic analysis can be used to perform intensive theory based analyses, it lends itself more readily to accelerated, pragmatic approaches.

Strengths and limitations

Our approach is designed to smooth the qualitative analysis process and yield high quality themes. Yet, researchers should note that poorly performed analyses will still produce low quality results. Practical thematic analysis is a qualitative analytical approach; it does not look at study design, data collection, or other important elements of qualitative research. It also might not be the right choice for every qualitative research project. We recommend it for applied health services research questions, where diverse perspectives and simplicity might be valuable.

We also urge researchers to improve internal validity through triangulation methods, such as member checking (supplemental material 1). 46 Member checking could include soliciting input on high level themes, theme definitions, and quotations from participants. This approach might increase rigor.

Implications

We hope that by providing clear and simple instructions for practical thematic analysis, a broader range of researchers will be more inclined to use these methods. Increased transparency and familiarity with qualitative approaches can enhance researchers’ ability to both interpret qualitative studies and offer up new findings themselves. In addition, it can have usefulness in training and reporting. A major strength of this approach is to facilitate meaningful inclusion of patient and care partner perspectives, because their lived experiences can be particularly valuable in data interpretation and the resulting findings. 11 30 As clinicians are especially pressed for time, they might also appreciate a practical set of instructions that can be immediately used to leverage their insights and access to patients and clinical settings, and increase the impact of qualitative research through timely results. 8

Practical thematic analysis is a simplified approach to performing thematic analysis in health services research, a field where the experiences of patients, care partners, and clinicians are of inherent interest. We hope that it will be accessible to those individuals new to qualitative methods, including patients, care partners, clinicians, and other health services researchers. We intend to empower multidisciplinary research teams to explore unanswered questions and make new, important, and rigorous contributions to our understanding of important clinical and health systems research.

Acknowledgments

All members of the Coproduction Laboratory provided input that shaped this manuscript during laboratory meetings. We acknowledge advice from Elizabeth Carpenter-Song, an expert in qualitative methods.

Coproduction Laboratory group contributors: Stephanie C Acquilano ( http://orcid.org/0000-0002-1215-5531 ), Julie Doherty ( http://orcid.org/0000-0002-5279-6536 ), Rachel C Forcino ( http://orcid.org/0000-0001-9938-4830 ), Tina Foster ( http://orcid.org/0000-0001-6239-4031 ), Megan Holthoff, Christopher R Jacobs ( http://orcid.org/0000-0001-5324-8657 ), Lisa C Johnson ( http://orcid.org/0000-0001-7448-4931 ), Elaine T Kiriakopoulos, Kathryn Kirkland ( http://orcid.org/0000-0002-9851-926X ), Meredith A MacMartin ( http://orcid.org/0000-0002-6614-6091 ), Emily A Morgan, Eugene Nelson, Elizabeth O’Donnell, Brant Oliver ( http://orcid.org/0000-0002-7399-622X ), Danielle Schubbe ( http://orcid.org/0000-0002-9858-1805 ), Gabrielle Stevens ( http://orcid.org/0000-0001-9001-178X ), Rachael P Thomeer ( http://orcid.org/0000-0002-5974-3840 ).

Contributors: Practical thematic analysis, an approach designed for multidisciplinary health services teams new to qualitative research, was based on CHS’s experiences teaching thematic analysis to clinical teams and students. We have drawn heavily from qualitative methods literature. CHS is the guarantor of the article. CHS, AS, CvP, AMK, JRK, and JAP contributed to drafting the manuscript. AS, JG, CMM, JAP, and RWY provided feedback on their experiences using practical thematic analysis. CvP, LCL, SLB, AVC, GE, and JKL advised on qualitative methods in health services research, given extensive experience. All authors meaningfully edited the manuscript content, including AVC and RKS. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.

Funding: This manuscript did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Competing interests: All authors have completed the ICMJE uniform disclosure form at https://www.icmje.org/disclosure-of-interest/ and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.

Provenance and peer review: Not commissioned; externally peer reviewed.

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EDITORIAL article

Editorial: qualitative research applied to public health: new topics and insight.

• 1 Department of Nursing, Physiotherapy and Medicine, University of Almería, Almería, Spain
• 2 Ciencias de la salud, Universidad Autónoma de Chile, Santiago, Chile
• 3 Department of Physiotherapy, University of Alcalá, Alcalá de Henares, Madrid, Spain

Editorial on the Research Topic Qualitative research applied to public health: new topics and insight

The concept of public health refers to the science and art of preventing diseases and promoting, protecting, and improving health ( 1 ). The essential functions of public health include monitoring the health of the population, keeping watch on risk factors, guaranteeing access to healthcare services, and promoting research, among others. Although there have been many advances over the years in vaccine development, emergency response, the promotion of sexual and reproductive health, and access to medicine, a single solution has yet to be found which meets the needs of the population in different health systems ( 2 ). Classical epidemiology studies the phenomena of health and disease in the community, considering the population as a group of individuals without considering the many individual and social factors. Qualitative methodology contributes to the study of the determinants of health and disease, healthcare planning, the detection of needs, and the evaluation of interventions from the experiences of individuals and societies ( 3 ). In the face of a unitary, measurable, and external reality to the cognoscente, there is a reality which each person creates within the framework of their culture, tradition, and history. Therefore, the implementation of a dual research perspective in public health must involve quantitative approaches that address the generality of the study problem, but also qualitative ones, which include multiple layers of diversity and the range of lived experiences ( 4 , 5 ). As reflected in our Research Topic, the experiences of patients, professionals, and families are key to understanding public health problems.

Research does not occur isolated from the interests and powers of the academic, scientific, personal, or theoretical field ( 6 ). Together with the technical interest in knowing the reality in order to transform it ( Zang et al. ), practical interest points to the intersubjective understanding of the health-disease process, and emancipatory interest points to actively taking charge of this process. In line with studying the experiences of patients, Wang et al. found specific action plans, medical feedback, and periodic records as facilitators of adherence to lifestyle prescriptions among patients with non-alcoholic fatty liver disease. Bailey-Davis et al. found that obese patients undergoing treatment in primary care expect personalized treatment options and referrals to effective community programmes. Campaña et al. , suggests that being a woman with a low educational background coming from the public health system outside of the capital could contribute to barriers for effective healthcare for lung cancer in Chile . Gabay , proposes that positive experiences in the relationship between the patient and nurse instill hope for being discharged in intensive care units. Experiences of young generations on the social problems of parental care are addressed by Peng et al. , emphasizing that governments should guarantee that adult children receive help to balance their work, life, and parental care responsibilities. Chen et al. found that major epidemics accelerate and promote major social changes, technological development, political, and economic measures. Experiences of members of public health associations in tracking and treating COVID-19 cases in migrants and refugees are studied by Dawson-Hahn et al. . Qualitative research also studies the experiences of evaluating public health intervention programmes, such as the case of Thoumi et al. when addressing health inequalities in Latinx communities in North Carolina; or the perspective of professionals on the barriers, facilitators, and elements for improving the +AGIL Barcelona programme ( Canet-Vélez and Solis-Navarro ). Teaching-learning experiences are also addressed by qualitative research in the different stages. In undergraduate studies, Zhu et al. suggests that a synthesis of knowledge and practice is needed to improve the professional skills of undergraduate nursing students. In postgraduate studies, Sánchez-Muñoz et al. found that the residency period is important in the training and acquisition of skills as a Family and Community Nursing Specialist Nurse in Spain, and improvements are needed to guarantee quality training and more visibility. Myroniuk et al. recommends involving health sciences students in public health programmes aimed at the community. Experiences of public healthcare professionals have also been studied in our Research Topic. Canet-Vélez et al. suggests that legal regulation has provided a security framework for nurse prescribing. However, strategies are needed for its comprehensive development, public acceptance and to give visibility to nurse prescribing at an international level. Along with practical interest, emancipatory interest is key in qualitative research. Researchers analyze public health problems through self-reflection, seeking social transformation, and participant involvement for change. This positioning generates empowerment, leading patients to participate in decision-making and take charge of their own health. Along these lines, Röger-Offergeld et al. studied how the participation of women as co-researchers leads to their social empowerment beyond the results of the research itself. Melhem et al. found that health literacy and empowering survivors of colorectal cancer promotes a more positive experience when interacting with healthcare systems.

Gadamer and Habermas criticize the excessively objectified and decontextualized nature of positivism and instrumental reason in 20 th century philosophy, recognizing the role of the subject in the creation and acquisition of knowledge and understanding ( 7 ). Qualitative research is increasingly common in contemporary health sciences, helping to incorporate the perspectives of the participants (patients, family, professionals, managers, etc.) in the design and development of the research, treating them as equals. Qualitative public health researchers could strengthen dialogue with conventional research paradigms by fostering an understanding of interdependencies ( 8 ). Investigating social determinants and health inequities requires epidemiologists and public health researchers to expand theories, research methodologies, and involve all participants ( 9 , 10 ). The perspective of those who use public health services differs from the professional, clinical or academic perspective ( 11 ). Qualitative research enables an understanding of how people interpret and respond to public health policies, thus weighing the sources of academic and experiential knowledge ( 12 ). The main strength of qualitative research is the in-depth and rich descriptions of data that is studied ( 13 ). For this reason, it is used in global public health when the problems cannot be analyzed from traditional quantitative approaches, when “silenced voices” are not heard, or when sociocultural contexts are key in decision making and problem solving ( 14 ). This contribution, which complements epidemiological research, is key for all knowledge disciplines that develop research on global public health and on all communities in particular.

Author contributions

JG-M: Writing—review & editing. MR-F: Writing—review & editing. IF-M: Writing—review & editing. SN-N: Writing—review & editing. IS: Writing—review & editing.

The author(s) declare that no financial support was received for the research, authorship, and/or publication of this article.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

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.

1. World Health Organization (WHO). 21st Century Health Challenges. Can the essential public health functions make a difference? Discussion Paper. (2021). Available online at: https://iris.who.int/bitstream/handle/10665/351510/9789240038929-eng.pdf?sequence=1 (accessed January 31, 2024).

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3. Sola CF, Molina JG, Padilla JM. Comprender para cuidar: avances en investigación cualitativa en Ciencias de la Salud [in Spanish]. Almería: Servicio de publicaciones Universidad de Almería/Universidad Autónoma de Chile. (2020).

4. Rolfe DE, Ramsden VR, Banner D, Graham ID. Using qualitative health research methods to improve patient and public involvement and engagement in research. Res Involv Engagem. (2018) 4:49. doi: 10.1186/s40900-018-0129-8

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5. Hesse-Biber S. Taking public action on private troubles: the power of hybrid methodology mixed methods research in the public sphere. Qual Inq. (2020) 26:153–64. doi: 10.1177/1077800419857755

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8. Papoutsi C, Shaw J, Paparini S, Shaw S. We need to talk about complexity in health research: findings from a focused ethnography. Qual Health Res. (2021) 31:338–48. doi: 10.1177/1049732320968779

9. Fisher MP, Hamer MK. Qualitative methods in health policy and systems research: a framework for study planning. Qual Health Res. (2020) 30:1899–912. doi: 10.1177/1049732320921143

10. Maxwell JA. The value of qualitative inquiry for public policy. Qual Inq . (2020) 26:177–186. doi: 10.1177/1077800419857093

11. Maguire K, Britten N. 'You're there because you are unprofessional': patient and public involvement as liminal knowledge spaces. Sociol Health Illn. (2018) 40:463–77. doi: 10.1111/1467-9566.12655

12. Roura M. The social ecology of power in participatory health research. Qual Health Res. (2021) 31:778–88. doi: 10.1177/1049732320979187

13. Renjith V, Yesodharan R, Noronha JA, Ladd E, George A. Qualitative methods in health care research. Int J Prev Med . (2021) 24:12–20. doi: 10.4103/ijpvm.IJPVM_321_19

14. Liamputtong P, Rice ZS. Qualitative research inquiry and global public health. In Liamputtong, P. editor Handbook of social sciences and global public health , Cham: Springer (2023). doi: 10.1007/978-3-031-25110-8

Keywords: public health, qualitative research, experiences, nursing research, health sciences research

Citation: Granero-Molina J, Ruiz-Fernández MD, Fernández-Medina IM, Núñez-Nagy S and Suazo Galdames IC (2024) Editorial: Qualitative research applied to public health: new topics and insight. Front. Public Health 12:1371938. doi: 10.3389/fpubh.2024.1371938

Received: 17 January 2024; Accepted: 26 January 2024; Published: 06 February 2024.

Edited and reviewed by: Christiane Stock , Corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Germany

Copyright © 2024 Granero-Molina, Ruiz-Fernández, Fernández-Medina, Núñez-Nagy and Suazo Galdames. 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) and the copyright owner(s) 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: José Granero-Molina, jgranero@ual.es

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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Master of Public Health

Public health research methods.

Advancing the evidence base on ways to promote health equity requires a solid foundation of research methods skills. Finding answers to complex questions on how to improve public health requires carefully designed research and evaluation studies with results that can be used to shape policy, programs, and interventions. Employers in government, academia, nongovernmental organizations, and private industry across the globe seek candidates with strong skills in data collection, analysis, and interpretation; research and evaluation design; and working in diverse, complex contexts. 

The Certificate in Public Health Research Methods (PHRM) provides students from various disciplines with the critical skills they need to design, conduct, and analyze data from health studies, particularly those that have direct implications for practice, programs, and policy. This rigorous certificate provides students with a well-rounded foundation of skills gleaned from coursework and co-curricular programming that emphasizes career development and application of methods in practice.  

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Public Health Research Methods is open to Columbia MPH students in the following departments:

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• Environmental Health Sciences
• Epidemiology
• Health Policy and Management
• Population and Family Health
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Given the required classes, the program is best suited to students enrolled in Epidemiology , Population and Family Health or Sociomedical Sciences .

The Competencies for this Certificate are as follows:

• Generate and test public health research and evaluation hypotheses using quantitative and qualitative research methodologies.
• Select study designs and sampling and data collection strategies best suited to a given research or evaluation question, which are maximally rigorous, and feasible given the context and practical constraints of the setting.
• Critically evaluate the internal and external validity of quantitative and qualitative research methods and/or findings
• Execute qualitative and quantitative data analysis plans that will answer the research and evaluation question.
• Communicate accurately and effectively to a range of audiences about public health research

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Evaluation of health programs.

Program evaluation is an essential competence in public health. Across all areas of public health, stakeholders pose questions about effectiveness and impact of programs and interventions. This course will examine principles, methods and practices of evaluating health programs. A range of evaluation research designs and methods will be introduced and strategies to address challenges in real world program settings will be emphasized. The course will incorporate examples of evaluations of actual health programs and opportunities to learn through professional program evaluation experiences of the instructor. The combination of lectures, textbook readings, examples, discussions, in-class exercises, and an extensive applied group assignment to design an evaluation for a real program will help students gain evaluation skills and an appreciation for the art and science of program evaluation. The goal is for students to learn competencies required of an entry-level program evaluator, including design and implementation of evaluation studies and interpretation and communication of evaluation findings. 

Quantitative Data Analysis

In this course students will learn to develop and implement a quantitative data analysis plan and to interpret the results of quantitative analyses using datasets from actual evaluation studies. The early phase of the course will focus on necessary but essential pre-analysis tasks often overlooked in the research training process. These include: identifying and resolving dirty data including logical inconsistencies, and conducting simple and complex data transformations. The second half of the course focuses on conducting bivariate and multivariable statistical tests. This is an applied course, emphasizing skill building through hands-on work using statistical analysis software in each class session.  

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As a basic science of public health, epidemiology is responsible for the identification of causes of disease that can guide the development of rational public health policies. The accuracy of the information provided by epidemiologic studies is therefore of central concern. Epidemiologic methods are the tools we use to make valid causal arguments. This course builds upon the methods introduced in P6400 Principles of Epidemiology or the Quant core module. The primary objective is to provide students with the basic tools necessary to design, carry out, and interpret the results from observational epidemiologic studies. 

Qualitative Data Analysis 

The collection of qualitative data is widespread and growing in public health research. However, the credibility and quality of qualitative research rests upon utilizing  systemic rigor in collecting, recording, organizing, categorizing, and interpreting qualitative findings. Focusing in particular on focus group data, this course introduces a variety of approaches to qualitative data analysis, with a focus on applying thematic or framework analysis, and facilitates their application and manuscript development through hands-on group work and work outside of class. 

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• Health Promotion Research and Practice

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Quantitative and Qualitative Methods for Public Health

This course focuses on quantitative methods, which are designed to precisely estimate population parameters and measure the association between biologic, social, environmental, and behavioral factors and health conditions in order to define the determinants of health and disease and, ultimately, to understand causal pathways.

However, it is important to acknowledge the importance of qualitative methods which provide a means of understanding public health problems in greater depth by providing contextual information regarding a population's beliefs, opinions, norms, and behaviors. This type of information is difficult to capture using traditional quantitative methods, yet it can be vitally important for understanding the "why" for many health problems and also the "how" in terms of how to achieve improvements in health outcomes.

These two approaches might be thought of as the positivist and the constructivist approaches. In positivist research data are more easily quantified, but they are disconnected from the context in which they occur. For example, people of lower socioeconomic status are more likely to smoke tobacco, but the data collected does not indicate why. However, with a constructivist approach, the exposures that people are subjected to (or choose) are better understood in the context of their personal circumstances and the significance that people attribute to things in their environment.

Qualitative methods provide a means of understanding health problems and potential barriers and solutions in greater detail, and they provide an opportunity to understand the "how" and "why" and to identify overlooked issues and themes.

The table below, from the introductory course on fundamentals of public health, highlights some of the major differences between quantitative and qualitative research.

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Content ©2020. All Rights Reserved. Date last modified: September 10, 2020. Wayne W. LaMorte, MD, PhD, MPH

Quantitative and Qualitative Data Analysis Methods in Public Health Research

Subject area, catalog number, course title, department(s), description, typically offered, academic career, liberal arts, minimum units, maximum units, academic progress units, repeat for credit, course schedule.

• Open access
• Published: 23 September 2023

Educational interventions targeting pregnant women to optimise the use of caesarean section: What are the essential elements? A qualitative comparative analysis

• Rana Islamiah Zahroh   ORCID: orcid.org/0000-0001-7831-2336 1 ,
• Katy Sutcliffe   ORCID: orcid.org/0000-0002-5469-8649 2 ,
• Dylan Kneale   ORCID: orcid.org/0000-0002-7016-978X 2 ,
• Martha Vazquez Corona   ORCID: orcid.org/0000-0003-2061-9540 1 ,
• Ana Pilar Betrán   ORCID: orcid.org/0000-0002-5631-5883 3 ,
• Newton Opiyo   ORCID: orcid.org/0000-0003-2709-3609 3 ,
• Caroline S. E. Homer   ORCID: orcid.org/0000-0002-7454-3011 4 &
• Meghan A. Bohren   ORCID: orcid.org/0000-0002-4179-4682 1  

BMC Public Health volume  23 , Article number:  1851 ( 2023 ) Cite this article

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Caesarean section (CS) rates are increasing globally, posing risks to women and babies. To reduce CS, educational interventions targeting pregnant women have been implemented globally, however, their effectiveness is varied. To optimise benefits of these interventions, it is important to understand which intervention components influence success. In this study, we aimed to identify essential intervention components that lead to successful implementation of interventions focusing on pregnant women to optimise CS use.

We re-analysed existing systematic reviews that were used to develop and update WHO guidelines on non-clinical interventions to optimise CS. To identify if certain combinations of intervention components (e.g., how the intervention was delivered, and contextual characteristics) are associated with successful implementation, we conducted a Qualitative Comparative Analysis (QCA). We defined successful interventions as interventions that were able to reduce CS rates. We included 36 papers, comprising 17 CS intervention studies and an additional 19 sibling studies (e.g., secondary analyses, process evaluations) reporting on these interventions to identify intervention components. We conducted QCA in six stages: 1) Identifying conditions and calibrating the data; 2) Constructing truth tables, 3) Checking quality of truth tables; 4) Identifying parsimonious configurations through Boolean minimization; 5) Checking quality of the solution; 6) Interpretation of solutions. We used existing published qualitative evidence synthesis to develop potential theories driving intervention success.

We found successful interventions were those that leveraged social or peer support through group-based intervention delivery, provided communication materials to women, encouraged emotional support by partner or family participation, and gave women opportunities to interact with health providers. Unsuccessful interventions were characterised by the absence of at least two of these components.

We identified four key essential intervention components which can lead to successful interventions targeting women to reduce CS. These four components are 1) group-based delivery, 2) provision of IEC materials, 3) partner or family member involvement, and 4) opportunity for women to interact with health providers. Maternal health services and hospitals aiming to better prepare women for vaginal birth and reduce CS can consider including the identified components to optimise health and well-being benefits for the woman and baby.

Peer Review reports

Introduction

In recent years, caesarean section (CS) rates have increased globally [ 1 , 2 , 3 , 4 ]. CS can be a life-saving procedure when vaginal birth is not possible; however, it comes with higher risks both in the short- and long-term for women and babies [ 1 , 5 ]. Women with CS have increased risks of surgical complications, complications in future pregnancies, subfertility, bowel obstruction, and chronic pain [ 5 , 6 , 7 , 8 ]. Similarly, babies born through CS have increased risks of hypoglycaemia, respiratory problems, allergies and altered immunity [ 9 , 10 , 11 ]. At a population level, CS rates exceeding 15% are unlikely to reduce mortality rates [ 1 , 12 ]. Despite these risks, an analysis across 154 countries reported a global average CS rate of 21.1% in 2018, projected to increase to 28.5% by 2030 [ 3 ].

There are many reasons for the increasing CS rates, and these vary between and within countries. Increasingly, non-clinical factors across different societal dimensions and stakeholders (e.g. women and communities, health providers, and health systems) are contributing to this increase [ 13 , 14 , 15 , 16 , 17 ]. Women may prefer CS over vaginal birth due to fear of labour or vaginal birth, previous negative experience of childbirth, perceived increased risks of vaginal birth, beliefs about an auspicious or convenient day of birth, or beliefs that caesarean section is safer, quick, and painless compared to vaginal birth [ 13 , 14 , 15 ].

Interventions targeting pregnant women to reduce CS have been implemented globally. A Cochrane intervention review synthesized evidence from non-clinical interventions targeting pregnant women and family, providers, and health systems to reduce unnecessary CS, and identified 15 interventions targeting women [ 18 ]. Interventions targeting women primarily focused on improving women’s knowledge around birth, improving women’s ability to cope during labour, and decreasing women’s stress related to labour through childbirth education, and decision aids for women with previous CS [ 18 ]. These types of interventions aim to reduce the concerns of pregnant women and their partners around childbirth, and prepare them for vaginal birth.

The effectiveness of interventions targeting women in reducing CS is mixed [ 18 , 19 ]. Plausible explanations for this limited success include the multifactorial nature of the factors driving increases in CS, as well as the contextual characteristics of the interventions, which may include the study environment, participant characteristics, intensity of exposure to the intervention and method of implementation. Understanding which intervention components are essential influencers of the success of the interventions is conducive to optimising benefits. This study used a Qualitative Comparative Analysis (QCA) approach to re-analyse evidence from existing systematic reviews to identify essential intervention components that lead to the successful implementation of non-clinical interventions focusing on pregnant women to optimise the use of CS. Updating and re-analysing existing systematic reviews using new analytical frameworks may help to explore the heterogeneity in effects and ascertain why some studies appear to be effective while others are not.

Data sources, case selection, and defining outcomes

Developing a logic model.

We developed a logic model to guide our understanding of different pathways and intervention components potentially leading to successful implementation (Additional file 1 ). The logic model was developed based on published qualitative evidence syntheses and systematic reviews [ 18 , 20 , 21 , 22 , 23 , 24 ]. The logic model depicts the desired outcome of reduced CS rates in low-risk women (at the time of admission for birth, these women are typically represented by Robson groups 1–4 [ 25 ] and are women with term, cephalic, singleton pregnancies without a previous CS) and works backwards to understand what inputs and processes are needed to achieve the desired outcome. Our logic model shows multiple pathways to success and highlights the interactions between different levels of factors (women, providers, societal, health system) (Additional file 1 ). Based on the logic model, we have separated our QCA into two clusters of interventions: 1) interventions targeting women, and 2) interventions targeting health providers. The results of analysis on interventions targeting health providers have been published elsewhere [ 26 ]. The logic model was also used to inform the potential important components that influence success.

Identifying data sources and selecting cases

We re-analysed the systematic reviews which were used to inform the development and update of World Health Organization (WHO) guidelines. In 2018, WHO issued global guidance on non-clinical interventions to reduce unnecessary CS, with interventions designed to target three different levels or stakeholders: women, health providers, and health systems [ 27 ]. As part of the guideline recommendations, a series of systematic reviews about CS interventions were conducted: 1) a Cochrane intervention review of effectiveness by Chen et al. (2018) [ 18 ] and 2) three qualitative evidence syntheses exploring key stakeholder perspectives and experiences of interventions focusing on women and communities, health professionals, and health organisations, facilities and systems by Kingdon et al. (2018) [ 20 , 21 , 22 ]. Later on, Opiyo and colleagues (2020) published a scoping review of financial and regulatory interventions to optimise the use of CS [ 23 ].

Therefore, the primary data sources of this QCA are the intervention studies included in Chen et al. (2018) [ 18 ] and Opiyo et al. (2020) [ 23 ]. We used these two systematic reviews as not only they are comprehensive, but they were also used to inform the WHO guidelines development. A single intervention study is referred to as a “case”. Eligible cases were intervention studies focusing on pregnant women and aimed to reduce or optimise the use of CS. No restrictions on study design were imposed in the QCA. Therefore, we also assessed the eligibility of intervention studies excluded from Chen et al. (2018) [ 18 ] and Opiyo et al. (2020) [ 23 ] due to ineligible study designs (such as cohort study, uncontrolled before and after study, interrupted time series with fewer than three data points), as these studies could potentially show other pathways to successful implementation. We complemented these intervention studies with additional intervention studies published since the last review updates in 2018 and 2020, to include intervention studies that are likely to meet the review inclusion criteria for future review updates. No further search was conducted as QCA is suitable for medium-N cases, approximately around 10–50 cases, and inclusion of more studies may threaten study rigour [ 28 ].

Once eligible studies were selected, we searched for their ‘sibling studies’. Sibling studies are studies linked to the included intervention studies, such as formative research or process evaluations which may have been published separately. Sibling studies can provide valuable additional information about study context, intervention components, and implementation outcomes (e.g. acceptability, fidelity, adherence, dosage), which may not be well described in a single article about intervention effectiveness. We searched for sibling studies using the following steps: 1) reference list search of the intervention studies included in Chen et al. (2018) [ 18 ] and Opiyo et al. (2020) [ 23 ], 2) reference list search of the qualitative studies included in Kingdon et al. (2018) reviews [ 20 , 21 , 22 ]; and 3) forward reference search of the intervention studies (through “Cited by” function) in Scopus and Web of Science. Sibling studies were included if they included any information on intervention components or implementation outcomes, regardless of the methodology used. One author conducted the study screening independently (RIZ), and 10% of the screening was double-checked by a second author (MAB). Disagreements during screening were discussed until consensus, and with the rest of the author team if needed.

Defining outcomes

We assessed all outcomes related to the mode of birth in the studies included in the Chen et al. (2018) [ 18 ] and Opiyo et al. (2020) [ 23 ] reviews. Based on the consistency of outcome reporting, we selected “overall CS rate” as the primary outcome of interest due to its presence across studies. We planned to rank the rate ratio across these studies to select the 10 most successful and unsuccessful intervention studies. However, due to heterogeneity in how CS outcomes were reported across studies (e.g. odds ratios, rate ratios, percentages across different intervention stages), the final categorisation of successful or unsuccessful interventions is based on whether the CS rate decreased, based on the precision of the confidence interval or p-value (successful, coded as 1), or CS rate increased or did not change (unsuccessful, coded as 0).

Assessing risk of bias in intervention studies

All intervention studies eligible for inclusion were assessed for risk of bias. All studies included in Chen et al. (2018) and Opiyo et al. (2020) already had risk of bias assessed and reported [ 18 , 23 ], and we used these assessments. Additional intervention studies outside the included studies on these reviews were assessed using the same tools depending on the type of evidence (two randomized controlled trials and one uncontrolled before and after study), and details of the risk of bias assessment results can be found in Additional file 2 . We excluded studies with a high risk of bias to ensure that the analysis was based on high-quality studies and to enhance the ability of researchers to develop deep case knowledge by limiting the overall number of studies.

Qualitative comparative analysis (QCA)

QCA was first developed and used in political sciences and has since been extended to systematic reviews of complex health interventions [ 24 , 29 , 30 , 31 ]. Despite the term “qualitative”, QCA is not a typical qualitative analysis, and is often conceptualised as a methodology that bridges qualitative and quantitative methodologies based on its process, data used and theoretical standpoint [ 24 ]. Here, QCA is used to identify if certain configurations or combinations of intervention components (e.g. participants, types of interventions, contextual characteristics, and intervention delivery) are associated with the desired outcome [ 31 ]. These intervention components are referred to as “conditions” in the QCA methodology. Whilst statistical synthesis methods may be used to examine intervention heterogeneity in systematic reviews, such as meta-regression, QCA is a particularly suitable method to understand complex interventions like those aiming to optimise CS, as it allows for multiple overlapping pathways to causality [ 31 ]. Moreover, QCA allows the exploration of different combinations of conditions, rather than relying on a single condition leading to intervention effectiveness [ 31 ]. Although meta-regression allows for the assessment of multiple conditions, a sufficient number of studies may not be available to conduct the analysis. In complex interventions, such as interventions aiming to optimise the use of CS, single condition or standard meta-analysis may be less likely to yield usable and nuanced information about what intervention components are more or less likely to yield success [ 31 ].

QCA uses ‘set theory’ to systematically compare characteristics of the cases (e.g. intervention in the case of systematic reviews) in relation to the outcomes [ 31 , 32 ]. This means QCA compares the characteristics of the successful ‘cases’ (e.g. interventions that are effective) to those unsuccessful ‘cases’ (e.g. interventions that are not effective). The comparison is conducted using a scoring system based on ‘set membership’ [ 31 , 32 ]. In this scoring, conditions and outcomes are coded based on the extent to which a certain feature is present or absent to form set membership scores [ 31 , 32 ]. There are two scoring systems in QCA: 1) crisp set QCA (csQCA) and 2) fuzzy set QCA (fsQCA). csQCA assigns binary scores of 0 (“fully out” to set membership for cases with certain conditions) and 1 (“fully in” to set membership for cases with certain conditions), while fsQCA assigns ordinal scoring of conditions and outcomes, permitting partial membership scores between 0 and 1 [ 31 , 32 ]. For example, using fsQCA we may assign a five-level scoring system (0, 0.33, 0.5, 0.67, 1), where 0.33 would indicate “more out” than “in” to the set of membership, and 0.67 would indicate “more in” than “out”, and 0.5 would indicate ambiguity (i.e. a lack of information about whether a case was “in” or “out”) [ 31 , 32 ]. In our analysis, we used the combination of both csQCA and fsQCA to calibrate our data. This approach was necessary because some conditions were better suited to binary options using csQCA, while others were more complex, depending on the distribution of cases, and required fsQCA to capture the necessary information. In our final analysis, however, the conditions run on the final analysis were all using the csQCA scoring system.

Two relationships can be investigated using QCA [ 24 , 31 ]. First, if all instances of successful interventions share the same condition(s), this suggests these features are ‘necessary’ to trigger successful outcomes [ 24 , 31 ]. Second, if all instances of a particular condition are associated with successful interventions, this suggests these conditions are ‘sufficient’ for triggering successful outcomes [ 24 , 31 ]. In this QCA, we were interested to explore the relationship of sufficiency: that is, to assess the various combinations of intervention components that can trigger successful outcomes. We were interested in sufficiency because our logic model (explained further below) highlighted the multiple pathways that can lead to a CS and different interventions that may optimise the use of CS along those pathways, which suggested that it would be unlikely for all successful interventions to share the same conditions. We calculated the degree of sufficiency using consistency measures, which evaluate the frequency in which conditions are present when the desired outcome is achieved [ 31 , 32 ]. The conditions with a consistency score of at least 0.8 were considered sufficient in triggering successful interventions [ 31 , 32 ]. At present, there is no tool available for reporting guidelines in the re-analysis of systematic reviews using QCA, however, CARU-QCA is currently being developed for this purpose [ 33 ]. QCA was conducted using R programming software with a package developed by Thiem & Duşa (2013) and QCA with R guidebook [ 32 ]. QCA was conducted in six stages based on Thomas et al. (2014) [ 31 ] and explained below.

QCA stage 1: Identifying conditions, building data tables and calibration

We used a deductive and inductive process to determine the potential conditions (intervention components) that may trigger successful implementation. Conditions were first derived deductively using the developed logic model (Additional file 1 ). We then added additional conditions inductively using Intervention Component Analysis from the intervention studies [ 34 ], and qualitative evidence (“view”) synthesis [ 22 ] using Melendez-Torres’s (2018) approach [ 35 ]. Intervention Component Analysis is a methodological approach that examines factors affecting implementation through reflections from the trialist, which is typically presented in the discussion section of a published trial [ 34 ]. Examples of conditions identified in the Intervention Component Analysis include using an individualised approach, interaction with health providers, policies that encourage CS and acknowledgement of women’s previous birth experiences. After consolidating or merging similar conditions, a total of 52 conditions were selected and extracted from each included intervention and analysed in this QCA (Details of conditions and definitions generated for this study can be found in Additional files 3 and 4 ). We adapted the coding framework from Harris et al. (2019) [ 24 ] by adapting coding rules and six domains that were used, to organize the 52 conditions and make more sense of the data. These six domains are broadly classified as 1) context and participants, 2) intervention design, 3) program content, 4) method of engagement, 5) health system factors, and 6) process outcomes.

One author (RIZ) extracted data relevant to the conditions for each included study into a data table, which was then double-reviewed by two other authors (MVC, MAB). The data table is a matrix in which each case is represented in a row, and columns are used to represent the conditions. Following data extraction, calibration rules using either csQCA or fsQCA (e.g. group-based intervention delivery condition: yes = 1 (present), no = 0 (absent)) were developed through consultation with all authors. We developed a table listing the conditions and rules of coding the conditions, by either direct or transformational assignment of quantitative and qualitative data [ 24 , 32 ] (Additional file 3 depicts the calibration rules). The data tables were then calibrated by applying scores, to explore the extent to which interventions have ‘set membership’ with the outcome or conditions of interest. During this iterative process, the calibration criteria were explicitly defined, emerging from the literature and the cases themselves. It is important to note, that maximum ambiguity is typically scored as 0.5 in QCA, however, we decided it would be more appropriate to assume that if a condition was not reported it was unlikely to be a feature of the intervention, so we treated not reported as “absence” that is we coded it 0.

QCA stage 2: Constructing truth tables

Truth tables are an analytical tool used in QCA to analyse associations between configurations of conditions and outcomes. Whereas the data table represents individual cases (rows) and individual conditions (columns) – the truth table synthesises this data to examine configurations – with each row representing a different configuration of the conditions. The columns indicate a) which conditions are featured in the configuration in that row, b) how many of the cases are represented by that configuration, and c) their association with the outcome.

We first constructed the truth tables based on context and participants, intervention designs, program content, and method of engagement; however, no configurations to trigger successful interventions were observed. Instead, we observed limited diversity, meaning there were many instances in which the configurations were unsupported by cases, likely due to the presence of too many conditions in the truth tables. We used the learning from these truth tables to return to the literature to explore potential explanatory theories about what conditions are important from the perspectives of participants and trialists to trigger successful interventions (adhering to the ‘utilisation of view’ perspective [ 35 ]). Through this process, we found that women and communities liked to learn new information about childbirth, and desired emotional support from partners and health providers while learning [ 22 ]. They also appreciated educational interventions that provide opportunities for discussion and dialogue with health providers and align with current clinical practice and advice from health providers [ 22 ]. Therefore, three models of truth tables were iteratively constructed and developed based on three important hypothesised theories about how the interventions should be delivered: 1) how birth information was provided to women, 2) emotional support was provided to women (including interactions between women and providers), and 3) a consolidated model examining the interactions of important conditions identified from model 1 and 2. We also conducted a sub-analysis of interventions targeting both women and health providers or systems (‘multi-target interventions’). This sub-analysis was conducted to explore if similar conditions were observed in triggering successful interventions in multi-target interventions, among the components for women only. Table 1 presents the list of truth tables that were iteratively constructed and refined.

QCA stage 3: Checking quality of truth tables

We iteratively developed and improved the quality of truth tables by checking the configurations of successful and unsuccessful interventions, as recommended by Thomas et al. (2014) [ 31 ]. This includes by assessing the number of studies clustering to each configuration, and exploring the presence of any contradictory results between successful and unsuccessful interventions. We found contradictory configurations across the five truth tables, which were resolved by considering the theoretical perspectives and iteratively refining the truth tables.

QCA stage 4: Identifying parsimonious configurations through Boolean minimization

Once we determined that the truth tables were suitable for further analysis, we used Boolean minimisation to explore pathways resulting in successful intervention through the configurations of different conditions [ 31 ]. We simplified the “complex solution” of the pathways to a “parsimonious solution” and an “intermediate solution” by incorporating logical remainders (configurations where no cases were observed) [ 36 ].

QCA stage 5: Checking the quality of the solution

We presented the intermediate solution as the final solution instead of the most parsimonious solution, as it is most closely aligned with the underlying theory. We checked consistency and coverage scores to assess if the pathways identified were sufficient to trigger success. We also checked the intermediate solution by negating the outcome to see if it predicts the observed solutions.

QCA stage 6: Interpretation of solutions

We iteratively interpreted the results of the findings through discussions among the QCA team. This reflexive approach ensured that the results of the analysis considered the perspectives from the literature discourse, methodological approach, and that the results were coherent with the current understanding of the phenomenon.

Overview of included studies

Out of 79 intervention studies assessed by Chen et al. (2018) [ 18 ] and Opiyo et al. (2020) [ 23 ], 17 intervention studies targeted women and are included, comprising 11 interventions targeting only women [ 37 , 38 , 39 , 40 , 41 , 42 , 43 ] and six interventions targeting both women and health providers or systems [ 44 , 45 , 46 , 47 , 48 , 49 ]. From 17 included studies, 19 sibling studies were identified [ 43 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 ]. Thus, a total of 36 papers from 17 intervention studies are included in this QCA (See Fig.  1 : PRISMA Flowchart).

PRISMA flowchart. *Sibling studies: studies that were conducted in the same settings, participants, and timeframe; **Intervention components: information on intervention input, activities, and outputs, including intervention context and other characteristics

The 11 interventions targeting women comprised of five successful interventions [ 37 , 68 , 69 , 70 , 71 ] and six unsuccessful interventions [ 37 , 38 , 39 , 40 , 41 , 42 , 43 ] in reducing CS. Sixteen sibling studies were identified, from five out of 11 included interventions [ 37 , 41 , 43 , 70 , 71 ]. Included studies were conducted in six countries across North America (2 from Canada [ 38 ] and 1 from United States of America [ 71 ]), Asia–Pacific (1 from Australia [ 41 ]), 5 from Iran [ 39 , 40 , 68 , 69 , 70 ]), Europe (2 from Finland [ 37 , 42 ], 1 from United Kingdom [ 43 ]). Six studies were conducted in high-income countries, while five studies were conducted in upper-middle-income countries (all from Iran). All 11 studies targeted women, with three studies also explicitly targeting women’s partners [ 68 , 69 , 71 ]. One study delivering psychoeducation allowed women to bring any family members to accompany them during the intervention but did not specifically target partners [ 37 ]. All 11 studies delivered childbirth education, with four delivering general antenatal education [ 38 , 40 , 68 , 69 ], six delivering psychoeducation [ 37 , 39 , 41 , 42 , 70 , 71 ], and one implementing decision aids [ 43 ]. All studies were included in Chen et al. (2018), and some risks of bias were identified [ 18 ] (Additional file 2).

The multi-target interventions consisted of five successful interventions [ 44 , 45 , 46 , 47 , 48 ] and one unsuccessful intervention [ 49 ]. Sibling studies were only identified from one study [ 48 ]. The interventions were delivered in five countries across: South America (1 from Brazil [ 46 ]), Asia–Pacific (4 from China [ 44 , 45 , 47 , 49 ]), Europe (1 from Italy [ 48 ], 1 from Ireland [ 48 ], and 1 from Germany [ 48 ]). Three studies were conducted in high-income countries and five studies in upper middle-income countries. The multi-target interventions targeted women, health providers and health organisations. For this analysis, however, we only consider the components of the intervention that targeted women, which was typically childbirth education. One study came from Chen et al. (2018) [ 18 ] and was graded as having some concerns [ 47 ], two studies from Opiyo et al. (2020) [ 23 ] were graded as having no serious concerns [ 45 , 46 ], and three studies are newly published studies assessed as low [ 44 ] and some concerns about risk of bias [ 48 , 49 ] Table 2 and 3 show characteristics of included studies.

The childbirth education interventions included information about mode of birth, birth process, mental health and coping strategies, pain relief methods, and partners’ roles in birth. Most interventions were delivered in group settings, and only in three studies they were delivered on a one-to-one basis [ 38 , 41 , 42 ]. Only one study explicitly stated that the intervention was individualised to a woman’s unique needs and experiences [ 38 ].

Overall, there was limited theory used to design interventions among the included studies: less than half of interventions (7/17) explicitly used theory in designing the intervention. Among the seven interventions that used theory in intervention development, the theories included the health promotion-disease prevention framework [ 38 ], midwifery counselling framework [ 41 ], cognitive behavioural therapy [ 42 ], Ost’s applied relaxation [ 70 ], conceptual model of parenting [ 71 ], attachment and social cognitive theories [ 37 ], and healthcare improvement scale-up framework [ 46 ]. The remaining 10 studies only relied on previously published studies to design the interventions. We identified very limited process evaluation or implementation outcome evidence related to the included interventions, which is a limitation of the field of CS and clinical interventions more broadly.

• Qualitative comparative analysis

Model 1 – How birth information was provided to women

Model 1 is constructed based on the finding from Kingdon et al. (2018) [ 22 ] that women and communities enjoy learning new birth information, as it opens up new ways of thinking about vaginal birth and CS. Learning new information allows them to understand better the benefits and risks of CS and vaginal births, as well as increase their knowledge about CS [ 22 ].

We used four conditions in constructing model 1 truth table: 1) the provision of information, education, and communication (IEC) materials on what to expect during labour and birth, 2) type of education delivered (antenatal education or psychoeducation), and 3) group-based intervention delivery. We explored this model considering other conditions, such as type of information provided (e.g. information about mode of birth including birth process, mental health and coping strategies, pain relief), delivery technique (e.g. didactic, practical) and frequency and duration of intervention delivery; however these additional conditions did not result in configurations.

Of 16 possible configurations, we identified seven configurations (Table 4 ). The first two row shows perfect consistency of configurations (inclusion = 1) in five studies [ 37 , 68 , 69 , 70 , 71 ] in which all conditions are present, except antenatal education or psychoeducation. The remaining configurations are unsuccessful interventions. Interestingly, when either IEC materials or group-based intervention delivery are present (but not both), implementation is likely to be unsuccessful (rows 3–7).

Boolean minimisation identified two intermediate pathways to successful interventions (Fig.  2 ). The two pathways are similar, except for one condition: type of education. The antenatal education or psychoeducation materials is the content tailored to the type of women they target. Therefore, from the two pathways, we can see that the presence of distribution of IEC materials on birth information and group-based intervention delivery of either antenatal education to the general population of women (e.g. not groups of women with specific risks or conditions) or psychoeducation to women with fear of birth trigger successful interventions. From this solution, we can see that the successful interventions are consistently characterised by the presence of both IEC materials and group-based intervention delivery.

Intermediate pathways from model 1 that trigger successful interventions targeting pregnant women to optimise CS. In QCA, asterisk (*) denotes an ‘AND’ relationship; Inclusion score (InclS), also known as consistency, indicates the degree to which the evidence is consistent with the hypothesis that there is sufficient relation between the configuration and the outcome; Proportional Reduction in Inconsistency (PRI) refers to the extent in which a configuration is sufficient in triggering successful outcome as well as the negation of the outcome; Coverage score (CovS) refers to percentage of cases in which the configuration is valid

Model 2 – Emotional support was provided to women

Model 2 was constructed based on the theory that women desire emotional support alongside the communication of information about childbirth [ 22 ]. This includes emotional support from husbands or partners, health professional, or doulas [ 22 ]. Furthermore, Kingdon et al. (2018) describe the importance of two-way conversation and dialogue between women and providers during pregnancy care, particularly to ensure the opportunity for discussion [ 22 ]. Interventions may generate more questions than they answered, creating the need and desire of women to have more dialogue with health professionals [ 22 ]. Women considered intervention content to be most useful when it complements clinical care, is consistent with advice from health professionals and provides a basis for more informed, meaningful dialogue between women and care providers [ 22 ].

Based on this underlying theory, we constructed model 3 truth table by considering three conditions representative of providing emotional support to women, including partner or family member involvement, group-based intervention delivery which provide social or peer support to women, and opportunity for women to interact with health providers. Of 8 possible configurations, we identified six configurations (Table 5 ). The first three rows represent successful interventions with perfect consistency (inclusion = 1). The first row shows successful interventions with all conditions present. The second and third row shows successful interventions with all conditions except partner or family member involvement or interaction with health providers. The remaining rows represent unsuccessful interventions, where at least two conditions are absent.

Boolean minimisation identified two intermediate pathways to successful interventions (Fig.  3 ). In the first pathway, the partner or family members involvement and group-based intervention delivery enable successful interventions. In the second pathway, however, when partner or family members are not involved, successful interventions can happen only when interaction with health providers is included alongside group-based intervention. From these two pathways, we can see that group-based intervention, involvement of partner and family member, and opportunity for women to interact with providers seem to be important in driving intervention success.

Intermediate pathways from model 2 that trigger successful interventions targeting pregnant women to optimise CS. In QCA, asterisk (*) denotes an ‘AND’ relationship; Inclusion score (InclS), also known as consistency, indicates the degree to which the evidence is consistent with the hypothesis that there is sufficient relation between the configuration and the outcome; Proportional Reduction in Inconsistency (PRI) refers to the extent in which a configuration is sufficient in triggering successful outcome as well as the negation of the outcome; Coverage score (CovS) refers to percentage of cases in which the configuration is valid

Consolidated model – Essential conditions to prompt successful interventions focusing on women

Using the identified important conditions observed in models 1 and 2, we constructed a consolidated model to examine the final essential conditions which could prompt successful educational interventions targeting women. We merged and tested four conditions: the provision of IEC materials on what to expect during labour and birth, group-based intervention delivery, partner or family member involvement, and opportunity for interaction between women and health providers.

Of the 16 possible configurations, we identified six configurations (Table 6 ). The first three rows show configurations resulting in successful interventions with perfect consistency (inclusion = 1). The first row shows successful interventions with all conditions present; the second and third rows show successful interventions with all conditions present except interaction with health providers or partner or family member involvement. The remaining three rows are configurations of unsuccessful interventions, missing at least two conditions, including the consistent absence of partner or family member involvement.

Boolean minimisation identified two intermediate pathways to successful intervention (Fig.  4 ). The first pathway shows that the opportunity for women to interact with health providers, provision of IEC materials, and group-based intervention delivery prompts successful interventions. The second pathway, however, shows that when there is no opportunity for women to interact with health providers, it is important to have partner or family member involvement alongside group-based intervention delivery and provision of IEC materials. These two pathways suggest that the delivery of educational interventions accompanied by provision of IEC materials and presence of emotional support for women during the intervention is important to trigger successful interventions. These pathways also emphasise that emotional support for women during the intervention can come from either partner, family member, or health provider. For the consolidated model, we did not simplify the solution further, as the intermediate solution is more theoretically sound compared to the most parsimonious solution.

Intermediate pathways from consolidated model that trigger successful interventions targeting pregnant women to optimise CS.  In QCA, asterisk (*) denotes an ‘AND’ relationship; Inclusion score (InclS), also known as consistency, indicates the degree to which the evidence is consistent with the hypothesis that there is sufficient relation between the configuration and the outcome; Proportional Reduction in Inconsistency (PRI) refers to the extent in which a configuration is sufficient in triggering successful outcome as well as the negation of the outcome; Coverage score (CovS) refers to percentage of cases in which the configuration is valid.

Sub-analysis – Interventions targeting both women and health providers or systems

In this sub-analysis, we run the important conditions identified from the consolidated model, added condition of multi-target intervention, and applied it to 17 interventions: 11 interventions targeting women, and six interventions targeting both women and health providers or systems (multi-target interventions).

Of 32 possible configurations, we identified eight configurations (Table 7 ). The first four rows show configurations with successful interventions with perfect consistency (inclusion = 1). The first row is where all the multi-target interventions are clustered, except the unsuccessful intervention Zhang (2020) [ 49 ], and where all the conditions are present. All the conditions in the second to fourth rows are present, except multi-target interventions (all rows), interaction with health providers (third row) and partner and family member involvement (fourth row). The remaining rows are all configurations to unsuccessful interventions, where at least three conditions are missing, except row 8, which is a single case row. This case is the only multi-target intervention that is unsuccessful and in which partner or family members were not involved.

The Boolean minimisation identified two intermediate pathways (Fig.  5 ). The first pathway shows that partner or family involvement, provision of IEC materials, and group-based intervention delivery prompt successful interventions. The first pathway is comprised of all five successful multi-target interventions [ 44 , 45 , 46 , 47 , 48 ] and four of 11 interventions targeting only women [ 37 , 68 , 69 , 71 ]. The second pathway shows that when multi-target interventions are absent, but when interaction with health providers is present, alongside provision of IEC materials and group-based intervention delivery, it prompts successful interventions (3/11 interventions targeting women only [ 37 , 69 , 70 ]). The first pathway shows that there are successful configurations with and without multi-target interventions. Therefore, similar to the interventions targeting women, when implementing multi-target interventions, intervention components targeting women are more likely to be successful when partners or family members are involved, interventions are implemented through group-based intervention delivery, IEC materials were provided, and there is an opportunity for women to interact with health providers.

Intermediate pathways from multi-target interventions sub-analysis that trigger successful interventions targeting pregnant women to optimise CS. In QCA, asterisk (*) denotes an ‘AND’ relationship; Inclusion score (InclS), also known as consistency, indicates the degree to which the evidence is consistent with the hypothesis that there is sufficient relation between the configuration and the outcome; Proportional Reduction in Inconsistency (PRI) refers to the extent in which a configuration is sufficient in triggering successful outcome as well as the negation of the outcome; Coverage score (CovS) refers to percentage of cases in which the configuration is valid

To summarise, there are four essential intervention components which trigger successful educational interventions focusing on pregnant women to reduce CS, this includes 1) group-based intervention delivery, 2) provision of IEC materials on what to expect during labour and birth, 3) partner or family member involvement on the intervention, and 4) opportunity for women to interact with health providers. These conditions do not work in siloed or independently but instead work jointly as parts of configurations to enable successful interventions.

Our extensive QCA identified configurations of essential intervention components which are sufficient to trigger successful interventions to optimised CS. Educational interventions focusing on women were successful by: 1) leveraging social or peer support through group-based intervention delivery, 2) improving women’s knowledge and awareness of what to expect during labour and birth, 3) ensuring women have emotional support through partner or family participation in the intervention, and 4) providing opportunities for women to interact with health providers. We found that the absence of two or more of the above characteristics in an intervention result in unsuccessful interventions. Unlike our logic model, which predicted engagement strategies (i.e. intensity, frequency, technique, recruitment, incentives) to be essential to intervention success, we found that “support” seems to be central in maximising benefits of interventions targeting women.

Group-based intervention delivery is present across all four truth tables and eight pathways leading to successful intervention implementation, suggesting that group-based intervention delivery is an essential component of interventions targeting women. Despite this, we cannot conclude that group-based intervention delivery is a necessary condition, as there may be other pathways not captured in this QCA. The importance of group-based intervention delivery may be due to the group setting providing women with a sense of confidence through peer support and engagement. In group-based interventions, women may feel more confident when learning with others and peer support may motivate women. Furthermore, all group-based interventions in our included studies are conducted at health facilities, which may provide women with more confidence that information is aligned with clinical recommendations. Evidence on benefits of group-based interventions involving women who are pregnant has been demonstrated previously [ 72 , 73 ]. Women reported that group-based interventions reduce their feelings of isolation, provide access to group support, and allow opportunities for them to share their experiences [ 72 , 74 , 75 , 76 ]. This is aligned with social support theory, in which social support through a group or social environment may provide women with feelings of reassurance, compassion, reduce feelings of uncertainty, increase sense of control, access to new contacts to solve problems, and provision of instrumental support, which eventually influence positive health behaviours [ 72 , 77 ]. Women may resolve their uncertainties around mode of birth by sharing their concerns with others and learning at the same time how others cope with it. These findings are consistent with the benefits associated with group-based antenatal care, which is recommended by WHO [ 78 , 79 ].

Kingdon et al. (2018) reported that women and communities liked learning new birth information, as it opens new ways of thinking about vaginal birth and CS, and educates about benefits of different modes of birth, including risks of CS. Our QCA is aligned with this finding where provision of information about birth through education delivery leads to successful interventions but with certain caveats. That is, provision of birth information should be accompanied by IEC materials and through group-based intervention delivery. There is not enough information to distinguish what type of IEC materials lead to successful intervention; however, it is important to note that the format of the IEC materials (such as paper-based or mobile application) may affect success. More work is needed to understand how women and families react to format of IEC materials; for example, will paper-based IEC materials be relegated over more modern methods of reaching women with information through digital applications? The QUALI-DEC (Quality decision-making (QUALI-DEC) by women and healthcare providers for appropriate use of caesarean section) study is currently implementing a decision-analysis tool to help women make an informed decision on preferred mode of birth using both a paper-based and mobile application that may shed some light on this [ 80 ].

Previous research has shown that women who participated in interventions aiming to reduce CS desired emotional support (from partners, doulas or health providers) alongside the communication about childbirth [ 22 ]. Our QCA is aligned with this finding in which emotional support from partners or family members is highly influential in leading to successful interventions. Partner involvement in maternity care has been extensively studied and has been demonstrated to improve maternal health care utilisation and outcomes [ 81 ]. Both women and their partners perceived that partner involvement is crucial as it facilitates men to learn directly from providers, thus promoting shared decision-making among women and partners and enabling partners to reinforce adherence to any beneficial suggestions [ 82 , 83 , 84 , 85 , 86 ]. Partners provide psychosocial support to women, for example through being present during pregnancy and the childbirth process, as well as instrumental support, which includes supporting women financially [ 82 , 83 , 84 ]. Despite the benefits of partner involvement, partner's participation in maternity care is still low [ 82 ], as reflected in this study where only four out of 11 included interventions on this study involved partner or family member involvement. Reasons for this low participation, which include unequal gender norms and limited health system capability [ 82 , 84 , 85 , 86 ], should be explored and addressed to ensure the benefits of the interventions.

Furthermore, our QCA demonstrates the importance of interaction with health providers to trigger successful interventions. The interaction of women with providers in CS decision-making, however, is on a “nexus of power, trust, and risk”, where it may be beneficial but can also reinforce the structural oppression of women [ 13 ]. A recent study on patient-provider interaction in CS decision-making concluded that the interaction between providers who are risk-averse, and women who are cautious about their pregnancies in the health system results in discouragement of vaginal births [ 87 ]. However, this decision could be averted by meaningful communication between women and providers where CS risks and benefits are communicated in an environment where vaginal birth is encouraged [ 87 ]. Furthermore, the reasons women desire interaction with providers can come from opposite directions. Some women see providers as the most trusted and knowledgeable source, in which women can trust the judgement and ensure that the information learned is reliable and evidenced-based [ 22 ]. On the other hand, some women may have scepticism towards providers where women understand that providers’ preference may negatively influence their preferred mode of birth [ 22 ]. Therefore, adequate, two-way interaction is important for women to build a good rapport with providers.

It is also important to note that we have limited evidence (3/17 intervention studies) involving women with previous CS. Vaginal birth after previous CS (VBAC) can be a safe and positive experience for some women, but there are also potential risks depending on their obstetric history [ 88 , 89 , 90 ]. Davis (2020) found that women were motivated to have VBAC due to negative experiences of CS, such as the difficult recovery, and that health providers' roles served as pivotal drivers in motivating women towards VBAC [ 91 ]. Other than this, VBAC also requires giving birth in a suitably staffed and equipped maternity unit, with staff trained on VBAC, equipment for labour monitoring, and resources for emergency CS if needed [ 89 , 90 ]. There is comparatively less research conducted on VBAC and trial of labour after CS [ 88 ]. Therefore, more work is needed to explore if there are potentially different pathways that lead to successful intervention implementation for women with previous CS. It may be more likely that interventions targeting various stakeholders are more crucial in this group of women. For example, both education for women and partners or families, as well as training to upskill health providers might be needed to support VBAC.

Strength and limitations

We found many included studies had poor reporting of the interventions, including the general intervention components (e.g. presence of policies that may support interventions) and process evaluation components, which is reflective of the historical approach to reporting trial data. This poor reporting means we could not engage further in the interventions and thus may have missed important conditions that were not reported. However, we have attempted to compensate for limited process evaluation components by identifying all relevant sibling studies that could contribute to a better understanding of context. Furthermore, there are no studies conducted in low-income countries, despite rapidly increasing CS rates in these settings. Lastly, we were not able to conduct more nuanced analyses about CS, such as exploring how CS interventions impacted changes to emergency versus elective CS, VBAC, or instrumental birth, due to an insufficient number of studies and heterogeneity in outcome measurements. Therefore, it is important to note that we are not necessarily measuring the optimal outcome of interest—reducing unnecessary CS. However, it is unlikely that these non-clinical interventions will interfere with a decision of CS based on clinical indications.

Despite these limitations, this is the first study aiming to understand how certain interventions can be successful in targeting women to optimise CS use. We used the QCA approach and new analytical frameworks to re-analyse existing systematic review evidence to generate new knowledge. We ensure robustness through the use of a logic model and worked backwards in understanding what aspects are different in the intervention across different outcomes. The use of QCA and qualitative evidence synthesis ensured that the results are theory-driven, incorporate participants’ perspectives into the analysis, and explored iteratively to find the appropriate configurations, reducing the risk of data fishing. Lastly, this QCA extends the understanding of effectiveness review conducted by Chen et al. (2018) [ 18 ] by explaining the potential intervention components which may influence heterogeneity.

Implications for practice and research

To aid researchers and health providers to reduce CS in their contexts and designing educational interventions targeting women during pregnancy, we have developed a checklist of key components or questions to consider when designing the interventions that may help lead to successful implementation:

Is the intervention delivered in a group setting?

Are IEC materials on what to expect during labour and birth disseminated to women?

Are women’s partners or families involved in the intervention?

Do women have opportunities to interact with health providers?

We have used this checklist to explore the extent to which the included interventions in our QCA include these components using a matrix model (Fig.  6 ).

Matrix model assessing the extent to which the included intervention studies have essential intervention components identified in the QCA

Additionally, future research on interventions to optimise the use of CS should report the intervention components implemented, including process outcomes such as fidelity, attrition, contextual factors (e.g. policies, details of how the intervention is delivered), and stakeholder factors (e.g. women’s perceptions and satisfaction). These factors are important in not just evaluating whether the intervention is successful or not, but also in exploring why similar interventions can work in one but not in another context. There is also a need for more intervention studies implementing VBAC to reduce CS, to understand how involving women with previous CS may result in successful interventions. Furthermore, more studies understanding impact of the interventions targeting women in LMICs are needed.

This QCA illustrates crucial intervention components and potential pathways that can trigger successful educational interventions to optimise CS, focusing on pregnant women. The following intervention components are found to be sufficient in triggering successful outcomes: 1) group-based delivery, 2) provision of IEC materials, 3) partner or family member involvement, and 4) opportunity for women to interact with health providers. These intervention components do not work in siloed or independently but instead work jointly as parts of configurations to enable successful interventions. Researchers, trialists, hospitals, or other institutions and stakeholders planning interventions focusing on pregnant women can consider including these components to ensure benefits. More studies understanding impact of the interventions targeting women to optimise CS are needed from LMICs. Researchers should clearly describe and report intervention components in trials, and consider how process evaluations can help explain why trials were successful or not. More robust trial reporting and process evaluations can help to better understand mechanisms of action and why interventions may work in one context yet not another.

Availability of data and materials

Additional information files have been provided and more data may be provided upon request to [email protected].

Abbreviations

Coverage score

• Caesarean section

Crisp set qualitative comparative analysis

Fuzzy set qualitative comparative analysis

Information, education, and communication

Inclusion score

Low- and middle-income countries

Proportional reduction in inconsistency

Quality decision-making by women and healthcare providers for appropriate use of caesarean section

Vaginal birth after previous caesarean section

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Acknowledgements

We extend our thanks to Jim Berryman (Brownless Medical Library, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne) for his help in refining the search strategy for sibling studies.

This research was made possible with the support of UNDP/UNFPA/UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP), a co-sponsored programme executed by the World Health Organization (WHO). RIZ is supported by Melbourne Research Scholarship and Human Rights Scholarship from The University of Melbourne. CSEH is supported by a National Health and Medical Research Council (NHMRC) Principal Research Fellowship. MAB’s time is supported by an Australian Research Council Discovery Early Career Researcher Award (DE200100264) and a Dame Kate Campbell Fellowship (University of Melbourne Faculty of Medicine, Dentistry, and Health Sciences). The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. The contents of this publication are the responsibility of the authors and do not reflect the views of the UNDP/UNFPA/UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP), World Health Organization.

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Gender and Women’s Health Unit, Nossal Institute for Global Health, School of Population and Global Health, University of Melbourne, Melbourne, VIC, Australia

Rana Islamiah Zahroh, Martha Vazquez Corona & Meghan A. Bohren

EPPI Centre, UCL Social Research Institute, University College London, London, UK

Katy Sutcliffe & Dylan Kneale

Department of Sexual and Reproductive Health and Research, UNDP/UNFPA/UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP), World Health Organization, Geneva, Switzerland

Ana Pilar Betrán & Newton Opiyo

Maternal, Child, and Adolescent Health Programme, Burnet Institute, Melbourne, VIC, Australia

Caroline S. E. Homer

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- Conceptualisation and study design: MAB, APB, RIZ

- Funding acquisition: MAB, APB

- Data curation: RIZ, MAB, MVC

- Investigation, methodology and formal analysis: all authors

- Visualisation: RIZ, MAB

- Writing – original draft preparation: RIZ, MAB

- Writing – review and editing: all authors

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Correspondence to Rana Islamiah Zahroh .

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Supplementary Information

Additional file 1..

Logic model in optimizing CS use.

Additional file 2.

Risk of bias assessments.

Additional file 3.

Coding framework and calibration rules.

Additional file 4.

Coding framework as applied to each intervention (data table).

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Zahroh, R.I., Sutcliffe, K., Kneale, D. et al. Educational interventions targeting pregnant women to optimise the use of caesarean section: What are the essential elements? A qualitative comparative analysis. BMC Public Health 23 , 1851 (2023). https://doi.org/10.1186/s12889-023-16718-0

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Pregnant and postpartum women’s experiences of the indirect impacts of the COVID-19 pandemic in high-income countries: a qualitative evidence synthesis

• Annie Tan 1 , 2 , 3 ,
• Amanda Blair 2 , 4 ,
• Caroline SE. Homer 1 , 2 ,
• Robin Digby 1 , 3 , 5 ,
• Joshua P. Vogel 1 , 2 &
• Tracey Bucknall 1 , 3 , 5  

BMC Pregnancy and Childbirth volume  24 , Article number:  262 ( 2024 ) Cite this article

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Pregnant and postpartum women’s experiences of the COVID-19 pandemic, as well as the emotional and psychosocial impact of COVID-19 on perinatal health, has been well-documented across high-income countries. Increased anxiety and fear, isolation, as well as a disrupted pregnancy and postnatal period are widely described in many studies. The aim of this study was to explore, describe and synthesise studies that addressed the experiences of pregnant and postpartum women in high-income countries during the first two years of the pandemic.

A qualitative evidence synthesis of studies relating to women’s experiences in high-income countries during the pandemic were included. Two reviewers extracted the data using a thematic synthesis approach and NVivo 20 software. The GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) was used to assess confidence in review findings.

Sixty-eight studies were eligible and subjected to a sampling framework to ensure data richness. In total, 36 sampled studies contributed to the development of themes, sub-themes and review findings. There were six over-arching themes: (1) dealing with public health restrictions; (2) navigating changing health policies; (3) adapting to alternative ways of receiving social support; (4) dealing with impacts on their own mental health; (5) managing the new and changing information; and (6) being resilient and optimistic. Seventeen review findings were developed under these themes with high to moderate confidence according to the GRADE-CERQual assessment.

Conclusions

The findings from this synthesis offer different strategies for practice and policy makers to better support women, babies and their families in future emergency responses. These strategies include optimising care delivery, enhancing communication, and supporting social and mental wellbeing.

Peer Review reports

As of February 2024 SARS-CoV-2 has infected over 774 million people, and 7 million deaths have been attributed to coronavirus 19 (COVID-19) infection [ 1 ]. Maternal and newborn health services are essential for pregnant and postpartum women, and the COVID-19 pandemic significantly altered provision and access to routine care. Reduced services, limited face-to-face care, transition to virtual and remote care, and limited access to maternity care providers were commonly cited as barriers to accessing quality care by pregnant and postpartum women [ 2 , 3 , 4 , 5 , 6 ]. Additionally, reduced lengths of stay within hospitals and restrictions on support people imposed by health facilities have impacted women receiving care and placed an additional burden on nursing and midwifery staff [ 7 , 8 , 9 ]. This had significant impacts on pregnant and postpartum women’s emotional and psychosocial wellbeing.

Pregnant women and their babies were at an increased risk of adverse effects if she contracted SARS-CoV-2 [ 10 , 11 ]. The direct impacts of the COVID-19 pandemic were largely focused on the clinical manifestations of SARS-CoV-2 such as symptoms, risk factors, management and treatment, as well as adverse maternal and newborn outcomes [ 12 , 13 , 14 , 15 ]. However, at a wider level, the impacts of policy changes, health system reforms and changes to maternity care services indirectly affected the provision of care for all women giving birth over this time period. Women’s experiences of the transition from pregnancy to motherhood were also impacted. For example, in many countries, pregnant women were encouraged to homestay at home, receive care through telehealth rather than face-to-face and reduce face-to-face education [ 16 , 17 ]. Isolation from family, friends and peers has negatively impacted women’s mental health, with increased levels of anxiety, depression and stress globally [ 18 , 19 , 20 , 21 ].

Since the beginning of the pandemic, there has been a plethora of qualitative studies on women’s experiences [ 19 , 22 , 23 , 24 , 25 , 26 ] – the significant volume of papers highlights the need for a clear synthesis. Reviews of qualitative evidence have reported pregnant women’s experiences of social support [ 27 ], as well as highlighting the challenges they faced as they embraced motherhood during the pandemic [ 28 ]. Collating the evidence in a systematic and transparent manner will allow policymakers to consider the indirect implications of public health restrictions on the physical, emotional, and psychosocial health and wellbeing of pregnant and postpartum women.

Qualitative evidence synthesis (QES) is an approach that can systematically collate qualitative data in a transparent manner to inform policy and practice [ 29 ]. Findings from a QES can enable a richer interpretation of a particular phenomenon and enable a greater understanding of individual experiences, views and beliefs [ 30 ]. This QES aimed to explore, describe and synthesise the experiences of pregnant and postpartum women living in high-income countries during the first two years of the COVID-19 pandemic. This research method allows a deeper understanding of their views and experiences during this time. It also facilitates identification of areas of improvement for maternity care services, to ensure high-quality care is available at all times.

A QES was undertaken to identify, evaluate and summarise findings from qualitative studies providing a cohesive and transparent documentation of the contextual variations, stakeholder preferences and experiences to ultimately influence policy and practice [ 31 , 32 ]. This type of synthesis integrates diverse perspectives, which is needed to capture the complexity of the indirect impacts of the COVID-19 pandemic on pregnant and postpartum women’s experiences. This QES was structured to include findings from qualitative studies, as well as qualitative findings from mixed-methods studies. Emphasis was placed on including different types of qualitative evidence that can potentially enrich a synthesis, such as narrative data from qualitative components of mixed-methods studies or free-text from questionnaires [ 29 ].

We followed the relevant Cochrane guidelines [ 29 ] and used the “Enhancing transparency in reporting the synthesis of qualitative research” (ENTREQ) statement to guide our approach and reporting (Supplementary 1 , S1) [ 33 ]. In addition, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for reporting the different phases of identifying studies was used as recommended by the ENTREQ statement (S 2 ) [ 34 ]. The protocol and systematic review were not registered.

Eligibility criteria

We defined “indirect impacts of the pandemic on women”, to mean the impact of regulations, recommendations and public health measures enforced by governments as a response to the COVID-19 pandemic had on pregnant and postpartum women and their newborns. We adopted the World Health Organization’s definition of the postpartum period beginning immediately after birth of the baby and extending to six weeks (42 days) after birth [ 35 ].

Participants within these studies were those who were pregnant or within the postpartum period, of childbearing age (15-49 years), and received any type of maternity care during the COVID-19 pandemic. Studies of women with pre-existing comorbidities were also eligible, as well as those focused on migrants, refugee populations or ethnic minority groups. To facilitate exploration of findings from women of diverse backgrounds we have used the term ‘culturally and linguistically diverse (CALD) populations’. We focussed on women living in high-income countries (HICs). Studies were included if they were conducted in countries listed in the Organisation for Economic Co-operation and Development (OECD) [ 36 ] and Human Development Index (HDI) list of “Very high human development” list [ 37 ]. This allowed for similar contexts and countries to be compared.

Eligible study designs were those that addressed the indirect impact of COVID-19 using qualitative methodologies, including phenomenology, ethnography, grounded theory studies and case studies. We also included any study that obtained data through qualitative methods for data collection such as, interviews, focus groups, online forums and document analysis.

The decision to limit the eligibility based on year of publication, to only include studies published in the first two years of the COVID-19 pandemic (1 st Jan 2020 – 1 st Jan 2022) was to emphasise the impact of the stricter restrictions and lockdowns during this time period. Globally, public health measures to reduce spread and transmission included, mandatory quarantine, limiting movement, lockdowns, closure of schools and workplaces and shielding of vulnerable populations. These measures were significantly harsher during the first two years and subsequently relaxed as vaccine roll-outs occurred and infection rates began to decline [ 38 , 39 ]. The Oxford Coronavirus Government Response Tracker reported a stringency index which reiterates the trend of harsher restrictions implemented by governments throughout 2020-2022 time period and reflects the gradual decline after this date [ 40 ].

Search strategy

Six electronic databases (EBSCO Medline, Embase, APA PsycInfo, CINAHL and Maternity and Infant Care (MIDIRS)) were searched to identify all qualitative research articles published between 1 st January 2020 – 1 st January 2022. Search strategy included terms such as, “pregnan*”, “postpartum”, “mother”, “views”, “experiences”, “opinion*”, “indirect”, “COVID-19”, “coronavirus”. The search strategy was reviewed by a university librarian (S 3 ). Search hits from each of the databases were imported into Endnote 20 which was then used as our reference library. References were imported into Covidence for screening [ 41 ].

Study selection and sampling framework

Two review authors (AT, AB) independently screened titles, abstracts and full texts for inclusion, with any conflicts resolved by discussion or consulting a third author. Reasons for exclusion are described within PRISMA flowchart (Fig. 1 ). Sixty-eight studies were included following full-text review. The Cochrane guidelines for QES highlight that for reviews with large amounts of primary studies (50 or more) can result in a high volume of data, which can threaten quality of the synthesis. In such situations, a sampling framework can enhance the quality and diversity of the papers and ensure the number of studies and amount of data are manageable [ 42 , 43 , 44 ]. A QES worked example by Ames et al., 2019 was used as a guide to develop the sampling framework for data richness [ 45 ]. Two independent reviewers scored included studies from 1 to 5 based on the criteria outlined in Table 1 , to ensure that the sampling framework was reliable and replicable. Any conflicts were resolved by discussion, or a third review author was consulted. Studies with a score ≥4 were included for data extraction and are referred to as ‘sampled’ studies (S 4 ).

Reporting of adapted PRISMA flowchart of included and sampled studies in accordance with PRISMA and ENTREQ guidelines [ 33 ]

Quality assessment

The Critically Appraisal Skills Program (CASP) tool for qualitative research was used by two independent review authors (AT, AB) to assess methodological limitations of sampled studies (S 5 ) [ 46 ]. Any disagreements were resolved through discussion, or when required, a third review author was consulted. Sampled studies were graded as no or very minor, minor, moderate or severe concerns with methodological limitations.

Data extraction and synthesis

A “Characteristics of sampled studies” table was created in Excel and details are reported in Table 2 . Two independent reviewers familiarised themselves with the sampled studies and extracted key themes using Braun and Clarke’s reflexive approach to inductive and deductive thematic analysis [ 47 ]. Data were managed using NVivo 20 [ 48 ]. This was an iterative process as many of the themes and sub-themes overlapped and were relevant in many aspects throughout the perinatal period (Table 3 ). The findings were developed iteratively, and periodically shared with the broader team to evolve our interpretation. Any quotes taken from studies were selected as they reiterated findings, and provided additional depth and meaning to review findings.

Extracted data were populated into two tables for analysis. The first table collated quotes and author interpretations of findings (S 6 ), whilst the second table summarised these into review findings (Table 4 ).

Assessment of confidence in the review findings (GRADE-CERQual)

The GRADE-CERQual tool assesses the confidence in review findings from qualitative evidence syntheses [ 83 ]. Lewin et al., 2018 state that that “the approach has been developed to support the use of findings from qualitative evidence syntheses in decision-making, including guideline development and policy formulation” [ 83 ]. The GRADE-CERQual Interactive Summary of Qualitative Findings (iSoQ) online platform was used to manage and assess confidence in review findings [ 84 ].

Confidence in review findings was determined based on four criteria: methodological limitations, coherence, adequacy and relevance [ 83 ]. For each criterion, review authors determined if there were no or very minor, minor, moderate or serious concerns. An overall GRADE-CERQual assessment of confidence was placed on the findings, levels included: high, moderate, low and very low confidence. Review findings are considered at the highest confidence level and downgraded as there are greater concerns for each individual criterion (Table 4 ). This process was conducted by two authors, with any disagreements resolved through discussion and consulting other authors.

Managing our own reflexivity

Throughout the conceptualisation, data collection and analytical process, the authors considered their own individual views and beliefs about maternity care during the COVID-19 pandemic. As clinicians and researchers working on maternity care (including during the pandemic), we recognised that the COVID-19 period impacted indirectly on women and babies, including their experiences of care, their own anxieties and worries. We are public health professionals with diverse backgrounds including nursing and midwifery, maternal and newborn health, epidemiology and qualitative health research. We met regularly, both to explore the findings and the processes but also to ensure that we separated our individual experiences and beliefs on the interpretation of the analysis and the findings. Employing a systematic and transparent approach to the analytical process, such as including reflection notes after analysing each sampled paper, facilitated collaborative discussions, ensure objectivity and reduced the impact of personal biases.

A total of 36 studies contributed to the synthesis of qualitative evidence to understand pregnant and postpartum women’s experiences during the first two years of the pandemic. There were six over-arching themes: (1) dealing with public health restrictions; (2) navigating changing health policies; (3) adapting to alternative ways of receiving social support; (4) dealing with impacts on their own mental health; (5) managing the new and changing information; and (6) being resilient and optimistic. Seventeen sub-themes were developed within these 6 themes and illustrative quotes are presented in Table 3 to demonstrate theme development. Themes were categorised to differentiate major disruptors to the pregnancy and postpartum period and sub-themes aimed to categorise the indirect impacts that occurred within the major themes.

Characteristics of contributing studies

After applying the sampling framework (data richness score ≥4), 36 sampled studies were included for data extraction and analysis. Thirteen out of 36 studies had a score of 5 [ 49 , 52 , 57 , 58 , 61 , 62 , 63 , 66 , 68 , 69 , 71 , 77 , 82 ], with the remainder scoring 4 [ 9 , 16 , 50 , 51 , 53 , 54 , 55 , 56 , 59 , 60 , 64 , 65 , 67 , 70 , 72 , 73 , 74 , 75 , 76 , 78 , 79 , 80 , 81 , 82 ] (S 5 ). Most studies ( N =27/36, 75%) used specific qualitative methodologies, six were mixed-methods studies, two were cross-sectional studies, and one was a case series report.

Studies were conducted across nine countries, almost one-third ( N =10/36, 28%) of studies published from the UK, Canada ( N =7) and the USA ( N =7) (Table 2 ). Country-specific responses to the pandemic largely included border closures, mandatory lockdowns and restrictions on movement; it is interesting to note that Sweden did not mandate this but instead enforced social distancing practices [ 68 ]. Additionally, some studies reported on a specific sub-population of pregnant and postpartum women, for example women from ethnic minority groups, those with pre-existing comorbidities, and those who were COVID-19 positive. Some studies also included results from women with babies who were greater than 6 months of age, and any findings directly from these participants were omitted from analysis where possible.

The number of participants in studies that conducted interviews ranged from 3 to 84, and studies using qualitative data from open-ended questions or survey data included responses from 16 to 4,611 participants. Where demographic data were available, approximately 1,192 women were primiparous (having their first baby) and approximately 8,017 women were surveyed or interviewed postpartum. Sampled studies were generally of high quality and assessment of methodological limitations indicated that 29 studies were assigned “no or very minor concerns”, six studies were assigned “minor concerns”, and one study was assigned “moderate concerns”. When available, quotes obtained from studies have included additional demographic data. Factors included pregnant or postpartum status at time of data collection, parity and geographical location.

Theme 1: Dealing with public health restrictions

The rapid introduction of public health restrictions has had adverse effects on mental health, social isolation, and the pregnancy experience. Women had to navigate these restrictions and adapt accordingly, realising quickly that their pregnancy and postpartum experience was going to be very different from their expectations.

Sub-theme 1.1. Limited support networks from health care system and providers (High confidence)

Support networks were limited. Women felt that they were “on their own”, “unimportant or irrelevant” or treated as “second class citizens” after birth, because of a lack of physical supports from healthcare providers [ 51 , 60 , 61 , 62 , 70 , 72 , 74 ]. Limited or no access to physical and social support networks was commonly cited as a reason for deteriorating mental health.

Sub-theme 1.2. Balancing exposure risk and need for healthy behaviours (High confidence)

Women balanced COVID-19 exposure risks by shielding, either because of health providers recommendations [ 16 , 69 ] or because they felt it was needed to protect their baby [ 50 , 68 , 71 , 77 , 81 ]. Women delayed or postponed antenatal appointments [ 50 , 57 , 69 , 72 , 82 ], opted for induction of labour [ 74 ], or waited until labour was quite advanced before attending hospital [ 60 , 61 , 77 ]. These decisions were due to pandemic-induced fear, and the perceived risk of infection in a high-risk environment such as the hospital [ 16 , 56 , 80 ].

Sub-theme 1.3: Missing out on social opportunities (High confidence)

Women felt sad, unseen and heartbroken that they were not able to have social opportunities, especially sharing their newborns with family and friends [ 9 , 54 , 56 , 61 , 66 , 70 , 71 , 75 , 76 ]. On postnatal wards, women with older children were disappointed that their nuclear families could not visit and bond with their newborn in the early postpartum period [ 56 , 59 , 80 , 82 ]. While this was disappointing for many, one woman described still feeling well-supported, “ we were supposed to have a baby shower, the weekend after everything shut down … definitely got a lot of gifts in the mail and people who drop things off …. [we] feel like even though he’s being born in this super crazy time and he doesn’t necessarily get to meet people in person, that they are excited about him and want to support us” (USA) [ 52 ]. Primiparous women felt that they missed the opportunity to share many “firsts” with extended families - one woman said, “ this is my family’s first grandchild so it just breaks my heart they will miss her whole babyhood” (postpartum, Canada) [ 64 ].

Sub-theme 1.4 : Breastfeeding challenges and triumphs (High confidence)

Women that struggled with the lack of support around breastfeeding said, " when it came time for breastfeeding, I had no idea what to do or any challenges that could come. There were so, so, so many questions and I felt so confused during everything” (postpartum, primiparous, UK) [ 60 ]. Lactation consultations through virtual remote care was considered inadequate by most women [ 51 , 66 , 71 , 73 , 75 ], especially when practical hands-on education and assistance was needed [ 51 , 53 , 72 , 77 ]. These challenges led some women to cease breastfeeding early [ 51 , 62 , 73 ].

Conversely, public health restrictions enforcing women to stay at home allowed some women to practice responsive breastfeeding, without concern for social obligations or visitors [ 51 , 62 , 64 , 71 , 75 , 79 ]. Some women valued this flexibility - “ there’s no right or wrong way. You know, at the end of the day the ultimate goal is that my baby needs to be fed.… you know, feed him breast milk, breast milk, or formula. He’s fed. He’s happy. Sweet. That’s done. Job done! The important thing is actually [to] be kind to yourself, you know?” (postpartum, primiparous, UK) [ 62 ].

Challenges and triumphs were felt by both multiparous and primiparous women [ 51 ]. The difference between experienced and first-time mothers was stark in some studies, highlighted by multiparous women who felt ‘knowledgeable’ and ‘had the experience’, and sharing empathetic messages towards primiparous women with limited breastfeeding support [ 62 , 78 ].However, the lack of face-to-face breastfeeding support meant that first-time mothers and experienced mothers also faced hardships. As one mother recounts her sadness: “ I had virtual appointments [with lactation consultants], which I found totally useless… I was devastated that it wasn’t working with [the new baby] because it was something I was really looking forward to” (postpartum, multiparous, Canada)  [ 73 ].

Theme 2: Navigating changing health policies

The ever-changing nature of the pandemic created periods of uncertainty. Women and their families were expected to accept and adapt to changing health policies which directly impacted their antenatal, labour and birth and postnatal experiences.

Sub-theme 2.1: A birthing experience filled with uncertainty and unknowns (High confidence)

Many women reported that, given the constantly changing policies, they were unsure what to expect for their labour and birth [ 9 , 49 , 60 , 75 , 77 ]. Limitations included not being able to have a water birth, use a bath or the shower, access nitrous oxide gas during labour [ 49 , 74 , 82 ] and others could not have their desired support people present [ 60 , 77 ]. In some cases, women opted for medicalised interventions to retain a sense of control - choosing a caesarean birth to ensure their partner was present at birth [ 60 , 74 ]. Women struggled with the prospect of early discharge, lacking confidence and fearing reduced support at home, with some feeling pushed out of the hospital [ 49 , 53 , 60 , 74 ]. Some women chose to leave hospital early due to the lack of support or poor experiences while in hospital [ 60 ]. Conversely, some women welcomed early discharge, wanting to be away from the hospital and to be reunited with family members [ 62 , 80 ]. Women who tested positive to COVID-19 early in the pandemic described additional challenges, such as a lack of certainty on how care was going to be managed [ 77 ]. They felt this restricted their autonomy over their labour and birth choices.

Sub-theme 2.2: Reduced support and partner presence healthcare settings (High confidence)

Due to the public health restrictions in hospitals, women often missed having their partner and family supports [ 16 , 49 , 57 , 66 , 71 ]. For example, “ one of my coping mechanisms is having my partner there to hear the same things I am hearing because I kind of shut down sometimes when I get too upset. It’s always good to have that second person listening… and walking out with strength of unity ” (pregnant, primiparous, Australia) [ 49 ]. The inability for some women to have their partners present negatively impacted women’s birthing experience [ 53 , 70 , 79 , 80 ], confidence on the postnatal ward and many expressed the sense of being “ robbed of this experience ” (pregnant, UK) [ 75 ].

Sub-theme 2.3: Transitioning to telehealth, virtual and remote care (Moderate confidence)

Public health restrictions limited face-to-face health care appointments with a maternity care provider [ 54 ]. Negative telehealth experiences were expressed predominantly by first-time mothers [ 71 ], with many saying, “ over the phone just doesn’t do it… you don’t get to look into somebody’s eyes and to trust them and for them to say, you’re okay ” (postpartum, Ireland) , adding to their anxieties. This was felt similarly by CALD women as there was a disconnect with health care providers using virtual methods and this was exacerbated for women who were not able to access interpreters [ 80 ]. Positive encounters with telehealth were associated with the increased accessibility to health services and generally preferred by multiparous women [ 54 , 65 , 68 ]. Whilst many were glad that telehealth services were available, this woman highlighted the inequities, “ I think I would question the accessibility of that. Not everyone has a smartphone and expecting people to be able to receive a video call is not necessarily the most inclusive thing ” (postpartum, primiparous, UK) [ 77 ] indicating that some women may have fallen through the gaps of maternity care.

Sub-theme 2.4: Barriers to accessing health services (High confidence)

The closure of so-called non-essential services, such as, physiotherapists, chiropractors, pools and gyms indirectly impacted women [ 66 , 74 ]. This often increased women’s anxiety, stress, feelings of helplessness and frustration [ 16 , 54 , 60 , 74 ] and incidence of postnatal depression [ 82 ]. This also limited opportunities to receive reassurance from healthcare providers, reducing women’s confidence [ 49 , 71 , 72 , 77 ]. Typically, women accessed networks for information and support, such as, family and friends with midwifery clinical expertise, or referred to recent pregnancy experience [ 52 , 68 , 75 , 79 ]. Women had to advocate strongly for physical assessments for themselves and their newborns [ 74 ].

Additionally, women from CALD populations were challenged in accessing culturally appropriate care with changes to interpretation services, “it creates like a…a gap in communication where if something you express is not clearly understood so maybe they could be left with some misinterpretation” (UK) [ 63 ]. Another example of the inequities faced by CALD women was expressed by this woman who did not receive interpretation services during appointments, “ sometimes they explained things to me by using signs and I understand a little English but it’s hard to understand medical terms and they didn’t use an interpreter for this ” (postpartum, multiparous, Canada) [ 80 ].

Theme 3: Adapting to alternative ways of receiving social support

Support networks, such as, family and friends, peer support groups (e.g. mother’s groups), and formal support from maternity care providers provide the foundation for a healthy and positive pregnancy and postpartum period. The COVID-19 pandemic forced women to adapt and seek support in different ways.

Sub-theme 3.1: Accessing support through different avenues (Moderate confidence)

Support from family and friends was accessed in different ways, for example, utilising video call technologies to be able to see faces helped with the grief of not being able to be present [ 16 ]. Women who were able to establish pregnancy and mother’s groups during the pandemic were grateful that they had these supports. Alternatively, women created or sought support through online social media platforms [ 61 , 68 , 70 , 81 ], to share a sense of camaraderie that they were not alone in their experiences [ 52 , 77 ]. In these forums, women shared information about COVID-19 developments, updates to hospital policies, and utilised others as sounding boards for advice. Some women reported greater support from partners who had transitioned to working from home [ 51 , 62 , 64 , 66 , 75 ]. Although virtual technologies allowed women to bridge the gap of social distancing, they wanted the physical connection with others.

Sub-theme 3.2: Desiring connection with family and friends (High confidence)

Women felt they needed intergenerational support to raise their newborns, and this was especially important during difficult times. Many had planned for parents to come and support them [ 81 ], as they believed that, “ the older generation have more experience on what babies need or what they feel… with my other two [children]… they knew exactly what would make them feel better ” (pregnant, multigravida, Australia) [ 49 ]. Some women struggled without the additional support, the lack of sleep impeded their physical wellbeing [ 61 , 73 , 75 ], and the isolation from family impacted their mental health [ 9 , 49 , 56 , 60 , 61 , 73 ]. In some cases, women were able to “ quarantine with family ”, providing women with a “ strong support network ” (postpartum, Canada) as they transitioned into motherhood [ 59 ]. Gradually, as public health restrictions eased, women from the UK felt government responses did not consider new mothers and babies and they called for “social bubbles” for families to receive the additional support [ 62 , 72 ]. The loss of informal support networks was apparent for some CALD women. As this woman said, “it was really hard during COVID. In Syria I had my family… but to give birth here with no one with me?! I needed someone with me, my neighbours, my friends… I felt like I was drowning” (postpartum, multiparous, Canada) [ 80 ].

Theme 4: Dealing with impacts on their own mental health

The COVID-19 pandemic placed a significant toll on pregnant and postpartum women’s mental health at all stages of the pandemic. Public health strategies failed to include protective measures for mental health, as such many women reported increased levels of fear, anxiety, stress, loneliness and depression.

Sub-theme 4.1: Managing anxiety due to virus-related fears and concerns (Moderate confidence)

Women often experienced anxiety exacerbated by the pandemic, for example, “ as a new mom you are already so nervous, so adding a pandemic to that pile of anxiety and worry ” (postpartum, Canada) [ 70 ]. This was related to possibility of infection, particularly in hospital and healthcare settings [ 9 , 56 , 57 , 69 , 82 ], and the need to protect their unborn or newborn baby [ 50 , 72 , 80 ]. Some faced additional challenges as migrants from another country, “ I found it very hard when you’re coming to the country without knowing anyone and the coronavirus, lockdown was very difficult, I was very depressed. I was very anxious… I feel worried a lot ” (UK) [ 63 ].

Sub-theme 4.2: Feeling lonely and isolated (High confidence)

Loneliness and isolation were commonly reported as women faced motherhood alone without their usual support systems. One woman said, “ it was quite sad that I couldn’t even share my pregnancy experience with anyone, and I feel like I missed out ” (postpartum, Australia) [ 54 ]. Feelings of loneliness was especially felt by mothers who were not able to have their partners present during birth or postnatally [ 61 ]. Women were not able to build supportive peer networks in their antenatal and postnatal periods [ 49 , 62 , 73 , 74 , 75 , 78 , 81 ], with one woman saying, “ there’s nothing like just meeting people or, just naturally building friendships when you go to baby groups” (postpartum, multiparous, UK)  [ 62 ] emphasising the importance of developing social relationships. Cancellation of appointments and lack of face-to-face care added to feelings of “ abandonment ” and “ being forgotten ” [ 9 , 60 , 62 , 70 , 72 , 73 ].

Theme 5: Managing new and changing information

Due to the novelty of COVID-19 and lack of information about adverse effects, maternity care services had to rapidly adapt as new data came to light. Women described the need to search, access and filter useful information, a process which was challenging for many.

Sub-theme 5.1: Constantly changing advice and information (High confidence)

The constantly changing advice was distressing [ 82 ]. These changes meant a lot of uncertainty, one woman said, “ at 34 weeks I had a telephone appointment and I tried to ask what the changes in hospitals were, because of COVID and talk about the birth plan. She basically said, ‘everything is changing so quickly there is no point in us even talking about that now. Wait until your next appointment’ ” (postpartum, primiparous, UK) [ 77 ]. This limited women’s ability to adequately plan and prepare for the birth. Some women described following the updates from government officials and hospitals overwhelming [ 66 ]. As restrictions eased, women described the frustrations they had with the slow adaptations by health services, “ when I got to the hospital, they didn’t know about the restrictions having been lifted … That was really frustrating because I was like why? Why does this hospital not know?” (Australia) [ 82 ] and the differences between health services, “ restrictions have still not been lifted in ‘Hospital A’ whereas they have been eased in both ‘Hospital B’ and ‘Hospital C’ ” (pregnant, multiparous, Ireland) [ 9 ].

Sub-theme 5.2: Inadequate information from healthcare providers (Moderate confidence)

Women felt there was not enough information from healthcare providers, “ I think there was a lot of confusion; there was no good communication about what was happening to appointments. You weren’t really sure; were they happening on the phone [telehealth], when were you going to get the call? There was very little communication. So, I always felt a bit uneasy about that… ” (postpartum, primiparous, UK) [ 77 ]. Some information was contradictory [ 60 ] for example, “ I’ve found the disconnect between the information that my GP was getting and that the [hospital] was getting – they weren’t getting the same ” (Australia) [ 82 ]. Women wanted clear information that was easily accessed by the lay person [ 9 , 16 , 54 , 61 , 65 , 66 , 67 , 68 , 75 ]. They also wanted uncertainty to be acknowledged, “ it would have been useful to have some generic information that went out to women in that situation… statements from a medical professional to put people’s minds at ease ” (postpartum, Australia) [ 54 ].

Theme 6: Being resilient and optimistic

Many women were self-reliant and took it upon themselves to remain positive and proactive throughout the perinatal period.

Sub-theme 6.1: Self-help strategies to overcome challenges of the pandemic (High confidence)

Women developed their own strategies to find solace and support [ 77 ]. When asked what advice they had for other women in similar situations, advocacy for oneself was frequently reported [ 66 , 67 , 70 , 71 , 77 , 79 , 81 , 82 ]. In contrast, another woman regretted not voicing her concerns, “ I have naively trusted that the hospital gives me the information I need … Then I realized afterwards that there were many moms who were much angrier than me and said much more; insisted much more… and I simply did not; I regret it a bit ” (postpartum, Norway) [ 67 ]. Women reported coping using different strategies, such as being outdoors and active [ 16 , 52 , 54 ], limiting news and access to social media platforms [ 54 , 69 , 70 , 81 ], seeking professional help [ 58 , 73 ], informing themselves about the virus [ 58 , 71 ], drawing on their own faith and religion [ 52 , 69 ] and self-reassurance [ 50 , 52 , 62 ]. Many complied with public health restrictions, however there were some women that decided their mental health and physical wellbeing was more of a priority and broke public health restrictions to seek support from family and friends [ 62 , 66 , 73 ]. Despite the challenges faced during the pandemic, some women reported high resilience, positive childbirth and postnatal experiences, and feeling empowered by their ability to overcome challenging circumstances [ 54 , 58 , 74 ].

Sub-theme 6.2: Making the most out of the positive encounters (Moderate confidence)

The lack of visitors on the postnatal ward and in homes was described by women as “ pleasant ”, “ relaxing ” and a “ blessing in disguise ” as women were able to recover and establish undisrupted routines with their newborns [ 54 , 71 , 72 ]. A commonly reported positive outcome of limiting social obligations was the ability to establish successful breastfeeding, one woman said, “ I was inundated with visitors with my first child and often could not feed responsively… With my second child, there is none of that pressure and I can really see an enormous difference both is his feeding and in my mental health ” (postpartum, UK) [ 51 ]. Women also described health services as “ peaceful ”, as there were fewer people in waiting rooms, appointments were quick, social distancing was enforced and use of PPE limited the possibility of transmission [ 16 , 49 , 71 , 75 , 81 , 82 ].

Sub-theme 6.3: Information seeking and desire for more information (Moderate confidence)

Women obtained information from official government documents, guidelines released by professional bodies, the news, social media and platforms run by professional academics [ 53 , 66 , 68 , 72 , 81 ]. Reasons to seek information included: to clarify any uncertainties about risk and infection, keep up to date with COVID-19 guidelines and to be informed about changes to hospital policies [ 49 , 52 , 66 , 69 , 77 ]. Even once women were provided with information, poor communication and follow up left women feeling dissatisfied [ 54 ]. One woman shared advice about engaging with different information sources – “ you can’t just trust them – you’ve got to decipher through what’s true and what’s not… Is that actually having a positive influence on me, and my mental and physical health, or not? And if it’s a no, well why am I engaging in this ?” (Australia) [ 81 ].

This QES synthesised data from 36 sampled studies on pregnant and postpartum women’s experiences from high income countries during the COVID-19 pandemic. Findings were categorised under six overarching themes and 17 review findings to understand their experiences as the pandemic unfolded. Women had to navigate the transition from pregnancy to motherhood, whilst also adapting to the complexities of the COVID-19 pandemic. High to moderate confidence was placed in these review findings, indicating the strength of the evidence.

This review highlights that pregnant and postnatal women across high-income countries faced similar yet inherently unique experiences and challenges. During the pandemic, primiparous women faced moderate-to-high prenatal stress levels, as they recounted their first pregnancy experience during a time of significant uncertainty [ 85 , 86 , 87 ]. On the other hand, some evidence highlighted that multiparous women were ‘adaptive’ and felt ‘prepared’ [ 66 , 71 , 77 ]. However this was not experienced universally - many experienced mothers facing difficulties [ 9 , 73 , 80 ]. The COVID-19 pandemic and associated public health restrictions across high-income countries disrupted access and quality of care for many pregnant and postpartum women.

Reduced health service capacity and the transition to remote and virtual care due to pandemic restrictions have been heavily criticised [ 8 , 88 ]. In many contexts, women had not received high quality maternity care during the pandemic and described overtly negative experiences [ 35 , 89 , 90 ]. Women were unable to access usual supports, had limited birth choices and reduced postpartum care which resulted in stress and anxiety. These are clearly widespread experiences, regardless of context, and highlights some of the structural weaknesses and vulnerabilities of maternity care systems. This was evident in the findings for pregnant and postpartum women of culturally and linguistically diverse backgrounds. The lack of culturally appropriate care, including access to interpretation services, doulas and being unable to have their support person present are known to impair maternal health and wellbeing [ 56 , 63 , 80 ]. These factors are key elements of respectful maternity care as they help provide information, enable women’s agency and ensure emotional and social support is available [ 91 , 92 ]. Health restrictions should not limit this service for women during times of unrest, as women and babies thrive in culturally respectful maternity services [ 93 ]. We note however that CALD women continue to be an under-represented group - only three of the 36 sampled studies reported evidence specifically for CALD groups [ 56 , 63 , 80 ]. The lack of diverse perspectives included in the evidence base makes it more difficult for culturally sensitive and community-responsive policies to be developed. Further research with women from diverse backgrounds are warranted to ensure they are not unduly disadvantaged in future pandemics [ 94 ].

A key finding was the reduced presence of partner and social support throughout the pregnancy and postpartum periods. Partner support and strong connections with extended support networks reduces stress and anxiety, and can be a positive influence on the woman and her experience [ 95 , 96 , 97 ]. In the trade-off between the risk of transmission and spread of disease, expectant fathers and partners were frequently left out [ 98 , 99 ]. Similarly, studies of families and partners of intensive care unit patients during the COVID-19 pandemic reported being physically and emotionally unable to support partners and families [ 100 , 101 ]. Close family members are essential to the recovery of patients upon discharge and partners are integral to a safe and positive pregnancy, intrapartum and postpartum experience for mothers. To ensure that maternity care services can adequately respond in the future, recommendations for some degree of flexibility for women given the long-term psychosocial impact that a negative experience would have on the woman and family unit has been sought [ 8 , 87 , 88 ].

Pregnant and postpartum women’s experiences were not universally negative. Another key finding in this review highlights the resilience and optimism that some women felt. Some women perceived this time as a “blessing in disguise” – referencing the ability to stay at home, having fewer disruptions to breastfeeding, and embracing newfound time as a family unit [ 64 , 66 , 71 ]. Coping strategies reported in this study are supported by other evidence of protective factors against stressors of the COVID-19 pandemic [ 102 , 103 , 104 ].

Maternity care services need to continue delivering care during public health emergencies. There is no possibility of delaying or postponing care; and women require care over an extended period of time. Enforced lockdowns limited movement and fear of contracting the virus in hospitals lead to delays in healthcare seeking (e.g. when there is reduced fetal movements). The pandemic altered the provision of services and women’s access to care and, as a result, some countries have reported changes to the incidences of stillbirth and preterm birth [ 105 , 106 , 107 ].

Understanding women’s experiences, their preferences and satisfaction with maternity care services are essential to a safe and positive pregnancy, labour and childbirth and postpartum period. Many maternity models of care such as woman-centred and midwifery-led care places the woman at the centre of care and her experience, focusing on woman’s health needs, expectations and aspirations [ 108 , 109 ]. These models have proven to return high levels of satisfaction and are beneficial to the psychological and physiological recovery of the woman [ 110 , 111 ]. The COVID-19 pandemic has disrupted these models of care for women who were pregnant and gave birth during the pandemic. Pressures on the maternity care system and service delivery did not facilitate the midwife-woman relationship, resulting in poorer clinical outcomes [ 112 ]. Supporting women throughout their perinatal period is essential so women and their babies are able to emerge from the experience feeling prepared, safe and satisfied [ 113 , 114 ].

Moving forward, as maternity care systems adapt to a post-pandemic structure, considerations need to be made to ensure maternity services can adequately respond to future health crises. Our QES has shown that the impacts of COVID-19 went far beyond the direct impacts on women who were infected with SARS-COV2. All women giving birth over the pandemic, especially in the first two years, were indirectly impacted and as a result experienced a lack of autonomy during their pregnancy and childbirth, barriers to accessing face-to-face care and loss of social supports. This highlights the need to consider women’s views and experiences in developing policies for future responses to pandemics or public health emergencies.

We recommend that policy makers and maternity care services should: 1) optimise care delivery to maintain face-to-face care when possible and facilitate the presence of chosen support people; 2) enhance communication channels between maternity care services and women to minimise misinformation, stress and anxiety; and 3) support social and mental wellbeing to ensure women have access to adequate social support and mental health services are well resourced.

Strengths and limitations

The rigorous and systematic methodology of this QES in selecting studies for inclusion allowed us to analyse experiences of a heterogenous cohort of pregnant and postpartum women during the COVID-19 pandemic. When we started the review, the abundance of published work of women’s experiences was overwhelming, therefore strict eligibility criteria were used to ensure that findings could be obtained and compared across studies. This study was therefore limited to experiences of women in high-income countries and cannot be generalised to low- and middle-income countries.

Studies were subject to a sampling framework to ensure that a diverse, yet data rich sample of studies contributed to the development of review findings. This had its own set of limitations as the sampling framework is not a validated tool and may be biased by the user’s own interpretation. Additionally, the search strategy was limited to the first two years of the pandemic. While it is possible research was published outside of this two-year period, we felt that it was unlikely that different experiences would be reported. An updated search (December 2022) was conducted to determine if any new themes emerged, however no new themes emerged and therefore did not warrant the addition of any new studies. Almost all studies that used interviews to collect qualitative data did so via remote methods. Telephones and video conferencing tools were popular methods to conduct interviews, adhering to social distancing guidelines. Whilst this increased accessibility for participants from diverse geographical locations, there may be concerns about the depth of data obtained and exclusion of participants that are unable to access these technologies. A further consideration is the limited number of studies exploring the experiences of women from diverse backgrounds. This prevented us from more critically examining what factors and circumstances shape women’s experiences and responses.

Women’s pregnancy and postpartum experience during the COVID-19 pandemic showcased similarities despite different contexts. This QES has collated the experiences of women from high income countries sharing insight into the challenges faced and resilience of pregnant and postpartum women. The COVID-19 pandemic has exacerbated many systemic shortfalls of the maternal and newborn health system – a system that is essential to the health and wellbeing of women and babies. The review findings have highlighted areas within this period where strategies to inform policy and practice could be optimised to allow for better access to care and support for women in their journey to motherhood. Future pandemic preparedness strategies need to maximise face-to-face care, optimise communication channels to combat misinformation and anxiety, include a flexible approach to public health restrictions for women and their families by allowing formal and informal support networks to be readily available and accessible, and to ensure maternal mental health is a priority.

Availability of data and materials

All data generated or analysed during this study are included in this published article [and its supplementary information files]. Additional information is available from the corresponding author on reasonable request.

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The primary author is funded by Deakin University Postgraduate Research Scholarship as a PhD Candidate. AB is supported by the Australian Government Research Training Program, CSEH is supported by the Australian National Health and Medical Research Council Leadership Investigator Grant, and JPV is supported by the Australian National Health and Medical Research Council Emerging Leadership Investigator Grant. The funding bodies had no role in the conceptualisation of the study design and data collection, data analysis, interpretation and writing of the manuscript.

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Annie Tan, Amanda Blair, Caroline SE. Homer & Joshua P. Vogel

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AT: Conceptualisation, Methodology, Data Collection, Formal Analysis, Writing – Original Draft. AB: Secondary Reviewer, Data Collection, Formal Analysis, Writing – Reviewing and Editing. RD: Supervision, Data Analysis, Writing – Reviewing and Editing. JPV: Supervision, Data Analysis, Writing – Reviewing and Editing. CSEH: Supervision, Data Analysis, Writing – Reviewing and Editing. TB: Primary Supervision, Methodology, Data Analysis, Writing – Reviewing and Editing. All authors read and approved the final manuscript.

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Tan, A., Blair, A., Homer, C.S. et al. Pregnant and postpartum women’s experiences of the indirect impacts of the COVID-19 pandemic in high-income countries: a qualitative evidence synthesis. BMC Pregnancy Childbirth 24 , 262 (2024). https://doi.org/10.1186/s12884-024-06439-6

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Building public engagement and access to palliative care and advance care planning: a qualitative study

• Rachel Black   ORCID: orcid.org/0000-0001-8952-0501 1 ,
• Felicity Hasson   ORCID: orcid.org/0000-0002-8200-9732 2 ,
• Paul Slater   ORCID: orcid.org/0000-0003-2318-0705 3 ,
• Esther Beck   ORCID: orcid.org/0000-0002-8783-7625 4 &
• Sonja McIlfatrick   ORCID: orcid.org/0000-0002-1010-4300 5  

BMC Palliative Care volume  23 , Article number:  98 ( 2024 ) Cite this article

Metrics details

Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required.

Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted ( n  = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement.

Three themes were generated from the data: “Visibility and relatability”; “Embedding opportunities for engagement into everyday life”; “Societal and cultural barriers to open discussion”. Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement.

Conclusions

Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

Peer Review reports

It is estimated that globally only 14% of patients who require palliative support receive it [ 1 ]. The World Health Organisation (WHO) advocates for palliative care (PC) to be considered a public health issue and suggests earlier integration of PC services within the wider healthcare system is required [ 2 ]. However, research has shown that a lack of public knowledge and misconceptions about PC may deter people from accessing integrative PC services early in a disease trajectory [ 3 ]. Integral to good PC is the facilitation of choice and decision-making, which can be facilitated via advance care planning (ACP). Evidence suggests that ACP can positively impact the quality of end of life care and increase the uptake of palliative care services [ 4 ]. While ACP is commonly associated with end of life (EOL) care, it provides the opportunity for adults of any age to consider their wishes for future care and other financial and personal planning. However, there is evidence of a lack of active engagement in advance care planning (ACP) [ 5 ]. Recent research exploring knowledge and public attitudes towards ACP found just 28.5% of participants had heard the term and only 7% had engaged in ACP [ 6 ]. Barriers to engagement in ACP discussions have been found to include topics such as death and dying are considered a social taboo, posing an increased risk of distress for loved ones; and [ 6 ] a misconception that ACP is only for those at the end of life rather than future planning [ 7 ]. Therefore, there is a need for a public health approach to ACP, to enable and support individuals to engage in conversations about their wishes and make decisions surrounding their future care.

The need for a public health approach to PC, to tackle the challenges of equity and access for diverse populations, was noted in a recent Lancet paper [ 8 ]. This is further supported in a recent review, exploring inequalities in hospice care in the UK, Australia, New Zealand, and Canada which reported that disadvantaged groups such as those with non-cancer illnesses, people living in rural locations and homeless individuals had unequal access to palliative care [ 9 ]. They postulated that differing levels of public awareness in what hospice care provides, and to whom, was an influencing factor with variations in health literacy and knowledge of health services being present in both minority and socioeconomic groups [ 9 ].

Changes in how we experience death and dying have resulted in a shift away from family and community settings into healthcare settings. The Lancet commission exploring the ‘Value of Death’, suggests it has created an imbalance where the value of death is no longer recognised [ 10 ]. The commission’s report posits the need to rebalance death, dying and grieving, where changes across all death systems are required. This needs to consider how the social, cultural, economic, religious, and political factors that determine how death, dying, and bereavement are understood, experienced, and managed [ 10 ].

New public health approaches that aim to strengthen community action and improve death literacy, through increased community responsibility are reflected in initiatives, such as ‘Compassionate Communities’ and ‘Last Aid’ [ 11 , 12 ]. However, a suggested challenge is the management of potential tensions that are present when attempting to conceptualise death in a way that mobilises a whole community [ 13 ]. Whilst palliative care education (PCE) can be effective in improving knowledge and reducing misconceptions, many PCE intervention studies, have focused on carers and healthcare professionals [ 14 ]. Initiatives such as ‘Last Aid’ attempt to bridge this gap by focusing on delivering PCE to the public, however, they are not embedded into the wider social networks of communities. It can be argued that public health campaigns, such as these are falling short by neglecting to use the full range of mass media to suit different ages, cultures, genders and religious beliefs [ 15 ]. Consequently, to understand what is required to engage the public successfully, the voice of the public must lead this conversation. Therefore, this study sought to explore public views on strategies and approaches to enable engagement with palliative care and advance care planning to help share future debate and decision making.

Within the last decades the delivery of PC and ACP have been increasingly medicalised and viewed as a specialist territory, however in reality, the care of those with life-limiting conditions occurs not only within clinical settings but within a social structure that affects the family and an entire community [ 16 ]. Therefore, death, dying and bereavement involve a combination of social, physical, psychological and spiritual events, therefore, to frame PC and ACP within a public health approach the response requires a shift from the individual to understanding the systems and culture within which we live. The Social Ecological Model (SEM) recognises the complex interplay between individual behaviours, and organisational, community, and societal factors that shape our acceptance and engagement. SEM provides a framework to understand the influences affecting engagement with PC and ACP and has been utilised as a lens through which the data in this study is explored.

Qualitative research, using semi-structured interviews were adopted as this enabled an in-depth understanding of public views on strategies to enable engagement with PC. This research was part of a larger mixed-methods study [ 17 ]. Comprehensive Consolidated Criteria for Reporting Qualitative research (COREQ) were used [ 18 ](See Supplementary file 1 ).

A purposive random sampling method, using a random number generator, was adopted to recruit participants who consented to be contacted during data collection of a larger mixed methods study. Selected individuals were contacted by telephone and email to invite them to participate. Inclusion and exclusion criteria are outlined in Table  1 . Interested individuals were provided with a participant information sheet detailing the aims of the study and asked to complete a consent form and demographic questionnaire.

A total of 159 participants were contacted, 105 did not respond, 21 declined and three were ineligible to participate. A total of thirty participants consented, however, two subsequently opted to withdraw prior to the interview.

Data collection

Data was collected from December 2022 to March 2023 by RB. The qualitative interview schedule comprised four broad topic areas: (1) participants’ knowledge of PC and ACP; (2) sources of information on PC and ACP and current awareness of local initiatives for public awareness; (3) knowledge of accessibility to PC and ACP and (4) future strategies for promoting public awareness of PC and ACP, with a consideration of supporting and inhibiting factors. The interview schedule was adapted from a previous study on palliative care to incorporate the topic of ACP [ 3 ] (See Supplementary file 2 ). This paper reports on future strategies.

Participants were asked to complete a short demographic questionnaire prior to the interview to enable the research team to describe the characteristics of those who participated. These questions included variables such as age, gender, religion, marital status, behaviour relating to ACP and experience of PC.

Data was collected via online interviews conducted using the videoconferencing platform Microsoft Teams. Interviews lasted between 20 and 60 min and were recorded with participant consent. Data were stored on a secure server and managed through NVivo 12 Software.

Data analysis

Qualitative data were transcribed verbatim automatically by Microsoft Teams and the transcripts were reviewed and mistakes corrected by the interviewer. All identifying information was removed. Transcripts were analysed using reflexive thematic analysis which involved a six-step process: familiarisation, coding, generating initial themes, developing and reviewing themes, refining, defining and naming themes, and writing up [ 19 ]. Themes were derived by exploring patterns, similarities and differences within and across the data in relation to participant’s views on the promotion of PC and ACP and the best ways to engage the public in open discussions.

The study explored the data through a SEM lens to provide a holistic framework for understanding the influences surrounding health behaviour change in relation to palliative care and advance care planning by mapping the findings to each of the SEM constructs.

The SEM for public health was conceptualised by McLeroy et al. [ 20 ]., and was based on previous work by Bronfenbrenner’s ecological systems theory [ 21 ]. The SEM looks to identify social-level determinants of health behaviours [ 22 ]. Five factor levels have been identified within the SEM; (1) Intrapersonal factors (2) Interpersonal processes (3) Institutional factors (4) Community factors and (5) Public policy [ 20 ]. In short, the SEM suggests that the social factors that influence health behaviours on an individual level are nestled within a wider complex system of higher levels. Current research literature has explored SEM as a model for understanding barriers and facilitators to the delivery of PC, adults’ preferences for EOL care and older adults’ knowledge and attitudes of ACP within differing socioeconomic backgrounds [ 23 , 24 , 25 ]. It has demonstrated the importance of a multilevel approach within these populations. However, there is a scarcity of research exploring strategies for public engagement with PC and/or ACP which are underpinned by SEM theory.

To ensure rigour in the analysis four members of the research team (RB, SM, FH, EB) independently reviewed the transcripts and were involved in the analysis and development of themes as a method of confirmability [ 26 ].

Ethical approval was gained from the University Research Ethics Filter Committee prior to commencing data collection. Participants provided written informed consent prior to the commencement of the interviews. They were advised of their right to withdraw, and the confidentiality and anonymity of all data were confirmed. All data was kept in accordance with the Data Protection Act (2018) [ 27 ].

All participants were white; 70% were female (n-19) and 70% were either married or cohabiting (n-19). The largest proportion of the sample 44% was aged under 50 years (n-12), with 22% aged between 50 and 59 (n-6) and 33% (n-9) aged between 60 and 84. Over half of the sample was employed (n-15), 15% were self-employed [ 4 ] whilst 26% were retired (n-7). Demographic data were missing for one of the included participants (see Table  2 ).

Responses to questions relating to ACP knowledge and behaviours found just 12 participants had heard of the term ACP prior to completing the Northern Ireland Life and Times Survey. Furthermore, none of the participants had been offered the opportunity to discuss ACP and none had prepared a plan of their wishes and preferences.

Main findings

Three overarching themes were generated from the data: ‘Visibility and relatability’; ‘Embedding opportunities for engagement into everyday life’; ‘Societal and cultural barriers. These findings were then mapped to the five social ecological model (SEM) levels ( individual; interpersonal; institutional; community; and policy ) to demonstrate the importance of a multilevel approach when seeking to engage the public around PC and ACP. See Fig.  1 for SEM construct mapping.

Theme 1: visibility and relatability

This theme relates to the suggestion that social taboo was a barrier to awareness and the mechanism to ameliorate this was visibility – in turn promoting reduction of stereotypes and promoting understanding and engagement. This posits the idea that the lack of understanding of PC is the root cause of much of the stigma surrounding it. The SEM construct mapping suggests a multilevel approach is required with intrapersonal (increased individual understanding), interpersonal (openness in discussion with friends and family through media normalisation) and institutional (health service policies for promotion and support) levels being identified.

Participants discussed how there is a lack of knowledge on what PC is, with many assuming that it was for people in the latter stages of life or facing end of life care. This highlighted the lack of individual education with participants suggesting that there should be more visibility and promotion on PC and ACP so that individuals are better informed.

“So, it’s really um there needs to be more education, maybe, I think around it. So that people can view it maybe differently or you know talk about it a bit more. Yeah, probably demystifying what it is. This is this is what it is. This isn’t what it is. You know, this isn’t about um, ending your life for you, you know. And this is about giving you choices and ensuring that you know, you know people are here looking after you”(P37538F45) .

However, there was a recognition that individual differences play a part in whether people engage in discussions. A number of participants explored the idea that some people just don’t want to talk about death and that for some it was not a subject that they want to approach. Despite this, there was a sense that increasing visibility was considered important as there will still be many people who are willing to increase their knowledge and understanding of PC and ACP.

“I can talk about it, for example, with one of my sisters, but not with my mom and not with my other sister or my brothers. They just refuse point blank to talk about it…. some of them have done and the others have started crying and just shut me. Shut me off. And just. No, we don’t want to talk about that. So, it just depends on the personality, I suppose” (P14876F59) .

The lack of knowledge and awareness of PC and ACP was suggested to be the attributed to the scarcity of information being made available at a more institutional level. For some participant’s, this was felt to be the responsibility of the health service to ensure the knowledge is out there and being promoted.

“I think people are naive and they know they’re not at that stage and they don’t know what palliative care is, you know. It’s all like it’s ignorance. But our health service is not promoting this. Well in my eyes, they’re not promoting it whatsoever. And they should, they should, because it would help a hell of a lot of people ” (P37172M61). “I and I think it needs to be promoted by the point of contact, whether it’s a GP, National Health, whatever it might be, I think when they’re there, there needs to be a bit more encouragement to have that conversation” (P26495M43) .

The lack of visibility within the general practice was discussed by several participants who said that leaflets and posters would be helpful in increasing visibility. One participant went as far as to say that a member of staff within a GP surgery would be beneficial.

“I suppose the palliative care because it is a bit more personal. There should be even maybe a professional that you could talk to in your GP practice, or you know, like they have mental health practitioners now in GP practices. Maybe there are I don’t know if there is or not, but there should be maybe a palliative health practitioner that talks to people when they are at that stage of their life” (P21647F29).

Participants also noted how there were generational differences in how people accessed health information. Many of the participants suggested that they would turn to the internet and ‘google’ for information, however, the suggestion was made that care should be taken to target awareness campaigns to different age groups via different methods to reduce disparities in technology skills such as those with less computer literacy.

“ I think a certain proportion of society need the visibility because they’re not always going to be self-sufficient enough to jump on the Internet even though you know we’re getting to the point now where the generational thing is. The generation have been brought up with the Internet and they’re obviously they go to it as the first point of call. But we still got the generation at the moment that don’t”. (P25046F-)

One of the participants talked about ways to increase visibility via the use of the media, including social media, and the utilisation of famous faces.

“Yeah, I think you know, they need to discuss it on Loose Women. You know, morning TV need to get on the bandwagon….But you know. It only takes like that one celebrity to mention it and then the whole media is jumping on the bandwagon.” (P19874F-) .

The UK media coverage of other successful campaigns such as those highlighting mental health and bowel cancer were noted to have been particularly helpful in raising awareness.

“if I think myself about the whole exposure that we have and as a society at the minute about mental health in general, you know a lot of the work on that has been done via social media. You know, celebrities hash tagging and talked about their experience. It’s OK to not be OK etcetera. And I feel like that is responsible for a lot of people who are now discussing their mental health” (P21647F29) .

The sentiment expressed in the above quotes regarding increased visibility in the media also suggests that unless a topic seems relevant to an individual then they won’t engage with health promotion. This concept of relatability pertains to those aspects of human empathy where they can place themselves within a situation leading it to become more relevant to them.

Many participants discussed that using real-life stories on television and in campaigns would be an effective way to connect with the public and it would make PC and ACP more relatable and highlight the importance of thinking about it.

“I think always what tends to be most effective is when it’s somebody that we could all relate to telling their own story (…)……I’m not too sure I know enough about what it involves, but really, like the consequences, that the consequences that people have suffered from not having done that. Not knowing what the wishes were, not having planned for it”. (P32288F62)

Several participants discussed how the topics of PC and ACP were not something they would identify with as being relevant to them. The suggestion was that without it being an immediate concern, for example, if they were not approaching a certain age, then they would assume that they did not need to increase their knowledge about what PC or ACP involves.

“You have to be able to relate to it in order to think, oh, yeah, that applies to me. You need to have something in which you identify with”. (P13697F51)

Theme 2: embedding opportunities for engagement into everyday life

Throughout the discussions, there was evidence that participants felt that death literacy could be increased by providing more opportunities to gain knowledge about planning for future care and what PC involves. Education was highlighted as a potential pathway to engaging the public by targeting appropriate age groups and professions with relevant knowledge and skills. For some, this was thought to be best achieved through educating the youth and for others, the importance of educating those who are working in the healthcare profession was particularly salient. In addition, almost half of the participants suggested they would approach charity organisations for information, with participants advocating for education within secondary and tertiary levels and within community organisations. This data reflects an institutional-level construct within the SEM framework.

Educating younger generations on the topics of PC and ACP through open discussions in schools, and providing skills on how to have difficult conversations with loved ones were seen to be a valuable strategies.

“ young people don’t have that ability to accept and admit and bring it out into the open and I think they need to be perhaps encouraged more to do that through some kind of teaching in the school environment when they’re at a young and impressionable age ”. (P25046F-)

Due to the difficulties around having conversations about death, it was suggested that different healthcare professionals should be trained to have conversations with their patients.

“Yeah, it’s like you think the discussions are difficult to broach for maybe health care professionals that you know, a difficult topic even for them to bring up. Well, if you’re working with someone who’s you know with a family and where things are quite distressed and very often it can be either, it can be the stress can cause a lot of friction and you know, decision making can be very difficult for people…., but just at every level, there’s, you know, possibility to be having conversations like that with people.”(P37538F45) . “I suppose you could think about training some care professionals (…) there may be some way that as a second part of the person’s job or whatever that they’re trained so that people could go along and discuss ” (P19265F76) .

Further to education for young people and healthcare professionals, there was the recognition that community organisations are perfectly positioned to educate the public in PC and ACP. One participant highlighted the missed opportunity to educate family members and carers through an existing programme on dementia. This is particularly pertinent to ACP due to the impact of cognitive decline on decision-making.

“I went to zoom meetings for four weeks in a row with the Alzheimer’s Society. Umm regarding things to do with dementia. And you know, there was a week about your finances and things like that. I suppose. They never really talked about end of life care you know that sort of thing. Um I suppose it would have been useful had they you know, broached that subject as well. But it wasn’t, you know, there was more about looking after yourself, looking after the person. The symptoms of dementia and all this sort of thing, Alzheimer’s and then you know, um the financial and the help available to you. You know, but they didn’t mention about the end-of-life care and like the end result of dementia, I guess, is death. So, you know that that subject, you know, I was, I suppose to just those organizations that deal with um the issues of, like dementia or, as you say, all the rest for, you know, the rest of the diseases and that. You know to be up front and honest and say you know where this can lead and to make people you know, make people aware that there is a palliative care process that can be gone through.” (P19874F-) .

Furthermore, the option of a helpline was suggested with reference made to other successful charity helplines such as the National Society for the Prevention of Cruelty to Children (NSPCC) and The Samaritans. Whilst it was acknowledged there were specialist support services available for people living with a terminal diagnosis, there was a sense that a generic information support helpline would be helpful.

“You know, people need to be (aware)… they’re not alone. There is help out there. You know, you see your helpline, your children, NSPCC, your Samaritans. All on all these helplines, I have to think, I’ve never seen a helpline for palliative care or who you can contact. You don’t see things like that.” (P22964F52) .

In addition to education, the suggestion that embedding ACP discussions into other more common aspects of future planning such as will making, and organ donation was postulated as a potential way to engage the public. This demonstrated clear links to the policy and institutional level constructs within SEM. Changes within organisational policies and public law to support individuals to consider future planning would promote better engagement on a wider societal level.

Participants suggested that they would like to see some of the conversations surrounding ACP introduced into workplace policies and guidelines, as well as through other legal discussions. They noted that conversations surrounding future planning already occur when discussing legal wills and workplace pensions. The potential to expand these discussions to include ACP with solicitors and in workplaces was seen to be a missed opportunity.

“So maybe um around people who are making their wills and you know, you get will making services advertised and things like that. And I think once you get into your 30s and 40s, people start thinking about a will and things like that. So maybe aligned to something like that, you know would get younger people.” (P13790F67) . “when people talk about the pension, you know so retirement, you know, to make people aware about this as well. You know, I would say that’s probably good ways to reach people” (P21263M54) .

Current legislation and promotion regarding organ donation were discussed as being successful in engaging the public and therefore implied that the government should take a more active role in the promotion of ACP.

“If you look at the way, sort of, government have been promoting like organ donation and that. You know that sort of thing. And then people have really bought into it and you know, and there’s a lot of positivity around it. So, I think that’s sort of similar approach would be good”. (P29453F40) “You know, people talking about pension, pension plans and so on and it’s part of the natural life circle, you know. So, if it’s in connection with this, you know, so think about your future, make your plans …so probably in connection with organ donation and so on, you know, so I think they could be trigger points, you know,, people talking about this.” (P21263M54) .

Theme 3: societal and cultural barriers to open discussion

In conversations surrounding why there was a lack of openness in discussion, participants postulated that a potential factor was the influence of cultural and societal norms. This was found to overlap in the SEM levels of intrapersonal, interpersonal and community.

Rural farming communities were highlighted as potentially being more isolated and traditional in their views around death and dying, whilst those with strong religious beliefs were seen to be less likely to engage in discussions.

“You know, and there is a, I’m out in the countryside. Well, it’s (place name). So it’s a relatively rural sort of conservative place and it and it’s that… you know you’re tied to the land, you’re tied to the farm. This is your home and sending you away from it early it is seen as a bit of a shameful thing. So yeah, to try and educate folk and to try and speak into that I think would be really helpful because again, I’ve seen situations where probably the individual’s life, the end of life, has been made tougher because the family have fought to keep that person at home.…. We’re going to try and do it ourselves” (P26495M43) . “I think it’s probably a lot to do with religion more than likely because people just like to hear, because we still are very much, you know, a lot is dictated by religion. So, people just want to leave stuff in God’s hands so they don’t want to have like…that would be the kind of where my mom and dad are coming from, you know, don’t interfere with it, blah blah blah. So, it’s a very gentle like kind of reminding them, you know, well, I think we do need to think about it. And I think people are afraid that they’ll make again that um it’s kind of euthanasia you know what I mean” (P37538F45) .

Cultural differences between countries were also considered with some seeing other global communities approaching death as a celebration rather than something to shy away from.

“I think in Northern Ireland we are, and the UK and probably the world in general. We are really poor at talking about, about death, and it has to be a positive thing to be able to talk more about death. You look at other cultures where you know. Death is treated differently, you know, even in Africa things where, you know, it’s a real celebration, whereas it’s seen so differently in in Northern Ireland” (P31154F35) .

Furthermore, regions and countries that have experienced war and conflict were perceived by one participant as a potential barrier to engaging in subject matters which involve death.

“I don’t I don’t know about other countries, but those that grew up maybe during the conflict here, maybe it’s just something that, you know it’s it’s a completely different mindset to them” (P23609M39) .

Whilst it is unclear from the data why the participant felt the conflict might inhibit engagement with the subject of dying, it could be interpreted that the participant was suggesting that death is too morbid to engage with following a conflict period which saw numerous deaths. An alternative interpretation could be that people are desensitised to death and do not see death as something that an individual has autonomy over.

It was noted that in many modern societies communities are changing. People no longer interact with their neighbours in the way they used to which results in a reduced sense of community responsibility.

“I don’t know that everyone is as neighbourly as they used to be. Northern Ireland I always perceived as being open door policy and everybody looked out for everyone else. But I think as a society has changed and it has changed in Northern Ireland, and it’s become becoming more closed (…) So I think we need to try and encourage that community um experience back again so that people are mindful of their neighbours and share that responsibility and making sure that everyone’s OK” (P25046F) .

This sense of social isolation was discussed by one participant who referred to homeless people. They reflected on how current social structures may not be providing the information and support to this minority group and therefore should be considered when developing public health approaches to engaging them in PC and ACP education.

“And if you look at homeless people on the streets, where do they get the information from? Where do they get the care, the information, the attention. I know there are Street workers that work, but I don’t know again to what extent in Northern Ireland compared with the likes of London” (P25046F) .

Mapping the findings to a social ecological model framework

Following thematic analysis each of the resulting themes were mapped to the five socioecological levels identified by McLeroy et al. (1988) for health promotion programmes. Construct mapping can be found in Fig.  1 below.

Thematic interaction within the Social Ecological Model levels

The findings from this study highlight the complexity of current public perceptions of palliative care and their views on effective engagement with PC and ACP. Within medicalised western culture there is a tendency to focus on the preservation of life, with conversations about death avoided. This has resulted in death becoming a taboo, raising fear and stigma where death is equated with failure. These social taboos that exist around death, dying and bereavement are posited to stem from the lack of awareness and understanding of PC and ACP and the resulting stigma of approaching these discussions. There was evidence of influencing factors on all SEM levels, which demonstrates the need for a multifaceted public health approach that uses not only behaviour change communication but also social change communication, social mobilisation and advocacy. It can be argued this reflects the key aspects outlined in Lancet Commission report on ‘Valuing Death’, which advocated for a ‘systems approach’ [ 10 ]. This systems approach is aligned to differing levels within the SEM and the different approaches the public have identified when seeking to build public engagement and access to palliative care. Three key aspects were noted: visibility, embedding opportunities for engagement in everyday life and societal and cultural influences.

It was clear from the analysis that a major factor associated with poor public engagement was the lack of visibility within the public domain, which was hindering both the normalisation of death and understanding that PC was more than just end of life care. The findings demonstrated different ways to address the lack of visibility, such as the use of targeted social media and wider publicity campaigns. Research to date has demonstrated that palliative care education is a useful tool in improving knowledge of, confidence in and attitudes towards palliative care amongst healthcare professionals and carers [ 14 ]. Similar results have been noted for the public when exploring the potential to promote palliative care through various media challenges such as YouTube and social media [ 28 ]. This does, however, raise questions around the quality and accuracy of information offered via the media, taking cognisance of whether some of the messaging may inadvertently be adding to misunderstanding, and thus a lack of public engagement.

Secondly, the findings indicated that experience at the individual level within a social context was noted as an important element when seeking ways to increase public engagement with PC and ACP. The experience of illness, dying and loss is often overlooked, therefore, this points to the potential value of community-based education approaches, with peers enabling experience-based exchange. Such interventions have been noted in the literature on the role of volunteers and education [ 29 ]. This reflects the need for an overall public health palliative care approach that seeks to empower individuals, families and communities to draw on their own resources and community supports to adapt and cope with death and dying [ 6 , 30 ].

Thirdly, the findings from this study indicated the need for enhancing opportunities for engagement in PC and ACP within everyday life. Research indicates there is an appetite for people to talk about death, for example, in the UK, a recent YouGov ‘daily question’ survey reported 67% of adults who responded think the subject of death and dying should be talked about in schools [ 31 ]. This speaks to the need to consider schools, workplaces and key trigger points in life as times to consider engagement with PC and ACP. This reflects the overall need for death literacy in society to improve experiences at the end of life [ 10 ].

Finally, the importance of socio-cultural aspects for the public cannot be underestimated. Therefore, effective communication strategies need to be tailored to individuals, and communities and be culturally appropriate. This has been noted as an important aspect for specific communities, such as the Chinese diaspora, for example, but nuances around this for specific ethnic, political, religious, and geographical aspects need further consideration [ 32 ]. Cultural competence, defined as an understanding of how culture affects an individual’s beliefs, values and behaviour, is an important consideration [ 33 ]. A meta-analysis of 19 review articles, concluded that interventions to increase cultural competence in healthcare were effective in enhancing the knowledge, skills and attitudes of healthcare providers, leading to clinical benefits for patients/clients through improved access and utilization of healthcare [ 34 ]. The translation of such reviews for public engagement in PC and ACP warrants further exploration. It has been advocated that elements of cultural systems should be analysed with a socio-ecological framework [ 35 ]. Such consideration and integration of salient contextual cultural factors could assist public messaging and cultural communication, which would enhance more effective and sustainable public engagement in PC and ACP.

Limitations

When considering potential limitations, it is pertinent to note that due to the sensitive nature of the topic the exclusion criteria restricted the sample to those who had not experienced a recent bereavement. This may have limited the ability to gain a wider perspective, as the views of the recently bereaved may have provided further nuanced insights into how best to engage the public. Furthermore, the participant sample was limited to those involved in a larger mixed-methods study. This may have introduced bias in relation to true knowledge and attitudes due to the participants having completed the survey questionnaire prior to the interviews.

In conclusion, this qualitative study has provided insights into how the public would like to be engaged in PC and ACP. The findings highlighted that to build public engagement and access to palliative care and advance care planning a multifaceted public health approach is required. Discussions of death and dying remain difficult for many members of society, therefore, an increase in death literacy across all systems to reduce misperceptions surrounding PC and APC is needed, by increasing visibility and providing opportunities for the public to engage with PC and ACP within everyday life. Finally, socio-cultural aspects need consideration when developing strategies to ensure effective communication and engagement with all members of the community.

Data availability

The datasets analysed are not publicly available but are available from the corresponding author upon reasonable request.

Abbreviations

Advance care plan

• Palliative care

Palliative care education

Social ecological model

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Acknowledgements

The authors would like to thank all interviewees for their participation in the research.

This study was funded by HSC R&D Division of Public Health Agency in Northern Ireland.

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Black, R., Hasson, F., Slater, P. et al. Building public engagement and access to palliative care and advance care planning: a qualitative study. BMC Palliat Care 23 , 98 (2024). https://doi.org/10.1186/s12904-024-01420-8

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Qualitative Data Analysis for Health Services Research: Developing Taxonomy, Themes, and Theory

To provide practical strategies for conducting and evaluating analyses of qualitative data applicable for health services researchers.

Data Sources and Design

We draw on extant qualitative methodological literature to describe practical approaches to qualitative data analysis. Approaches to data analysis vary by discipline and analytic tradition; however, we focus on qualitative data analysis that has as a goal the generation of taxonomy, themes, and theory germane to health services research.

Principle Findings

We describe an approach to qualitative data analysis that applies the principles of inductive reasoning while also employing predetermined code types to guide data analysis and interpretation. These code types (conceptual, relationship, perspective, participant characteristics, and setting codes) define a structure that is appropriate for generation of taxonomy, themes, and theory. Conceptual codes and subcodes facilitate the development of taxonomies. Relationship and perspective codes facilitate the development of themes and theory. Intersectional analyses with data coded for participant characteristics and setting codes can facilitate comparative analyses.

Conclusions

Qualitative inquiry can improve the description and explanation of complex, real-world phenomena pertinent to health services research. Greater understanding of the processes of qualitative data analysis can be helpful for health services researchers as they use these methods themselves or collaborate with qualitative researchers from a wide range of disciplines.

Qualitative research is increasingly common in health services research ( Shortell 1999 ; Sofaer 1999 ). Qualitative studies have been used, for example, to study culture change ( Marshall et al. 2003 ; Craigie and Hobbs 2004 ), physician–patient relationships and primary care ( Flocke, Miller, and Crabtree 2002 ; Gallagher et al. 2003 ; Sobo, Seid, and Reyes Gelhard 2006 ), diffusion of innovations and quality improvement strategies ( Bradley et al. 2005 ; Crosson et al. 2005 ), novel interventions to improve care ( Koops and Lindley 2002 ; Stapleton, Kirkham, and Thomas 2002 ; Dy et al. 2005 ), and managed care market trends ( Scanlon et al. 2001 ; Devers et al. 2003 ). Despite substantial methodological papers and seminal texts ( Glaser and Strauss 1967 ; Miles and Huberman 1994 ; Mays and Pope 1995 ; Strauss and Corbin 1998 ; Crabtree and Miller 1999 ; Devers 1999 ; Patton 1999 ; Devers and Frankel 2000 ; Giacomini and Cook 2000 ; Morse and Richards 2002 ) about designing qualitative projects and collecting qualitative data, less attention has been paid to the data analysis aspects of qualitative research. The purpose of this paper is to offer practical strategies for the analysis of qualitative data that may be generated from in-depth interviewing, focus groups, field observations, primary or secondary qualitative data (e.g., diaries, meeting minutes, annual reports), or a combination of these data collection approaches.

WHY QUALITATIVE RESEARCH?

Qualitative research is well suited for understanding phenomena within their context, uncovering links among concepts and behaviors, and generating and refining theory ( Glaser and Strauss 1967 ; Miles and Huberman 1994 ; Crabtree and Miller 1999 ; Morse 1999 ; Ragin 1999 ; Sofaer 1999 ; Patton 2002 ; Campbell and Gregor 2004 ; Quinn 2005 ). Distinct from qualitative work, quantitative research seeks to count occurrences, establish statistical links among variables, and generalize findings to the population from which the sample was drawn. Although qualitative and quantitative methods have historically been viewed as mutually exclusive, rigid distinctions are increasingly recognized as inappropriate and counterproductive ( Ragin 1999 ; Sofaer 1999 ; Creswell 2003 ; Skocpol 2003 ). Mixed methods approaches ( Creswell 2003 ) may include both methods employed simultaneously or sequentially, as appropriate.

TYPES OF QUALITATIVE ANALYSIS

There is immense diversity in the disciplinary and theoretical orientation, methods, and types of findings generated by qualitative research ( Yardley 2000 ). The many traditions of qualitative research include, but are not limited to, cultural ethnography ( Agar 1996 ; Quinn 2005 ), institutional ethnography ( Campbell and Gregor 2004 ), comparative historical analyses ( Skocpol 2003 ), case studies ( Yin 1994 ), focus groups ( Krueger and Casey 2000 ), in-depth interviews ( Glaser and Strauss 1967 ; McCracken 1988 ; Patton 2002 ; Quinn 2005 ), participant and nonparticipant observations ( Spradley 1980 ), and hybrid approaches that include parts or wholes of multiple study types. Consistent with the pluralism in theoretical traditions, methods, and study designs, many experts ( Feldman 1995 ; Greenhalgh and Taylor 1997 ; Sofaer 1999 ; Yardley 2000 ; Morse and Richards 2002 ) have argued that there cannot and should not be a uniform approach to qualitative methods. Nevertheless, some approaches to qualitative data analysis are useful in health services research. In this paper, we focus on strategies for analysis of qualitative data that are especially applicable in the generation of taxonomy, themes, and theory ( Table 1 ). Taxonomy is a formal system for classifying multifaceted, complex phenomena ( Patton 2002 ) according to a set of common conceptual domains and dimensions. Taxonomies promote increased clarity in defining and hence comparing diverse, complex interventions ( Sofaer 1999 ), which are common in health policy and management. Themes are recurrent unifying concepts or statements ( Boyatzis 1998 ) about the subject of inquiry. Themes are fundamental concepts ( Ryan and Bernard 2003 ) that characterize specific experiences of individual participants by the more general insights that are apparent from the whole of the data. Theory is a set of general, modifiable propositions that help explain, predict, and interpret events or phenomena of interest ( Dubin 1969 ; Patton 2002 ). Theory is important for understanding potential causal links and confounding variables, for understanding the context within which a phenomenon occurs, and for providing a potential framework for guiding subsequent empirical research.

Selected Types of Results from Qualitative Data Analysis

CONDUCTING THE ANALYSIS

There is no singularly appropriate way to conduct qualitative data analysis, although there is general agreement that analysis is an ongoing, iterative process that begins in the early stages of data collection and continues throughout the study. Qualitative data analysis, wherein one is making sense of the data collected, may seem particularly mysterious ( Campbell and Gregor 2004 ). The following steps represent a systematic approach that allows for open discovery of emergent concepts with a focus on generating taxonomy, themes, or theory.

Reading for Overall Understanding

Immersion in the data to comprehend its meaning in its entirety ( Crabtree and Miller 1999 ; Pope, Ziebland, and Mays 2000 ) is an important first step in the analysis. Reviewing data without coding helps identify emergent themes without losing the connections between concepts and their context.

Coding Qualitative Data

Once the data have been reviewed and there is a general understanding of the scope and contexts of the key experiences under study, coding provides the analyst with a formal system to organize the data, uncovering and documenting additional links within and between concepts and experiences described in the data. Codes are tags ( Miles and Huberman 1994 ) or labels, which are assigned to whole documents or segments of documents (i.e., paragraphs, sentences, or words) to help catalogue key concepts while preserving the context in which these concepts occur.

The coding process includes development, finalization, and application of the code structure. Some experts ( Morse 1994 ; Morse and Richards 2002 ; Janesick 2003 ) argue that a single researcher conducting all the coding is both sufficient and preferred. This is particularly true in studies where being embedded in ongoing relationships with research participants is critical for the quality of the data collected. In such cases, the researcher is the instrument; data collection and analysis are so intertwined that they should be integrated in a single person who is the “choreographer” ( Janesick 2003 ) of his/her own “dance.” Such an analysis may not be possible to be repeated by others who have differing traditions and paradigms; therefore, disclosure ( Gubrium and Holstein 1997 ) of the researcher's biases and philosophical approaches is important. In contrast, other experts recommend that the coding process involve a team of researchers with differing backgrounds ( Denzin 1978 ; Mays and Pope 1995 ; Patton 1999 ; Pope, Ziebland, and Mays 2000 ) to improve the breadth and depth of the analysis and subsequent findings. Cross-training is important in the use of such teams.

Developing the Code Structure

The development of the code structure is an iterative and lengthy process, which begins in the data collection phase. There is substantial diversity in how to develop the code structure. This debate ( Glaser 1992 ; Heath and Cowley 2004 ) centers on whether coding should be more inductive or more deductive. Regardless of approach, a well-crafted, clear, and comprehensive code structure promotes the quality of subsequent analysis ( Miles and Huberman 1994 ).

Grounded Theory Approach to Developing Code Structure

For grounded theorists, the recommended approach to developing a set of codes is purely inductive. This approach limits researchers from erroneously “forcing” a preconceived result ( Glaser 1992 ). Data are reviewed line by line in detail and as a concept becomes apparent, a code is assigned. Upon further review of data, the analyst continues to assign codes that reflect the concepts that emerge, highlighting and coding lines, paragraphs, or segments that illustrate the chosen concept. As more data are reviewed, the specifications of codes are developed and refined to fit the data. To ascertain whether a code is appropriately assigned, the analyst compares text segments to segments that have been previously assigned the same code and decides whether they reflect the same concept. Using this “constant comparison” method ( Glaser and Strauss 1967 ), the researchers refine dimensions of existing codes and identify new codes. Through this process, the code structure evolves inductively, reflecting “the ground,” i.e., the experiences of participants.

More Deductive Approaches to Developing Code Structure

Some qualitative research experts ( Miles and Huberman 1994 ) describe a more deductive approach, which starts with an organizing framework for the codes. In this approach, the initial step defines a structure of initial codes before line-by-line review of the data. Preliminary codes can help researchers integrate concepts already well known in the extant literature. For example, a deductive approach of health service use might begin with predetermined codes for predisposing, enabling, and need factors based on the behavioral model ( Andersen 1995 ). Great care must be taken to avoid forcing data into these categories because a code exists for them; however such a “start list” ( Miles and Huberman 1994 ) does allow new inquiries to benefit from and build on previous insights in the field.

An Integrated Approach to Developing Code Structure

An integrated approach employs both inductive (ground-up) development of codes as well as a deductive organizing framework for code types (start list). Previous researchers have identified various code types ( Lofland 1971 ; Lincoln and Guba 1985 ; Strauss and Corbin 1990 ; Miles and Huberman 1994 ); however, five code types ( Table 2 ) are helpful in generating taxonomy, themes, and theory, all of which have practical relevance for health services research. These code types are (1) conceptual codes and subcodes identifying key concept domains and essential dimensions of these concept domains, (2) relationship codes identifying links between other concepts coded with conceptual codes, (3) participant perspective codes , which identify if the participant is positive, negative, or indifferent about a particular experience or part of an experience, (4) participant characteristic codes , and (5) setting codes .

Code Types and Applications

Finalizing and Applying the Code Structure

The codes and code structure can be considered finalized at the point of theoretical saturation ( Glaser and Strauss 1967 ; Glaser 1992 ; Patton 2002 ). This is the point at which no new concepts emerge from reviewing of successive data from a theoretically sensitive sample of participants, i.e., a sample that is diverse in pertinent characteristics and experiences. Theoretical saturation will take longer to accomplish for more multifaceted areas of inquiry with greater diversity among participants. If, during analysis, a conceptual gap is identified, the researcher should expand the sample to continue data collection to clarify and refine emerging concepts and codes. For instance, if an observation or interview elicits information about a concept that has not been heard or that contradicts previous understandings, the researchers should expand the sample to include participants and experiences to understand this new concept more fully. This use of the codes to guide data collection is known as theoretical sampling and is central to conducting qualitative research.

Applying the Finalized Code Structure

The application of the finalized code structure to the data is an important step of analysis. One approach to applying the finalized code structure to the data is to have two to three members of the research team re-review all the data, applying independently the codes from the finalized code structure. Then, the team meets in a group to review discrepancies, resolving differences by in-depth discussion and negotiated consensus. The result is a single, agreed upon application of the final codes to all parts of the data. This approach is reasonable and frequently used in the published literature. Another approach to applying the finalized code structure is to establish the reliability of multiple coders from the research team with a selected group of data. Once coders have been established to be reliable with one another, one of the coders completes the remainder of the coding independently. This approach can be more time efficient than the approach that requires the multiple coders to recode all data with the final code structure and then resolve disagreement by joint consensus. Intercoder reliability ( Miles and Huberman 1994 ) can be evaluated by selecting new data (for instance, two to three transcripts that were not analyzed as part of the code development phase before theoretical saturation) and having two researchers code these data, using the finalized code structure. The two researchers code the transcripts independently and compare the agreement on coding used. One calculates the percentage of all segments coded, which are coded with the same codes, and some experts ( Miles and Huberman 1994 ) have proposed 80 percent agreement as a rule of thumb for reasonable reliability.

The approach in each of the steps of qualitative data analysis reflects a balance of differing views among researchers. Formality, including quantifying intercoder reliability, may improve the ability of those less trained in qualitative methods to understand and value evidence generated from qualitative studies. However, overly mechanistic approaches or reliance on inexperienced qualitative analysts may dampen the insights from qualitative research ( Morgan 1997 ). Formal rules and processes should not replace analytic thought itself. In any project, if the codes are not conceptually rich and are oversimplified in their separation from the context of their occurrence, the insights from the inquiry will be limited.

GENERATING RESULTS

We focus on three types of output from qualitative studies—taxonomy, themes, and theory. These outputs can be helpful in a number of ways including, but not limited to, the fostering of improved measurement of multifaceted interventions; the generation of hypotheses about causal links among service quality, cost, or access; and the revealing of insights into how the context of an events might influence various health-related outcomes.

Taxonomy is a system for classifying multifaceted, complex phenomena according to common conceptual domains and dimensions. In health services research, we are often evaluating multifaceted interventions, implemented in the real world rather than controlled conditions. Qualitative methods provide a sophisticated approach to specifying the complexity rather than simple dichotomous characterizations of interventions (i.e., treatment versus control) common in quantitative research ( Sofaer 1999 ). Furthermore, a common language or taxonomy that distills complex interventions into their essential components is paramount to comparing alternative interventions and promoting clear communication. Examples of taxonomy include classification systems for health maintenance organizations ( Welch, Hillman, and Pauly 1990 ), integrated health systems ( Gillies et al. 1993 ; Bazzoli et al. 1999 ), goal-setting for older adults with dementia ( Bogardus, Bradley, and Tinetti 1998 ), and quality improvement efforts in the hospital setting ( Bradley et al. 2001 ).

How does one move from the phase of applying the finalized code structure to generating and reporting taxonomy? If one has applied the code types as described above, then the structure of the taxonomy will mirror closely the conceptual codes and subcodes. Conceptual codes define key domains that characterize the phenomenon; conceptual subcodes define common dimensions within those key domains. Within each dimension, there may be further subdimensions depending on the complexity of the inquiry. Importantly, taxonomies identify domains and dimensions that are broad in nature. For example, in a taxonomy classifying quality improvement ( Bradley et al. 2001 ), we defined six domains that comprise quality improvement efforts in the hospital setting: organizational goals, administrative support, clinician leadership, performance improvement initiatives, use of data, and contextual factors. Within the domain of organizational goals, there were four dimensions (i.e., content, specificity, challenge, sharedness of the goals). For each domain and dimension, the code represents the abstract concept, not the specific statement about that concept. For instance, a domain might be “nursing leadership,” as opposed to the statement, “there is strong nursing leadership here.” The difference is important to recognize as taxonomies describe a discrete set of axes or domains that characterize multifaceted phenomena.

Themes are general propositions that emerge from diverse and detail-rich experiences of participants and provide recurrent and unifying ideas regarding the subject of inquiry. Themes typically evolve not only from the conceptual codes and subcodes as in the case of taxonomy but also from the relationship codes, which tag data that link concepts to each other. For example, as in a study of health services integration ( Gillies et al. 1993 ), three concepts were identified that might form a taxonomy of integration approaches: functional integration, physician integration, and clinical integration. However, the study also suggests that clinical integration requires success in function and, ideally, physician integration before full clinical integration can be achieved. This latter statement might be called a theme, a statement or proposition about how health system integration proceeds. The statement does more than just identify conceptual domains; it also suggests a relationship among the concepts. Similarly, a study of managing a safety-net emergency department ( Dohan 2002 ) identified themes of patients using the emergency department for relief from social, not health, problems and the extreme financial stress that is part of every day in the department. The study also revealed how these tensions were managed, i.e., by defining patients as “interesting cases” and fostering an organizational obligation to provide uncompensated care.

Another approach to developing themes is to conduct a comparative analysis of concepts coded in different participant groups or setting codes. The researcher retrieves data coded with both a conceptual or relationship code and with a participant characteristic code (e.g., fee-for-service Medicare versus traditional Medicare). The comparison can assess whether certain concepts, relationships among concepts, or positive/negative perspectives are more apparent or are experienced differently in one group than in another. These kinds of comparisons are sometimes performed informally by researchers reading and comparing statements and observations; however, formal mechanisms including the use of truth tables ( Ragin 1987 , 1999 ) and explanatory effects matrices ( Miles and Huberman 1994 ) to catalogue the presence of selected concepts among comparisons groups have also been implemented.

Theory emphasizes the nature of correlative or causal relationships, often delving into the systematic reasons for the events, experiences, and phenomena of inquiry. Theory predicts and explains phenomena ( Kaplan 1964 ; Merton 1967 ; Weick 1995). Data tagged by relationship codes are essential to generating and reporting theory. A comprehensive theory will integrate data tagged with conceptual codes and subcodes as well as with relationship and perspective codes. Comparative analysis about group-specific differences is also sometimes used to develop theory.

Theory development can be less bewildering with consistent cataloguing of relationships among concepts, using the constant comparison method to generate inductively conceptual codes and subcodes as well as relationship codes. The process for developing theory is, nonetheless, diverse depending on the subject, the context, and the experience of the researcher. Illustrating theory development, a study of barriers to pediatric health care ( Sobo, Seid, and Reyes Gelhard 2006 ), parents identified a set of six barriers that can limit access and use of critical pediatric services. The study then linked these barriers into a theory about the interaction of necessary skills and prerequisites, realization of access, the site of care, and parent/patient outcomes. Through its theoretical development, the study also suggests a new paradigm for understanding the biomedical health care system, likening it to a cultural system in which parents and patients needed to learn (or be acculturated) to function competently.

Qualitative research methodologies can generate rich information about health care including, but not limited to, patient preferences, medical decision making, culturally determined values and health beliefs, consumer satisfaction, health-seeking behaviors, and health disparities. Furthermore, qualitative methods can reveal critical insights to inform development, translation, and dissemination of interventions to address health system shortcomings. A clear understanding of such methodologies can help the field adopt and integrate qualitative approaches when they are appropriate. Taxonomies, themes, and theory produced with rigorous qualitative methods can be particularly useful in health services research. Taxonomies improve our description and hence, measurement and evaluation, of real-world phenomena by allowing for multiple domains and dimensions of multifaceted interventions. Themes and theory guide our research to explain and predict various outcomes within diverse contexts of the health care system. In this paper, we highlight an integrated approach to qualitative data analysis, which applies the principles of inductive reasoning and the constant comparison method ( Glaser and Strauss 1967 ) while employing predetermined code types (conceptual, relationship, perspective, participant characteristics, and setting codes) to analyze data. A vast body of methodological work conducted over decades has produced impressive innovation and advancement in qualitative research techniques. This paper has sought to translate qualitative data analysis strategies and approaches from this methodological literature to enhance their accessibility and use for improving health services research.

Acknowledgments

Dr. Bradley is supported by the Patrick and Catherine Weldon Donaghue Medical Research Foundation and the Claude D. Pepper Older Americans Independence Center at Yale University. The authors are grateful to Emily Cherlin, MSW, for her research assistance on this project.

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This paper is in the following e-collection/theme issue:

Published on 11.4.2024 in Vol 26 (2024)

Patients’ Experiences With Digitalization in the Health Care System: Qualitative Interview Study

Authors of this article:

Original Paper

• Christian Gybel Jensen 1 * , MA   ; 
• Frederik Gybel Jensen 1 * , MA   ; 
• Mia Ingerslev Loft 1, 2 * , MSc, PhD  

1 Department of Neurology, Rigshospitalet, Copenhagen, Denmark

2 Institute for People and Technology, Roskilde University, Roskilde, Denmark

*all authors contributed equally

Corresponding Author:

Mia Ingerslev Loft, MSc, PhD

Department of Neurology

Rigshospitalet

Inge Lehmanns Vej 8

Phone: 45 35457076

Email: [email protected]

Background: The digitalization of public and health sectors worldwide is fundamentally changing health systems. With the implementation of digital health services in health institutions, a focus on digital health literacy and the use of digital health services have become more evident. In Denmark, public institutions use digital tools for different purposes, aiming to create a universal public digital sector for everyone. However, this digitalization risks reducing equity in health and further marginalizing citizens who are disadvantaged. Therefore, more knowledge is needed regarding patients’ digital practices and experiences with digital health services.

Objective: This study aims to examine digital practices and experiences with public digital health services and digital tools from the perspective of patients in the neurology field and address the following research questions: (1) How do patients use digital services and digital tools? (2) How do they experience them?

Methods: We used a qualitative design with a hermeneutic approach. We conducted 31 semistructured interviews with patients who were hospitalized or formerly hospitalized at the department of neurology in a hospital in Denmark. The interviews were audio recorded and subsequently transcribed. The text from each transcribed interview was analyzed using manifest content analysis.

Results: The analysis provided insights into 4 different categories regarding digital practices and experiences of using digital tools and services in health care systems: social resources as a digital lifeline, possessing the necessary capabilities, big feelings as facilitators or barriers, and life without digital tools. Our findings show that digital tools were experienced differently, and specific conditions were important for the possibility of engaging in digital practices, including having access to social resources; possessing physical, cognitive, and communicative capabilities; and feeling motivated, secure, and comfortable. These prerequisites were necessary for participants to have positive experiences using digital tools in the health care system. Those who did not have these prerequisites experienced challenges and, in some cases, felt left out.

Conclusions: Experiences with digital practices and digital health services are complex and multifaceted. Engagement in digital practices for the examined population requires access to continuous assistance from their social network. If patients do not meet requirements, digital health services can be experienced as exclusionary and a source of concern. Physical, cognitive, and communicative difficulties might make it impossible to use digital tools or create more challenges. To ensure that digitalization does not create inequities in health, it is necessary for developers and institutions to be aware of the differences in digital health literacy, focus on simplifying communication with patients and next of kin, and find flexible solutions for citizens who are disadvantaged.

Introduction

In 2022, the fourth most googled question in Denmark was, “Why does MitID not work?” [ 1 ]. MitID (My ID) is a digital access tool that Danes use to enter several different private and public digital services, from bank accounts to mail from their municipality or the state. MitID is a part of many Danish citizens’ everyday lives because the public sector in Denmark is digitalized in many areas. In recent decades, digitalization has changed how governments and people interact and has demonstrated the potential to change the core functions of public sectors and delivery of public policies and services [ 2 ]. When public sectors worldwide become increasingly digitalized, this transformation extends to the public health sectors as well, and some studies argue that we are moving toward a “digital public health era” that is already impacting the health systems and will fundamentally change the future of health systems [ 3 ]. While health systems are becoming more digitalized, it is important that both patients and digitalized systems adapt to changes in accordance with each other. Digital practices of people can be understood as what people do with and through digital technologies and how people relate to technology [ 4 ]. Therefore, it is relevant to investigate digital practices and how patients perceive and experience their own use of digital tools and services, especially in relation to existing digital health services. In our study, we highlight a broad perspective on experiences with digital practices and particularly add insight into the challenges with digital practices faced by patients who have acute or chronic illness, with some of them also experiencing physical, communicative, or cognitive difficulties.

An international Organization for Economic Cooperation and Development report indicates that countries are digitalized to different extents and in different ways; however, this does not mean that countries do not share common challenges and insights into the implementation of digital services [ 2 ].

In its global Digital Government Index, Denmark is presented as one of the leading countries when it comes to public digitalization [ 2 ]. Recent statistics indicate that approximately 97% of Danish families have access to the internet at home [ 5 ]. The Danish health sector already offers many different digital services, including web-based delivery of medicine, e-consultations, patient-related outcome questionnaires, and seeking one’s own health journal or getting test results through; “Sundhed” [ 6 ] (the national health portal) and “Sundhedsjournalen” (the electronic patient record); or the apps “Medicinkortet” (the shared medication record), “Minlæge” (My Doctor, consisting of, eg, communication with the general practitioner), or “MinSP” (My Health Platform, consisting of, eg, communication with health care staff in hospitals) [ 6 - 8 ].

The Danish Digital Health Strategy from 2018 aims to create a coherent and user-friendly digital public sector for everyone [ 9 ], but statistics indicate that certain groups in society are not as digitalized as others. In particular, the older population uses digital services the least, with 5% of people aged 65 to 75 years and 18% of those aged 75 to 89 years having never used the internet in 2020 [ 5 ]. In parts of the literature, it has been problematized how the digitalization of the welfare state is related to the marginalization of older citizens who are socially disadvantaged [ 10 ]. However, statistics also indicate that the probability of using digital tools increases significantly as a person’s experience of using digital tools increases, regardless of their age or education level [ 5 ].

Understanding the digital practices of patients is important because they can use digital tools to engage with the health system and follow their own health course. Researching experiences with digital practices can be a way to better understand potential possibilities and barriers when patients use digital health services. With patients becoming more involved in their own health course and treatment, the importance of patients’ health literacy is being increasingly recognized [ 11 ]. The World Health Organization defines health literacy as the “achievement of a level of knowledge, personal skills and confidence to take action to improve personal and community health by changing personal lifestyles and living conditions” [ 12 ]. Furthermore, health literacy can be described as “a person’s knowledge and competencies to meet complex demands of health in modern society, ” and it is viewed as a critical step toward patient empowerment [ 11 , 12 ]. In a digitalized health care system, this also includes the knowledge, capabilities, and resources that individuals require to use and benefit from eHealth services, that is, “digital health literacy (eHealth literacy)” [ 13 ]. An eHealth literacy framework created by Norgaard et al [ 13 ] identified that different aspects, for example, the ability to process information and actively engage with digital services, can be viewed as important facets of digital health literacy. This argument is supported by studies that demonstrate how patients with cognitive and communicative challenges experience barriers to the use of digital tools and require different approaches in the design of digital solutions in the health sector [ 14 , 15 ]. Access to digital services and digital literacy is becoming increasingly important determinants of health, as people with digital literacy and access to digital services can facilitate improvement of health and involvement in their own health course [ 16 ].

The need for a better understanding of eHealth literacy and patients’ capabilities to meet public digital services’ demands as well as engage in their own health calls for a deeper investigation into digital practices and the use of digital tools and services from the perspective of patients with varying digital capabilities. Important focus areas to better understand digital practices and related challenges have already been highlighted in various studies. They indicate that social support, assessment of value in digital services, and systemic assessment of digital capabilities are important in the use and implementation of digital tools, and they call for better insight into complex experiences with digital services [ 13 , 17 , 18 ]. Therefore, we aimed to examine digital practices and experiences with public digital health services and digital tools from the perspective of patients, addressing the following research questions: how do patients use digital services and digital tools, and how do they experience them?

We aimed to investigate digital practices and experiences with digital health services and digital tools; therefore, we used a qualitative design and adopted a hermeneutic approach as the point of departure, which means including preexisting knowledge of digital practices but also providing room for new comprehension [ 19 ]. Our interpretive approach is underpinned by the philosophical hermeneutic approach by Gadamer et al [ 19 ], in which they described the interpretation process as a “hermeneutic circle,” where the researcher enters the interpretation process with an open mind and historical awareness of a phenomenon (preknowledge). We conducted semistructured interviews using an interview guide. This study followed the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist [ 20 ].

Setting and Participants

To gain a broad understanding of experiences with public digital health services, a purposive sampling strategy was used. All 31 participants were hospitalized or formerly hospitalized patients in a large neurological department in the capital of Denmark ( Table 1 ). We assessed whether including patients from the neurological field would give us a broad insight into the experiences of digital practices from different perspectives. The department consisted of, among others, 8 inpatient units covering, for example, acute neurology and stroke units, from which the patients were recruited. Patients admitted to a neurological department can have both acute and transient neurological diseases, such as infections in the brain, stroke, or blood clot in the brain from which they can recover completely or have persistent physical and mental difficulties, or experience chronic neurological and progressive disorders such as Parkinson disease and dementia. Some patients hospitalized in neurological care will have communicative and cognitive difficulties because of their neurological disorders. Nursing staff from the respective units helped the researchers (CGJ, FGJ, and MIL) identify patients who differed in terms of gender, age, and severity of neurological illness. Some patients (6/31, 19%) had language difficulties; however, a speech therapist assessed them as suitable participants. We excluded patients with severe cognitive difficulties and those who were not able to speak the Danish language. Including patients from the field of neurology provided an opportunity to study the experience of digital health practice from various perspectives. Hence, the sampling strategy enabled the identification and selection of information-rich participants relevant to this study [ 21 ], which is the aim of qualitative research. The participants were invited to participate by either the first (CGJ) or last author (MIL), and all invited participants (31/31, 100%) chose to participate.

All 31 participants were aged between 40 to 99 years, with an average age of 71.75 years ( Table 1 ). Out of the 31 participants, 10 (32%) had physical disabilities or had cognitive or communicative difficulties due to sequela in relation to neurological illness or other physical conditions.

Data Collection

The 31 patient interviews were conducted over a 2-month period between September and November 2022. Of the 31 patients, 20 (65%) were interviewed face-to-face at the hospital in their patient room upon admission and 11 (35%) were interviewed on the phone after being discharged. The interviews had a mean length of 20.48 minutes.

We developed a semistructured interview guide ( Table 2 ). The interview questions were developed based on the research aim, findings from our preliminary covering of literature in the field presented in the Introduction section, and identified gaps that we needed to elaborate on to be able to answer our research question [ 22 ]. The semistructured interview guide was designed to support the development of a trusting relationship and ensure the relevance of the interviews’ content [ 22 ]. The questions served as a prompt for the participants and were further supported by questions such as “please tell me more” and “please elaborate” throughout the interview, both to heighten the level of detail and to verify our understanding of the issues at play. If the participant had cognitive or communicative difficulties, communication was supported using a method called Supported Communication for Adults with Aphasia [ 23 ] during the interview.

The interviews were performed by all authors (CGJ, FGJ, and MIL individually), who were skilled in conducting interviews and qualitative research. The interviewers are not part of daily clinical practice but are employed in the department of neurology from where the patients were recruited. All interviews were audio recorded and subsequently transcribed verbatim by all 3 authors individually.

a PRO: patient-related outcome.

Data Analysis

The text from each transcribed interview was analyzed using manifest content analysis, as described by Graneheim and Lundman [ 24 ]. Content analysis is a method of analyzing written, verbal, and visual communication in a systematic way [ 25 ]. Qualitative content analysis is a structured but nonlinear process that requires researchers to move back and forth between the original text and parts of the text during the analysis. Manifest analysis is the descriptive level at which the surface structure of the text central to the phenomenon and the research question is described. The analysis was conducted as a collaborative effort between the first (CGJ) and last authors (MIL); hence, in this inductive circular process, to achieve consistency in the interpretation of the text, there was continued discussion and reflection between the researchers. The transcriptions were initially read several times to gain a sense of the whole context, and we analyzed each interview. The text was initially divided into domains that reflected the lowest degree of interpretation, as a rough structure was created in which the text had a specific area in common. The structure roughly reflected the interview guide’s themes, as guided by Graneheim and Lundman [ 24 ]. Thereafter, the text was divided into meaning units, condensed into text-near descriptions, and then abstracted and labeled further with codes. The codes were categorized based on similarities and differences. During this process, we discussed the findings to reach a consensus on the content, resulting in the final 4 categories presented in this paper.

Ethical Considerations

The interviewees received oral and written information about the study and its voluntary nature before the interviews. Written informed consent was obtained from all participants. Participants were able to opt of the study at any time. Data were anonymized and stored electronically on locked and secured servers. The Ethics Committee of the Capitol Region in Denmark was contacted before the start of the study. This study was registered and approved by the ethics committee and registered under the Danish Data Protection Agency (number P2021-839). Furthermore, the ethical principles of the Declaration of Helsinki were followed for this study.

The analysis provided insights into 4 different categories regarding digital practices and experiences of using digital tools and services in health care systems: social resources as a digital lifeline, possessing the necessary capabilities, big feelings as facilitators or barriers, and life without digital tools.

Social Resources as a Digital Lifeline

Throughout the analysis, it became evident that access to both material and social resources was of great importance when using digital tools. Most participants already possessed and had easy access to a computer, smartphone, or tablet. The few participants who did not own the necessary digital tools told us that they did not have the skills needed to use these tools. For these participants, the lack of material resources was tied particularly to a lack of knowledge and know-how, as they expressed that they would not know where to start after buying a computer—how to set it up, connect it to the internet, and use its many systems.

However, possessing the necessary material resources did not mean that the participants possessed the knowledge and skill to use digital tools. Furthermore, access to material resources was also a question of having access to assistance when needed. Some participants who had access to a computer, smartphone, and tablet and knew how to use these tools still had to obtain help when setting up hardware, updating software, or getting a new device. These participants were confident in their own ability to use digital devices but also relied on family, friends, and neighbors in their everyday use of these tools. Certain participants were explicitly aware of their own use of social resources when expressing their thoughts on digital services in health care systems:

I think it is a blessing and a curse. I think it is both. I would say that if I did not have someone around me in my family who was almost born into the digital world, then I think I would be in trouble. But I feel sorry for those who do not have that opportunity, and I know quite a few who do not. They get upset, and it’s really frustrating. [Woman, age 82 years]

The participants’ use of social resources indicates that learning skills and using digital tools are not solely individual tasks but rather continuously involve engagement with other people, particularly whenever a new unforeseen problem arises or when the participants want a deeper understanding of the tools they are using:

If tomorrow I have to get a new ipad...and it was like that when I got this one, then I had to get XXX to come and help me move stuff and he was sweet to help with all the practical stuff. I think I would have cursed a couple of times (if he hadn’t been there), but he is always helpful, but at the same time he is also pedagogic so I hope that next time he showed me something I will be able to do it. [Man, age 71 years]

For some participants, obtaining assistance from a more experienced family member was experienced as an opportunity to learn, whereas for other participants, their use of public digital services was even tied directly to assistance from a spouse or family member:

My wife, she has access to mine, so if something comes up, she can just go in and read, and we can talk about it afterwards what (it is). [Man, age 85 years]

The participants used social resources to navigate digital systems and understand and interpret communication from the health care system through digital devices. Another example of this was the participants who needed assistance to find, answer, and understand questionnaires from the health care department. Furthermore, social resources were viewed as a support system that made participants feel more comfortable and safer when operating digital tools. The social resources were particularly important when overcoming unforeseen and new challenges and when learning new skills related to the use of digital tools. Participants with physical, cognitive, and communicative challenges also explained how social resources were of great importance in their ability to use digital tools.

Possessing the Necessary Capabilities

The findings indicated that possessing the desire and knowing how to use digital tools are not always enough to engage with digital services successfully. Different health issues can carry consequences for motor skills and mobility. Some of these consequences were visibly affecting how our participants interacted with digital devices, and these challenges were somewhat easy to discover. However, our participants revealed hidden challenges that posed difficulties. In some specific cases, cognitive and communicative inabilities can make it difficult to use digital tools, and this might not always be clear until the individual tries to use a device’s more complex functions. An example of this is that some participants found it easy to turn on a computer and use it to write but difficult to go through security measures on digital services or interpret and understand digital language. Remembering passwords and logging on to systems created challenges, particularly for those experiencing health issues that directly affect memory and cognitive abilities, who expressed concerns about what they were able to do through digital tools:

I think it is very challenging because I would like to use it how I used to before my stroke; (I) wish that everything (digital skills) was transferred, but it just isn’t. [Man, age 80 years]

Despite these challenges, the participants demonstrated great interest in using digital tools, particularly regarding health care services and their own well-being. However, sometimes, the challenges that they experienced could not be conquered merely by motivation and good intentions. Another aspect of these challenges was the amount of extra time and energy that the participants had to spend on digital services. A patient diagnosed with Parkinson disease described how her symptoms created challenges that changed her digital practices:

Well it could for example be something like following a line in the device. And right now it is very limited what I can do with this (iPhone). Now I am almost only using it as a phone, and that is a little sad because I also like to text and stuff, but I also find that difficult (...) I think it is difficult to get an overview. [Woman, age 62 years]

Some participants said that after they were discharged from the hospital, they did not use the computer anymore because it was too difficult and too exhausting , which contributed to them giving up . Using digital tools already demanded a certain amount of concentration and awareness, and some diseases and health conditions affected these abilities further.

Big Feelings as Facilitators or Barriers

The findings revealed a wide range of digital practices in which digital tools were used as a communication device, as an entertainment device, and as a practical and informative tool for ordering medicine, booking consultations, asking health-related questions, or receiving email from public institutions. Despite these different digital practices, repeating patterns and arguments appeared when the participants were asked why they learned to use digital tools or wanted to improve their skills. A repeating argument was that they wanted to “follow the times, ” or as a participant who was still not satisfied with her digital skills stated:

We should not go against the future. [Woman, age 89 years]

The participants expressed a positive view of the technological developments and possibilities that digital devices offered, and they wanted to improve their knowledge and skills related to digital practice. For some participants, this was challenging, and they expressed frustration over how technological developments “moved too fast ,” but some participants interpreted these challenges as a way to “keep their mind sharp. ”

Another recurring pattern was that the participants expressed great interest in using digital services related to the health care system and other public institutions. The importance of being able to navigate digital services was explicitly clear when talking about finding test answers, written electronic messages, and questionnaires from the hospital or other public institutions. Keeping up with developments, communicating with public institutions, and taking an interest in their own health and well-being were described as good reasons to learn to use digital tools.

However, other aspects also affected these learning facilitators. Some participants felt alienated while using digital tools and described the practice as something related to feelings of anxiety, fear, and stupidity as well as something that demanded “a certain amount of courage. ” Some participants felt frustrated with the digital challenges they experienced, especially when the challenges were difficult to overcome because of their physical conditions:

I get sad because of it (digital challenges) and I get very frustrated and it takes a lot of time because I have difficulty seeing when I look away from the computer and have to turn back again to find out where I was and continue there (...) It pains me that I have to use so much time on it. [Man, age 71 years]

Fear of making mistakes, particularly when communicating with public institutions, for example, the health care system, was a common pattern. Another pattern was the fear of misinterpreting the sender and the need to ensure that the written electronic messages were actually from the described sender. Some participants felt that they were forced to learn about digital tools because they cared a lot about the services. Furthermore, fears of digital services replacing human interaction were a recurring concern among the participants. Despite these initial and recurring feelings, some participants learned how to navigate the digital services that they deemed relevant. Another recurring pattern in this learning process was repetition, the practice of digital skills, and consistent assistance from other people. One participant expressed the need to use the services often to remember the necessary skills:

Now I can figure it out because now I’ve had it shown 10 times. But then three months still pass... and then I think...how was it now? Then I get sweat on my forehead (feel nervous) and think; I’m not an idiot. [Woman, age 82 years]

For some participants, learning how to use digital tools demanded time and patience, as challenges had to be overcome more than once because they reappeared until the use of digital tools was more automatized into their everyday lives. Using digital tools and health services was viewed as easier and less stressful when part of everyday routines.

Life Without Digital Tools: Not a Free Choice

Even though some participants used digital tools daily, other participants expressed that it was “too late for them.” These participants did not view it as a free choice but as something they had to accept that they could not do. They wished that they could have learned it earlier in life but did not view it as a possibility in the future. Furthermore, they saw potential in digital services, including digital health care services, but they did not know exactly what services they were missing out on. Despite this lack of knowledge, they still felt sad about the position they were in. One participant expressed what she thought regarding the use of digital tools in public institutions:

Well, I feel alright about it, but it is very, very difficult for those of us who do not have it. Sometimes you can feel left out—outside of society. And when you do not have one of those (computers)...A reference is always made to w and w (www.) and then you can read on. But you cannot do that. [Woman, age 94 years]

The feeling of being left out of society was consistent among the participants who did not use digital tools. To them, digital systems seemed to provide unfair treatment based on something outside of their own power. Participants who were heavily affected by their medical conditions and could not use digital services also felt left out because they saw the advantages of using digital tools. Furthermore, a participant described the feelings connected to the use of digital tools in public institutions:

It is more annoying that it does not seem to work out in my favour. [Woman, age 62 years]

These statements indicated that it is possible for individuals to want to use digital tools and simultaneously find them too challenging. These participants were aware that there are consequences of not using digital tools, and that saddens them, as they feel like they are not receiving the same treatment as other people in society and the health care system.

Principal Findings

The insights from our findings demonstrated that our participants had different digital practices and different experiences with digital tools and services; however, the analysis also highlighted patterns related to how digital services and tools were used. Specific conditions were important for the possibility of digital practice, including having access to social resources; possessing the necessary capabilities; and feeling motivated, secure, and comfortable . These prerequisites were necessary to have positive experiences using digital tools in the health care system, although some participants who lived up to these prerequisites were still skeptical toward digital solutions. Others who did not live up to these prerequisites experienced challenges and even though they were aware of opportunities, this awareness made them feel left out. A few participants even viewed the digital tools as a threat to their participation in society. This supports the notion of Norgaard et al [ 13 ] that the attention paid to digital capability demands from eHealth systems is very important. Furthermore, our findings supported the argument of Hjeltholt and Papazu [ 17 ] that it is important to better understand experiences related to digital services. In our study, we accommodate this request and bring forth a broad perspective on experiences with digital practices; we particularly add insight into the challenges with digital practices for patients who also have acute or chronic illness, with some of them also experiencing physical, communicative, and cognitive difficulties. To our knowledge, there is limited existing literature focusing on digital practices that do not have a limited scope, for example, a focus on perspectives on eHealth literacy in the use of apps [ 26 ] or intervention studies with a focus on experiences with digital solutions, for example, telemedicine during the COVID-19 pandemic [ 27 ]. As mentioned by Hjeltholt et al [ 10 ], certain citizens are dependent on their own social networks in the process of using and learning digital tools. Rasi et al [ 28 ] and Airola et al [ 29 ] argued that digital health literacy is situated and should include the capabilities of the individual’s social network. Our findings support these arguments that access to social resources is an important condition; however, the findings also highlight that these resources can be particularly crucial in the use of digital health services, for example, when interpreting and understanding digital and written electronic messages related to one’s own health course or when dealing with physical, cognitive, and communicative disadvantages. Therefore, we argue that the awareness of the disadvantages is important if we want to understand patients’ digital capabilities, and the inclusion of the next of kin can be evident in unveiling challenges that are unknown and not easily visible or when trying to reach patients with digital challenges through digital means.

Studies by Kayser et al [ 30 ] and Kanoe et al [ 31 ] indicated that patients’ abilities to interpret and understand digital health–related services and their benefits are important for the successful implementation of eHealth services—an argument that our findings support. Health literacy in both digital and physical contexts is important if we want to understand how to better design and implement services. Our participants’ statements support the argument that communication through digital means cannot be viewed as similar to face-to-face communication and that an emphasis on digital health literacy demonstrates how health systems are demanding different capabilities from the patients [ 13 ]. We argue that it is important to communicate the purposes of digital services so that both the patient and their next of kin know why they participate and how it can benefit them. Therefore, it is important to make it as clear as possible that digital health services can benefit the patient and that these services are developed to support information, communication, and dialogue between patients and health professionals. However, our findings suggest that even after interpreting and understanding the purposes of digital health services, some patients may still experience challenges when using digital tools.

Therefore, it is important to understand how and why patients learn digital skills, particularly because both experience with digital devices and estimation of the value of digital tools have been highlighted as key factors for digital practices [ 5 , 18 ]. Our findings indicate that a combination of these factors is important, as recognizing the value of digital tools was not enough to facilitate the necessary learning process for some of our participants. Instead, our participants described the use of digital tools as complex and continuous processes in which automation of skills, assistance from others, and time to relearn forgotten knowledge were necessary and important facilitators for learning and understanding digital tools as well as becoming more comfortable and confident in the use of digital health services. This was particularly important, as it was more encouraging for our participants to learn digital tools when they felt secure, instead of feeling afraid and anxious, a point that Bailey et al [ 18 ] also highlighted. The value of digital solutions and the will to learn were greater when challenges were viewed as something to overcome and learn from instead of something that created a feeling of being stupid. This calls for attention on how to simplify and explain digital tools and services so that users do not feel alienated. Our findings also support the argument that digital health literacy should take into account emotional well-being related to digital practice [ 32 ].

The various perspectives that our participants provided regarding the use of digital tools in the health care system indicate that patients are affected by the use of digital health services and their own capabilities to use digital tools. Murray et al [ 33 ] argued that the use of digital tools in health sectors has the potential to improve health and health delivery by improving efficacy, efficiency, accessibility, safety, and personalization, and our participants also highlighted these positive aspects. However, different studies found that some patients, particularly older adults considered socially vulnerable, have lower digital health literacy [ 10 , 34 , 35 ], which is an important determinant of health and may widen disparities and inequity in health care [ 16 ]. Studies on older adult populations’ adaptation to information and communication technology show that engaging with this technology can be limited by the usability of technology, feelings of anxiety and concern, self-perception of technology use, and the need for assistance and inclusive design [ 36 ]. Our participants’ experiences with digital practices support the importance of these focus areas, especially when primarily older patients are admitted to hospitals. Furthermore, our findings indicate that some older patients who used to view themselves as being engaged in their own health care felt more distanced from the health care system because of digital services, and some who did not have the capabilities to use digital tools felt that they were treated differently compared to the rest of society. They did not necessarily view themselves as vulnerable but felt vulnerable in the specific experience of trying to use digital services because they wished that they were more capable. Moreover, this was the case for patients with physical and cognitive difficulties, as they were not necessarily aware of the challenges before experiencing them. Drawing on the phenomenological and feministic approach by Ahmed [ 37 ], these challenges that make patients feel vulnerable are not necessarily visible to others but can instead be viewed as invisible institutional “walls” that do not present themselves before the patient runs into them. Some participants had to experience how their physical, cognitive, or communicative difficulties affected their digital practice to realize that they were not as digitally capable as they once were or as others in society. Furthermore, viewed from this perspective, our findings could be used to argue that digital capabilities should be viewed as a privilege tied to users’ physical bodies and that digital services in the health care system are indirectly making patients without this privilege vulnerable. This calls for more attention to the inequities that digital tools and services create in health care systems and awareness that those who do not use digital tools are not necessarily indifferent about the consequences. Particularly, in a context such as the Danish one, in which the digital strategy is to create an intertwined and user-friendly public digital sector for everyone, it needs to be understood that patients have different digital capabilities and needs. Although some have not yet had a challenging experience that made them feel vulnerable, others are very aware that they receive different treatment and feel that they are on their own or that the rest of the society does not care about them. Inequities in digital health care, such as these, can and should be mitigated or prevented, and our investigation into the experiences with digital practices can help to show that we are creating standards and infrastructures that deliberately exclude the perspectives of those who are most in need of the services offered by the digital health care system [ 8 ]. Therefore, our findings support the notions that flexibility is important in the implementation of universal public digital services [ 17 ]; that it is important to adjust systems in accordance with patients’ eHealth literacy and not only improve the capabilities of individuals [ 38 ]; and that the development and improvement of digital health literacy are not solely an individual responsibility but are also tied to ways in which institutions organize, design, and implement digital tools and services [ 39 ].

Limitations

This qualitative study provided novel insights into the experiences with public digital health services from the perspective of patients in the Danish context, enabling a deeper understanding of how digital health services and digital tools are experienced and used. This helps build a solid foundation for future interventions aimed at digital health literacy and digital health interventions. However, this study has some limitations. First, the study was conducted in a country where digitalization is progressing quickly, and people, therefore, are accustomed to this pace. Therefore, readers must be aware of this. Second, the study included patients with different neurological conditions; some of their digital challenges were caused or worsened by these neurological conditions and are, therefore, not applicable to all patients in the health system. However, the findings provided insights into the patients’ digital practices before their conditions and other challenges not connected to neurological conditions shared by patients. Third, the study was broad, and although a large number of informants was included, from a qualitative research perspective, we would recommend additional research in this field to develop interventions that target digital health literacy and the use of digital health services.

Conclusions

Experiences with digital tools and digital health services are complex and multifaceted. The advantages in communication, finding information, or navigating through one’s own health course work as facilitators for engaging with digital tools and digital health services. However, this is not enough on its own. Furthermore, feeling secure and motivated and having time to relearn and practice skills are important facilitators. Engagement in digital practices for the examined population requires access to continuous assistance from their social network. If patients do not meet requirements, digital health services can be experienced as exclusionary and a source of concern. Physical, cognitive, and communicative difficulties might make it impossible to use digital tools or create more challenges that require assistance. Digitalization of the health care system means that patients do not have the choice to opt out of using digital services without having consequences, resulting in them receiving a different treatment than others. To ensure digitalization does not create inequities in health, it is necessary for developers and the health institutions that create, design, and implement digital services to be aware of differences in digital health literacy and to focus on simplifying communication with patients and next of kin through and about digital services. It is important to focus on helping individuals meet the necessary conditions and finding flexible solutions for those who do not have the same privileges as others if the public digital sector is to work for everyone.

Acknowledgments

The authors would like to thank all the people who gave their time to be interviewed for the study, the clinical nurse specialists who facilitated interviewing patients, and the other nurses on shift who assisted in recruiting participants.

Conflicts of Interest

None declared.

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Abbreviations

Edited by A Mavragani; submitted 14.03.23; peer-reviewed by G Myreteg, J Eriksen, M Siermann; comments to author 18.09.23; revised version received 09.10.23; accepted 27.02.24; published 11.04.24.

©Christian Gybel Jensen, Frederik Gybel Jensen, Mia Ingerslev Loft. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 11.04.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

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Evidence synthesis – Indigenous people’s experiences of primary health care in Canada: a qualitative systematic review

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Geneveave Barbo, RN, MN, MClSc Author reference footnote 1 ; Sharmin Alam, MA Author reference footnote 2

https://doi.org/10.24095/hpcdp.44.4.01

This article has been peer reviewed.

Recommended Attribution

Research article  by Barbo G et al. in the HPCDP Journal licensed under a  Creative Commons Attribution 4.0 International License

Geneveave Barbo, College of Nursing, University of Saskatchewan, Health Science Building - 1A10, Box 6, 107 Wiggins Road, Saskatoon, SK  S7N 5E5; Tel: 306-966-6221; Email: [email protected]

Barbo G, Alam S. Indigenous people’s experiences of primary health care in Canada: a qualitative systematic review. Health Promot Chronic Dis Prev Can. 2024;44(4):131-51. https://doi.org/10.24095/hpcdp.44.4.01

Introduction: Indigenous people in Canada encounter negative treatment when accessing primary health care ( PHC ). Despite several qualitative accounts of these experiences, there still has not been a qualitative review conducted on this topic. In this qualitative systematic review, we aimed to explore Indigenous people’s experiences in Canada with PHC services, determine urban versus rural or remote differences and identify recommendations for quality improvement.

Methods: This review was guided by the Joanna Briggs Institute’s methodology for systematic reviews of qualitative evidence. MEDLINE, CINAHL , PubMed, PsycInfo, Embase and Web of Science as well as grey literature and ancestry sources were used to identify relevant articles. Ancestry sources were obtained through reviewing the reference lists of all included articles and determining the ones that potentially met the eligibility criteria. Two independent reviewers conducted the initial and full text screening, data extraction and quality assessment. Once all data were gathered, they were synthesized following the meta-aggregation approach (PROSPERO CRD 42020192353).

Results: The search yielded a total of 2503 articles from the academic databases and 12 articles from the grey literature and ancestry sources. Overall, 22 articles were included in this review. Three major synthesized findings were revealed—satisfactory experiences, discriminatory attitudes and systemic challenges faced by Indigenous patients—along with one synthesized finding on their specific recommendations.

Conclusion: Indigenous people value safe, accessible and respectful care. The discrimination and racism they face negatively affect their overall health and well-being. Hence, it is crucial that changes in health care practice, structures and policy development as well as systemic transformation be implemented immediately.

Keywords : Indigenous people, primary health care, health services accessibility, systematic review, Canada

• This is the first qualitative systematic review to explore the experiences of Indigenous people with primary health care services across Canada.
• Following Joanna Briggs Institute’s systematic reviews of qualitative evidence methodology, this review included six academic databases as well as grey literature and ancestry sources.
• The experiences of Indigenous people accessing primary health care in Canada have been described as supportive and respectful in some cases, but also heavily included discriminatory attitudes and systemic challenges.
• Indigenous people living in rural or remote communities reported greater concern about privacy, confidentiality and accessibility compared to those residing in urban locations.

Introduction

The 1946 Constitution of the World Health Organization ( WHO ) established that every human being has the fundamental right to the highest attainable standard of health. Footnote 1 Nevertheless, to this day, health inequities continue to exist worldwide. Footnote 2 Health inequities are systematic differences in the health status of various population groups caused by unequal distribution of social determinants of health that further disadvantage those who are already socially vulnerable. Footnote 2 Footnote 3 The WHO and other public health advocates assert the importance of investing in primary health care ( PHC ) as a means of addressing health inequities within countries. Footnote 4 Footnote 5

In Canada, PHC services have been offered to all eligible residents through the universal public health coverage, also known as Medicare. Footnote 6 Medicare is governed by the 1984 Canada Health Act , which ensures the delivery of health care services (including PHC ) and adherence to the five core principles of public administration, comprehensiveness, universality, portability and accessibility. Footnote 7 In 2000, a PHC reform was agreed upon and launched by the federal, provincial and territorial governments, with the primary goal of improving service access, service quality and health equity as well as responsiveness to patients’ and communities’ needs. Footnote 6 Footnote 8 Yet, PHC access and quality issues continue to persist, particularly for socially marginalized populations, such as in the case of Indigenous Peoples Footnote 9 Footnote 10 Social marginalization is often defined as social exclusion due to a lack of power, resources and status that leads to limited opportunity or accessibility. Footnote 11  

Numerous studies have highlighted barriers faced by Indigenous people who reside in urban and rural or remote locations when accessing PHC services, such as discrimination, racism, lack of culturally safe care and inaccessible care. Footnote 12 Footnote 13 Footnote 14 Footnote 15 Despite several qualitative accounts of these negative experiences, a deep search of the literature indicates that there still has not been a qualitative review conducted on this topic. Addressing this literature gap may assist policy makers, health care managers and professionals, and researchers in identifying key areas for improving PHC access and quality across Canada.

Accordingly, we aimed to explore the following research questions:

• What are the experiences and perspectives of Indigenous people with PHC services in Canada?
• How do these experiences and perspectives differ when comparing PHC services provided in urban versus rural or remote settings?
• What are the recommendations of Indigenous people to improve the quality of PHC services delivered in Canada?

Protocol and registration

This systematic review is registered in the International Prospective Register of Systematic Reviews (PROSPERO CRD42020192353).

Eligibility criteria and search strategy

Our review was guided by Joanna Briggs Institute ( JBI ) methodology for systematic reviews of qualitative evidence; Footnote 16 the detailed protocol has been described elsewhere. Footnote 17 English and French qualitative and mixed-methods articles were considered for inclusion if they focussed on first- or second-hand experiences of Indigenous people in Canada when receiving PHC services. There were no restrictions with respect to publication year or research participants’ age, gender, medical condition or geographical location.

A preliminary search of CINAHL and PubMed was conducted to identify keywords and terms relevant to the research questions. A complete search strategy was then developed and tailored to each selected database: MEDLINE, CINAHL , PubMed, PsycInfo, Embase and Web of Science ( Table 1 ). Grey literature was also searched on Google Scholar, Bielefeld Academic Search Engine, ProQuest Dissertations and Theses and other relevant websites (e.g. Native Health Database and National Collaborating Centre for Indigenous Health). Furthermore, the reference list of each included article was examined to identify any additional studies for the review in order to obtain ancestry sources.

Study selection

Following the search, all identified citations were uploaded on Rayyan. Footnote 18 Next, two authors (GB and SA) independently screened the articles’ titles and abstracts against the inclusion criteria. They then independently examined selected articles in full. Reasons for excluding certain articles were noted, and no major discrepancy arose between the two reviewers; hence, the assistance of a third reviewer was not needed. Once all included articles were identified, they performed an independent quality assessment using JBI ’s Critical Appraisal Checklist for Qualitative Research. Footnote 19

Data extraction and synthesis

All pertinent data from the included studies were then retrieved using the JBI data extraction tool. Footnote 16 The extracted data included information on the studies’ methodology, approach to analysis, phenomena of interest, geographical location, participant characteristics, findings and illustrations. These data were then synthesized following JBI ’s meta-aggregation approach; the findings and illustrations were aggregated into categories and further grouped together to create a comprehensive set of synthesized findings. Finally, consistent with Munn et al., Footnote 20 these synthesized findings were assigned a ConQual score to demonstrate their dependability and credibility.

The search yielded a total of 2503 articles from the academic databases and 12 articles from the grey literature and ancestry searches. Overall, 22 articles were included in this review.

Figure 1 illustrates the PRISMA flow diagram of the search results and study selection process. Footnote 21 The methodological quality of all included articles was moderate to high; therefore, no studies were excluded following their appraisal ( Table 2 ).

Characteristics of included studies

The detailed characteristics of the included studies are presented in Table 3 . Articles were published between 2001 and 2020. Various qualitative approaches were used in these studies. These approaches included participatory research design, Footnote 12 Footnote 22 Footnote 23 Footnote 24 Footnote 25 Footnote 26 Footnote 27 Indigenous methodologies, Footnote 13 Footnote 15 Footnote 24 Footnote 28 Footnote 29 Footnote 30 Footnote 31 ethnography, Footnote 25 Footnote 27 Footnote 32 Footnote 33 phenomenology, Footnote 34 Footnote 35 case study, Footnote 14 Footnote 36 qualitative description, Footnote 12 Footnote 37 grounded theory Footnote 38 and mixed methods. Footnote 39 Eleven out of 22 studies represented experiences from major Canadian metropolitan areas, including Calgary, Footnote 25 Footnote 38 Edmonton, Footnote 37 Ottawa, Footnote 23 Toronto, Footnote 29 Footnote 30 Footnote 34 Vancouver Footnote 15 Footnote 28 and Winnipeg, Footnote 13 Footnote 31 while 10 studies were conducted in rural or remote communities within the provinces of British Columbia, Footnote 26 Footnote 27 Footnote 39 Manitoba, Footnote 33 Nova Scotia, Footnote 12 Footnote 24 Ontario Footnote 24 and Quebec Footnote 14 and within the Canadian territories of Nunavut Footnote 22 and Northwest Territories. Footnote 32 Finally, one article included findings from multiple provinces and locations, with participants from urban southern and rural Alberta, urban northern and remote northern Ontario, and rural British Columbia. Footnote 35 The categorization of urban versus rural or remote settings was based on the study setting as defined by the authors as well as by the population density; urban areas are characterized as having at least 400 people per square kilometre, and the opposite is true (< 400/km 2 ) for rural or remote regions. Footnote 40  

Research participants of included studies were from First Nations, Métis and Inuit background, and overall were between the ages of 16 and 79 years. Their reasons for seeking PHC and their pre-existing medical conditions also varied (e.g. cancer, arthritis, diabetes, cardiovascular disease, human immunodeficiency virus and mental health disorders).

Synthesized findings

Table 4 presents an overview of the individual findings of our review. Three major synthesized findings emerged from these, pertaining to our first and second research questions, and another one arose for the third research question. Table 5 is a summary of findings containing each synthesized finding’s level of dependability and credibility, as well as ConQual score (which rates confidence in the quality of evidence from reviews of qualitative research) to help their evaluation and integration into education, practice and policy.

Synthesized finding one: supportive and respectful experiences

Synthesized finding one demonstrates that certain experiences of Indigenous people when receiving PHC were considered supportive and respectful. This metasynthesis was developed from four categories that included 15 findings. Some First Nations, Métis and Inuit participants expressed that they had supportive and respectful encounters with PHC providers, as they felt safe, secure, listened to and freely able to express themselves without judgment. This finding was affirmed by one of the First Nations and Métis participants living in an urban location as she described her prenatal care: “My G.P. is just a fantastic doctor because he sits there and actually listens to his patients. He respects that they know as much about what’s going on with their body as he probably does, if not more.” Footnote 31 ,p 165 Another First Nations woman residing in a remote community echoed this positive experience:

When my husband died, my [family] doctor phoned me to tell me to come in to talk with him and see if I was okay and talk about things that happened … and he explained it to me really softly; things like this happen. He was really caring. And that was the best thing that ever happened to me was him phoning me on his own to tell me that. Footnote 32 ,p.140

Participants also greatly appreciated when PHC providers were supportive, accessible and offered as much time as needed to address all of their concerns; similar experiences were described by those residing in urban, rural and remote areas. Having access to dependable information and providers made a significant difference for many of the participants. Many First Nations women in rural communities said that their community health nurses were “always there” to assist them with their health needs. Footnote 12

Moreover, Indigenous participants from urban, rural and remote locations valued health care providers demonstrating respect towards them, their family and their cultural identity. Providers were expected to exhibit culturally sensitive care and to have had training and to possess knowledge about Indigenous history, traditions, customs and challenges. When these qualities were present, PHC providers were perceived to be more helpful and genuine. Overall, across all settings—urban, remote and rural—instances of supportive and respectful PHC were experienced by First Nations, Métis and Inuit participants.

Synthesized finding two: discriminatory attitudes and maltreatment

Synthesized finding two reveals that Indigenous people experienced various forms of discrimination and maltreatment that most often resulted in them not receiving adequate and quality primary health care; thus, many adopted strategies to cope with such challenges. Six categories and 58 findings were represented in this metasynthesis.

There were numerous accounts in which participants shared their experiences of health care providers making comments or exhibiting behaviours based on discrimination. First Nations, Métis and Inuit patients in urban and rural or remote areas were immediately assumed to have tobacco and drug addiction, to be intoxicated by alcohol, to have abusive partners, to mistreat their children, or any combination of these, without any actual justification or evidence of such claims. Footnote 13 Footnote 14 Footnote 15 Footnote 25 Footnote 34 Footnote 38 As reported by an aggravated Inuit participant from a remote community, “I arrived at the clinic and the first thing the doctor asked me is if I’m a smoker. Is that normal? It’s as if she assumed that because I’m Inuit I’m a smoker. I don’t think that is fair.” Footnote 14 ,p.293 A First Nations woman in an urban setting also commented, “Oh I wouldn’t get the proper care if I needed it, like if I was in pain. They thought I’d be there just to get high.” Footnote 34 ,p.122

These negative stereotypes automatically formed the basis of the care that Indigenous people received even though they did not necessarily apply to the specific situation of each patient. Consequently, these patients were generally dismissed, turned away and unable to receive the proper medical care they required, leading to severe complications or even death. Footnote 32

Such situations were experienced in urban, rural and remote locations. As reported by a participant in Goodman et al.:

I reached out on my right side and it really hurt. I went to a DTES [Downtown Eastside] clinic to the doctor and she told me to walk it off. I went to sleep and woke up and thought I was dying—big pain in my chest. I collapsed a lung. I think she thought I wanted painkillers, but I was really hurt. Footnote 15 ,p.90

Another First Nations participant reported in Fontaine et al.:

I lost [a family member]. He did drink a lot. And anyway, he got sick and every time he went to the Nursing Station, the nurse in charge there told him, he said, “Oh, you have a severe hangover,” without checking him. And he went about three, I know three times for sure, whether the fourth time, I can’t remember. But anyway, they kept chasing him home, “There’s nothing wrong with you. You’re just ... quit drinking, get, you’re ... hung over,” you know. Anyway, he died one night in ... his home. Footnote 13 ,p.5

Besides the deliberate omission of quality care, some Indigenous patients also sensed that certain PHC providers had discriminatory attitudes towards Indigenous people. In some cases, as soon as First Nations, Métis and Inuit participants from both urban and rural or remote locations entered a clinic, they instantly felt unwelcomed and judged, based on how the health providers and staff looked at and talked to them. This was further extended in their subsequent interactions, as explained by one frustrated participant in Goodman et al.:

So [the nurse] showed me how to [inject], but she was so mean about it. She was not accommodating. She said I should know how to do it myself. They treated me like crap, and I know it was because I was Native. We all know because of the look—there’s a look. When you need the medical care, we put up with it. We shouldn’t have to. We bleed the same way, we birth the same way. We have no choice … Footnote 15 ,p.89

Some participants in urban as well as rural or remote areas thought that the negative attitudes and judgments of PHC providers may have stemmed from their lack of understanding or disregard for Indigenous life experiences, history, background and socioeconomic and political circumstances, Footnote 23 Footnote 25 Footnote 37 but this was particularly emphasized by individuals living in rural or remote communities. There were instances in which First Nations women living on-reserve, who were required to travel to the city due to the unavailability of specialized services or diagnostic tools in their communities, were constantly fined for being late or missing their appointments in the city, even though the primary reasons for missing the appointments were that they were not able to afford a phone, or that there were traffic delays resulting from travelling a long distance. Footnote 32 As Browne and Fiske reported, “The embarrassment associated with being late or with being asked to pay the cancellation fine when they lacked the money shaped women’s experiences and left women with the sense that they were being blamed for circumstances beyond their control.” Footnote 32 ,p.138

As a result of these various negative interactions with PHC providers and the health care system, numerous Indigenous patients learned to cope by deciding not to disclose their cultural identity and medical history, presenting themselves to look more credible, or simply avoiding seeking care. Certain participants in Goodman et al., Footnote 15 Monchalin et al. Footnote 30 and Oelke Footnote 25 divulged having omitted sharing their Indigenous background and certain aspects of their medical history to PHC providers, as they believed that this information would not be beneficial for their care, and worse, might only lead to discriminatory acts. Others chose to dress or behave differently in front of PHC providers to gain respect. Footnote 32 Indeed, one First Nations participant living in a remote community elaborated in Browne and Fiske:

It seemed like any time I go to a doctor I would have to be well dressed. I have to be on my best behaviour and talking and I have to sound educated to get any kind of respect…. If I was sicker than a dog and if I didn’t want to talk and I didn’t care how I sounded or whatever, I’d get treated … like lower than low. But if I was dressed appropriately and spoke really well, like I usually do, then I’d get treated differently…. But why do I have to try harder to get any kind of respect? You know, why do I have to explain? Footnote 32 ,p.135

In certain cases, Indigenous patients delayed seeking care as long as possible to prevent being subjected to traumatic and discriminatory experiences. Footnote 15 Footnote 25 They sought health care only when their illness or symptoms had become serious, and they were left with no choice. Footnote 15 Footnote 25 Many participants from both urban and rural or remote regions admitted to distrusting PHC providers. Footnote 13 Footnote 24 Footnote 26 Footnote 34 However, Inuit and First Nations patients residing in rural or remote communities expressed significant concerns about whether providers were adequately protecting their privacy and confidentiality. Footnote 14 Footnote 22 Footnote 24

When comparing the PHC experiences of First Nations, Métis and Inuit participants in urban and rural or remote settings, we found very limited differences. As demonstrated above, similar to Indigenous patients living in urban areas, rural or remote participants also faced discriminatory attitudes and dismissive and judgmental care, forcing them to develop strategies for coping with such maltreatment. One particular geographical difference, however, was the fear of privacy and confidentiality breach. Although one participant in the study by Bucharski et al., Footnote 37 which included First Nations and Métis women in an urban setting, expressed their concern about privacy and confidentiality, multiple First Nations, Métis and Inuit participants in rural or remote locations highlighted this fear. This concern may be more significant for residents of close-knit, small communities, as are often found in rural or remote locations. For these participants, PHC providers who were not considered “locals” were at times preferred, since they did not know anyone from the community and/or they would only be temporarily working in the community. Footnote 14

Synthesized finding three: structural and practice issues

Synthesized finding three highlights issues related to the PHC system’s structure and practices that led Indigenous people to experience inaccessible and incomplete care. Four categories and 32 findings formed the basis of this metasynthesis.

Our review found that major shortages of PHC providers existed across Canada. As a result, the Indigenous patients in the studies we reviewed who lived in both urban and rural or remote settings experienced lack of continuity of care, inaccessibility, short visits and inadequate health teaching and promotion. Many First Nations and Métis people who lived in cities did not have a family doctor; hence, they most often opted to visit walk-in clinics where various physicians rotate to cover the hours, and patients did not necessarily see the same physician during all their visits. Footnote 25 Footnote 35 Establishing a therapeutic physician–patient relationship may be impossible in such brief encounters. This issue was even more problematic in rural and remote communities, where the transiency of PHC providers is prominent, and their recruitment and retention are challenging. Footnote 22 Footnote 27 Footnote 32 Footnote 35 Some First Nations and Métis participants in Jacklin et al. “felt that once doctors gain experience, ‘they want more money here, and if they don’t get it, they quit and move on.’” Footnote 35 ,pp.109-110

Additionally, Inuit and First Nations patients who lived in rural or remote regions could not easily access certain medical care and preventive services. Footnote 12 Footnote 14 Footnote 34 Footnote 39 Minimal or no time was dedicated to health teaching or promotion, especially in a manner that was culturally appropriate. Footnote 14 Indeed, as one of the Inuit participants in Fraser and Nadeau confirmed,

If I was diabetic, for example, I would need information, what can I eat and what can I not. My Grandmother, they did not give her any ideas what she can eat and what she cannot do…. They need to have examples, recipes, and take less salt and sugar. And, how to make bannock. Like when you make spaghetti, use the whole wheat spaghetti. All those nutrition information. People need encouragement. Footnote 14 ,p.292

Though health promotion materials, such as brochures and videos, may be available, First Nations and Métis participants in Oekle Footnote 25 further highlighted the absence of culturally adapted verbal and visual teachings. One participant reported, “The prevention services that are available for First Nations are what’s ever in the hype for the White crowd. So if it’s a White problem, a White prevention problem, those are what’s available.” Footnote 25 ,p.147 Also, visits of First Nations and Métis patients with PHC providers in metropolitan, rural and remote areas were commonly described as “rushed,” there being “never enough time,” “a race to fit as much patients as possible” and “similar to an assembly line.” Footnote 23 Footnote 31 Footnote 33 Footnote 35 For this reason, many felt that their needs and concerns were not entirely addressed. Footnote 33 Footnote 35

In regard to other geographical considerations, despite the differences of PHC services offered in urban and rural or remote settings, PHC structure and practices in all three settings similarly affected the accessibility of care experienced by Indigenous people. For instance, in rural or remote locations, hospitals and specialized care did not necessarily exist. PHC providers within these settings therefore generally assumed an expanded role to offer additional services to community; however, this had its limits, as certain diagnostic tools and specialists were only available in the major cities. Footnote 12 Footnote 14 In urban areas, First Nations and Métis people encountered comparable accessibility challenges, including the lack of PHC services for children and youth, and mental health support. Footnote 25

Synthesized finding four: recommendations

Synthesized finding four focussed on Indigenous patients’ recommendations for greater emphasis on culturally sensitive empathic care, recruitment of Indigenous PHC providers, accessibility and health teaching and promotion. This last metasynthesis was created from five categories and 25 findings.

Numerous First Nations, Métis and Inuit participants emphasized the importance of cultural sensitivity and empathy, indicating that it is paramount that all PHC providers and staff are familiar with Indigenous history and practices. Footnote 34 Footnote 33 Footnote 37 They expressed the idea that only through education would providers and staff start to be empathic and respectful towards Indigenous peoples. Footnote 13 Footnote 37 Besides provider–patient interactions, cultural sensitivity could also be conveyed in the design of the physical spaces where PHC services are delivered. Participants suggested that incorporating Indigenous symbols or art onto the walls of the clinic could provide a more welcoming environment for patients. Footnote 29

Participants also suggested that greater funding should be allocated to recruiting PHC providers and staff, particularly those with an Indigenous background. Footnote 12 Footnote 23 Footnote 25 Footnote 34 Footnote 35 Footnote 36 As one participant explained, “I just think they need to have more Native doctors and nurses ... for Aboriginal peoples to feel comfortable ... or people that are experienced in Aboriginal culture. It would be nice to have our own Aboriginal people running it.” Footnote 23 ,p.83

Furthermore, there is a great need to enhance health teaching and promotion in all PHC settings. Footnote 14 Footnote 25 Footnote 33 Footnote 35 Health teaching and promotion must also appropriately consider the cultural context and challenges of Indigenous peoples for these to be perceived as beneficial. Footnote 25

Lastly, when geographical differences between urban and rural or remote settings were examined, minor nuances were noticed. Although recommendations for culturally sensitive empathic care, recruitment of Indigenous PHC providers, improved accessibility and health education were common across First Nations, Métis and Inuit participants from urban and rural or remote regions, certain recommendations were given more emphasis within one particular setting. For example, the need for culturally sensitive empathic care and recruitment of Indigenous PHC providers was pointed out more by First Nations and Métis participants residing in the urban areas than those in rural or remote communities, who mostly emphasized suggestions for accessibility and health teaching and promotion.

The purpose of this qualitative systematic review was to explore Indigenous people’s experiences in Canada with PHC services, determine urban versus rural or remote differences and identify recommendations for quality improvement. Three major synthesized findings were revealed—supportive and respectful experiences, discriminatory attitudes and systemic challenges faced by Indigenous patients—along with one synthesized finding on their specific recommendations.

The conflicting PHC experiences of First Nations, Métis and Inuit participants, wherein instances of supportive and respectful interactions were revealed while discriminatory attitudes and systemic barriers simultaneously exist, attest to the multifaceted complexity of the situation. The interplay between systemic, institutional and interpersonal factors may have influenced these conflicting PHC experiences. The historical and intergenerational traumas of colonization, forced assimilation and residential schools continue to leave a lasting effect on the health care system, contributing to systemic discrimination that is ingrained within Canada’s health care policies and structures. The policies and structures of the health care system often reflect historical biases and stereotypes rooted in the colonial era and the legacy of residential schools. These biases manifest in policies that fail to adequately address the unique health challenges faced by Indigenous populations, resulting in unequal access to health care resources and services.

Additionally, there is limited Indigenous representation in health care policy making and leadership. This absence of perspective leads to a health care system that often does not fully understand or prioritize the health needs of Indigenous communities, further alienating them from the system. Although at the institutional level some organizations have invested in cultural sensitivity and antiracism training for health care providers, which can result in more positive experiences for Indigenous patients, individual health care providers within these organizations may still hold conscious or unconscious biases against Indigenous peoples, which can negatively affect the quality of care received.

In sum, the disparity in PHC experiences among Indigenous communities arises from a multifaceted set of conditions that operate at various levels. While systemic issues such as discrimination and racism can lead to negative experiences, targeted interventions and personal relationships can sometimes result in positive interactions. Therefore, efforts to improve PHC health care for Indigenous people in Canada need to be comprehensive, multipronged and culturally sensitive to effectively address this complex situation.

Indigenous people in this review valued safe, accessible and respectful care, aligning with their basic human rights as outlined in the United Nations Declaration on the Rights of Indigenous Peoples Footnote 41 and the Truth and Reconciliation Commission ( TRC ) of Canada’s calls to action. Footnote 42 Canadian governments and other sectors are nowhere near fulfilling these calls to action, Footnote 43 particularly in the domain of health. At the current pace, completing all the calls to action will take until 2065. Footnote 43 This shortcoming is particularly evident in our review; significant findings from most of the included articles illustrated considerable discrimination, racism and maltreatment of Indigenous peoples. Synthesized findings two and three echoed these unjust experiences that Indigenous patients had to face (and potentially continue to face).

The discrimination and racism faced by the Indigenous people in this review negatively affected their overall health and well-being. While accessing PHC , they often felt uncomfortable and judged due to providers’ negative stereotypes of Indigenous people. These attitudes, along with dismissive care and maltreatment, caused Indigenous people in the studies reviewed to avoid seeking care, exacerbating medical symptoms and potentially leading to severe complications or death.

Similar findings in other studies show that past experiences of discrimination and racism made Indigenous people more likely to avoid medical assistance, contributing to unfavourable health outcomes. Footnote 3 Footnote 44 The life expectancy of Indigenous people is five years less than that of the general population. Footnote 3 Additionally, the prevalence of infectious diseases, chronic conditions and mental health disorders as well as infant mortality rates among Indigenous populations in Canada are significantly higher compared to non-Indigenous Canadians. Footnote 3 These disparities were further exacerbated during the pandemic, particularly for Indigenous people in rural and remote communities, who contracted COVID-19 at rates three to four times the national average—rising to seven and eight times in some weeks. Footnote 45

In this review, First Nations, Métis and Inuit participants living in rural or remote locations were also more likely to experience maltreatment and dismissive care as well as issues with privacy, confidentiality and accessibility. Footnote 1 Footnote 12 Footnote 13 Footnote 14 Footnote 15 Footnote 22 Footnote 24 Footnote 34 These particular issues could be attributed to the close-knit nature of small communities and the structural barriers associated with the lack of health care infrastructure within these areas. Even though we identified 10 studies of rural and remote regions, there were still limited findings on Indigenous people’s PHC experiences in such regions, which prevented a deeper analysis of geographical considerations. The inclusion of participants from diverse geographical settings, however, adds another layer of complexity and richness to the findings, as it allows for a more nuanced understanding of how location may impact health care experiences. Hence, more research on PHC experiences of Indigenous peoples living in rural or remote communities is required to comprehensively understand the challenges they encounter.

Overall, the synthesized findings of this review emphasize the urgent need to address longstanding discrimination and racism, while also advocating for the implementation of sustainable changes to prevent further endangerment of Indigenous lives in Canada.

Recommendations

Indigenous patients have highlighted numerous problems with PHC services, leading to calls for changes in health care practice, structures and policy development. This includes emphasizing Indigenous culture in training, improving cross-cultural communication and prioritizing education to reduce negative experiences, all of which are in line with the TRC calls to action numbers 23 and 24. Footnote 42 Footnote 46 Despite an increase in cultural competency and antiracism training, Footnote 47 there is still a need to increase the methodological rigour and standardization of such training, as well as to examine their long-term effects while stressing Indigenous community partnerships. Footnote 46 Footnote 48 Health care providers should also practise some form of self-reflection, such as journalling or meditation, to examine personal biases. Footnote 49 This approach, aligned with cultural humility principles, teaches providers to defer to clients as experts in their own culture, creating a safer, nonjudgmental environment with the voices of Indigenous patients at its forefront. Footnote 49

However, the focus of change should not be solely on health care practice and providers. Systemic transformation, including more funding and support for Indigenous communities, must happen concurrently in order to establish meaningful traction towards better patient care. There is a nationwide shortage of Indigenous PHC providers and staff that requires immediate attention. As emphasized in the TRC calls to action, “We call upon all levels of government to increase the number of Aboriginal professionals working in the health-care field [and to] ensure the retention of Aboriginal health care providers in Aboriginal communities…” Footnote 42 ,p.164 These key actors are critical in all sectors of society, from frontline and academia to research and policy development. Footnote 49 At this point, the inclusion of Indigenous people across all sectors should be the norm, and not merely an afterthought.

Strengths and limitations

This is the first qualitative review exploring Indigenous people’s experiences with PHC services across Canada, serving as a valuable guide for policy makers and health care providers to identify target areas for improvement. Only by incorporating the voices of service users into health policies and interventions will the PHC and health care system as a whole deliver services that truly and meaningfully meet patients’ and communities’ needs. However, a limitation of qualitative review stems from the pooling of findings that are context-dependent, thus potentially reducing the emphasis on important contextual factors. Nevertheless, through our use of the chosen methodology (i.e. meta-aggregation), the traditions of qualitative research were maintained, preserving the context of each study and aggregating findings into a combined whole. Footnote 16 This strengthens the review’s findings, making them more appropriate for guiding policy makers and health care providers.

Despite some supportive and respectful encounters with PHC providers, the majority of the experiences of Indigenous peoples were inadequate, unjust and filled with discriminatory attitudes and behaviours. Certainly, more work needs to be done before Canada meets all five core principles of the Canada Health Act . Footnote 7 These principles are the basis of our health care system and should be applicable to all Canadians, irrespective of their age, gender, race and cultural background. Footnote 7 Therefore, it is the duty of Canadian governments, other sectors and citizens to ensure that Indigenous people receive the health care they deserve.

Acknowledgements

We acknowledge Ms. Anita Kiafar for her ideas and feedback during the initial conceptualization phase of this systematic review. While not involved in the writing, her input during discussions was appreciated.

This research did not receive any funding.

Conflicts of interest

The authors declare there are no conflicts of interest.

Authors’ contributions and statement

• GB, SA—conceptualization.
• GB, SA—formal analysis.
• GB—project administration.
• GB, SA—visualization.
• GB—writing—original draft.
• GB, SA—review & editing.

The content and views expressed in this article are those of the authors and do not necessarily reflect those of the Government of Canada.

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