lived experience definition in qualitative research

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> Volume 48 Issue 3
> Exploring what the Notion of ‘Lived Experience’ Offers...

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Exploring what the notion of ‘lived experience’ offers for social policy analysis.

Published online by Cambridge University Press: 24 August 2018

In this article, we suggest that social policy may be on the cusp of a large-scale adoption of the notion of lived experience. However, within social policy and allied disciplines, the growing use of the term ‘lived experience’ is unaccompanied by discussion of what it may mean or imply. We argue that now is a good time to consider what this term could mean for social policy analysis. The peculiarities of Anglo-centric usage of the broader term ‘experience’ are explored, before we identify and discuss several roots from which understandings of ‘lived experience’ as a concept and a research strategy have grown: namely, phenomenology, feminist writing and ethnography. Drawing on multiple historical and contemporary international literatures, we identify a set of dilemmas and propositions around: assumed authenticity, questioning taken-for-grantedness, intercorporeality, embodied subjectivity; political strategies of recognition, risks of essentialising, and immediacy of unique personal experiences versus inscription of discourse. We argue that lived experience can inform sharp critique and offer an innovative window on aspects of the ‘shared typical’. Our central intention is to encourage and frame debate over what lived experience could mean theoretically and methodologically within social policy contexts and what the implications may be for its continued use.

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Volume 48, Issue 3
IAN MCINTOSH (a1) and SHARON WRIGHT (a2)
DOI: https://doi.org/10.1017/S0047279418000570

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lived experience

Quick reference.

1. Personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people. It may also refer to knowledge of people gained from direct face-to-face interaction rather than through a technological medium.

2. In phenomenology, our situated, immediate, activities and encounters in everyday experience, prereflexively taken for granted as reality rather than as something perceived or represented: see also natural attitude .

3. From Althusser's structuralist Marxist perspective, all human activity, which he emphasized is not a given or pure ‘reality’, but a ‘peculiar relationship to the real’ which is ‘identical with’ ideology.

From: lived experience in A Dictionary of Media and Communication »

Subjects: Media studies

A specific method for qualitative medical research: the IPSE (Inductive Process to analyze the Structure of lived Experience) approach

Jordan Sibeoni ORCID: orcid.org/0000-0001-9613-5513 1 , 2 ,
Laurence Verneuil 2 ,
Emilie Manolios 2 , 3 &
Anne Révah-Levy 1 , 2

BMC Medical Research Methodology volume 20 , Article number: 216 ( 2020 ) Cite this article

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This paper reports the construction and use of a specific method for qualitative medical research: The Inductive Process to Analyze the Structure of lived Experience (IPSE), an inductive and phenomenological approach designed to gain the closest access possible to the patients’ experience and to produce concrete recommendations for improving care. This paper describes this innovative method.

IPSE has five steps: 1) set up a research group, 2) ensure the originality of the research, 3) organize recruitment and sampling intended to optimize exemplarity, 4) collect data that enable entry into the subjects’ experience, and 5) analyze the data. This final stage is composed of one individual descriptive phase, followed by two group phases: i) structure the experience, and ii) translate the findings into concrete proposals that make a difference in care.

This innovative method has provided original findings that have opened up new avenues of research and have important practical implications, including (1) the development of patient-reported outcomes, (2) clinical recommendations concerning assessment and treatment, (3) innovative ways to improve communication between patients and doctors, and (4) new insights for medical pedagogy.

Conclusions

IPSE is a qualitative method specifically developed for clinical medical research to reach concrete proposals, easily combined with quantitative research within a mixed-method study design and then directly integrated within evidence-based medicine.

Peer Review reports

The need for a new qualitative method conceptualized by physicians

As the role of patients in their own medical management radically evolves, more collaborative practices that consider the patient’s perspective in this process are progressively replacing the older approach of paternalistic medicine [ 1 ]. Patients’ preferences, choices, and needs have been placed at the core of treatment. This idea relies on a paradigm shift that places the patient’s lived experience at the center of the care process. That is, patients are now considered to be the expert on their own lived experience; and their voices must be heard to enable the achievement of a more person-centered medicine. This paradigm shift is illustrated by the development of concepts such as patient experts [ 2 ], patient partners [ 3 ], and peer-support workers in psychiatry care [ 4 ], but also by the evolution of the principles of evidence-based medicine (EBM). The concept of EBM emerged in the 1980s with the aim of rationalizing medical practices and hierarchizing the medical literature. This concept first relied only on (i) external clinical data (that is, results from randomized control trials and meta-analysis), with (ii) medical expertise subsequently included, and most recently, (iii) patients’ preferences added [ 5 ]. EBM considers, nowadays, that the best-informed medical decision is the one at the intersection of a Venn diagram composed by these three circles. This paradigm shift is also illustrated by the development of new concepts intended to capture patients’ preferences better: patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs). According to the FDA-NIH Biomarker-Working-Group glossary definition, a PRO is “a measurement based on a report that comes directly from the patient, about the status of a patient’s health condition without amendments or interpretations of the patient’s response by a clinician or anyone else” [ 6 ]. Today, clinical trials use PROs/PROMs increasingly often [ 7 ]. They are essential outcome measures, demanded by health authorities and regulatory agencies, and useful for physicians, patients, and health policy-makers. In this new era of person-centered medicine, many authors have concluded that an initial phase of qualitative research is needed early in the construction of all PRO tools to explore patients’ experiences [ 8 , 9 , 10 ]. The PRO Good Research Practices Task Force of the International Society for Pharmacoeconomics and Outcomes Research (IPSOR) [ 10 , 11 ] has also published suggestions for conducting qualitative studies intended to support the content validity of PRO instruments.

Qualitative health research (QHR) is a relatively recent field, covering a broad area — from the description of illness experience to the sociocultural organization of health care — and using a myriad of qualitative methods coming from other theoretical fields, mostly social sciences: sociology (i.e., symbolic interactionism with grounded theory [ 12 ], ethnography [ 13 ]), psychology (i.e. phenomenological psychology [ 14 , 15 , 16 , 17 ]), case study, narrative, and linguistics [ 18 , 19 ]. Other qualitative methods have been developed specifically for QHR in applied disciplines, mainly by and for nursing sciences [ 20 , 21 ], and in primary care [ 22 ], focusing on specific issues (e.g. experience of specific illness, of caring, of help seeking). Qualitative research is now booming in biomedical clinical studies [ 23 ] in many medical specialties, aimed at obtaining an in-depth understanding of phenomena, directly from the perspective of the people experiencing them. These studies have either applied a qualitative method from another field, or relied exclusively on a thematic analysis approach intended only to structure how the data are analyzed and the results presented [ 24 ]. According to Morse, one goal of QHR is to “bridge the gap between scientific evidence and clinical practice” [ 20 ]. This is already the case at a “review” level with the work of the “Cochrane Qualitative & Implementation Methods Group” for the dissemination and incorporation of qualitative results in systematic reviews, that is, qualitative evidence synthesis [ 25 ]. But, so far, there has been no medical qualitative research method specifically tailored to produce rigorous data from the lived experiences of both patients and physicians to directly inform EBM. For instance, there are no specific qualitative methods to explore the perceived efficacy of a treatment to determine efficacy criteria relevant for patients themselves. Medical research should expect qualitative studies to produce knowledge with the potential to improve patients’ care and lives, and not simply conceptual knowledge, that is, knowledge for its own sake, as qualitative methods from the social sciences produce [ 20 ]. Within nursing research, Thorne has developed “interpretive description”, an inductive qualitative method with roots in phenomenology, ethnography, and grounded theory but which endeavors not to theorize the results but rather to offer practical outcomes for nurses’ daily practices [ 21 ]. Although applicable to other areas of health, including clinical medical practice [ 26 , 27 ], interpretive description does not focus on the lived experience of the stakeholders but rather on contextualizing illnesses in multiple domains (e.g. experiential, spiritual, political, cultural, etc.).

Our group, which has worked more than a decade on the analysis, dissemination, and use of qualitative methods in medicine, has developed expertise in their use for exploring complex questions around the experience of diseases and their treatment [ 28 , 29 , 30 ]. We consider that physicians have specific concerns and that their medical training and professional experience enable them to contribute to the field of qualitative medical research differently than nurses and other healthcare professionals do. Thus, as both medical doctors and experienced qualitative researchers, we have become convinced of the need for a new qualitative method designed by physicians for addressing specific issues in clinical medical research.

We advocate that this new method should meet several criteria:

To thoroughly capture the lived experience of patients and other stakeholders: how they live their disease and its treatment and how they recount it [ 31 ], not as an end but a means, to connect experiential knowledge with physicians’ medical knowledge and to develop concrete proposals for improving the health care pathway, treatment, and clinical research.

To be completely structured to allow a group of physicians, after receiving appropriate training, to conduct rigorous, systematic qualitative medical studies, that is, with all stages of the design clearly described and operationalized.

To use vocabulary and concepts that make qualitative medical research accessible and meaningful for physicians and for administrative and policy-making bodies

To directly involve patients within the research process

To integrate qualitative medical research within EBM.

Since none of the existing qualitative methods meet all these criteria, we decided to progressively develop our own: Inductive Process to analyze the Structure of lived Experience (IPSE).

IPSE: theoretical backgrounds

Some qualitative methods have been suggested in medical research, such as qualitative theory-development studies or qualitative elicitation research within a cognitive model [ 32 ]. These are based on directive, task-oriented interviews that we think excessively restrict the direction of the conversations for both participants and interviewers. We want instead to keep the research open to what the participants’ narratives of the experience can add, to allow them to share what they have lived. We strongly believe that truly taking their experience in dealing with an illness or its treatment into account requires letting them recount it freely, as they want to and see fit. The exploration of the lived experience is for us the core of what qualitative methodology can contribute to medical research. To do so, the method must fit into the constructivist paradigm [ 33 , 34 ] and be informed by a phenomenological approach [ 14 ], but without overly theorizing the underlying epistemological and philosophical knowledge, which would impede its practicability.

Lived experience can be defined as personal knowledge of the world gained through direct participation and involvement in the event or phenomenon. Lived experience refers to human activities that are immediate, situated and daily, which are lived without thinking about or paying attention to them (pre-reflexive experience) [ 35 ].

Constructivism comes from the work of the philosopher Immanuel Kant [ 36 ]. It considers that knowledge emerges from a human process of construction. As a research paradigm, constructivism conceives knowledge as a shared construction built on the encounter between researchers and research participants [ 33 , 34 ]. Many qualitative methods, including ethnographic, narrative, and phenomenological, fit into this paradigm, —or have been adapted to it, such as Charmaz’s adaptation of Grounded Theory from a constructivist perspective [ 37 ]. IPSE fits epistemologically into a constructivist paradigm as we postulate that the production of knowledge relies on three elements: (i) subjectivity as a space for constructing human reality, (ii) intersubjectivity as a strategy for accessing valid knowledge of human reality, and (iii) understanding that human reality takes place in daily life. These elements underlie the strengths of this method, which is characterized by flexibility in the progressive construction of the object under study, constantly adjusted to the characteristics and complexity of human phenomena, and always takes the subjectivity of the researchers and the participants into account while combining several techniques of data collection and analysis.

Phenomenology literally means the study of what appears . At the very beginning of the twentieth century, phenomenology became the name of a philosophical current founded by Husserl [ 38 ]. He aimed to study how objects appear to the subject’s consciousness and to describe the essence of a phenomenon not by describing the object as it exists but by describing the experience of the subject. Phenomenology can be descriptive or interpretive, that is, associated with hermeneutics (science of interpretation) [ 39 ]. Within qualitative research, phenomenological approaches seek to capture the lived experience of a subject about a phenomenon, to understand how this phenomenon appears in the individual’s conscious experience. In the field of phenomenology, experience is conceived as uniquely perspectival, embodied, and situated. Phenomenological approaches are particularly relevant for conducting research on experiences, thoughts, imagination, intentions, desires or volition. There are many phenomenological qualitative approaches, coming mainly from the field of psychology, either descriptive (Giorgi’s descriptive phenomenological approach [ 14 ], its adaptation by Colaizzi [ 40 ], and Moustakas’s heuristic method [ 16 ]) or interpretative/hermeneutic (interpretative phenomenological analysis (IPA) and Van Mannen’s approach) [ 15 , 17 ]. Many of them use a theoretical vocabulary and philosophical concepts that are not easily accessible for physicians. Our early work used well-known qualitative phenomenological approaches: one descriptive, that is, Colaizzi’s method [ 41 ] and one hermeneutic: IPA [ 42 , 43 , 44 , 45 , 46 , 47 , 48 ].

Recently, philosophers working in the field of phenomenology have criticized some of these methods. Zahavi wrote about the approaches of IPA and Van Mannen that “qualitative health researchers interested in phenomenology should look elsewhere for theoretical inspiration and methodological guidance” [ 49 ]. As for Moustakas’s method, Appelbaum noted that, although it uses key phenomenological terms , this method is not phenomenological but rather grounded in a humanistic therapeutic perspective [ 50 ]. Moreover, hermeneutic approaches assume that human beings are always already engaged in interpretative meaning-making activities. They do not seek to capture the patients’ lived experience, but only the meaning they give to it. These aspects do not appear appropriate for application in medical research. In line with Thorne [ 21 ], we consider that the interpretative underpinning in qualitative medical research must be more pragmatic and focus on eliciting concrete proposals for improving treatment. A descriptive approach, that is, “develop [ing] a textural description, what the participants experienced, and a structural description, how they experienced it in terms of conditions, situations or context” [ 51 ] appeared to us more appropriate to integrate into EBM and PRO. However, the descriptive phenomenological approaches [ 14 , 40 ] are mainly methods for analyzing qualitative data (i.e., interview transcripts) and not global research methods (methods structuring a systematic research process from A to Z). In particular, while they underline the need to collect data of first-person accounts of types of experience, they do not provide detailed instructions for the data collection process or study design. Furthermore, descriptive approaches consider access to the lived experience as the goal of the approach without any other more practical and concrete objectives or perspectives. As mentioned above, we consider that within qualitative medical research, lived experience should be considered a means rather than an end. All stages of IPSE are informed by a phenomenological descriptive approach, not only the analytical procedure, as each stage contributes in its own way to capture and describe the lived experience of the participants. At the same time, the objectives of IPSE differ from those of other phenomenological approaches used in qualitative health research: it seeks to improve the quality of care, by producing concrete measures (about treatment and care pathways) and to propose new avenues of research.

The two cornerstones of IPSE

The choice of the name IPSE (Inductive Process to Analyze the Structure of lived Experience) underlines the method’s two cornerstones: the inductive process and the analysis of the structure of lived experience.

IPSE relies on an inductive process: the procedure is exploratory, and no research hypotheses are formulated before starting; rather, they emerge from the material, through methods designed to penetrate as far as possible into the participants’ lived experience. Because the data are collected and analyzed simultaneously, the analysis can affect the collection of the data, directly from the material, that is, the narrative of the participants’ lived experience [ 31 ]. The most exemplary inductive approach in qualitative research is Grounded Theory [ 12 ], in which the researchers must suspend their relations with previous theories and limit their review of the literature, so that they can be fully attentive to the unexpected and the novel and can allow local theories to be emerge directly by the context and the material [ 52 ]. The IPSE inductive approach does not, however, imply disregarding either practical or theoretical medical knowledge when formulating research questions and objectives. The starting point of an IPSE study is always an unanswered question about the experience of individuals involved in medical care, unanswered questions by experienced physicians specializing in the topic. These specialized physicians are part of the research group and contribute to all the stages, including the definition of the areas to be explore in the data collection procedure. However, in line with the grounded theory approach [ 12 ], the physicians are not to share their knowledge with the qualitative researchers conducting interviews and analyzing data.

A qualitative researcher is his or her own instrument [ 53 ] and his or her preexisting knowledge and preconceptions (i.e. assumptions, values, interests, theories, beliefs, emotions, etc.) influence how data are collected, explored, analyzed, interpreted, and presented [ 54 ]. Usually, researchers using a qualitative phenomenological approach claim they perform époché, that is, that they “bracket” or set aside their preconceived knowledge and preconceptions of the phenomenon being researched [ 54 ]. Phenomenological philosophers, however, argue that this husserlian term has been misused and misinterpreted by qualitative researchers [ 55 ]. Using terms such as époché and reduction would, we think, confuse physicians and impede the accessibility of the IPSE method to physicians. We consider instead, along with other researchers such as Moustakas [ 16 ], that what matters is not to bracket the preconceptions but to identify and acknowledge, and make them explicit, through the act and work of reflexivity [ 56 ], which we will describe fully later. Only in this way can researchers avoid blind spots and cognitive biases, that is, the systematic errors in thinking that occur when people are processing and interpreting information-, especially confirmation bias, selection bias and the curse of knowledge [ 57 , 58 ] that can hinder both access to the participants’ experiential knowledge and the discovery of new useful knowledge.

The analysis of a structure of lived experience is the main goal of our method. The descriptive phase of the analysis is inspired by Colaizzi’s method [ 40 ], but our approach is systematic and the structure of the experience is not an end but a means, since it is translated into concrete proposals for improvement in the health care pathway, for treatment, and for clinical research.

The ISPE method has five stages that structure the entire research process (Fig. 1 ).

IPSE, a new method for qualitative research applied to clinical medical research, in 5 stages

Stage 1: setting up a research group

The research group always includes two physicians specializing in the topic, generally three researchers with expertise in qualitative methods, and, when possible one or two patients who experience the phenomenon under study.

In total an IPSE research group ideally contains five to seven members. This number is necessary to ensure that the study is rigorous and trustworthy.

The two physicians specializing in the topic are necessary because they both perform the systematic review (stage 2) and ground all the research process into practical and theoretical medical knowledge without impeding the inductive process.

The three qualitative researchers collect the data (stage 4) and analyze it (stage 5, descriptive individual phase). We consider that three are necessary to avoid confining the data collected and analyzed in the sole perspective of one researcher, or confronting only two opposing points of view.

As for the two patients: In both participatory [ 59 ] and heuristic approaches [ 16 ], participants are not viewed as study subjects but as co-researchers who are an integral part of the research process. IPSE strongly supports a more participatory approach in which service users should be directly involved in the qualitative medical research process [ 60 ], but with a different innovative strategy — to integrate directly, when possible and appropriate, into the research group one or two patients who have experienced the phenomenon or had the disease under study. This strategy follows the same principles as those underlying the use of peer-support worker in psychiatric departments to allow a more person-centered and recovery-focused approach [ 4 ]. Participating patients requires a short training on qualitative research in general and the IPSE approach in particular, which we provide in 3 days before the research starts. Integrating patients within the research group is not mandatory as it can sometimes be quite difficult to find such patients willing to be trained and participate. However, the research group must meet at least twice with “subjects of the experience” that is, patients other than the participants, in the same situation (via patient associations, for example) (i) at the very beginning of the research to develop a research question that really matters for the patients; and (ii) at the end to obtain feedback and validation of the results from the patients themselves.

This group oversees the entire research project, making all decisions collegially. We aim for heterogeneity in the group’s members, in terms of culture, knowledge, sex, age, occupation, and background. This diversity helps enrich the research at every stage, so that the results are more robust and relevant and not limited to a single perspective.

Stage 2: ensuring the originality of the study

We follow the common principles of good practice in research, one of which is that a study must always begin by examining the existing qualitative and quantitative literature on the subject. Inductive approaches generally assume that to prevent interference by existing data, researchers beginning a qualitative study must not review the literature. On the other hand, there is little reason to replicate a qualitative study, since the importance of this type of research is measured by the novelty of the information it provides. It is thus important to avoid reinventing the wheel with each study, which would result in literature overloaded by similar but different or differently labeled concepts — what Morse describes as “theoretical congestion” [ 20 ]. Moreover, it is as important to ground the research in a rationale informed by medical literature, for example, by specifying or redefining the study objectives, as it is to remain attentive to the unexpected and novel [ 52 ] to produce original findings. This epistemological issue is known as Meno’s paradox , enunciated by Socrates in Plato’s Meno: “ We cannot look either for what we know, nor for what we do not know; what we know because, as we know it, we do not need to look for it, what we do not know because we do not even know what to look for [ 61 ].”

To resolve this conundrum, we have developed an original group procedure: the two physicians who are experts in the topic conduct a systematic review of the qualitative and quantitative literature to confirm the study’s relevance and originality. To remain inductive and open to novelty, as mentioned above, the other group members have access to this review only after the data analysis has been completed. The tragedy of modern knowledge is, as Morin stated, that “the exponential increase in knowledge and references … stands in the way of reflecting on knowledge” [ 62 ]. It is therefore important that physicians share the minimum of necessary knowledge to inform the study without impeding it by the curse of knowledge [ 57 ].

Stage 3: recruitment and sampling, aiming for exemplarity

After defining the research question, the group selects the study site or sites best able to optimize the feasibility of recruitment, depending on the study topic. It also defines the inclusion and exclusion criteria. In our method, sampling aims to attain exemplarity, that is, to select participants who, according to the research group (especially the physicians and the patients), have experienced quintessential, typical, or archetypal examples of the situation being studied. It thus uses purposive sampling, that is, selects the subjects likely to provide the most information about the phenomenon studied [ 63 ]. Unlike other recruitment strategies in qualitative research (i.e., homogeneous or convenience sampling), we are looking for a variety of exemplary situations by including participants who might enrich and add something new to what was previously found. The patients included might thus differ by sex, age, social and family status, degree of involvement, disease history, comorbidities, duration of treatment, and outcomes. This enables a broader understanding of the phenomenon under study. Because the analysis takes place simultaneously with the data collection, the latter continues for as long as the analysis of the material continues to provide new information useful for exploring the topic. Sample size in qualitative research is not defined in advance. It is determined by data saturation, usually defined as when the analysis of new material no longer yields new findings [ 64 ]. Saturation is, as Morse stated, “the key to excellent qualitative work” [ 65 ]. It is indeed an essential criterion of validity in qualitative research, especially for qualitative studies intended to lead to PRO development [ 66 ], as it ensures in-depth study of the phenomenon and suggests that further interviews are unlikely to produce new findings. This point has been heavily criticized, however, for it appears impossible to affirm saturation with certainty; that is, even if data saturation is a helpful idea for qualitative researchers, there are no pragmatic and consensual guidelines for determining when the point of data saturation has been reached [ 67 ].

For this reason, in line with grounded theory approaches, we prefer the concept of “theoretical sufficiency” [ 68 ]: data collection and analysis are complete when the researchers consider that the axes of experience obtained provide a sufficient explanatory framework for the data collected. Our minimum sample size is always at least 20 subjects, a choice made to optimize the visibility of our work: it enables publication in specialized journals accustomed to the large sizes in quantitative samples and randomized clinical trials, and unfamiliar with qualitative research, where sample size is not a criterion of methodological rigor.

Stage 4: data collection, access to experience

The quality of the data collection determines the quality of the results. The goal is to reach the narrative of the experience [ 69 ]. The tool used to obtain this narrative always depends on the context, in either individual interviews or focus groups. Researchers in charge of data collection procedure should always consider the risk that face-to-face questioning might limit the subjects’ ability to narrate — to talk about — a subject so deeply personal, especially vulnerable persons [ 70 ] and adapt the data collection process to ensure they reach this narrative. Patients can find it difficult, even intrusive, to talk about their lived experience of a disease [ 71 ]. Most of the time, the IPSE data collection procedure relies on visual narrative support for the participants, aimed at enhancing the narrative by reducing inhibitions. This support may be a photograph, or a clinical vignette, or a short video clip directly related to the experience under study. It also facilitates the relationship and communication between the researcher and the subjects [ 70 ].

Photo-elicitation is the visual narrative support method we use most often [ 72 ]. This tool helps participants to think about a picture — ideally one they took themselves or, sometimes chosen with caution by the research group for the purpose of introducing the object of the study without influencing the participants. The positive effects of photo-elicitation on the research process have been widely described in qualitative literature: it improves the quality of the data collected [ 73 ], it promotes active cognitive involvement and better participation in the research [ 74 ] and when the participants take the picture themselves, it empowers them, by putting them in a more active position and thereby giving them the opportunity to influence the research process more strongly [ 75 ].

In interviews, the qualitative researchers systematically start by asking the participants to comment and react to the experience-related visual support. The latter usually begin and spontaneously continue speaking about it and especially their own experience.

The researchers then move on to open-ended questions [ 76 ], structured by the areas to explore, developed in turn from: (i) reading two pilot interviews, which will not form any part of the data analyzed for the study, (ii) the qualitative researchers’ own thoughts, each with different insights according to his or her own explicated preconceptions on the subject, and (iii) the knowledge and representations of the physicians experts in the topic. The group collectively chooses the areas, but these may be modified throughout the research process by each interview conducted. The interviewers use an interactive conversational style [ 77 ]. In an IPSE study, participants are considered the experts on their own experience. Qualitative researchers must conduct interviews that offer them the opportunity to recount it. In practice, they use prompts based on the “life-world” [ 78 ], a phenomenological concept with five dimensions (i.e., lived body, lived time, lived space, otherness and selfhood) through which the everyday actions and thoughts of the participants can be explored. All interviews are recorded and then transcribed verbatim, including the nonverbal aspects (e.g., pauses, hesitation, and laughs). The data are anonymized. The transcripts obtained are the object of the analysis.

Stage 5: data analysis, from the structure of the experience to its translation into concrete proposals

Our analytic process is rigorous, detailed, systematic, and sharable. It relies on an inductive, phenomenological method and is intended to lead to concrete suggestions for improving aspects of treatment and of the health care pathway. It has two stages: one of independent work by individual researchers, and one of pooling the data collectively, by the group (Fig. 2 ).

Stage 5 of IPSE. From the demonstration of the structure of the experience to its translation into concrete proposals. a. The procedure of each researcher, initially individually, corresponds to the descriptive analysis phase, including: i) listening to and reading the interview, ii) cutting up the text in descriptive units and then regrouping them into categories, This operation is performed for each of the 20 interviews, which are analyzed transversally. b. This structuring phase involves a group procedure (at least 3 researchers) with regular pooling of the data and analysis, during which the theoretical sufficiency is assessed. During this phase, the axes of experience are produced and the group determinates the central axes of experience, which result in the proposal of a structure of the lived experience. Finally the practical phase, which leads from triangulation by the literature to concrete proposals (guidelines, PRO)

Individual procedure - descriptive phase

At least three of the qualitative researchers independently and simultaneously conduct a systematic descriptive analysis aimed at conveying each participant’s experience. This procedure is not original; it has been already proposed in other phenomenological approaches, including IPA [ 15 ] and that Colaizzi’s method [ 40 ]. In fact, our descriptive analytic phase is inspired by Colaizzi’s analytical procedures and leads to the drafting of a structure of the experience, related to what Colaizzi named the “fundamental structure of the phenomenon” [ 79 ].

For each interview, this involves

Listening and reading : we suggest that qualitative researchers analyzing the data listen to the recorded interview twice — once without taking notes, and a second time while taking notes throughout. They can refer to these notes during the analysis and share them (or not) during the group process. Next, they read the interview transcript three times, taking notes at each reading. This process bathes the researchers in each participant’s expressive style and enables an overview of the narrative. These numbers of times to listen to and read the interview are of course suggestions; these remain the decision of each researcher. For instance, some researchers prefer to transcribe their own data and do not need to listen and read as much as a researcher discovering the data for the first time. However, in our experience, for data not transcribed by the researcher, listening twice and reading three times appear to be a perfect compromise to really saturate oneself with the material without wasting too much time.

Exploring the experience word by word : The researchers explore the interview meticulously and cut up the entire text (in units of one or several words) into segments called descriptive units (Table 1 ). These descriptive units are not pre-established and remain as close as possible to the participants’ words.

Regrouping the descriptive units into categories : The units are categorized, that is, they are regrouped according to their proximity of meaning and experience, wherever they may be in the interview. This reorganization reveals the framework of the participants’ experience (Fig. 4 ).

These stages are carried out with the help of “QSR” NVivo12 software to create and assemble the descriptive units and provide graphic support for their reorganization. This descriptive analysis is performed separately for each interview. Progressively, the researchers independently analyze all of the interviews thus far explored, cross-sectionally, by regrouping similar categories and excluding none of them.

Group process-the structuring phase and then the practical phase

During this group process phase, the three researchers who segmented and coded the text now meet and work with the other group members, that is, the physicians experts in the topic, the other qualitative researchers, and the patients, all of whom have familiarized themselves with the data (by listening and reading all the interviews as many times as necessary), without performing the descriptive analysis. The group’s heterogeneity has a heuristic function essential for the construction of the results: the group enables the co-construction by all group members of important points of the experience linking a set of implicit perspectives, made up of each researcher’s culture, theory, knowledge, sex, function, and background. The three researchers meet with the rest of the group after the analysis of five interviews, then 10, then 15, then 20, etc. … to share the categories that have been uncovered and assess their theoretical sufficiency. In practice, for organizational reasons mostly, group meetings can occur after the analysis of more or less than five interviews; however, we recommend this rhythm of meetings because of our experience: we found that sharing the content of the descriptive analysis of more than five interviews can result in a superficial sharing that impairs the quality and originality of the results, while more frequent meeting appeared to be time-consuming without providing richer data analysis.

The structuring phase

In practice, during these two-hour meetings, the group must:

Regroup the categories into axes of experience: The reorganization of the categories must uncover the framework of the participants’ experience, which we call its axes. These axes must be constructed such that each can be linked to its subjacent categories. Naming the axes must make it easy to read the results and highlight the original and relevant points. In practice, the names, the number, and the content of the axes may well change several times before their structure is finalized (Fig. 3 ).

Determine the structure of lived experience characterized by the central axes : this is an action that is delicate, iterative. This phase involves an important dimension of choice. Exhaustive results, unranked, may dilute the original points and the new information, thus impeding any translation of the results into direct implications. The final structure of lived experience does not reflect the many intermediate stages required to reach it, stages during which some axes of experience will be regrouped and some even abandoned. It is very important during this phase that the physicians who analyzed the literature consider and discuss the originality and relevance of each axis, or on the contrary, its previous mentions or triviality according to the literature.

Intermediate stages of the structuring phase (from axes of experience to the structure of lived experience). The objective of the structuring phase is to produce a proposed structure of the lived experience. The three researchers meet with the rest of the research group. This collective group procedure can be defined as a co-construction by the researchers of important points of the experience. a. It involves sharing all the categories and constructing the organization of the axes of experience obtained during the descriptive phase, sometimes changing the name of the axes, sometimes changing categories from one axis of experience to the other. b. This is an intermediate stage of organizing or naming the axes. The structuring phase is a repeated act with an important dimension of choice. Some axes of experience will not discarded to determine the central axes of experience and terminate by c., the proposed structure of the lived experience

Regrouping of codes into categories with NVivo 12

At the end of these two stages, the group, all together, writes up a proposed structure of the experience within the context in which it was explored, composed of its central axes of experience; this will be the study’s results section.

Practical phase

The objective of this phase is the signature of the IPSE method, concordant with Thorne’s interpretive description [ 21 ]: the translation of the findings into proposals about the health care pathway, its clinical implications, and the perspectives for further research. Accordingly, the results will propose, for example, supports for interviews or practical recommendations that physicians can use directly with these patients.

A process of triangulation with the data in the literature completes the analytic process. This is not a process original to IPSE, of course, but rather a good practice that should be followed in all qualitative health research [ 20 , 22 ]. The physicians experts in the topic and responsible for the literature review now share with the group their in-depth analysis of the literature from several databases (PubMed, PsycINFO, CINALH, and Web-of-Science (SSCI)) to identify the original aspects of the results and their differences and similarities with the literature.

The completed study is then reported in a scientific article that meets the COREQ criteria [ 80 ]. COREQ is a useful checklist of items that should always be included in reports of qualitative research. Although some items are directly related to criteria for analytic rigor, such as reflexivity or triangulation, the COREQ checklist provides an outline for reporting important aspects of qualitative research and not guidelines for performing it.

Rigor and methodological quality of IPSE

We identified and operationalized seven methodological points to ensure the quality and rigor of IPSE studies. Some are already recognized criteria of rigor for qualitative research (triangulation, attention to negative cases, transferability, reflexivity), others are innovative and specific:

Patient involvement and feedback of the “subjects of experience”

We have already mentioned that some patients should be part of the research group, or at least be invited to help develop the research question and to give feedback about the results. For the latter point, many authors, including Colaizzi, recommend that participants validate these results. There are practical difficulties in obtaining feedback from the entire group of participants. Our method offers a methodological innovation by progressively replacing feedback by study participants by presentations of the study and conversations with other subjects of the experience. This action ensures the credibility of the results and guarantees their transferability. The results obtained by the IPSE method have a singular status, as accessible and expected, but also uncovered and surprising. The expected effects are both agreement and surprise, through the uncovering of evidence “hidden” until then. The subject of the experience should be able to say: “ it’s exactly that, but I had never formulated it like that ”.

Triangulation

This concept refers to the use of multiple methods or data sources as a rigorous procedure to ensure a global understanding of the phenomenon under study [ 81 ]. There are four types of triangulation: “method triangulation, investigator triangulation, theory triangulation, and data source triangulation” [ 82 ]. In an IPSE study, at least three researchers are involved with data collection and individual analytical procedures; several data collection techniques can be used in the same study (for instance, individual interview and focus group); and triangulation with the literature is systematically carried out.

Attention to negative cases

Particular attention must be paid to these cases in which new elements can differ radically from the emerging structure of the experience. Most of the time, these negative- sometimes contradictory- cases will be integrated into the results. If a case differs completely from the proposed structure of the experience, we consider that theoretical sufficiency has not been reached and conduct new interviews and analyses.

The question of the choices of the central axes of experience

Our objective is not knowledge for its own sake, but knowledge for improvement in patients’ care and in their lives. The choices, always guided by this objective, are determined by the relevance and not the recurrence of the axes of experience.

Researchers’ subjectivity and reflexivity

The issue of reflexivity must be addressed. It can be defined as the researchers’ reflection of their role in the study and its effects on their findings at every step of the research process [ 56 ]. A recurrent hazard in qualitative research is that the results become the reflection or confirmation of the researcher’s preconceptions and beliefs [ 83 ]. The process of reflexivity enables researchers to avoid the pitfalls of applying their own preconceptions and assumptions to the material. They must take care to clarify their position, as much in their encounter with the material to be analyzed as in the research group meetings. To do this, the researchers involved in the study must answer these two questions regarding the study:

(i) What are my preconceptions and my beliefs about the phenomenon under study and the research question ? To address this question, they must each list all of their preconceptions and beliefs first to themselves and then share them with the group

(ii) What are my expectations regarding this study? The researchers must question — themselves and each other — their personal motives to be a part of the research and what they are expecting to find or to achieve.

This reflexive position is worked on constantly in the group, during open discussions between the researchers. More than in the field notes, it is in the conversations, exchanges, and discussions between the researchers that reflexivity accomplishes its work.

Transferability

Qualitative research studies are performed in specific contexts. What matters for their results however is that they are transposable [ 84 ]; in our IPSE approach, this means that the structure of the experience is transferable, that it resonates with what other patients live beyond the context of the study. The assessment of the transferability of results ultimately lies with readers, who must decide if the setting of the study is sufficiently similar for its results to be transferable to their own context [ 85 ]. We ensure the transferability of the structure of the experience by obtaining feedback from patient associations or other representative groups. Also, as shown by the creation of a PRO tool validated by a quantitative psychometric study (currently being written up) in scleroderma, validation in a large sample of other subjects demonstrates the transferability of our results. A tool developed and structured by our method focusing on the lived experience of patients appears transferable and closer to reality than tools based on the theories and inferences of the professionals who create them [ 86 ].

The language of the analysis

It seems important to specify that our position is to anchor our research work in the participants’ language as well as their words. The research is conducted entirely in French, the language of the participants, and the researchers develop and write the results in this same language. Finally, at the last stage, the article is sent to a bilingual (English-French) professional scientific translator, and the authors and translator consult frequently to ensure that the words and meaning stay as close as possible to those of the participants.

The use of the IPSE approach has provided original findings enabling practical implications, such as (1) development of PROs focusing on areas not yet covered by existing scales, (2) clinical recommendations concerning assessment and treatment, (3) innovative ways to improve communication between patients and doctors, and (4) new insights for medical pedagogy.

PRO development

The lived experience of hand involvement in patients with systemic sclerosis (ssc).

Table 2 presents an exemplary IPSE study exploring hand involvement among patients with SSc. The structure of lived experience described in our results revealed that the distress of patients dealing with functional impairment of their hands is linked especially to the loss of what had been important parts of their lives before the disease (leisure activities and hobbies, work, a musical instrument, a family activity). In other words, the intensity of the functional impact was related to “what I can no longer do” rather than to “what I cannot do.” The existing scales either focus on the very targeted assessment of individual components of hand involvement in SSc (the Raynaud’s Conditions Score [ 87 ], the Hand Mobility in Scleroderma Scale [ 88 ], and the Delta Finger to Palm [ 89 ]) or are generic functional scales validated for this disease, evaluating the functional impact of this involvement and its daily repercussions, at home, at work, and on QoL (the Cochin Hand Function Scale [ 90 ], the Arthritis Hand Function Test [ 91 ], and some specific items of QoL scales for scleroderma, such as the Scleroderma Health Assessment Questionnaire [ 92 ]). These scales evaluate the ability to perform some actions of daily life, such as cleaning or getting dressed, but do not include this dimension of a function they once had, which had been important, and was now lost. Here, access to the lived experience and its rigorous analysis make it possible to show that it is this loss of function that is painful. Similarly, our results show that patients develop strategies to compensate for this functional involvement, which no longer presents a problem in their daily life, although functional scales continue to detect it as a functional problem.

The question of the visibility of their hand impairment, to themselves and to others, was also crucial in the lived experience of the participants. The esthetic repercussions on QoL in SSc have been already explored by dermatology QoL scales, the Dermatology Life Quality Index questionnaire [ 93 ] or the Satisfaction with Appearance scale (SWAP) [ 94 ]; and the esthetic impact of hand involvement can be assessed by the 6-item Brief SWAP, validated for SSc [ 95 ]. The IPSE approach enabled the emergence of two original results about the visibility of hand involvement: i) the permanent exposure of their disease to the eyes of others — both in social interactions and in more personal relationships — underlines its effect on relationships; ii) it serves as a permanent reminder of the disease to the patients, inducing constant concerns about their survival, their existence. Beyond the functional impact of hand involvement in SSc and the esthetic repercussions, relational and existential aspects directly associated with patients’ emotional distress also appeared to be an important part of patients’ experience. The different qualitative studies exploring the sources of emotional distress among people living with SSc [ 96 , 97 , 98 , 99 , 100 , 101 , 102 , 103 ] have never explored the lived experience of hand involvement in this disease. These emotional, relational, and existential aspects have never been described specifically for hand involvement in either SSc or other autoimmune diseases affecting the hands, and no scale used to assess hand involvement contains items assessing these aspects.

The IPSE approach has thus made it possible to enrich the data available on the lived experience of SSc patients with hand involvement. The current scales, obtained from questionnaires constructed without exposure to patients’ lived experience, inform clinicians especially about the functional dimension of their patients’ disease but do not allow them to provide comprehensive management for these patients that covers what matters from the patients’ perspective. It is especially important to take their perspective into account in that this is a chronic disease that cannot be cured and has no specific treatment. Our results thus allowed us to construct an appropriate, relevant –and missing- PRO tool, the HAnDE scale, intended to be a useful tool enabling detection of the different dimensions of hand involvement in SSc: functional (and loss of function), emotional, relational, existential, and esthetic. Based on our results and using the vocabulary of the patients we interviewed, we generated 18 items associated with their lived experience. A final version of 16 items was subsequently obtained during a validation study with 105 patients that showed the relevance of the scale for assessing the global experience of hand involvement in patients with SSc. This new PRO scale will be considered as an outcome measure in future trials. This illustrates the direct integration of IPSE studies in EBM.

PRO development in the field of child and adolescent psychiatry

Pediatric PRO assessment is a very recent field of research, and empirical evidence about quantitative instruments within this age-specific population is still scarce [ 104 ]. We are currently constructing two adolescent psychiatry PRO scales based on the results of two qualitative studies: (i) one about the treatment of adolescents with anxiety-based school refusal [ 105 ], and (ii) another assessing the therapeutic alliance in the treatment of adolescents with anorexia nervosa [ 106 ].

This qualitative study, exploring how 20 adolescents with anxiety-based school refusal and 21 of their parents experienced psychiatric treatment, revealed some divergences between the two groups on their perception of efficacy and enabled us to construct a relevant PRO for both adolescents and their parents. This tool integrates original aspects found in our study: assessment of both external ( return to school ) and internal ( self-transformation ) goals of care, the duration of care (an effective treatment as rapidly as possible vs. the need for a treatment period sufficiently long to allow adolescents to change and develop) and unexpected care-linked relationships.

This study explored the experience of therapeutic alliance among 15 adolescents with anorexia nervosa (AN), 18 or their parents and their 8 psychiatrists. Crossing these three perspectives makes it possible to identify aspects that are missing in scales currently used to measure therapeutic alliance in the treatment of AN in adolescents, such as the AWAI or the HAQ-CP [ 107 , 108 ]: parents’ negative representations of “psychiatry” focusing on somatic aspects of treatment and the omnipresence of the issue of relationships. Items on relationship in the scales currently used concern only the relationship with care providers and focus on its perceived quality. In our results, relationships are involved in all three components of the definition of therapeutic alliance: the quality of the association, the objective of treatment, and the means to achieve this objective. Similarly, the current scales do not mention the role of the adolescent–parent relationship, which appeared to play a key role in the construction of the therapeutic alliance in our results. We are therefore developing a PRO scale on this topic that includes specific items: (1) the quality of the relationship with staff as a means of getting better, (2) the impact on the alliance of parental involvement in treatment, (3) the impact of treatment on the parents’ point of view about the adolescent and the relationship between adolescents and their parents, and finally (4) agreement about the objectives for improving family relationships generally and adolescent–parent relationships in particular.

Clinical recommendations

Clinical recommendations drawn from the results of IPSE studies are intended directly for the physicians themselves.

Assessment and diagnosis

Clinical implications from IPSE studies can be innovative concrete guidelines, supported by the structure of lived experience of patients and other stakeholders, to improve the quality of the clinical assessment and of the diagnosis process.

For instance, based on the results of the study of hand involvement in SSc, using the same rationale presented above, we provided clinicians with clinical implications regarding the assessment of hand involvement among patients with SSc: (i) clinicians must assess this involvement globally and not by segmenting the evaluation with several scales that target especially functional involvement; (ii) They should routinely evaluate hand functions that patients used in ways important to them and have now lost and the impact of the visibility of the disease due to this hand involvement, and (iii) should also explore the esthetic, emotional, relational, and existential issues that result.

In another study, we explored the experience of the diagnostic pathway among 20 patients with acromegaly, a rare disease with a substantial diagnostic delay. Our results revealed the direct associations between diagnostic delay and the doctor–patient encounter [ 28 ]. The literature has already emphasized the key role of any doctor, regardless of specialty, in identify the signs, symptoms, and comorbidities of acromegaly by becoming involved and seeing the unseen ’ [ 109 ]. To identify the disease as early as possible, however, our results suggest that physicians must allow themselves to question the patient proactively and to consider clinical processes beyond their own specialty, in other words, seeing the unseen is not enough if physicians do not say the unsaid.

Therapeutic implications

The IPSE approach is particularly well suited to exploring complex therapeutic processes and the perceived efficacy of treatment. The approach enables the description of therapeutic levers and efficacy criteria directly relevant to patients and other stakeholders and could contribute to achieving a more person-centered medicine.

Improving patients’ lives

We conducted two studies to explore the lived experience of cancer treatment; one crossed the perspectives of patients ( N = 30), their families ( N = 30), and their oncologist ( N = 10) [ 30 ], while the other one focused on what affects the quality of daily life of patients with cancer ( N = 30) during active treatment [ 110 ]. Our results led to some clinical recommendations to achieve patient-centered cancer treatment, that is, that physicians integrate the dimension of care into the curative treatments performed so that patients to live as well and not simply as long as possible [ 30 ]. To achieve this task, we found an original therapeutic lever that acts like a relational tool for physicians: the support object, defined as an object, a relationship or an activity particularly invested by the patients in their daily lives, which makes them feel good and makes the cancer and its treatment bearable. When patients are able to choose and be involved with a support object, the physician must support them and converse with them on this topic to help them maintain this investment throughout the health care pathway and to establish a trusting relationship and therefore, according to our results, improve their quality of daily life, without using up very much of the physician’s time [ 110 ].

Improving families’ lives

Therapeutic implications drawn from IPSE studies can also concern families and relatives. For example, we conducted a study to explore how 20 older siblings describe and perceive the care received by their brother or sister in child psychiatric centers specialized in the management of children with Autism Spectrum Disorder [ 111 ]. The literature has already recognized the need for both global family-centered treatment approaches [ 112 ] and specific programs intended for the siblings of children with serious diseases [ 113 ] to help them cope with their brother/sister’s condition, but our study revealed that when older siblings play and claim a role of helping and caring for the child with ASD, they benefit from their empowerment and involvement in this treatment, and physicians benefit from their perspective on this treatment.

Recommendations addressing the care pathway

For the study of anxiety-based school refusal mentioned above [ 105 ], we were able to provide recommendations about the outcomes and the duration of care: treatment must last long enough, in a place dedicated to care, to allow adolescents to become involved in their care and to reflect on the personal changes they need, but also to offer them the possibility of multiple human encounters, some of which — expected or unexpected — will turn out to be determinant in their development. Treatment should strive to combine and coordinate two outcomes of equal importance: a rapid return to school for the parents, and a sufficiently long time in care to enable a self-transformation for the adolescents.

Patient-physician communication

Using the structure of lived experience.

First of all, the systematic undervaluation of symptoms by physicians reveals some distortion in physician-patient communication [ 114 , 115 , 116 ]. The integration of patients’ points of view into their management through the intermediary of structures of experience obtained with IPSE would promote this communication. In an ideal context of shared medical decision-making, the involvement of patients in their management requires that they receive complete and appropriate information on which they can base their choices. Complete information requires that they have been heard and that their narrative of their disease has been considered. In our study of hand involvement in SSc, we systematically provided feedback to the clinicians, so that they could apply these new results uncovered by our exploration.

Improving communication, reducing confusion

The IPSE approach, especially when crossing perspectives, can also provide innovative ways to improve communication between patients and doctors.

We conducted a study among 20 patients and 10 physicians aimed at exploring the experience of neuroendocrine tumors (NETs), rare gastrointestinal tumors characterized by their rarity, the difficulty of their diagnosis, their often better prognosis, and their complex and long management [ 29 ]. The primary — and original — result of this study is the important experience of confusion found among patients. We have provided a statement that all physicians can use to support patients diagnosed with NETs to reduce their confusion, especially the semantic confusion as it explicitly uses the term cancer. This communicative tool meets patients’ needs (i.e. silent symptomatology, name, evolution, treatment and monitoring) including the need to improve patient-physician communication. It has been used in specialized medical consultations but also in training sessions of medical trainees in oncology and gastroenterology.

Medical pedagogy

Here again, the structure of experience can always directly serve as training support to provide to medical students with relevant information about how patients experience both their disease and their care. IPSE approach can also reveal specific needs or gaps in the physician’s training and provide new insights.

Revealing training needs

In our study crossing perspectives between patients with cancer, their families, and their oncologists, we found that physicians had difficulties dealing with patients’ negative emotions during consultations and that this could be a barrier to their access to the factors that improve the patients’ capacity to live as well as possible. We suggested that physicians dealing on a regular basis with patients with cancer should receive a specific medical education that directly addresses the issues of coping with, recognizing, eliciting and using patients’ feelings as a therapeutic tool.

New insights for medical pedagogy

In our study regarding acromegaly diagnosis, patients reported having faced deficiencies in the medical world’s awareness of acromegaly. Indeed, acromegaly is a rare disease that doctors see very rarely and are therefore unlikely to think about. Our results led to suggesting the intervention of patient experts [ 2 ] in medical schools, so students can hear about their experience of diagnostic errors that lead to diagnostic delay and about its early and current clinical signs. Future doctors, who have received such training, will be more aware of the need for a high level of suspicion and active questioning to reach a diagnosis and should thus be more likely to think of the signs observed or reported as potential indicators of acromegaly.

All the studies presented here, and their practical implications, focus on the day-to-day clinical practice of physicians: relationships and communication in care, duration of care, therapeutic alliance, care issues, and outcomes. These aspects, related to the patient’s subjectivity and the patient-physician relationship, are very often forgotten or even excluded from medical research [ 20 ]. We consider, along with other scholars in qualitative health research [ 20 , 21 ], that many advances in medicine and patient care are impossible until qualitative methods are fully integrated into the research arsenal. Qualitative research should — but does not yet —have a major role to play in clinical medical research; use of these methods remains a minority, even marginalized, option. Many medical researchers still apply a hierarchy — based on a paradigm confusion — between research methods according to the sole presence of quantitative research criteria, such as sample size, objectivity, and reproducibility; they inaccurately conclude that qualitative research is inferior and reduce it to a secondary role, always conceived of in the context of mixed-method research [ 117 ]. In other words, qualitative medical research is a victim of the burden of proof [ 118 ] and of the tyranny of the average [ 119 ].

For qualitative research to be able to fully contribute to medical research, it requires better recognition and appreciation from the entire medical community. This is what the IPSE approach is trying to achieve by staking out a medical position within a rigorous and systematic qualitative method.

The IPSE approach is to be integrated within EBM through mixed-method study designs resulted from a pragmatic and mutually enriching partnership between qualitative and quantitative methods [120].

Setting up research groups involving both physicians and patients is an innovative and original idea. This multiples the perspectives and enriches the data and results. Moreover, patient involvement helps to direct research towards person-centered medicine and finally, it allows the research process to maintain an inductive approach providing new results while remaining anchored in relevant medical issues.

Almost everyone agrees that it is important to understand what patients and other caregivers are going through. But to what extent? The first objective of an IPSE study should always be to achieve concrete improvements in patients’ lives (or those of other stakeholders) by leading to practical changes such as PRO development and being used to construct health recommendations or policies, while respecting the fundamental principles of qualitative research.

However, the ISPE approach has some pitfalls. First, it is a very demanding and ambitious research method. An IPSE study is as constraining in terms of workload and time as any other clinical medical research. It also requires abandoning the idea that a qualitative research requires fewer human, financial, and technical means. Second, in exploring an experience in depth in an interview, the researcher can expose the subject’s distress, especially when the question concerns the experience of a disease. This is an important ethical point: the researcher must systematically report this distress to the patient’s physician.

IPSE is an innovative method and an important contribution to current methodological developments aimed at improving the quality and rigor of qualitative research in the medical field, for it anchors the research to the lived experience of those involved in medical care (patients, family, professionals) and it proposes concrete suggestions based on the results, including the development of PROs. No structured qualitative methods have previously recommended the direct involvement of patient experience into PRO construction, before assessing psychometrics characteristics of the scale. IPSE is a qualitative method specific for clinical research in medicine, designed to enable the implementation of pragmatic improvements. Our approach, which allocates to the experience of all the stakeholders in medical care its necessary role in the research process, is part of the movement for collaborative person-focused medicine and can be integrated easily in mixed-methods study designs [ 1 ].

Availability of data and materials

The datasets analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Consolidated criteria for reporting qualitative research

Evidence-based medicine;

Hand AutoimmuNe Disease lived Experience

Interpretative phenomenological analysis

Inductive Process to Analyze the Structure of Lived Experience

Patient and public involvement

Patient Reported Outcome

Quality of life

Scleroderma Health Assessment Questionnaire

Systemic sclerosis

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We would like to thank all the patients for their participation in this study.

We also want to thank la Société Française de Dermatologie; and Jo Ann Cahn for the translation in English.

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Sibeoni, J., Verneuil, L., Manolios, E. et al. A specific method for qualitative medical research: the IPSE (Inductive Process to analyze the Structure of lived Experience) approach. BMC Med Res Methodol 20 , 216 (2020). https://doi.org/10.1186/s12874-020-01099-4

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v.8(2); 2019 Apr

How phenomenology can help us learn from the experiences of others

Brian e. neubauer.

1 Department of Medicine, Uniformed Services University, Bethesda, MD USA

2 General Internal Medicine Service, Walter Reed National Military Medical Center, Bethesda, MD USA

Catherine T. Witkop

3 Department of Preventative Medicine and Biostatistics, Uniformed Services Medical Center, Bethesda, MD USA

Lara Varpio

Introduction.

As a research methodology, phenomenology is uniquely positioned to help health professions education (HPE) scholars learn from the experiences of others. Phenomenology is a form of qualitative research that focuses on the study of an individual’s lived experiences within the world. Although it is a powerful approach for inquiry, the nature of this methodology is often intimidating to HPE researchers. This article aims to explain phenomenology by reviewing the key philosophical and methodological differences between two of the major approaches to phenomenology: transcendental and hermeneutic. Understanding the ontological and epistemological assumptions underpinning these approaches is essential for successfully conducting phenomenological research.

This review provides an introduction to phenomenology and demonstrates how it can be applied to HPE research. We illustrate the two main sub-types of phenomenology and detail their ontological, epistemological, and methodological differences.

Conclusions

Phenomenology is a powerful research strategy that is well suited for exploring challenging problems in HPE. By building a better understanding of the nature of phenomenology and working to ensure proper alignment between the specific research question and the researcher’s underlying philosophy, we hope to encourage HPE scholars to consider its utility when addressing their research questions.

A Qualitative Space highlights research approaches that push readers and scholars deeper into qualitative methods and methodologies. Contributors to A Qualitative Space may: advance new ideas about qualitative methodologies, methods, and/or techniques; debate current and historical trends in qualitative research; craft and share nuanced reflections on how data collection methods should be revised or modified; reflect on the epistemological bases of qualitative research; or argue that some qualitative practices should end. Share your thoughts on Twitter using the hashtag: #aqualspace

Human beings, who are almost unique in having the ability to learn from the experience of others, are also remarkable for their apparent disinclination to do so.—Douglas Adams

Despite the fact that humans are one of few animals who can learn from the experiences of others, we are often loath to do so. Perhaps this is because we assume that similar circumstances could never befall us. Perhaps this is because we assume that, if placed in the same situation, we would make wiser decisions. Perhaps it is because we assume the subjective experience of an individual is not as reliably informative as objective data collected from external reality. Regardless of the assumptions grounding this apprehension, it is essential for scholars to learn from the experiences of others. In fact, it is a foundational premise of research. Research involves the detailed study of a subject (i. e., an individual, groups of individuals, societies, or objects) to discover information or to achieve a new understanding of the subject [ 1 ]. Such detailed study often requires understanding the experiences of others so that we can glean new insights about a particular phenomenon. Scholars in health professions education (HPE) are savvy to the need to learn from the experiences of others. To maximize the effectiveness of feedback, of workplace-based learning, of clinical reasoning, or of any other of a myriad of phenomena, HPE researchers need to be able to carefully explore and learn from the experiences of others. What often curtails these efforts is a lack of methodology. In other words: HPE researchers need to know how to learn from the experiences of others.

Phenomenology is a qualitative research approach that is uniquely positioned to support this inquiry. However, as an approach for engaging in HPE research, phenomenology does not have a strong following. It is easy to see why: To truly understand phenomenology requires developing an appreciation for the philosophies that underpin it. Those philosophies theorize the meaning of human experience. In other words, engaging in phenomenological research requires the scholar to become familiar with the philosophical moorings of our interpretations of human experience. This may be a daunting task, but Douglas Adams never said learning from the experiences of others would be easy.

The questions that phenomenology can answer, and the insights this kind of research can provide, are of foundational importance to HPE: What is the experience of shame and the impact of that experience for medical learners [ 2 ]? What does it mean to be an empathetic clinician [ 3 ]? What is the medical learner’s experience of failure on high stakes exams [ 4 ]? How do experienced clinicians learn to communicate their clinical reasoning in professional practice [ 5 ]? Answers to such questions constitute the underpinnings of our field. To answer such questions, we can use phenomenology to learn from the experiences of others.

In this manuscript, we delve into the philosophies and methodologies of two varieties of phenomenology: hermeneutic and transcendental. Our goal is not to simplify the complexities of phenomenology, nor to argue that all HPE researchers should use phenomenology. Instead, we suggest that phenomenology is a valuable approach to research that needs to have a place in HPE’s body of research. We will place these two approaches in the context of their philosophical roots to illustrate the similarities and differences between these ways of engaging in phenomenological research. In so doing, we hope to encourage HPE researchers to thoughtfully engage in phenomenology when their research questions necessitate this research approach.

What is phenomenology?

In simple terms, phenomenology can be defined as an approach to research that seeks to describe the essence of a phenomenon by exploring it from the perspective of those who have experienced it [ 6 ]. The goal of phenomenology is to describe the meaning of this experience—both in terms of what was experienced and how it was experienced [ 6 ]. There are different kinds of phenomenology, each rooted in different ways of conceiving of the what and how of human experience. In other words, each approach of phenomenology is rooted in a different school of philosophy. To choose a phenomenological research methodology requires the scholar to reflect on the philosophy they embrace. Given that there are many different philosophies that a scientist can embrace, it is not surprising that there is broad set of phenomenological traditions that a researcher can draw from. In this manuscript, we highlight the transcendental and the hermeneutic approaches to phenomenology, but a broader phenomenological landscape exists. For instance, the Encyclopedia of Phenomenology, published in 1997, features articles on seven different types of phenomenology [ 7 ]. More contemporary traditions have also been developed that bridge the transcendental/hermeneutic divide. Several of these traditions are detailed in Tab. 1 [ 8 – 10 ].

Description of three contemporary approaches to phenomenology

Phenomenological approach	Description	Key figures
Lifeworld research	A blended approach that explores how daily experiences manifest in the lifeworld of individuals through consideration of selfhood, sociality, embodiment, temporality, and spatiality [ ]	Peter Ashworth, Karin Dahlberg
Post-intentional phenomenology	A blended approach that treats the phenomenon as the unit of analysis but asserts that phenomena are multiple, partial, contextual, and in flux; being simultaneously produced and producing [ ]	Mark Vagle
Interpretive phenomenological analysis (IPA)	A blended approach that aims to provide detailed examination of the lived experience of a phenomenon through participant’s personal experiences and personal perception of objects and events. In contrast to other approaches, in IPA the researcher performs an active role in the interpretive process [ ]	Jonathan Smith

To understand any of these approaches to phenomenology, it is useful to remember that most approaches hold a similar definition of phenomenology’s object of study. Phenomenology is commonly described as the study of phenomena as they manifest in our experience, of the way we perceive and understand phenomena, and of the meaning phenomena have in our subjective experience [ 11 ]. More simply stated, phenomenology is the study of an individual’s lived experience of the world [ 12 ]. By examining an experience as it is subjectively lived, new meanings and appreciations can be developed to inform, or even re-orient, how we understand that experience [ 13 ].

From this shared understanding, we now address how transcendental (descriptive) phenomenology and hermeneutic (interpretive) phenomenology approach this study in different ways. These approaches are summarized in Tab. 2 .

Comparison of transcendental and hermeneutic phenomenology

	Transcendental (descriptive) phenomenology	Hermeneutic (interpretive) phenomenology
Philosophical origins	Husserl	Heidegger Gadamer
Ontological assumptions	Reality is internal to the knower; what appears in their consciousness	Lived experience is an interpretive process situated in an individual’s lifeworld
Epistemological assumptions	Observer must separate him/herself from the world including his/her own physical being to reach the state of the transcendental I; bias-free; understands phenomena by descriptive means	Observer is part of the world and not bias free; understands phenomenon by interpretive means
Researcher role in data collection	Bracket researcher subjectivity during data collection and analysis	Reflects on essential themes of participant experience with the phenomenon while simultaneously reflection on own experience
Researcher role in data analysis/writing	Consider phenomena from different perspectives, identify units of meaning and cluster into themes to form textural description (the what of the phenomenon). Use imaginative variation to create structural (the how) description. Combine these descriptions to form the essence of the phenomenon	Iterative cycles of capturing and writing reflections towards a robust and nuanced analysis; consider how the data (or parts) contributed to evolving understanding of the phenomena (whole)
Methodological texts	Polkinghorne [ ] Moustakas [ ] Giorgi [ ]	Van Manen [ ]
Examples	Takavol [ ]	Bynum [ ]

Transcendental phenomenology

Phenomenology originates in philosophical traditions that evolved over centuries; however, most historians credit Edmund Husserl for defining phenomenology in the early 20th century [ 14 ]. Understanding some of Husserl’s academic history can provide insight into his transcendental approach to phenomenology. Husserl’s initial work focused on mathematics as the object of study [ 15 ], but then moved to examine other phenomena. Husserl’s approach to philosophy sought to equally value both objective and subjective experiences, with his body of work ‘culminating in his interest in “pure phenomenology” or working to find a universal foundation of philosophy and science [ 13 ].’ Husserl rejected positivism’s absolute focus on objective observations of external reality, and instead argued that phenomena as perceived by the individual’s consciousness should be the object of scientific study. Thus, Husserl contended that no assumptions should inform phenomenology’s inquiry; no philosophical or scientific theory, no deductive logic procedures, and no other empirical science or psychological speculations should inform the inquiry. Instead, the focus should be on what is given directly to an individual’s intuition [ 16 ]. As Staiti recently argued, this attitude towards phenomenology is akin to that of ‘a natural scientist who has just discovered a previously unknown dimension of reality [ 17 ].’ This shift in focus requires the researcher to return ‘to the self to discover the nature and meaning of things [ 18 ].’ As Husserl asserted: ‘Ultimately, all genuine and, in particular, all scientific knowledge, rests on inner evidence [ 19 ].’ Inner evidence—that is, what appears in consciousness—is where a phenomenon is to be studied. What this means for Husserl is that subjective and objective knowledge are intimately intertwined. To understand the reality of a phenomenon is to understand the phenomenon as it is lived by a person. This lived experience is, for Husserl, a dimension of being that had yet to be discovered [ 17 ]. For Husserl, phenomenology was rooted in an epistemological attitude; for him, the critical question of a phenomenological investigation was ‘What is it for an individual to know or to be conscious of a phenomenon [ 20 ]?’ In Husserl’s conception of phenomenology, any experienced phenomenon could be the object of study thereby pushing analysis beyond mere sensory perception (i. e. what I see, hear, touch) to experiences of thought, memory, imagination, or emotion [ 21 ].

Husserl contended that a lived experience of a phenomenon had features that were commonly perceived by individuals who had experienced the phenomenon. These commonly perceived features—or universal essences—can be identified to develop a generalizable description. The essences of a phenomenon, according to Husserl, represented the true nature of that phenomenon. The challenge facing the researcher engaging in Husserl’s phenomenology, then, is:

To describe things in themselves, to permit what is before one to enter consciousness and be understood in its meanings and essences in the light of intuition and self-reflection. The process involves a blending of what is really present with what is imagined as present from the vantage point of possible meanings; thus, a unity of the real and the ideal [ 18 ] .

In other words, the challenge is to engage in the study of a person’s lived experience of a phenomenon that highlights the universal essences of that phenomenon [ 22 ]. This requires the researcher to suspend his/her own attitudes, beliefs, and suppositions in order to focus on the participants’ experience of the phenomenon and identify the essences of the phenomenon. One of Husserl’s great contributions to philosophy and science is the method he developed that enables researchers ‘to suspend the natural attitude as well as the naïve understanding of what we call the human mind and to disclose the realm of transcendental subjectivity as a new field of inquiry [ 17 ].’

In Husserl’s’ transcendental phenomenology (also sometimes referred to as the descriptive approach), the researcher’s goal is to achieve transcendental subjectivity —a state wherein ‘the impact of the researcher on the inquiry is constantly assessed and biases and preconceptions neutralized, so that they do not influence the object of study [ 22 ].’ The researcher is to stand apart, and not allow his/her subjectivity to inform the descriptions offered by the participants. This lived dimension of experience is best approached by the researcher who can achieve the state of the transcendental I —a state wherein the objective researcher moves from the participants’ descriptions of facts of the lived experience, to universal essences of the phenomenon at which point consciousness itself could be grasped [ 23 ]. In the state of the transcendental I , the researcher is able to access the participants’ experience of the phenomenon pre-reflectively—that is ‘without resorting to categorization on conceptualization, and quite often includes what is taken for granted or those things that are common sense [ 13 ].’ The transcendental I brings no definitions, expectations, assumption or hypotheses to the study; instead, in this state, the researcher assumes the position of a tabula rasa, a blank slate, that uses participants’ experiences to develop an understanding of the essence of a phenomenon.

This state is achieved via a series of reductions. The first reduction, referred to as the transcendental stage , requires transcendence from the natural attitude of everyday life through epoche , also called the process of bracketing . This is the process through which the researchers set aside—or bracket off as one would in a mathematical equation—previous understandings, past knowledge, and assumptions about the phenomenon of interest. The previous understandings that must be set aside include a wide range of sources including: scientific theories, knowledge, or explanation; truth or falsity of claims made by participants; and personal views and experiences of the researcher [ 24 ]. In the second phase, transcendental-phenomenological reduction , each participant’s experience is considered individually and a complete description of the phenomenon’s meanings and essences is constructed [ 18 ]. Next is reduction via imaginative variation wherein all the participants’ descriptions of conscious experience are distilled to a unified synthesis of essences through the process of free variation [ 25 ]. This process relies on intuition and requires imagining multiple variations of the phenomenon in order to arrive at the essences of the phenomenon [ 25 ]. These essences become the foundation for all knowledge about the phenomenon.

The specific processes followed to realize these reductions vary across researchers engaging in transcendental phenomenology. One commonly used transcendental phenomenological method is that of psychologist Clark Moustakas, and other approaches include the works of: Colaizzi [ 26 ], Giorgi [ 27 ], and Polkinghorne [ 28 ]. Regardless of the approach used, to engage rigorously in transcendental phenomenology, the researcher must be vigilant in his/her bracketing work so that the researcher’s individual subjectivity does not bias data analysis and interpretations. This is the challenge of reaching the state of the transcendental I where the researcher’s own interpretations, perceptions, categories, etc. do not influence the processes of reduction. It is important to note that modern philosophers continue to wrestle with Husserl’s notions of bracketing. If bracketing is successfully achieved, the researcher sets aside the world and the entirety of its content—including the researcher’s physical body [ 17 ]. While dedication to this bracketing is challenging to maintain, Husserl asserts that it is necessary. Suspending reliance on and foundations in physical reality is the only way to abandon our human experiences in such a way as to find the transcendent I. Researchers might borrow [ 29 ] practices from other qualitative research methods to achieve this goal. For instance, a study could be designed to have multiple researchers triangulate [ 30 ] their reductions to confirm appropriate bracketing was maintained. Alternatively, a study could involve validation of data [ 18 ] via member checking [ 31 ] to ensure that the identified essences resonated with the participants’ experiences.

Husserl’s transcendental phenomenology has been employed by HPE researchers. For example, in 2012, Tavakol et al. studied medical students’ understanding of empathy by engaging in transcendental phenomenological research [ 32 ]. The authors note that medial students’ loss of empathy as they transition from pre-clinical to clinical training is well documented in the medical literature [ 33 ], and has been found to negatively impact patients and the quality of healthcare provided [ 34 ]. Tavakol et al. [ 32 ] used a descriptive phenomenological approach (i. e. using the methodology of Colaizzi and Giorgi) to report on the phenomenon of empathy as experienced by medical students during the course of their training. The authors identified two key factors impacting empathic ability: innate capacity for empathy and barriers to displaying empathy [ 32 ].

Hermeneutic phenomenology

Hermeneutic phenomenology, also known as interpretive phenomenology, originates from the work of Martin Heidegger. Heidegger began his career in theology, but then moved into academia as a student of philosophy. While Heidegger’s philosophical inquiry began in alignment with Husserl’s work, he later challenged several key aspects of Husserl’s transcendental phenomenology. A foundational break from his predecessor was the focus of phenomenological inquiry. While Husserl was interested in the nature of knowledge (i. e., an epistemological focus), Heidegger was interested in the nature of being and temporality (i. e., an ontological focus) [ 21 ]. With this focus on human experience and how it is lived, hermeneutic phenomenology moves away from Husserl’s focus on ‘acts of attending, perceiving, recalling and thinking about the world [ 13 ]’ and on human beings as knowers of phenomenon. In contrast, Heidegger is interested in human beings as actors in the world and so focuses on the relationship between an individual and his/her lifeworld. Heidegger’s term lifeworld referred to the idea that ‘individuals’ realities are invariably influenced by the world in which they live [ 22 ].’ Given this orientation, individuals are understood as always already having an understanding of themselves within the world, even if they are not constantly, explicitly and/or consciously aware of that understanding [ 17 ]. For Heidegger, an individual’s conscious experience of a phenomenon is not separate from the world, nor from the individual’s personal history. Consciousness is, instead, a formation of historically lived experiences including a person’s individual history and the culture in which he/she was raised [ 22 ]. An individual cannot step out of his/her lifeworld. Humans cannot experience a phenomenon without referring back to his/her background understandings. Hermeneutic phenomenology, then, seeks ‘to understand the deeper layers of human experience that lay obscured beneath surface awareness and how the individual’s lifeworld, or the world as he or she pre-reflectively experiences it, influences this experience [ 35 ].’ Hermeneutic phenomenology studies individuals’ narratives to understand what those individuals experience in their daily lives, in their lifeworlds.

But the hermeneutic tradition pushes beyond a descriptive understanding. Hermeneutic phenomenology is rooted in interpretation—interpreting experiences and phenomena via the individual’s lifeworld. Here, Heidegger’s background in theology can be seen as influencing his approach to phenomenology. Hermeneutics refers to the interpretation of texts, to theories developed from the need to translate literature from different languages and where access to the original text (e. g., the Bible) was problematic [ 36 ]. If all human experience is informed by the individual’s lifeworld, and if all experiences must be interpreted through that background, hermeneutic phenomenology must go beyond description of the phenomenon, to the interpretation of the phenomenon. The researcher must be aware of the influence of the individual’s background and account for the influences they exert on the individual’s experience of being.

This is not to say that the individual’s subjective experience—which is inextricably linked with social, cultural, and political contexts—is pre-determined. Heidegger argued that individuals have situated freedom. Situated freedom is a concept that asserts that ‘individuals are free to make choices, but their freedom is not absolute; it is circumscribed by the specific conditions of their daily lives [ 22 ].’ Hermeneutic phenomenology studies the meanings of an individual’s being in the world, as their experience is interpreted through his/her lifeworld, and how these meanings and interpretations influence the choices that the individual makes [ 13 ]. This focus requires the hermeneutic phenomenologist to interpret the narratives provided by research participants in relation to their individual contexts in order to illuminate the fundamental structures of participants’ understanding of being and how that shaped the decisions made by the individual [ 37 ].

Another key aspect that distinguishes hermeneutic phenomenology is the role of the researcher in the inquiry. Instead of bracketing off the researcher’s subjective perspective, hermeneutic phenomenology recognizes that the researcher, like the research subject, cannot be rid of his/her lifeworld. Instead, the researcher’s past experiences and knowledge are valuable guides to the inquiry. It is the researcher’s education and knowledge base that lead him/her to consider a phenomenon or experience worthy of investigation. To ask the research to take an unbiased approach to the data is inconsistent with hermeneutic phenomenology’s philosophical roots. Instead, researchers working from this tradition should openly acknowledge their preconceptions, and reflect on how their subjectivity is part of the analysis process [ 16 ].

The interpretive work of hermeneutic phenomenology is not bound to a single set of rule-bound analytical techniques; instead, it is an interpretive process involving the interplay of multiple analysis activities [ 35 ]. In general, this process:

Starts with identifying an interesting phenomenon that directs our attention towards lived experience. Members of the research team then investigate experience as it is lived, rather than as it is conceptualized, and reflect on the essential [phenomenological] themes that characterize the participant’s experience with the phenomenon, simultaneously reflecting on their own experiences. Researchers capture their reflections in writing and then reflect and write again, creating continuous, iterative cycles to develop increasingly robust and nuanced analyses. Throughout the analysis, researchers must maintain a strong orientation to the phenomenon under study (i.   e., avoid distractions) and attend to the interactions between the parts and the whole. This last step, also described as the hermeneutic circle, emphasizes the practice of deliberately considering how the data (the parts) contribute to the evolving understanding of the phenomena (the whole) and how each enhances the meaning of the other [ 35 ] .

In the hermeneutic approach to phenomenology, theories can help to focus inquiry, to make decisions about research participants, and the way research questions can be addressed [ 22 ]. Theories can also be used to help understand the findings of the study. One scholar whose engagement with hermeneutic phenomenology is widely respected is Max van Manen [ 38 ]. Van Manen acknowledges that hermeneutic phenomenology ‘does not let itself be deceptively reduced to a methodical schema or an interpretative set of procedures [ 39 ].’ Instead, this kind of phenomenology requires the researcher to read deeply into the philosophies of this tradition to grasp the project of hermeneutic phenomenological thinking, reading, and writing.

A recent study published by Bynum et al. illustrates how hermeneutic phenomenology may be employed in HPE [ 2 ]. In this paper, Bynum et al. explored the phenomenon of shame as an emotion experienced by medical residents and offer insights into the effects of shame experiences on learners. As a means in scholarly inquiry, this study demonstrates how hermeneutic phenomenology can provide insight into complex phenomena that are inextricably entwined in HPE.

Incorporating phenomenological research methodologies into HPE scholarship creates opportunities to learn from the experiences of others. Phenomenological research can broaden our understanding of the complex phenomena involved in learning, behaviour, and communication that are germane to our field. But success in these efforts is dependent upon both improved awareness of the potential value of these approaches, and enhanced familiarization with the underlying philosophical orientation and methodological approaches of phenomenology. Perhaps most critically, HPE scholars must construct research processes that align with the tenets of the methodology chosen and the philosophical roots that underlie it. This alignment is the cornerstone for establishing research rigour and trustworthiness.

Following a specific checklist of verification activities or mandatory processes cannot buoy the quality and rigour of a particular phenomenological study. Instead, beyond maintaining fidelity between research question, paradigm, and selected methodology, robust phenomenological research involves deep engagement with the data via reading, reflective writing, re-reading and re-writing. In Moustakas’s approach to transcendental phenomenology, the researcher reads the data, reduces the data to meaning units, re-reads those reductions to then engage in thematic clustering, compares the data, writes descriptions, and so on in an ongoing process of continually engaging with the data and writing reflections and summaries until the researcher can describe the essence of the lived experience [ 18 ]. In hermeneutic phenomenology, scholars describe engaging in a hermeneutic circle wherein the researcher reads the data, constructs a vague understanding, engages in reflective writing, then re-engages with the text with revised understandings [ 40 ]. In cycles of reading and writing, of attending to the whole of the text and the parts, the hermeneutic researcher constructs an understanding of the lived experience. In both traditions, deep engagement with the data via reading, writing, re-reading and re-writing is foundational. While this engagement work is not standardized, Polkinghorne suggests that rich descriptions of phenomenological research might be characterized by qualities such as vividness, richness, accuracy, and elegance [ 41 ]. While we question how these qualities might be evaluated in a qualitative study, they confirm that attention to the depth of engagement in reading and writing of the phenomenological data is a necessary condition for rigour.

Phenomenology is a valuable tool and research strategy. For those who are not familiar with its philosophical underpinnings or methodological application, it can seem challenging to apply to HPE scholarship. We hope this manuscript will serve to relieve some of the apprehension in considering the use of phenomenology in future work. We believe that the appropriate application of phenomenology to HPE’s research questions will help us to advance our understanding by learning from the experiences of others.

The views expressed herein are those of the authors and do not necessarily reflect those of the Uniformed Services University of the Health Sciences, the United States Department of Defense or other federal agencies.

Intramural Grant, Uniformed Services University

Biographies

MD, FACP, is a general internist and chief of the general internal medicine service at Walter Reed National Military Medical Center and associate professor of medicine at the Uniformed Services University of the Health Sciences.

MD, MPH, is an obstetrician/gynaecologist, professor of preventive medicine and biostatistics, and program director for the general preventive medicine program at the Uniformed Services University of the Health Sciences.

PhD, is professor of medicine and associate director of research for health professions education programs at the Uniformed Services University of the Health Sciences.

The views expressed are those of the authors and do not necessarily reflect the official policy or position of the US Air Force, Department of Defense, or the US Government.

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How Involving People with Lived Expertise Strengthens Research

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The Value of Lived Expertise in Addressing Global Research Challenges

Researchers are being asked to respond to some of the toughest challenges our world has seen, requiring diverse perspectives to increase transparency, accessibility, and equity and to foster growth and discovery. There is a growing recognition that research is stronger when people who have directly experienced the phenomena being studied are involved—not just as study participants, but as members of the research team. These experts—often referred to as people with lived experience or lived expertise—bring an on-the-ground lens to complex issues that is pivotal when it comes to making research relevant and actionable.

Integrating Lived Expertise into Equity-Centered Research

The equity-centered research framework developed by RTI International’s Transformative Research Unit for Equity (TRUE) explains why people with lived expertise should play a central role in all stages of the research process. Early in an investigation, experts with lived experience can partner with researchers to identify areas of study that are aligned with community interests and needs, while producing findings that can inform policy and practice. In addition, people with lived expertise can make vital contributions in the design of study procedures, including creating survey and interview questions that are clear, respectful, and sensitive to power dynamics and the feelings of stigma or trauma that participating in research can evoke. Furthermore, the input of people who have intimate knowledge of the experience being studied can transform and enliven analytical processes, leading to innovative insights and helping shed light on paradoxical or unexpected findings. When studies reach the dissemination phase, having experts who can situate study results in the context of their (and their communities’) stories is an effective way to share knowledge with audiences outside of academia.

Tapping into lived experience expertise has multiple benefits, but many researchers have not been taught best practices for engaging people with lived expertise, and they struggle with knowing how to meaningfully include them. Below, we highlight several projects in which RTI researchers took concrete steps to substantially involve people with lived expertise in ways that led to mutually fulfilling collaborations and improved research.

How to Build a Research Team with Lived Expertise: The A Crecer Study

A Crecer (“to grow”) is a multiyear, community-based prospective cohort study funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development focused on the health and well-being of adolescents and young adults living in Salinas, California. Principal Investigator Alexandra Minnis prioritized hiring a field research team composed of early career bilingual and bicultural first-generation college students, most of whom come from the Salinas area or from similar agriculture-based communities in central California.

The cultural sensitivity of the field research team—along with their strong commitment to conducting research to inform Latinx adolescent and young adult health—has contributed to the ability to obtain parent permission for minor-age teens to participate in the study and establish rapport with study participants and their guardians. This rapport was essential for meeting enrollment goals, achieving high retention, and facilitating the successful reengagement of participants and their parents after a 3-year pause in funding. In addition, these individuals have offered insights across all phases of the study—from refining the research approach and questionnaires to being instrumental in guiding the analysis of quantitative and qualitative findings. In response to interest from study participants, the field research team established a group of Young Adult Advocate Advisors to aid with study implementation. The group has also brought new perspectives to the interpretation of study results and guided the development of dissemination materials to be shared with community members in ways that will be engaging to young people themselves.

For most of the field research team, A Crecer was their first post-college job and their first job in research. By being encouraged to incorporate their lived expertise in day-to-day study operations and having their expertise recognized and valued by senior researchers, the experience led to new professional development opportunities. One team member recently began a master’s program and gave a class presentation on A Crecer , highlighting her role as a research analyst. She also brought study consent forms as models for a seminar. Although she has started graduate school, she remains in touch with her field research colleagues and has actively shared what she is learning in the program, both to help inform work on the study and to provide insight into the benefits of graduate school.

How to Prioritize Professional Development and Lived Expertise: The GODDESS Study

When designing the Gathering Online for Dialogue and Discussion to Enhance Social Support (GODDESS) study, Principal Investigator Felicia Browne wanted to create an advisory council of young Black women from Durham and Wake counties in North Carolina to play a key role in the project work. Born and raised in Durham County, Dr. Browne had strong insights as to how to reach young women who might be interested in joining the council. By giving presentations at a local historically Black university, attending community events, distributing flyers in local businesses and nonprofits, and engaging existing networks, she and her team recruited members of what would become the Black Advisory Goddesses—or BAG, a name chosen by the BAG members themselves.

Recognizing how valuable input from these experts would be for her research, Dr. Browne invested in making their participation in GODDESS a rewarding experience for them as well. The recruitment materials and interest form explicitly stated that BAG members would have access to networking and other professional development opportunities. When they signed up to participate, the experts were asked questions that helped the research team understand their priorities and needs, including, “What are you most interested in as a member of the GODDESS Young Women Advisory Council?” and “What goals do you have that you would like help achieving as part of this group?” Dr. Browne and her team used their responses to plan activities that helped members meet their goals. Through in-person meetings at RTI to foster connections, direct engagement with the Principal Investigator and study Co-Investigators, planned meetings with other project community boards, and opportunities to “own” aspects of the project as task leads, the project team listened to the requests of the BAG members and aimed to provide an impactful experience for each person involved in the group.

How to Learn from Lived Expertise Advisors: Working with Survivors of Sex Trafficking

In their research focusing on people who have survived sex trafficking, Rebecca Pfeffer and Kelle Barrick are intentional about sharing power with community-based organizations and people with lived expertise. The study design for the Estimating Sex Trafficking in Sacramento County project was co-created with Community Against Sexual Harm , a local survivor-led nonprofit, and the Institute for Social Research at Sacramento State University . The project involved a Survivor Advisory Committee (SAC) that convened regularly and contributed to the design and implementation of the project. The SAC also wrote several “survivor action briefs,” including Survivors of Sex Trafficking, Their Children, and Opportunities for Intervention: Key Findings and Recommendations , Survivor Experiences With Law Enforcement: Key Findings and Recommendations , and Improving Survivors’ Experiences With Services Through Peer Advocacy: Key Findings and Recommendations .

In the Human Trafficking Policy and Research Analyses Project , funded by the Administration for Children and Families (ACF), people with lived expertise co-facilitated listening sessions and workshops. Multiple challenges arose in compensating these experts, some of whom could not receive direct deposits because they did not have bank accounts, were unfamiliar with the processes and tax implications of invoicing as a consultant, or experienced significant distress when notified of a payment delay or error due to histories of economic abuse. In addition to working with RTI’s finance department to create flexible payment options and clear communications for the experts, Dr. Pfeffer and her team submitted a 10-page memo to the ACF Office on Trafficking in Persons documenting the key lessons learned. The memo also contained economic empowerment strategies developed for engaging people with lived expertise of surviving human trafficking as research experts and participants.

Incorporating Lived Expertise in Future Research

As research continues to evolve, opening the door for unique perspective sharing is helpful to strengthen research and address some of our most pressing social issues. Whether exploring an innovative method for addressing HIV locally among young Black women or understanding the scope and nature of sex trafficking in Sacramento County, California , the inclusion of lived expertise in research enhances the quality of the project and maximizes the impact of the results. Hearing from individuals with lived expertise can also shed light on future areas of study, further facilitating the research continuum. By engaging in these critical collaborations and understanding diverse viewpoints and experiences, researchers can make significant progress to improve people’s health, safety, and well-being.

Learn how RTI is advancing equity in research and contributing to better health outcomes for all .

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Researching lived experience in health care: significance for care ethics

Affiliation.

1 Centre of Health Services and Nursing Research, Faculty of Medicine, Catholic University of Leuven, Kapucijnenvoer 35 blok, 3000 Leuven, Belgium. [email protected]
PMID: 21372236
DOI: 10.1177/0969733010389253

The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being approached for organ donation, parents facing the imminent death of their child and patients being treated using stem cell transplantation are used to illustrate how ethical principles are differentiated, modified or contradicted by the narrative context of persons concerned. The integration of empirical data into ethics will help caregivers in their ethical decision making and may enrich care ethics as a narrative and interpretative field.

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Commentary: Care tactics--arguments, absences and assumptions in relational ethics. Paley J. Paley J. Nurs Ethics. 2011 Mar;18(2):243-54; discussion 262-71. doi: 10.1177/0969733010393070. Nurs Ethics. 2011. PMID: 21372237 No abstract available.

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Research article
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Published: 21 September 2020

Lived experience research as a resource for recovery: a mixed methods study

Anne Honey ORCID: orcid.org/0000-0001-5918-0454 1 ,
Katherine M. Boydell 2 ,
Francesca Coniglio 3 ,
Trang Thuy Do 1 ,
Leonie Dunn 4 ,
Katherine Gill 5 ,
Helen Glover 6 ,
Monique Hines 1 ,
Justin Newton Scanlan 1 &
Barbara Tooth 7

BMC Psychiatry volume 20 , Article number: 456 ( 2020 ) Cite this article

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Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants’ experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience research is often difficult to find, access and interpret. We co-produced user-friendly and engaging resources to disseminate findings from six lived experience research studies. This paper seeks to answer the research questions: a) Did exposure to lived experience research increase hopefulness for participants?; and b) How else did interacting with lived experience research resources influence participants’ lives?

Thirty-eight participants were introduced to four resources of their choosing by peer workers over a four-week period. The helpfulness of resources was evaluated using mixed methods, including a quasi-experimental analysis of change in hope, an anonymous survey and in-depth interviews.

Findings indicated that the resources promoted hope, but that increases in hopefulness may not be seen immediately. Other impacts include that the resources: encouraged helpful activities; provided a positive experience; increased valued knowledge; encouraged people to reflect on their journey and think constructively about mental health issues; helped people to feel less alone; and assisted people to explain their situation to others.

Conclusions

The research suggests the potential usefulness of lived experience research resources, presented in user-friendly formats, in the lives of people who experience mental health issues and implies a need to nurture this type of research.

Peer Review reports

Lived experience research in mental health is research that illuminates the perspectives and experiences of people who live with mental health issues and is conducted either by researchers with their own lived experience or in collaborative research teams that include people with lived experience [ 1 , 2 ]. This paper investigates the usefulness of lived experience research in the lives of people living with mental health issues.

The importance of lived experience research in mental health is increasingly recognised and usually conceptualised in terms of three major benefits. First, consumer rights activists, using the slogan of “nothing about us without us” have argued that inclusion in research is a human right and a social justice issue [ 3 ]. Second, it can produce better quality research by enhancing methodological sensitivity, data accuracy, validity of results, and overall relevance to service users e.g., [ 4 , 5 , 6 ]. Third, people with lived experience have reported deriving benefits from doing research such as satisfaction, skill development, empowerment, and hope [ 4 , 6 ]. Lived experience researchers are increasingly adopting leading roles in conceptualising and conducting research in mental health.

Findings from lived experience research have the potential to be helpful to people in their recovery journeys. Numerous studies have reported the benefits of learning from the wisdom, strategies, challenges and successes of others e.g., [ 7 ]. Hope, a critical component of recovery [ 8 ], is also a major benefit of being exposed to the stories and experiences of others in similar situations. A recent study examined the types of experiences that people living with mental health issues described as igniting and maintaining hope [ 9 ]. Two sources of hope were particularly relevant to lived experience research. First, hearing positive stories of others’ experiences was important. As one participant stated: “the consumers’ voice was hope and healing”. Second, hope was promoted by learning gained from others with lived experience, such as “the key tips and strategies that other peers discussed.”

Observing peers who are living well and reading or listening to individual narratives of recovery are important ways in which people learn from each other and derive hope. However, lived experience research has the potential to bring together the stories of a variety of different people to provide a range of ideas and a bigger picture on particular issues, thus contributing to an individual’s store of resources for recovery.

While the researchers were unable to locate research about the direct use of lived experience research by people living with mental health issues, our collective experience has indicated that many who are not themselves involved in user-led or collaborative research, do not even know that it exists, let alone how to access the findings. Little is known, therefore, about how useful people might find lived experience research in their daily lives.

Our research team, consisting of researchers with and without lived experience of mental health issues, set out to address this issue. As research is rarely presented for a lay readership, we developed a range of user-friendly formats to disseminate lived experience research findings to people living with mental health issues.

This paper seeks to answer the following research questions:

a) Did exposure to lived experience research increase hopefulness for participants?

b) How else did interacting with lived experience research resources influence participants’ lives?

Study design

We collaborated with peer workers and final year design students to develop a suite of six lived experience research resources. These were introduced to consumers by peer workers, and the intervention was evaluated using a mixed methods approach. A mixed methods approach enabled the research questions to be addressed from different perspectives, providing a fuller picture than could be gained using a single method [ 10 , 11 ]. A quasi-experimental evaluation of hope sought to provide relatively objective evidence of the impact of the intervention; an anonymous survey provided comparable participant ratings of the intervention’s impact in expected areas; and qualitative interviews enabled inductive identification of experiences of most importance to participants. Ethical approval was obtained from the LHD’s Human Research Ethics Committee. Reporting adheres to guidelines for Good Reporting of A Mixed Methods Study (GRAMMS) in health service research [ 12 , 13 ].

We reviewed the literature to identify lived experience research papers in which the findings were directly relevant to the daily lives of people living with mental health issues. We consulted with peer workers and others with lived experience to identify topics most likely to be of interest to users. Through these processes, we identified six research studies to develop into user-friendly resources. Translating these began with a conference workshop [ 14 ] and a full day design lab focused on design thinking [ 15 ]. These were attended by service users, peer workers, researchers, clinicians and final year design students from the University of Technology Sydney. After the design lab, the ideas and prototypes were taken up by the design students for further development. They designed and produced the resources with regular input on content and format from the research team and peer workers. The resources are summarised in Table 1 . Detailed descriptions and photographs are provided in the supplementary materials.

Change in Herth Hope Index over time: all participants and by group allocation

Intervention

During peer worker training, each of the finalised resources was examined by peer workers and the research team, who together reached consensus on how each resource would be introduced to consumers. This was flexible however, enabling peer workers to adapt their explanations and activities to be most appropriate to the needs of individual participants. The agreed upon protocols were developed into a peer worker manual.

In recognition that different content is relevant to different people, participants were asked to select four of the six resources. Peer workers introduced participants to one resource per week for 4 weeks. For most resources, the peer workers showed each participant the resource, went through some of it in detail, explained how it was designed to be used, then gave it to the participant to keep and use in whatever way they preferred.

Sampling and recruitment

The project was carried out in one Local Health District (LHD) in Sydney, Australia. The LHD employs 18 peer workers over three inpatient and four community sites. The project employed five of these peer workers to recruit and provide the intervention to clients of these services. Contacts between peer workers and participants took place wherever peer workers normally met with their clients, for example on an inpatient unit, at a community mental health service, or in a community venue such as a coffee shop.

Eligible participants were: clients of the LHD; able to speak and read English; and able to provide informed consent. Clients were excluded if they were considered by their peer worker or primary clinician to be unable to fully understand the procedures, risks and benefits of participation due to acute illness. We planned to recruit 30–40 participants as previous research indicated that this sample size was sufficient to show change [ 21 ].

Recruitment

Peer workers explained the study to all eligible clients that they saw in the course of their work. If a client was interested, the peer worker gave them written project materials (flyer, participant information sheet and consent form), offered to read through the forms with them, and answered any questions. Clients were given several days to read and think about the project and were invited to call the Chief Investigator to discuss the project further if they wished. In several days, the peer worker recontacted the client and, if they wished to participate, obtained written informed consent. Peer workers emphasised that the research was voluntary, participants could withdraw at any time, and participation or refusal would have no impact on their other interactions with peer workers or health service. Consent was considered not as a one-off event, but an ongoing negotiation between peer workers and participants [ 22 ], where the primary concern was participants’ well-being. Therefore, at each research-related interaction, peer workers obtained verbal confirmation that the client was happy to continue taking part. Participants were given a $50 gift voucher after study completion to thank them for their time.

Allocation to groups

After providing informed consent, participants were allocated to group A or group B to determine when they would receive the intervention. In most cases this was done using a coin toss, however, the staggered timing of recruitment and other peer worker commitments made it necessary for 13 participants to be allocated based on logistical issues. This also meant that the groups were uneven, with 25 participants allocated to group A and 13 participants allocated to group B.

Data collection

Hopefulness was measured using the Herth Hope Index (HHI). The HHI is a 12-item scale that was developed for clinical populations, takes just a few minutes to do, has good psychometric properties [ 23 ] and has been used with a variety of different clinical groups in at least seven languages e.g., [ 24 ]. It includes three factors of: temporality and future ; positive readiness and expectancy ; and interconnectedness . Participants completed the HHI at three timepoints. Group A received the intervention between T1 and T2; group B received the intervention between T2 and T3.

Participants were asked to complete an anonymous online evaluation survey once only, after they had received their four resources (at T2 for group A and T3 for group B). This consisted of a series of fixed-choice questions about each resource including its impact on various aspects of participants’ lives and their overall experience of the project.

Semi-structured interviews [ 25 ] were conducted after participants had received the resources and completed T2 (group A) or T3 (group B). They were conducted by Author 8, who had not been involved in the intervention. An interview guide was used containing open ended questions. The interview guide was used flexibly, allowing for conversational flow and follow-up questions to gather detail about issues that were of importance to participants [ 25 ]. Participants were asked for feedback on the individual resources and about the impact of the resources on them. Questions included: ‘Do you think you got any benefits out of being a participant in this study?’ ‘Was there anything that you didn’t like about being in the study?’ and ‘Did anything change for you as a result of engaging with the resources?’

Interviews were conducted in person in a private room in the health service or, where the participant preferred, over the phone. Interviews lasted between 7 and 30 min, averaging 17 min. Interviews were audio recorded and transcribed verbatim for detailed analysis. Participants were provided with both a copy of their transcript and a summary of findings and invited to comment, however, no participants provided additional feedback.

Data analysis

Herth hope index.

Total scores were calculated for each factor ( temporality and future ; positive readiness and expectancy ; and interconnectedness ) and the overall total score. To examine change over time, paired t -tests were completed between Time 1 and Time 2; Time 2 and Time 3 and Time 1 and Time 3 for all participants as well as for Group A and Group B participants separately. Statistical analysis was conducted using SPSS.

Anonymous survey

Frequencies were calculated and presented in visual format to understand the range of responses.

Qualitative interviews

Data from participant interviews were analysed using interpretative content analysis (ICA). This hybrid method combines qualitative and quantitative techniques [ 26 , 27 ], enabling inductive identification of themes as well and reporting of the frequency of those themes [ 26 , 28 ].

The first step in ICA is inductive coding. Constant comparative analysis (CCA) was employed, as it is a systematic, rigorous, and well-established coding technique which minimises the risk of omission of data (Charmaz, 2014). Segments of data, such as phrases or sentences were examined and allocated one or more code names to reflect the underlying concepts they represented. Each new segment of data was compared to others to identify underlying similarities. For example, the data segments ‘just because you are unwell at times doesn’t mean staying unwell all the time’ and ‘Hope changed for me, it gave me a different angle of hope’ were found to represent the same concept: gaining hope. New data were also compared to existing codes and either added to these, or new codes were developed. Codes were compared to each other and refined by merging similar codes or grouping codes into higher level categories. NVivo computer software [ 29 ] was used to manage the data. Authors 1 and 4 independently coded the first three interviews, then met to discuss coding decisions and reach consensus. Thereafter, the authors met regularly to discuss and review coding decisions. These discussions were aimed at enhancing interpretive rigour, ensuring participants’ viewpoints were faithfully represented. When all interviews had been coded, and the coding list finalised, the transcripts were re-examined to ensure comprehensive coding [ 26 ]. NVivo was then used to identify the number of participants who discussed each theme.

Integration

When data from each component of the study had been analysed, the findings were compared to each other. Authors responsible for analysing different sections (primarily authors 1, 4 and 9) presented findings to the other authors and, through close discussion, questioning, and returning repeatedly to the data, derived an integrated interpretation of the results.

Participants

Sixty-four people were invited to be part of the study and 43 agreed to participate. Five participants (2 from group A and 3 from group B) withdrew from the study after the first assessment and did not receive any of the resources. No participants withdrew between receiving the first resource and the post intervention assessment. Participants were not required to provide explanation for not participating or withdrawing but reasons mentioned included: “limited time/too busy”; “not interested”; “couldn’t be bothered”; “school commitments”; “mental health is okay”; and “anxious”. Thirty-four completed all three assessments, while four participants completed only the pre and post intervention assessments. Thirty participants completed the anonymous survey and 33 participated in the qualitative interviews. Table 2 presents the characteristics of people who participated in the study ( n = 38).

While our intention was to recruit participants from inpatient and community settings, 36 of the 38 participants were living in the community. This was due to logistical and staff issues rather than potential inpatient participants declining.

The findings are presented below for each of the two research questions. During analysis, the impact of the research context emerged as a factor to be considered in the interpretation of the other findings. Therefore, findings around this issue are also presented.

Does exposure to lived experience research increase hopefulness?

Data about the impact on hopefulness of engaging with the resources comes from all three data sources: the HHI, anonymous survey, and qualitative interviews.

Participant responses to the HHI are summarised in Fig. 1 . There were no significant differences between Time 1 and Time 2 for Group A. However, significant improvements were seen in temporality and future (t = 3.4; p = 0.003), interconnectedness (t = 2.7; p = 0.013) and HHI Total Scores (t = 3.1; p = 0.006) from Time 2 to Time 3 and in temporality and future (t = 2.3; p = 0.030) and HHI total (t = 2.6; p = 0.019) from Time 1 to Time 3. There were no significant differences between time points for Group B. For the combined data set, significant improvements were seen in temporality and future (t = 3.1; p = 0.004), interconnectedness (t = 2.5; p = 0.018) and HHI Total Scores (t = 3.1; p = 0.004) from Time 2 to Time 3 and in temporality and future (t = 2.8; p = 0.008), interconnectedness (t = 2.2; p = 0.035) and HHI total (t = 2.4; p = 0.023) from Time 1 to Time 3 (Fig. 1 ).

In the anonymous survey, between 80 and 91% of participants who chose each resource reported that it had caused some improvement in their beliefs about their future or recovery, indicating an increase in hope. Responses for each resource are shown in Fig. 2 .

Has accessing the resource made a difference in your life in terms of your beliefs about your future or recovery?

In the qualitative interviews, more than half of the participants (17/33) described how interacting with the resources made them feel more hopeful, positive and empowered. For example, P13 stated, regarding the meaningful activities magazine, that “I just had a little bit of a light bulb moment saying, ‘Well, these things help these people feel better and all these ideas’, so it gave me a bit of understanding and hope for my future.” Similarly, P12, commenting generally about the resources, said that “Seeing other people’s experiences, and that’s really helped to know ‘I can do that too’.” It should be noted that participants were not asked about hope specifically; the theme of hope emerged in response to general questions about the impact of the resources.

How else did interacting with lived experience research resources influence participants’ lives?

It can be seen from Fig. 3 that an overwhelming majority of participants in the anonymous survey found each of the resources helpful, with between 46 and 75% of people finding each resource ‘very helpful’ or ‘extremely helpful’. Further, between 85 and 100% of people, depending on the resource, said that they would recommend it to other people.

Participant perceptions of resources

Participants also indicated that they perceived a positive impact of the resources on the specific aspects of their lives that were measured. For each resource, 60 to 80% of participants reported it had made a small improvement or a big improvement in their lives. Results are summarised in Fig. 4 .

Has accessing the resource made a difference in your life in terms of

The in-depth interviews allowed participants to state their perspectives on the impact of the resources that mattered to them. Overall, 30/33 participants stated, when asked specifically, that they had benefited from being part of the study. Of the remaining three, two answers were unclear and one was not sure if they had benefited. This participant, P31, also reported that nothing had changed for them as a result of the study. With the exception of P31, all other participants described some positive impact from interacting with the resources in subsequent discussion.

The positive impacts people described fell into a number of broad categories, described and exemplified in Table 3 . Counts are the total number of people who mentioned experiencing this impact. As noted above, these impacts emerged as responses to open questions, so a participant not mentioning an impact does not guarantee that they did not experience it.

Negative impacts

While most of the impacts participants described were, as seen above, very positive, a few participants reported negative impacts. In the anonymous survey, three people reported that accessing a specific resource had a negative impact in one or two of the specified areas, as seen in Fig. 4 . To contextualise these responses, they were considered alongside each participant’s responses to other questions and are reported in Table 4 .

The qualitative interviews also revealed some negative impacts of the resources and provided more detailed information. Three participants reported experiencing some distress from interacting with the resources. It is not possible to tell whether these are the same participants who reported the negative impacts in the anonymous survey. Two participants, while reporting a positive overall experience with the project, said that they had found the content of specific resources distressing because of their past experiences and life circumstances.

P26: Just some of the recommendations [from the hope box] felt like a stab in the gut. Something that I couldn't do in my own life … the one about spending time with friends because I felt that I'd lost friends during my hospital stay .

P19: Personal medicine was, I didn't want to use at all. I just didn't anticipate it. I just, I actually had an upset because I'm an astrologer. I have my own personal way of looking at life … I don't want to have more psychology stuff .

The third participant described feeling upset from hearing about other people’s experiences but did find them ultimately hopeful.

P13: Some of what the participants were experiencing, I experienced those symptoms and I thought it is upsetting. But with what they've set their hope in things to do, it also made me think, well, then I can still feel hopeful about the future .

Impact of the research context

Participants in the qualitative interviews reported that they enjoyed being part of the research project. Findings from the anonymous survey supported this; in response to the question “Overall, how would you describe your experience of participating in the study?”, 18 participants (60%) reported a very positive experience, 10 (33%) gave a ‘quite positive’ response, and two (7%) were neutral. No participants reported a negative experience.

These positive experiences may not, however, have been about the resources alone. Ten people specifically mentioned that they had found being part of the research process a valuable and affirming experience. They appreciated being asked for their opinions about the resources and valued being able to contribute to a piece of research that they saw as worthwhile. Some reported being pleased to know that people with lived experience were doing research and found this hope inspiring.

P25: I really valued being able to, like, participate and do something worthwhile .

P15: I felt stronger because of it, like there's people that care and people that are making an effort to try and help and improve the lives of others .

P26: I think it's helped a lot with my recovery. Engaging with the materials and trying to make them the best that they can be .

The responses of fourteen additional participants to a question about what had motivated them to be in the study, also suggested positive feelings about the research process. Six of these reported that they had agreed to participate in the project because of a desire to make a positive contribution to their community and to the mental health system, saying things like “I felt that maybe I can make a difference for other people like me” (P28). A further six were attracted to it as a piece of research. P29, for example “was interested in the type of research”, while for P27 it was “because I believe in research”. Two more participants wanted their voice to be heard, saying, for example: “I thought it would be good to sort of have my own opinion put out there” (P20).

Four participants spontaneously expressed the hope that the project would continue into the future.

P14: I just hope something, you guys are able to elaborate on, give more of it, the research, to people. I think it's really good, because it could save someone's life. So, I just think, just keep going with it .

This study is the first to examine the potential impacts of accessing lived experience research for people living with mental health issues. Overall, the findings suggest that lived experience research, presented in accessible formats, can result in positive experiences and outcomes.

Initially, the results obtained from the HHI appeared counter-intuitive. The original hypothesis was that participants would demonstrate improved hope between times 1 and 2, for group A and between times 2 and 3 for group B (i.e., that hope scores would increase immediately after engaging with the resource). This was not the case. Yet results from both the anonymous survey and the qualitative interviews indicated that many participants did find engaging with the resources to be hope inspiring. The significantly increased HHI scores between post-intervention and follow-up for group A could suggest that more time is required before the impact of the resources is seen in relation to hopefulness, possibly to integrate learnings from the resources into everyday life. Perhaps if group B had completed the HHI a month following engaging with the resources (i.e., 1 month after Time 3), then significant changes may have been observed. The idea that changes in hope may not be immediate is supported by findings from a recent systematic review of self-management interventions for people living with severe mental illness [ 30 ]. This review found no significant difference in change in hope scores between treatment and control groups at the end of treatment (2 studies, n = 389, p = 0.07) but a significant difference favouring the intervention group at follow-up (3 studies, n = 967, p = 0.03).

It is also possible that the hope scores for Time 1 were artificially inflated through the process of recruitment and consent relating to the research project. Previous research has found that two experiences that contribute to hope are: feeling respected, listened to and believed; and contributing or helping others [ 9 ]. Our qualitative data suggests that people may have derived hope from finding out about lived experience research and being asked to take part in the research project. People felt that their views and experiences were being valued and could see that by participating in the project they were contributing to something that may help others in the future. It may well be that levels of hope, if measured before the project was explained to participants (a hypothetical possibility only) may have been lower, suggesting that the change between Time 1 and Time 2 that relates to the resources may be underestimated. Given that hope is an overall feeling about life, which is influenced by many factors, the finding that hopefulness increased overall within the short timeframe of our small study suggests a potential benefit of lived experience research that should be further investigated.

While participants’ reports of the impact of the lived experience resources on their lives were very positive, there were a couple of instances where a participant reported a negative impact. This was despite the involvement of peer workers and other people with lived experience in resource development and our efforts to present positive and empowering perspectives. In each case, the negative experience did appear to be within the context of a wider positive experience with the resources. However, given that every individual’s situation and history is unique, it may be impossible to ensure that a resource will never cause distress. Further, short term discomfort may sometimes be ultimately productive. Shifts in perspectives and understandings can often involve tension and conflict as people grapple with new ways of thinking and what these might mean for their previously held stories e.g., [ 31 ]. The findings suggest the importance of involving, in dissemination of such resources, peer workers or others who have a relationship with the person and are experienced in dealing with these kinds of issues, and potential distress. For people who are vulnerable, it may be advisable for peer workers to go through the resource with them, rather than presenting it as a stand-alone resource, while for others it may be advisable to check in with people about their reactions. This issue and the role of peer workers is discussed in detail elsewhere [Authors, in preparation].

When searching for research to use for this study, it was more difficult than anticipated to find appropriate studies. This was for two main reasons. First, there are no standard keywords to identify lived experience research and authors do not always declare their lived experience status. Anecdotal evidence indicates that the latter may be a reflection of stigma and potential discrimination in publishing. Second, we found that only a small minority of lived experience research suggested implications that could be used directly in people’s daily lives. Rather, most was aimed at increasing the understanding or changing the behaviour of health professionals and policy makers [ 32 ]. This type of research is clearly important. However, the current study highlights the potential usefulness of lived experience research focused on facilitating positive knowledge, attitudes and strategies for services users. It suggests the need for funding bodies and publishers to support lived experience research that will produce findings that can be used directly in people’s daily lives. The current study contributes to knowledge translation by highlighting a strategy that addresses the problem of accessing the evidence base and rendering that evidence base user friendly [ 33 ].

This study has several limitations. As with any study relying on volunteers, it is possible that participants were, at the outset, more positively inclined toward lived experience research than those who declined to participate. Peer workers may also have inadvertently differentially approached people they thought would enjoy or benefit from the resources. The sample size was quite small so, for the analysis of change in hope, it is possible that some real differences may not have been identified. A further limitation of the study is that 36 of the 38 participants were living in the community. While peer workers believed that many of the resources would be useful in inpatient settings, logistical and staff issues meant that recruitment was primarily from the community. Future research is needed to confirm the findings of this study with a wider sample, including people in a variety of mental health settings.

It should be acknowledged that this study did not compare resources developed from lived experience research to similar resources developed from other research that was designed to illuminate lived experience perspectives but was not conducted by researchers with their own lived experience. Therefore, while a number of participants expressed positive feelings about the research being done by people with lived experience, it is still unclear to what extent the lived experience authorship was critical to participants’ engagement with the resources.

It is also important to recognise that participants engaged with the resources, not simply as part of their everyday interactions with their peer workers, but in the context of a research project. Participants’ positive experiences with being part of the research project may have affected their overall reactions to the resources. It was impossible to disentangle participants’ experiences of the resources themselves from their experiences of being a participant whose opinions and experiences were being sought for a research study which ultimately aimed to help improve the lives of other people who experience mental health issues. The authors are currently designing a project to investigate the use of the resources in peer workers’ routine practice. By offering resources and training to a large sample of peer workers, then allowing them to use the resources where they feel it is appropriate, we will get a clearer sense of the usefulness of these resources in everyday practice.

Many benefits have been acknowledged in recent years of mental health research being conducted by or in collaborations including researchers with lived experience, for both the researchers and the research itself e.g., [ 1 , 6 ]. The current research indicates that lived experience research, when brought to their attention and presented in user-friendly formats, also has the potential to provide direct benefits to people living with mental health issues. By advocating for lived experience research and sharing the findings in accessible ways, researchers, peer workers and others can support people living with mental health issues to develop new knowledge that they can use for their self-empowerment, recovery and wellbeing.

Availability of data and materials

The dataset for the qualitative interviews analysed during the current study are not publicly available as they consist of audio files and transcripts from in-depth interviews which, even with pseudonyms, might potentially allow individual participants to be identified. Deidentified data from the quantitative analysis are available from the corresponding author on reasonable request.

Abbreviations

Local Health District

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Acknowledgments

We acknowledge the University of Technology Sydney students who provided their design skills for the resource development: Angus Armstrong, Emily Choi, Imogen Karp, Max Mamo, Bailey Tinta and Lilliah Woodham. We are indebted to our amazing research assistants, the peer workers from SESLHD who helped develop the resources and delivered the intervention: Alise Blayney, Nathan Clissold, Candice Fuller, Darren Wagner and Cheryl Wittingslow. Thanks also to the other peer workers and people with lived experience who provided helpful input and feedback about the project and resources as they developed. Finally, we sincerely thank our research participants, who gave up their time to be part of the study and provided us with their insightful feedback.

This research was funded by One Door Mental Health, through their Research Trust Fund. The funder was not involved with study design, data collection, analysis, interpretation, or publication.

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School of Health Sciences, University of Sydney, Sydney, NSW, Australia

Anne Honey, Trang Thuy Do, Monique Hines & Justin Newton Scanlan

Black Dog Institute, Sydney, NSW, Australia

Katherine M. Boydell

Mental Health Drug & Alcohol, Northern Sydney Local Health District, Sydney, NSW, Australia

Francesca Coniglio

St George and Sutherland Mental Health Services, South Eastern Sydney Local Health District, Sydney, NSW, Australia

Leonie Dunn

Consumer-Led Research Network, Sydney, NSW, Australia

Katherine Gill

Enlightened Consultants, Brisbane, Qld, Australia

Helen Glover

Upfront Leadership, Sydney, NSW, Australia

Barbara Tooth

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Contributions

Study conception: AH,KB,KG,HG,BT; Study design: AH,KB,FC,KG,HG,BT,JNS; Site access, ethics and governance management and research assistant support: FC,LD; Research assistant supervision and research management: MH, AH; Data collection: MH + research assistants; Data analysis and interpretation: AH, TD, MH, JNS. Manuscript preparation: AH; critical revision: KB, FC, KG, HG, MH, JNS, BT. All authors read and approved the final manuscript.

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Correspondence to Anne Honey .

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Ethical approval was obtained from the South Eastern Sydney Local Health District Human Research Ethics Committee (Approval #18/144). Participants provided written informed consent to participate.

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Honey, A., Boydell, K.M., Coniglio, F. et al. Lived experience research as a resource for recovery: a mixed methods study. BMC Psychiatry 20 , 456 (2020). https://doi.org/10.1186/s12888-020-02861-0

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Received : 12 May 2020

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Published : 21 September 2020

DOI : https://doi.org/10.1186/s12888-020-02861-0

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Article Contents

Introduction, mapping the scope, summarising the four contributions to social work knowledge, discussion and conclusion, supplementary material, what is the scope and contribution of lived experience in social work a scoping review.

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Cameron Parsell, Ella Kuskoff, Skye Constantine, What is the Scope and Contribution of Lived Experience in Social Work? A Scoping Review, The British Journal of Social Work , 2024;, bcae106, https://doi.org/10.1093/bjsw/bcae106

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Lived experience, or people’s expertise and perspective derived from their involvement with events and interventions, represents an important resource for social work. Despite the appeal, lived experience is an ambiguous concept and the way social work knowledge is informed by lived experience is difficult to grasp. This article reports on a scoping review that maps the social work academic literature to examine how lived experience is used to inform social work. Over a thirty-three year period (between 1990 and 2022), we identified 1,877 studies. Of these, 110 met the inclusion criteria and were analysed for this study. Most studies (52 per cent) were published between 2019 and 2022, and a majority (43 per cent) were published from research conducted in the UK. The studies contribute knowledge to social work practice, education, research, and about the practical management of lived experience. The results show that lived experience contributions benefit both social work and the people contributing. An important implication is the opportunity for social work to lead the changes required to enable lived experience contributions to continuously inform the profession and contribute to social work realising its aspirational version of itself.

The poignant assertion, ‘nothing about us without us,’ represents an impetus for social work to incorporate lived experience into its ethical, intellectual, and practice domains. O’Leary and Tsui (2022 , p. 1075) refer to lived experience as ‘the knowledge we bring because we have firsthand involvement or exposure to particular events, occurrences or conditions that we have tried to make sense and construct meaning of’. This centring of the client’s perspective with the understanding that social workers are not the experts in clients’ lives or experiences, they argue, aligns with social work’s values. Indeed, and as Beresford et al. (2023) note, social work is one of the leading disciplines in the area. In the UK, there is a mandated requirement for ‘the involvement of people with lived experience in its [social work] qualifying education courses’ ( Beresford et al., 2023 , p. 1275).

Engaging lived experience is not merely a requirement imposed upon the profession. Social work scholars assert that ‘service user and carer involvement in social work education is central to the effective development of the future social care workforce’ ( Fox, 2022 , p. 587). Fox goes on to explain how lived experience contributions have been central to the regulation and development of social work education. In Australia, likewise, lived experience is gaining momentum in social work education; learning from lived experience helps social work students honour the experience of mental health clients ( Ridley et al., 2017 ). Videmsek and Fox’s (2018) research from Europe and the UK argued that social work’s professionalism has been challenged and enhanced through a commitment to service users playing active roles in knowledge creation. They argue that social work’s embracement of service user involvement, including co-design, sits within broader changes in Europe from total institutions to care in the community.

In North America, there is no formal requirement for lived experience inclusion in social work training. Nevertheless, the importance of the broader concept of lived experience influences the profession in both the USA and Canada. Anchored to the strengths-based approach, McCormick et al. (2018) drew on the expertise of people with memory loss to produce a patient and family handbook. They argued that the handbook would have the greatest capacity to be of value when it was co-produced by people with lived experience. In study of clinical social work practice, Lee et al. (2019) drew on epistemic injustice to illustrate how social workers can exercise power over clients by denying them the capacity to know themselves. As such, social work clinicians can perpetuate epistemic injustices when they assume the truth by virtue of their professional knowledge and thereby deny clients the status of being trustworthy conveyors of information about themselves. This critique illustrates the importance of integrating lived experience into social work practice frameworks. Here, we can see alignment to the US’ professional training standards. The Council on Social Work Education (2022 , p. 10) states that social workers acknowledge clients ‘as experts of their own lived experiences’.

The global definition of social work does not explicitly refer to lived experience; it states that social work ‘draws on a wide array of scientific theories and research’ ( International Federation of Social Workers, 2014 ). With a nod to lived experience, however, the commitment to science acknowledges that ‘much of social work research and theory is co-constructed with service users in an interactive, dialogic process’ ( International Federation of Social Workers, 2014 ).

Social work scholars advocate for the value of the profession to engage with lived experience, both explicitly and implicitly through cognate concepts, based on several justifications. These include: (i) the firsthand knowledge of policies and practices that clients possess is what Fox (2016) refers to as expertise-by-experience; (ii) lived experience informs social work about how problems are understood and made meaning of in context ( O’Leary and Tsui, 2022 ); (iii) clients experience the most significant impacts when policies and practices are ineffective ( Black et al., 2023 ); (iv) centring lived experience expertise conveys respect and dignity ( Unwin et al., 2018 ); (v) learning about and engaging with lived experience promotes equity ( Kia et al., 2023 ), and (vi) as a critical theory, lived experience can transform knowledge and practice ( Mahboub et al., 2023 ).

The latter radical notion of lived experience as transformative of systems and practice—rather than simply informative— connects lived experiences to analogous concepts such as co-design and co-production ( O’Leary and Tsui, 2022 ; Black et al., 2023 ). The nature of co-design and co-production, by definition, relies upon lived experience contribution and expertise, and can be a mechanism to equalise power ( Mahboub et al., 2023 ). Engaging lived experience to inform co-design is about social workers relinquishing power, premised on the recognition that complex problems require multiple stakeholders and perspectives ( Black et al., 2023 ).

There is much intuitively appealing about lived experience. The appeal, furthermore, resonates with the values of social work, particularly strengths-based approaches and recognising people as experts of their own lives. Yet the ideal of lived experience may be in tension with social work’s professionalism and commitment to evidence-based practice. Drisko (2017) illustrates the role of active collaboration with the client in evidence-based social work practice; this collaboration, however, still positions social workers as experts. Even though active collaboration assumes that ‘client choice has priority over research findings’ ( Drisko, 2017 , p. 116), the social worker is the expert in distilling information and presenting that information to the client so that they can choose from what the social worker has on offer. Active collaboration in evidence-based practice gives priority to the clinical expertise of the practitioner. This expertise is used to inform the client, to point out the limitations and possibilities of treatments and to highlight challenges the client might face ( Drisko, 2017 , p. 116).

Although we cannot conclude that the Code of Ethics of the National Association of Social Workers (2021) contrasts with lived experience, we cannot conclude that it offers strong support to progress it either. Premised on the recognition that the social worker holds the knowledge, the Code of Ethics states that ‘social workers should provide clients with an opportunity to ask questions’. An ethical requirement for social workers to ensure clients ask questions is well short of a requirement to enable lived experience to shape the profession.

To advance knowledge about the role and value of lived experience for social work beyond the intuitive appeal and in light of the way that the ideal can sit uncomfortably with some elements of social work, we need to systematically analyse how this concept is used and how it contributes to knowledge. This is a difficult area to systematically review, as there is no single and universally agreed definition of lived experience ( Hawke et al., 2022 ). Throughout the literature the concept of lived experience is, as McIntosh and Wright (2019 , p. 450) observe, frequently ‘used with little or no clarification about what it might mean or imply’. After all, they point out, ‘what is any experience if not lived?’ In the absence of a systematic analysis of social work’s treatment of lived experience, it is not possible to determine how the profession can engage with lived experience, and how it contrasts or is consistent with other areas of importance, such as active collaboration and self-determination ( Drisko, 2017 ).

This article presents a scoping review of social work literature that engages lived experience. The study aims to map the social work academic literature to examine how lived experience is used, including whose lived experience informs social work. It further aims to identify where and when lived experience contributes to social work knowledge. Finally, given that the arguments canvassed above about the need for lived experience—redistributing power, therapeutic benefits, showing respect, enabling dignity, improving practice through expertise—are unambiguously compelling, we scrutinise whether the social work literature presents research to demonstrate that these, or other, benefits are achieved. The study addresses three research questions:

What is the scope of the lived experience scholarship in social work?

How is lived experience examined, and whose lived experience contributes to social work knowledge?

How does the lived experience research contribute to social work knowledge?

A scoping review methodology was adopted to map lived experience in the social work literature. A scoping review is a systematic method that is suited to examining areas that are under-researched. Differing from systematic reviews that weigh evidence among topics that have a significant body of research, scoping reviews are appropriate to use on broad subject areas, particularly those informed by both qualitative and quantitative studies ( Arksey and O’Malley, 2005 ). The mapping of research in a field means that scoping reviews are well placed to inform social work policy and practice ( Lee et al., 2022 ). We adopted the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, extension for Scoping Reviews (PRISMA-ScR) guidelines. The PRISMA-ScR is a four-step process that includes (i) inclusion and exclusion criteria; (ii) search protocol; (iii) study selection process; (iv) and analysis. We present how these were employed in turn.

Inclusion and exclusion criteria

Studies were included in the scoping review if they reported on how lived experience informed social work. To ensure we captured lived experience, we also included synonyms or related concepts, such as consumer participation, co-design, co-production, and user-led. We included studies that examined lived experience in any part of social work, including education, research, policy, practice, or advocacy. Given social work’s diversity, including the diverse ways it can be described, we included social care, social services, and human services. We excluded studies if social work or synonyms were not mentioned (i.e. not relevant). In many cases, it was difficult to clearly decouple social work from health. Many health interventions have social work dimensions or deal with issues salient to social work. We took a broad definition of social work’s remit as an inclusion criterion. We included studies even if social work, social care, or welfare were only briefly mentioned as influenced by lived experience.

We included empirical studies that were qualitative, quantitative, or mixed method; we excluded studies that discussed lived experience in social work as an idea or ideal but did not engage empirical research that demonstrated how lived experience actually influenced social work. To be included, studies needed to be published between 1 January 1990 and 31 December 2022. We excluded studies if they were methodological, protocols, commentaries, editorials, or reviews. On the latter point, however, we included two review studies as they had lived experience panels that contributed to the design and analysis. To ensure rigour, we also excluded publications that were not peer-reviewed journal articles (e.g. chapters, reports, theses). We only included studies if they were published in English.

After a pilot search, we identified that many of the studies included in our search terms were studies that sought to identify the lived experiences of a population group. The identification of lived experience in social work as a broad area of study enabled us to clarify our inclusion and exclusion criteria. This scoping review is focused on (i) the lived experiences of social work clients or sections of the population that social work is directed towards (people experiencing injustices, exclusion, etc) and (ii), rather than general lived experiences of a population, the scoping review is focused on lived experiences of people who in some way informed any aspect of social work. We excluded studies if they (i) only considered lived experience among a population or (ii) drew on research about people’s general lived experiences and then considered the implications to social work. Lived experience was thus included if it did influence social work, rather than simply aimed to influence social work.

Search protocol

Guided by the inclusion and exclusion criteria, we searched title, keyword, and abstract using Boolean search phrase: (“lived experience” OR “consumer participation” OR “co-design” OR “co-production” OR “user-led”) AND (“social work” OR “social care” OR “social services” OR “human services”). The search phrase was developed to capture the diverse ways that lived experience and social work are described across the international literature.

The first author conducted the search in November 2023 across the following five databases: ProQuest (including Social Science Database, Sociological Abstracts, and Research Library); EBSCOhost (including APA Psycinfo, APA PsycArticles, and CINAHL); PubMed; Scopus; and Web of Science. From the search, 2,395 studies were identified. We removed 518 duplicate publications, which left a sample of 1,877 studies for the first round.

Study selection

With the use of Covidence software, we screened the 1,877 studies according to the inclusion and exclusion criteria. Each abstract was independently assessed for relevance by two of the three authors. In line with Arksey and O’Malley (2005) , we sent for full-text review studies that clearly met the inclusion criteria, as well as studies that neither clearly met nor failed to meet the inclusion criteria. During this process, 1,657 studies were excluded and 220 were included for full-text review.

For the full-text review, two of the three authors independently applied the inclusion and exclusion criteria to the 220 studies. Conflicts were resolved through discussion. This process resulted in a further 110 studies being excluded. These were excluded for: not social work relevant, that is, there was no engagement with or connection to social work ( n = 61), not examining how lived experience did inform social work ( n = 27), wrong population, that is, patients of a medical intervention ( n = 14), published outside 1990–2022 ( n = 4), not empirical ( n = 2), not English ( n = 1) and not peer-reviewed ( n = 1).

A total of 110 studies were included for final analysis. The full references for these 110 social work studies are available in the Supplementary material . The study selection process is illustrated as a PRISMA-ScR flow diagram in Figure 1 .

We developed a strategy for charting the information in the studies. Charting forms the basis for descriptive analysis. For Arksey and O’Malley (2005 , p. 26), charting is an analytical strategy to synthesise and interpret the material in studies ‘according to key issues and themes’. To identify issues and themes, the three authors designed a charting framework. The charting framework consisted of (i) study information (such as year, study location, authors); (ii) whose lived experiences (e.g. young people, service users); (iii) primary domain of social work knowledge contribution (education, research, policy, practice); and (iv) research design.

In the final collating, summarising and reporting stage ( Arksey and O’Malley, 2005 ), we distil the core contributions that lived experience research makes to social work knowledge. In the charting stage, we identify four domains of social work knowledge that lived experiences contributes to: social work practice, social work education, social work research and practical management of lived experience. In our final analytical stage, we dig deeper into the four domains and summarise the contributions the studies offer to social work.

As a scoping review of peer-reviewed literature, neither the journal nor our university requires that the study is subject to ethical review. Ethical considerations were nevertheless important. First, the authors discussed and acknowledge the limitation of not having lived experience representation on the research team. This review is the first study in a broader program of research that seeks to co-produce knowledge about how lived experience can inform practice and policy directeds towards addressing poverty. Second, the inclusion criteria were deliberately designed to encompass the diverse ways in which lived experience informs social work, yet as we explain below, there are limits to who was included.

Figure 2 illustrates the temporal clustering of lived experience social work studies. Of the thirty-three years included in our review (1990–2022), fifty-seven studies—or 52 per cent—were published between 2019 and 2022. Comparatively, during the decade of the 1990s only three studies were published. The data indicate that lived experience is a relatively recent and growing area of social work scholarship.

Articles by year.

We likewise observe clustering in the countries where social work lived experience research was conducted. As Figure 3 shows, forty-seven studies, or 43 per cent, are from the UK. There were twenty-five studies from North America, including sixteen from the USA and nine from Canada. The fifteen studies from Europe were spread across nine countries. Australian studies ( n = 16) dominate the seventeen from Oceania. No studies were identified from low-income countries.

Articles by region.

Given that lived experience is an experiential phenomenon, most studies are qualitative. Figure 4 shows that eighty-nine studies were qualitative, and eleven additional mixed methods studies included qualitative research. Many studies included research designs where lived experience was salient. Almost half of the studies ( n = 51) reported either a participatory overarching research framework or direct service user involvement in the research. This included social work research that was led, designed and conducted by people with lived experience of social work.

Articles by method.

A great diversity of people’s lived experience informed social work. Figure 5 is based on how the studies described the people. We recognise, however, that groupings are not mutually exclusive: service user is a broad term; as noted in many studies, service users can also be people with disabilities, children and young people, and so on. The studies included in the review found that social work is not only engaging the lived experiences of people experiencing injustices and marginalisation, such as those who experience homelessness and poverty, but also involuntary clients, such as children and parents engaged in the statutory child protection system, people in forensic mental health hospitals and people who are incarcerated.

Whose lived experience.

The mapping identified important insights about which domains of social work were contributed to by lived experience. Nearly half of the studies ( n = 51) contributed to social work practice. We conceptualised social work practice broadly to include micro-therapeutic intervention, social work practice in areas such as statutory child protection, as well as social work policy and advocacy in areas such as homelessness, family violence and mental health. Figure 6 demonstrates that many studies, some 28 per cent ( n = 31), sought to contribute to social work education. As noted in the introduction, it is a requirement for lived experience to inform professional social work training in the UK. It is unsurprising therefore that nineteen of the thirty-one studies contributing to social work education were from the UK. The smallest proportion ( n = 12) contributed to knowledge about the practical management of lived experience.

Social work domains.

Drawing on the four key contributions of the studies as depicted in Figure 6 , in this section we analyse and present the key contributions of the studies within each domain. In doing so, we focus on the most prevalent overarching themes. As such, not all studies included in the scoping review are explicitly discussed in the summative analyses.

Social work practice

Engaging lived experience was identified as resulting in better services and outcomes; increased client capacities; the development of empowerment, agency and positive identities; and a sense of having a positive impact on services. Furthermore, professional development training designed and delivered with persons with a lived experience was found to be effective at increasing staff knowledge and empathy, as well as addressing issues of stigma and discomfort. Developing staff knowledge and empathy is important, as the research finds, because strong social worker/client relationships were seen as critical and as the foundation for other outcomes. The importance of peer workers was seen as particularly beneficial for ensuring that services and policy were responsive to service user need.

Lived experience within social work practice was also regularly positioned as important for challenging broader social policy and institutional structures. One study, for example, explored the place of client and service collaborations in larger scale political activism and in ensuring that lived experience priorities are foregrounded. Other studies identified social workers as holding the appropriate authority and value frameworks to collaborate and take actions to challenge discriminatory systems and support people with lived experience to engage in campaigning and community action.

Despite these opportunities, threats to the inclusion of lived experience in social work practice were highlighted. These were oriented around the impacts of limited resources and staff resistance. Indeed, lived experience involvements were often identified as being tokenistic or ad hoc, and therefore demoralising and/or falling short of their potential benefits. The research further identified power imbalances, staff resistance and staff biases as threats to collaborative practices and the adequate representations of lived experience. Other researchers identified the challenges of lived experience in navigating the bureaucratic tensions of the public sector or identified the need for structured supports that enable effective and sustainable lived experience involvements. Notwithstanding these considerations, the studies demonstrate the importance of lived experience involvement in social work practice to be valued and fostered through continuous and meaningful opportunities.

See Supplementary Table A for relevant citations within the Social Work Practice domain.

Social work education

The research consistently identified that the inclusion of lived experience in social work education supported students to develop more nuanced and comprehensive understandings of the realities of life experienced by people who use social work services. Lived experience included exposing students to the viewpoints of people who are disadvantaged and assisting with interpersonal procedural skills, but the research goes much further to illustrate how students understood the experience, nature, and even solutions to disadvantage. For example, students developed a more structural understanding of social problems; were helped to challenge their stigmatised views and develop a sense of empathy; and felt better equipped to participate in the field.

Although less frequently reported than with students, the research detailed benefits to people who contribute their lived experience. One study found that service users and carers benefited from payment for contributing to social work education, but they particularly appreciated mutuality experienced with their peers and the formal recognition of their expertise. Several studies found service users having a boost to their self-esteem and self-worth through teaching social work students. One study observed that the training and opportunities provided to lived experience educators built their capacities in other areas, whilst another found that lived experience mentors appreciated that social workers are ‘everyday people undertaking a hard job’.

The research demonstrates that meaningfully engaging lived experience in social work education requires purposeful practice and deliberate resourcing, particularly resourcing for training and development, including for user-controlled organisations to ensure diverse representation. One study adds to this noting that it will require challenging existing structures within universities so that academics can ‘work with lived experience in broad and value-based ways’. This is critical because, as another study showed, organisational culture and supervisor attitudes are central to students being able to engage with and privilege lived experience.

Alongside the myriad benefits and the strategies for achieving lived experience in social work education, the research identifies important critiques and concerns. One study presents a nuanced account of how peer educators feel about their personal stories, which may be experienced as resistance and personal survival, instead serving the interests of dominant systems. The study critiques how social workers invite and enable service users to contribute their lived experience to social work education; social workers are compelled to teach their students to understand how lived experience in the classroom contributes ‘to wider systemic anti-discrimination social justice work’. The concern that lived experience in social work education can perpetuate unjust systems and stereotypes was explicitly expressed in one study, which warns social work educators that lived experience in teaching can be about highlighting the inspirational speakers, silencing diversity of experiences, and encouraging compliance with systems rather than transformation.

See Supplementary Table B for relevant citations within the Social Work Education domain.

Social work research

The studies illustrate the centrality of ethics in enabling effective and potentially transformative lived experience social work research. Some studies argue that researchers conducting participatory research have a responsibility to sustain ongoing relationships with participants after the research is complete to facilitate their access to resources and benefits, including through disseminating findings and initiating meetings with community and policy stakeholders. Another study likewise identifies the need for reciprocity, whereby lived experience participants derive benefit, as determined by them. A further study proposes that collaborative research ethically co-designed to meet participants’ needs may ‘disrupt oppressive conditions often unintentionally perpetuated within research’.

The studies also identify a range of practical measures that must be addressed if lived experience can meaningfully contribute to research. One study notes the necessity to provide formal research methods training to people with lived experience, training that can be enhanced when facilitators have lived experience. Further, a flexible approach that is responsive to the needs of people with lived experience is required to ensure lived experience collaborators can engage in ways that suit their preferences. Some researchers say that it is the anti-oppressive and participatory approach that enables lived experience to contribute to and benefit from research. One study extends this, arguing that collaborative research can be transformative when it acknowledges the oppressive nature of statutory systems and positions lived experience in policymaking as a matter of human rights and social power.

Others report on the barriers within university and research systems that challenge the capacity of social work to conduct lived experience research. Many social work academics are learning about lived experience research as they practice it. Others raise funding and resourcing as barriers, particularly resourcing to appropriately support participants when the research reawakens past trauma. One study found that for some peer researchers, the precarious nature of their contributions and limited enumeration can exacerbate rather than challenge injustice. Even if sufficient funding is available to appropriately support and renumerate participants, other challenges must be considered. Many social work studies are funded by government; consequently, the research aims and questions are often formulated at the point of contracting, which subverts the capacity of lived experience to shape the research.

The literature provides compelling reasons to overcome the barriers to lived experienced social work research through highlighting the myriad benefits this research represents for the participants themselves. For example, the studies report participants developing research, employment, and advocacy skills through their engagement in the research, with some participants developing political advocacy to change the very systems they were disadvantaged by. The studies also provide insight into the epistemological benefits of lived experience research, foregrounding the value that is found in the unique perspective and insight only lived experience can evoke. The social work studies are significant for recognising the importance of what lived experience knowledge can contribute, on the one hand, and on the other hand, pushing us to consider how knowledge is ordinarily produced and by whom.

See Supplementary Table C for relevant citations within the Social Work Research domain.

Practical management of lived experience

Addressing the gap between the ideal for lived experience to inform policy and program design and the empirical knowledge about the structures required for its systematic delivery, one study found that dedicated resources for community building are the necessary ingredient to both keep lived experience engaged in the long-term and to enable the diverse lived experiences to contribute to cohesive objectives. Effective user participation is not, they observed, a given, but rather takes active practical management. The study found that for lived experience to meaningfully inform policies and programs, an enduring commitment is required, along with ongoing resourcing to ensure the momentum is maintained. This involves ongoing resourcing to support the capacity building of lived experience contributions, and over the course of a project, the contributions that lived experience will make invariably differ and ideally grow.

Another study similarly reports on the wider environment required to enable, or that can constrain, lived experience contribution to social work. Although even low levels of consumer participation in the delivery of services were perceived as beneficial by those contributing, negative staff attitudes directly undermined lived experience contributions. Moreover, staff attitudes that fostered a belief that lived experience contributions were futile to achieving positive change exacerbated the barriers to participation—and subverted feeling that participation is valuable. This resonates with another study’s finding that a community advisory board in a homelessness and housing organisation failed because its proponents did not address the staff’s concerns about what it meant for the organisation and for them. To sustainably integrate lived experience into systems, the user satisfaction must be demonstrated alongside the evidence for the ‘quality and effectiveness of services delivered’.

One study reports on the challenges citizens and service users face in contributing to the renewal of the Finnish welfare state. These challenges are a product of wider market principles shaping social policy that prioritise economic efficiencies. This study did not identify the ideal deliberative democracy shaping the Finnish welfare state, but noted some progress towards this end has been realised. They optimistically conclude, ‘once the citizens and the service users become engaged in co-production alongside the professional producers, there are many possibilities for positive returns’.

Another study found that vulnerable citizens were willing to contribute their lived experience through co-producing an intervention when trust and social capital were high, yet this requires social workers to move beyond knowing about the vulnerabilities of their clients to trusting their knowledge. When trust drives lived experience engagement, people’s sense of self as more than a client of a service is validated.

See Supplementary Table D for relevant citations within the Practical Management of Lived Experience domain.

Social work scholarship’s engagement with lived experience is multifaceted and diverse. Although our review identified only sparse treatment of lived experience in the ten years prior to and following the new millennium, it is not an idea new to social work. Mutual aid in social work’s commitment to sharing power to determine ‘what is, what should be, and how to get there’ is inseparable to lived experience informing social work ( Steinberg, 2010 , p. 59). Writing in 1994, Cohen observed that ‘the notion of consumer participation in agencies serving low-income clientele is hardly new. It does, however, need to be revived and refined’. Cohen’s observations from thirty years ago resonate with this study: lived experience—in the tapestry of ways it can be conceived—represents a set of ethical and intellectual principles that are necessary to propel the profession towards its social justice and inclusionary agenda. We have analysed the contributions to social work knowledge through four domains: social work practice; social work education; social work research; and practical management of lived experience.

Across the four domains, the studies identified in this review position lived experience as a phenomenon so crucial that it is not merely consistent with social work values, but also an embodiment of social work’s commitment to achieve social change, social cohesion, empowerment, and liberation ( International Federation of Social Workers, 2014 ). It is difficult to conclude that these transformations could be achieved in the absence of serious engagement with lived experience. A common theme in the studies is that lived experience is a necessity for the profession to realise its aspirational version of itself. Although this is an important theme, it is critical to emphasise that the research is generated from a small part of the world, mostly the UK, and to a lesser extent North America and Australia. Given the centrality of lived experience to enhancing the discipline’s agenda, we encourage social work scholars to develop this literature with research from across the globe. It is a limitation of our review, however, that we excluded studies not published in English. This means we would have omitted lived experience research published in many parts of the world. Two other limitations are important to highlight.

First, our inclusion criteria that focused on empirical research had the consequence of omitting important social work knowledge. Some social work material on lived experience has been published in commentaries and editorials. Even though authors have used their empirical knowledge to inform these works, they were excluded because they did not meet the criteria of empirical research. Second, the study is limited by excluding grey literature. It is likely that non-academic material online contains knowledge written by people with lived experience. This scoping review is limited by focusing exclusively on peer-reviewed, and empirical, literature.

Social work’s pursuit to achieve transformation through lived experience hinges upon the positioning of people who use social work services or people who more broadly experience injustice. For the ideal of lived experience to represent a vehicle to drive social work’s vision, the contributors of lived experience must be seen as capable and knowledgeable. The studies show that lived experience requires more than foundational social work principles of dignity and worth; lived experience relies upon trusting people as holding perspectives, experiences and knowledge that social work needs. The studies show that people will only offer their lived experience, and social work will only deeply engage with lived experience contributions, when people are engaged because they have something to offer that social workers do not have. Lived experience in this way is not simply ethical because people ought to have a say about a profession that seeks to benefit them; engaging lived experience is rather a requirement because it can produce insights that are required to help equip social work with what it needs to fulfil its vision. A central theme underpinning lived experience contributions to social work knowledge is an anti-oppressive approach. It is first recognising and then addressing the power imbalances between social worker and client that is core to aspirations for anti-oppressive social work approaches and engagement with lived experience. Lived experience is a resource that has the potential to contribute to anti-oppressive social work’s vision to disrupt structures and procedures of service delivery that hinder the liberation of oppressed people ( Strier, 2007 ). The potential that lived experience represents to fit into the transformative agenda serves as a powerful yet challenging reminder of whose lived experiences are included. Social work cannot advance by simply engaging lived experiences to inform the discipline, but rather through purposefully working to create the conditions where those who are most oppressed and marginalised can contribute.

Both the studies that tease out the barriers to lived experience and those that illustrate how lived experience is achieved demonstrate that the arguments for lived experience draw on the same premise as the arguments used to challenge the characterisation of people with identities such as the poor, the client, and the other. At its intellectual and ethical core, lived experience is a resource for social work when the people for whom social work exists can contribute as peers rather than the recipients of help. Writing about social work’s engagement with the concept of social justice, Atteberry-Ash (2023) observes to best meet the needs of individuals and communities, those individuals and communities need to be central to the advocacy process (2023, p. 43).

Atteberry-Ash’s (2023) ideas for an updated and conceptually rich notion of social justice require social work to understand people’s agency and work from participatory frameworks. The studies examined in this review illustrate where social work is premised on people’s agency, and their lived experience is engaged in ways that transcend their identities as other, such as looked after children, parents with children removed, or incarcerated women. The literature embodies the central elements required to move towards a rigorous social justice agenda. These ideals and opportunities evident in the literature are not always reflected in institutional practices. The social work studies that offer an opportunity to transcend othering must be considered critically within a practice landscape where people are indeed excluded based on their lived experiences. Bald et al. (2022) demonstrate the risks that criminal record checks represent for people to leave their past behind and to enrol in social work training.

The social work scholarship is cognisant, furthermore, of the systematic challenges to confront. It does not naively see lived experience as the panacea. The body of work presents the important resource limitations and institutional structures, including within universities, that constrain lived experience. More significantly, social work research is attuned to the way that lived experience contributions, even though they may be delivered and promoted with transformative intentions, become co-opted within dominant systems where oppression is located. In the same way that the research illustrates that lived experience contributions will not inform social work in the absence of resourcing and ongoing work, the scholarship is upfront that the potential systems change that lived experience may contribute will require more than enabling people to sit on governance boards, to give lectures to students and to co-design research. The studies show that social work has a responsibility to lead the changes required so that people, especially those most excluded, can contribute their lived experience.

Supplementary material is available at British Journal of Social Work Journal online.

Conflict of interest statement : None declared.

The research was funded by the Australian Research Council's Centre of Excellence for Children and Families over the Life Course (Project ID CE200100025) and the Australian Research Council Industry Fellowship (IM230100850).

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Published: 24 April 2023

Understanding the identity of lived experience researchers and providers: a conceptual framework and systematic narrative review

Veenu Gupta ORCID: orcid.org/0000-0001-5082-5068 1 , 4 ,
Catrin Eames ORCID: orcid.org/0000-0002-9893-1182 2 ,
Laura Golding ORCID: orcid.org/0000-0002-7714-4016 1 ,
Beth Greenhill ORCID: orcid.org/0000-0003-4948-6796 1 ,
Robert Qi ORCID: orcid.org/0000-0002-0868-1512 1 ,
Stephanie Allan ORCID: orcid.org/0000-0002-1016-0708 3 ,
Alison Bryant 1 &
Peter Fisher ORCID: orcid.org/0000-0002-7388-720X 1

Research Involvement and Engagement volume 9 , Article number: 26 ( 2023 ) Cite this article

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Identity is how we understand ourselves and others through the roles or social groups we occupy. This review focuses on lived experience researchers and providers and the impact of these roles on identity. Lived experience researchers and providers use their lived experience of mental or physical disability either as experts by experience, researchers, peer workers, or mental health professionals with lived experience. They must navigate both professional and personal aspects to their roles which can be complex. Performing roles simultaneously embodying professional and lived experiences contribute towards a lack of clarity to identity. This is not adequately explained by the theoretical evidence base for identity.

This systematic review and narrative synthesis aimed to provide a conceptual framework to understand how identity of lived experience researchers and providers is conceptualised. A search strategy was entered into EBSCO to access Academic search complete, CINAHL, MEDLINE, PsycINFO, Psych Articles, and Connected papers. Out of the 2049 yielded papers, thirteen qualitative papers were eligible and synthesised, resulting in a conceptual framework. Five themes explained identity positions: Professional, Service user, Integrated, Unintegrated and Liminal. The EMERGES framework, an original conception of this review, found themes of: Enablers and Empowerment, Motivation, Empathy of the self and others, Recovery model and medical model, Growth and transformation, Exclusion and Survivor roots contributed to lived experience researcher and provider identities.

Conclusions

The EMERGES framework offers a novel way to understand the identities of lived experience researchers and providers, helping support effective team working in mental health, education, and research settings.

Plain English summary

Patients now commonly help to teach healthcare professionals from their own perspective of what it is like to experience health difficulties and healthcare services. Consequently, the needs of patients are being better recognised by healthcare providers. Patients are also involved in research. These types of patient involvement lead to improved research and care. Patients included in this type of work are frequently referred to as patient providers, service user researchers, peer workers, experts by experience or lived experience researchers and providers. This might mean they are no longer viewed as people who use services but as people who provide a service. This review helps us understand how those in these roles are affected and how they understand themselves. We found they were sometimes described as either patients or professionals. Sometimes they were described as both patient and professional at the same time. Other times they were described as somewhere between a patient or professional. There were other important ideas that affected how they viewed themselves because of these experiences. These included feelings of empowerment and motivation from doing this important teaching and clinical work. The roles gave them a better understanding of their own experiences. These roles led to a personal growth and sense of achievement. The experiences of exclusion, and of being a patient affected how patient providers think of themselves. This understanding can lead to patient providers being better understood and leads to better teaching and training of healthcare professionals.

Peer Review reports

“My fractured self was pieced together in my pursuit of my newly formed service user identity… I once had only a tiny seed of hope, now this has blossomed giving me a new sense of identity, purpose and direction.” ~ Alison Bryant, Service user Advisor (2023)

There is a movement to integrate lived experience into professional domains with many mental health professionals now speaking out about their own mental health experiences [ 1 , 2 , 3 ]. Service user and carer involvement is a mandatory requirement for all Health Care Professions Council (HCPC) regulated healthcare training programmes in the UK, including, clinical psychology, and social work training [ 4 ]. It was introduced after a commissioned review by HCPC into the benefits, facilitators, and barriers to service user involvement from healthcare contexts [ 5 ]. The sector finds service user involvement is integral to the effective training of healthcare professionals according to the British Psychological Society [ 6 ].

The involvement of lived experience providers in expert-by-experience roles occurs in universities, through professional bodies such as the BPS’s Group of Trainers in Clinical Psychology (GTICP) involvement group and patient and carer representatives within the Royal College of Psychiatrists (RCPsych). The BPS’s Division of Clinical Psychology [ 7 ] also released guidance on valuing the lived experience of trainee psychologists and how to integrate it into their work. Whilst healthcare professions’ training and service improvement is informed through service user feedback akin to consumer and market led approaches [ 8 ], disability activism is more concerned with emancipatory outcomes, achieving greater citizen control and rights for disabled people and survivors, led by democratic models [ 9 ]. The emergence of survivor-led work has occurred largely through opposition to psychiatry and the medical model [ 10 ]. It is important to acknowledge that the consumerist model of service user and carer involvement in healthcare training has arguably been co-opted from the survivor movement [ 11 ].

There is increasingly more participatory involvement in research and policy development within healthcare. In the UK, the National Institute of Health research (NIHR) [ 12 ] provides guidance and mandates the process of involvement in research. Externally other research organisations in the UK such as McPin Foundation, National Survivor User Network (NSUN), Survivor Researcher Network (SRN), and Shaping Our Lives (SOL), to name a few, integrate and value lived experience. Due to the exponential growth in lived experience work, understanding how this work impacts people in these roles is essential.

There are several different roles where lived experience might be present. The focus of this review is determining the identities of experts by experience, lived experience researchers, peer workers and mental health professionals with lived experience. Integration of lived experience in healthcare educational settings is achieved through the expert-by-experience role, where those with lived experience act as ‘critical friends’ to the organisation [ 13 ]. Their involvement provides trainee healthcare professionals with insight into the challenges and experiences service users and carers have whilst navigating their mental or physical disability and of using services [ 6 ]. The expert-by-experience role contradicts the traditional role of the service user and positions them as experts and people to learn from, as opposed to contexts where they are perceived as passive recipients of care [ 2 ]. The expert-by-experience role highlights the visibility of their lived experience, with an expectation to draw on this in their roles. In a similar way, the lived experience of peer workers is evident through their label, where they work in a relational way with patients they support in clinical settings. As they work from a lived experience lens this has implications for whether they are perceived as staff members, peers, or patients [ 14 ].

Comparatively, the lived experience researcher role requires the researcher to draw on their lived experiences in the research they conduct and through which they interpret data, working in professional and academic contexts. Though due to the visibility of their lived experience, their credibility as researchers and the knowledge they produce may be doubted for example by epistemic injustice [ 15 ] where they are perceived through the stigmatised lens of a service user and their place in a hierarchy. In contrast, those in mental health professional roles can also have lived experience [ 3 ] but have the privilege to choose whether to disclose this or not. Additionally, their placement in a hierarchy may afford them further privileges in comparison to those in other lived experience roles. Although they are likely to experience stigma on occasions of disclosure from other mental health professionals, and from survivors of mental disabilities [ 1 ]. Therefore, these different lived experience roles may vary in different ways, including the visibility of their lived experiences and the extent to which this is expected, acknowledged, or stigmatised.

These examples illustrate the contradictory positionings of lived experience researchers and providers and how they can be complex, leading to poorly understood identity constructions. Hodge [ 16 ] identifies limits to patient and provider roles that are dichotomous and assimilated into experiential and professional knowledge bases exclusively. The identity of the lived experience researcher and provider do not clearly fit into these exclusive categories. These different lived experience roles may therefore give rise to novel formations of identity, requiring greater lucidity.

Benefits to integrating lived experience in mental health education and research results in empowerment [ 17 ], improved empathetic responses from healthcare professionals, influencing mental health institutions to be person-centred [ 6 ] and supports the learning of healthcare professionals [ 18 ]. Oliver et al. [ 19 ] describe the benefits of service user involvement but highlight the negative aspects of this work, including practical and personal risks to those engaged in this work. Resistance to the integration of lived experience by some service providers occurs through exclusion and tokenistic involvement [ 20 ], and queries over fitness to practice [ 14 , 21 , 22 , 23 ]. In addition, sometimes there are queries regarding the representativeness and authenticity of service users who are considered too professionalised [ 24 ]. These roles can cause emotional burden to those that perform them [ 25 ].

Further barriers to meaningful integration of lived experience can occur for several reasons. Service providers may want to maintain positions of power, they may lack experience in this type of work, or involvement may be at odds with the models within which they work, such as the medical or recovery model. Service providers may lack funding for these roles or may have negative views on the benefits of lived experience, or even vary over their subjective conceptual understanding of what it means to integrate lived experience [ 26 , 27 ].

These illustrations of risk to the lived experience researcher or provider, suggest the role may be unsafe and cause harm. Richards et al. [ 3 ] reported that the mental health sector is not yet ready or safe regarding integration of lived experiences. It is essential, and of great ethical necessity, that service providers do not cause harm to service users in these contexts. These roles, in which there is integration of lived experience in professional spaces, is likely to impact identity, an under researched area.

The theoretical basis of identity

Research on identity of healthcare professionals has tended to focus on the development of professional identities in, for example, medical students [ 28 , 29 ] nurses [ 30 ], clinical psychology trainees [ 31 ], and social workers [ 32 ]. This research identifies the importance of clarity regarding identity, resulting in better team working, wellbeing and resilience. Additionally, experiences of mental illness, such as Psychosis, also influence changes in identity [ 33 ]. Mental illness and disability are the basis for undertaking lived experience researcher and provider roles and so it is essential to understand how these roles might further influence identity.

Identity theories suggest identities are formed via group membership [ 34 ], or the roles we occupy [ 35 ], and intersectional [ 36 ] and liminal [ 37 ] processes. Social Identity theory [ 34 ] can be used to explain the service user identity, who may self-define with an expert by experience group as their in-group, and from which they begin to share similar values, beliefs, and behaviours. They identify differences between themselves and others. For example, experts by experience in clinical psychology may find themselves in opposition to psychiatry. Tse, Cheung, Kan, Ng and Yau [ 38 ] find service user involvement provides the right context to lead to changes in identity. Social Identity theory suggests identities are formed in opposition to other social identities. However, the theory does not account for simultaneously occupying the oppositional positions of lived experience and professional identities.

Identity theory [ 35 ] suggests identity is drawn through the roles we occupy in a structured society. Individuals attribute meaning and expectations to these roles through interactions with others. The expert by experience can be seen to move between different identities such as the patient and professional, dependent on context and whom they are talking to [ 20 ]. We seek to preserve the clarity of one’s own role, resulting in more certainty and satisfaction with our own identities [ 39 ]. The lived experience role, however, spans both patient and professional, resulting in contradictory meanings which are likely to be unsatisfactory, due to a lack of clarity. This suggests a complexity to these roles that identity theory may not completely account for.

Liminality [ 37 ] better accounts for ‘in between states.’ Liminality is understood as “a position of ambiguity and uncertainty” (Beech [ 40 ]; p. 287). The concept describes the role of peer workers and peer researchers [ 14 , 25 ]. Liminality may be useful in explaining lived experience roles. Although, the concept undermines the complexity of the lived experience researcher or providers’ identity due to the suggestion of an absence of identity.

Intersectionality [ 36 ] refers to the intersecting personal elements of an individual such as race, gender, class, ethnicity, sexuality, and others, that in conjunction with each other, compound the experience of discrimination. Mental health identities and professional identities may also be influenced by intersectionality [ 41 ], suggesting the role may be burdensome. Additionally, Liminality [ 37 ], may also be burdensome, and interact and impact identity, similarly to the process of intersectionality [ 41 ].

The theories do not explain the identity of lived experience researchers and providers. Considering lived experience researcher and provider roles are increasingly common, a better understanding of how these roles impact identity is required. This will support others to better understand those in these roles, encourage better team working and identify influencing factors relating to the formation of identity.

Systematic reviews have focussed on service user involvement, the process of involvement and, but to a lesser extent, on the impact of involvement on learning and clinical skills [ 42 , 43 , 44 , 45 ]. A systematic review and conceptual framework of recovery of mental health patients has been conducted [ 46 ], a conceptual understanding of identity changes in psychosis [ 33 ], and a literature review into service user involvement and identity [ 47 ]. However, currently, there is limited research into the identity formation of lived experience researchers and providers and no systematic review that provides a synthesis and conceptual framework of factors relating to their identity development. This systematic narrative review will combine articles that focus on identity across different roles that features lived experience, including experts by experience, lived experience researchers, peer workers and mental health professionals with lived experience. It will explore the similarities and differences relating to their identity constructions. This will be a starting point from which to identify how identities across these groups are constructed and offer a contribution to the limited research in the area. This will further elucidate and give clarity to the identities of lived experience researchers and providers.

Aims The aim of the review is to identify how identity has been conceptualised in relation to lived experience researchers and providers in mental health, education, and research settings.

The secondary objectives are to develop a conceptual framework to describe the identities of lived experience researchers and providers.

Methodology

Conditions or domain being studied.

The systematic review explored lived experience researchers and providers and how their identities were impacted by these roles in mental health, education, and research.

Positionality and reflexivity

The review was conducted by VG, PhD researcher, and PF, LG, BG, Clinical psychologists, and CE, research psychologist. VG is also an expert by experience for two involvement groups for clinical psychology programmes and is a service user advisor to national research projects related to their own individual experiences. The research team see this as a strength but are aware of the potential biases each of their own experiences may cause in relation to the design and analysis of the research. This was mitigated by themes and findings of this review being discussed as a team. The review held pragmatism as its epistemology to understand findings and collate studies that differed in methodologies and philosophical perspectives. SA and RQ were independent PhD students each with their own lived experience and academic knowledge contributing to quality appraisal alongside VG. Service user advisor AB also brought her own lived experience to help assess validity of the findings. The GRIPP2 checklist also details the nature of lived experience within the systematic review. VG also kept a reflective diary throughout the process to better understand the emerging themes and relationships between the data, as well as to record feedback from across the research team discussions and those with lived experience.

Information sources

The search strategy was trialled and tested in an iterative way until it was optimal in capturing relevant articles for the review. The search strategy was co-created with the research team and a university librarian was also consulted. The search strategy is detailed in Table 1 , which was inputted into the University of Liverpool database, on 21st November 2021 and re-run on 17th May 2022 using EBSCO to access journals from Academic search complete, CINAHL, MEDLINE, PsycINFO, Psych Articles, and University of Liverpool Catalogue was used for this. Hand searching of references from papers was conducted. Connected papers website was used to search for related papers. Figure 1 reports the selection procedure.

PRISMA Flow diagram of selection process

Selection process

VG initially assessed eligibility of studies using criteria established in Table 2 . Where there were queries over eligibility the supervisory team were consulted, PF, CE, LG, and BG.

The characteristics of the studies, type of study, method used, sample size, participant demographics, research aims, and findings were extracted. More specifically, effects and impact of lived experience researchers and providers’ work on identity were extracted through preliminary summaries and themes extracted of each study.

Synthesis methods

The review followed the PRISMA [ 48 ] protocol for conducting systematic reviews. The modified version of Popay et al. [ 49 ] stages of developing a conceptual framework was applied to the synthesis. The stages were (1) Develop a preliminary synthesis of findings, (2) Explore relationships in the data within and between studies and (3) Assess the robustness of the synthesis. This methodology was used as it is a systematic way to conduct a narrative synthesis and reports the process transparently. This methodology has also previously been used successfully in a systematic narrative review to develop a conceptual framework before [ 33 ]. Stages 1 and 2 were undertaken by VG.

Stage 1 preliminary synthesis

This stage involved tabulation and a thematic analysis of the identity of lived experience researchers and providers. An overview of the characteristics and themes of each study are in Additional file 1 : Table S1. This preliminary synthesis informed the development of a coding framework and each article within the review inductively coded to identify additional themes, using NVIVO, this allows for new and emerging themes and a flexible coding approach to the different articles.

Stage 2 exploring relationships within the studies

The studies were assessed for similarities and differences to identify emerging themes that explain identity. The studies in the four different groups, mental health professionals with lived experience, peer workers, lived experience researchers, and experts by experience, were analysed separately in this sequential order. The results were compared and synthesised to see if the research areas held different or similar conceptualisations of identity, and these supported in translating the initial synthesis into a conceptual framework. Codes across the articles that were similar in meaning were brought together and labelled under overarching themes. The methodology followed allowed for flexibility, allowing the researchers to pre-define the methodology of the three stages, as detailed, which were rigorously followed.

Stage 3 certainty assessment: checking the robustness of the synthesis

Quality appraisal was conducted using Joanna Briggs Institute (JBI) critical appraisal tool [ 50 ] by three independent researchers, VG, SA and RQ, using the same procedure and variation discussed until consensus was reached over the course of two meetings. The reviewers were each PhD researchers and two of these reviewers with lived experience. To understand the robustness of the synthesis service user advisors (1), lived experience researchers (3), and academic mental health professionals (3) were consulted to see whether the conceptual framework fitted with the way they understood their identities as lived experience researchers and providers. This involved gaining feedback and asking the question ‘Does this fit with how you understand your experiences as a lived experience researcher/provider?” The purpose of this was to check the validity of the conceptual framework. This is further evidenced through a reflective account by Service user Advisor, AB.

Eligibility and inclusion and exclusion criteria

The SPIDER tool for qualitative research, Cooke et al. [ 51 ] was used to describe the eligibility of articles within the review. This is commonly used in qualitative syntheses. The review only included articles with a focus on identity of those who performed lived experience researcher and provider roles in the context of mental health, training, and research settings and not for example in medical settings. Only participants of adult age were included. This is detailed in Table 2 .

The search strategy yielded 2049 articles from the databases and after duplicates were excluded resulted in a total of 1465 articles. Of the 1465 articles screened, thirteen articles met the inclusion criteria, as shown in Figure 1 . These were published between 2011 and 2022 and originated from USA, Australia, UK, Canada, Finland, and Belgium, and sample size of the studies ranged from 1 to 46 participants. These studies explored the identities of mental health professionals who were also survivors or service users [ 1 , 3 ]; the identities of peer workers [ 14 , 21 , 22 ] social work students [ 23 ] service user researchers, experts by experience and co-researchers and peer researchers [ 20 , 25 , 52 , 53 , 54 , 55 ] and service user and carer representatives [ 56 ]. All studies were qualitative but varied in methodology, epistemology, and analysis and so a pragmatic approach was used to synthesise different approaches. One of the studies was part of a randomised controlled trial and another part of a pilot study and all, empirical qualitative studies. A synthesis of the findings follows, followed by a translation of these findings into a conceptual framework.

Quality appraisal

The Joanna Briggs Institute (JBI) [ 50 ] quality appraisal tool for qualitative research was used to assess the quality of each paper using 10 items that were scored as yes, unclear, and no regarding quality. Three independent researchers assessed the 13 papers. Following discussion over differences in ratings, consensus was reached. Fleiss’ Kappa interrater agreement was moderate, k = 0.485, p < 0.001. Kappa agreement for ratings of No, k = 0.769, p < 0.001, Yes, k = 0.554, p < 0.001 and Unclear, k = 0.184, p < 0.001. The mode quality appraisal ratings can be seen in Table 3 . Ethical approval was not stated in some studies [ 1 , 20 , 23 ]. There was some bias in the recruitment process [ 1 ] for example this study recruited participants from their own personal networks. Each of the studies lacked diversity in their sample regarding ethnicity and gender. 8 studies did not report demographics on ethnicity [ 1 , 20 , 21 , 22 , 23 , 52 , 53 , 54 ]. 3 studies did not report gender [ 1 , 23 , 53 ] and 1 study reported this ambiguously [ 52 ] and Cooke et al. [ 55 ] included a sample of only white females. Age was not reported in 5 studies [ 1 , 3 , 21 , 23 , 25 ] and 1 study reported that participants were of adult age, but no descriptive statistics were included [ 22 ]. Each of the studies varied in philosophical approaches and methodologies. There were also limited statements identifying the researchers’ own positionality in relation to the research, either theoretically or culturally, [ 23 , 25 ] and it was unclear in 3 studies [ 14 , 22 , 52 ] and very limited acknowledgement of the researcher’s impact on both the research and vice versa, which was not identified in 4 studies [ 14 , 23 , 25 , 52 ]. Different lived experience researcher and provider roles were treated as a homogenous group within 2 studies [ 1 , 3 ]. All but one study allowed for heterogeneity regarding type of lived experience of mental or physical disability. Cooke et al. [ 55 ] only included people with a personality disorder diagnosis. 2 studies were heavily theoretically driven without the researchers acknowledging the deductive approach they used and its influence on findings [ 14 , 56 ].

Stage 1 Preliminary synthesis

Stage 1 involved summarising, tabulating, and data extraction of the studies in the review according to the pre-defined methodology. This is presented in Additional file 1 : Table S1.

Stage 2: Exploring relationships within the studies

Stage 2 involved synthesising these studies and identifying similarities and differences, in the relationships within and between the studies. Five main themes of identity positions were identified and seven themes relating to identity development. The following section explores these themes across the studies. Table 4 details the positions of identity found, and Table 5 identifies how the studies contribute to the development of the EMERGES framework.

The positions of identity

Five identity positions became apparent; each of these is described below in Table 4 .

Service user and survivor identities

Service user and survivor identities were common across all studies. The data identified service users, survivors, drug users and experts by experience. These identities were separate to the service provider and held less power, control, and respect. Cameron et al. [ 20 ] reported that services perceived the service user or disabled person as the one with a problem. Their identities are also perceived as “limiting” (Newcomb et al., [ 23 ], p 2). DeRuysscher et al. [ 21 ] also found that service users were defined and overshadowed by their service user identities. Service user involvement work provided the opportunity to transform these identities and move beyond the stigma associated with them to more positive identities not rooted in deficit [ 54 ]. The idea of role reversal, where the service user became the provider through the expert by experience role, changed the power differentials and enabled service users to be seen as people to learn from [ 52 ].

Professional identity

Across the 13 studies the professional identity of lived experience researchers and providers was constructed. This consisted of having skills and competences to effectively carry out these roles [ 20 ] and motivation to combine existing competences from personal lives into professional roles [ 52 ]. Richards et al. [ 3 ] found those with professional identities were seen as knowledgeable, and competent, with more power than those with just service user identities. Peer workers were focused on developing professional identities which were legitimized through training [ 14 ] and appropriate titles [ 52 ]. There were allowed and disallowed characteristics, such as it “not being acceptable to become angry” [ 3 ] p 6], “having everything together” and “never having a bad day” (Wilson et al. [ 22 ], p363). Jones [ 53 ] reported, being an expert by experience required that one must communicate articulately and clearly. Cooke et al. [ 55 ] find that the development of a professional identity shifted service users to feel as though they have greater value and power. Within these studies, it was reported that service user researchers and providers were more likely to want to convey their expertise as people with knowledge who were skilled at their jobs to detract from their stigmatised service user identities.

Integrated identities

Integrated identities were discussed within the research as individuals holding service user and professional identities simultaneously, and this was problematic and conflicting for the individual. There were differently held beliefs of whether integration was useful or not. Richards et al. [ 3 ] found within an “integrated” identity, participants drew on all their identities to inform their practice, but this was rarer than the unintegrated identity as it was more difficult to accomplish. Newcomb et al. [ 23 ] found when academics shared their lived experience in professional contexts it reduced stigma and provided student healthcare providers with examples of how to integrate their own lived experiences. However, research [ 1 ] found integrating lived experience excluded them from being accepted by colleagues within the profession and by other survivors of the mental health system. The idea of integration was spoken of as embodiment but was emotionally burdensome in peer researchers [ 25 ].

Unintegrated

This theme addressed the issue of being unable to hold identities of service user and professional simultaneously. Richards et al. [ 3 ] reported the “mad man versus someone who got a reputation for being highly professional they’re worlds apart unfortunately.” [ 3 , p7]. Service user and professional identities were understood as separate and either good or bad. Research [ 1 ] found that, despite mental health professionals having personal experience of mental illness they were likely to keep that hidden. Cooke et al. [ 55 ] also find that being perceived as the one with lived experience in the room was conflicting, leading to a reluctance in wanting to share. Newcomb et al. [ 23 ] reported this was due to stigma and fear over queries over fitness to practice. This fear stopped some peer workers from seeking help when they relapsed [ 22 ]. Cameron et al. [ 20 ] also identified the conflicting positions experts by experience occupy, where in one context they are sources of knowledge, and other contexts as consumers of care. The service user representative role required service users to share their stories but with an expectation to separate the emotion from storytelling, to create distance from the service user identity to support learning from experience that could be tolerated by healthcare professionals [ 25 , 52 , 53 ].

Liminality/ambivalence

The concept of liminality [ 37 ] is applied by Simpson et al. [ 14 ] and Faulkner and Thompson [ 25 ] to describe the experiences of peer workers who occupy a space in between being a service user and professional. The role ambiguity through occupying in between identities meant that it was difficult for peer workers to understand how they should interact with the people they support and the teams they work in. There was a lack of understanding whether they were friends or peers or a different dynamic. This had consequences for how others perceived them, and unclear expectations of the role and services they provided. This identity ambiguity led to differences in respect and power associated with these roles. This posed similar dilemmas to the lived experience researcher holding ambivalent identities [ 25 ].

The EMERGES framework

The data in the studies informed the EMERGES framework where 7 core themes related to identity development were found, encompassing: Empowerment, Motivation, Empathy of the self and others, Recovery model and medical model, Growth and transformation, Exclusion and Survivor roots as demonstrated by Table 5 . The framework is illustrated in Fig. 2 . This is presented in reverse and ascending order starting from survivor roots through to enablers and empowerment replicating the journey that the current research suggests lived experience researchers and providers go through to develop their emerging identities.

A visual representation and summary of findings in the review

Survivor roots

Adame [ 1 ] found the survivor identity were the roots and drivers of their need to work in the system. “The survivor part of me is what gets me out of bed each morning, and thinks that what I’m doing is important, and meaningful, and really needed…Like this background motor, I guess. It’s its own string of conviction, this motor, this energy that’s all in the background.” [ 1 , p327] Jones et al. [ 53 ] found that participants were likely to draw on their acute struggles of lived experience in their roles. Toikko [ 52 ] identified how having lived experience of mental distress was the foundation to becoming an expert by experience. A parallel identity to that of survivor roots was that of disability roots, and this was the source of motivation to challenge and disrupt the system which is disabling [ 20 ].

Exclusion/stigma and discrimination by services

This theme covered how lived experience researchers and providers felt they must hide their lived experience due to queries over competence and fitness to practice. [ 1 , 23 ]. Service providers also chose who they listened to, and involvement could be tokenistic, recycling oppression lived experience researchers and providers experienced in contexts where they were service users [ 20 ]. Certain voices were excluded that were more chaotic and less professionalized [ 53 ]. Cooke et al. [ 55 ] also identify how the label of personality disorder is shaming and stigmatising, and diagnosistic practices operated in an inclandestine way excluding their involvement. Exclusion and alienation of those from minority ethnic backgrounds within these spaces was also discussed [ 25 ]. Hill et al. [ 56 ] also related service user and carer involvement to a need to “break the glass ceiling” as staff were seen to hold the power and control the agenda.

Growth and transformation

This theme encompassed experts by experience and co-researchers discussing effects of involvement leading to a metaphorical growth and transformation. “Seeing everybody still ‘fighting for it’…the enthusiasm is more than ever… these are different people to the ones three years ago, I’ve been able to watch my teammates blossom!” [ 54 , p646]. Richards et al. [ 3 ] found the impact of these roles resulted in positively framed identities, facilitating recovery. It enabled individuals to have alternative, additional identities where the service user identity did not overshadow them. “So, it’s not the most central thing anymore, that you’re a mental health patient, but rather that you are a lot more as well.” (Toikko, [ 52 ], p303). Hill et al. [ 56 , p 9] also found the theme of “The person you see now is not the person I was.” This growth and transformation was related to the emergence of a professional identity, moving further away from the service user identity Cooke et al. [ 55 ].

Recovery model versus medical model

This theme found the recovery model was a facilitator in changing mental health identities to be seen as recovered. However, both the recovery model and medical model could both empower and disempower. Across the studies identities of lived experience researchers and providers were rooted in and influenced by these models. Despite models such as the social model of disability not locating the problem within the service user, the lens in which service providers worked “gets shifted back to medical model approach” Cameron et al. [ 20 , p 1323] influencing identities to be seen as disordered. Richards et al. [ 3 , p 10] found that those who drew on a “personal recovery” had more positively framed identities because it placed less emphasis on being “stuck”. Adame [ 1 ] identified an alternative discourse regarding the medical model, some service users found it helpful, and when the provider challenged the service users’ alignment with the medical model, or of diagnosis, it was invalidating to how service users understood themselves and their experiences. Cooke et al. [ 55 ] felt the process of diagnosis was disempowering but became empowering once service users understood that the damage that came from diagnosis came from service providers. Hill et al. [ 56 ] also found that relations between service users and carers within involvement groups required a management of power dynamics.

Empathy of the self and others

This theme covered how the experience of being a lived experience researcher and provider led to an understanding of the self and others. Service user representatives found sharing stories of personal experiences turned them into common shared experiences of distress, enhancing empathy and reducing stigma. The PSW discussed the importance of being ‘one of them’ and able to ‘get it.’ Simpson et al. [ 14 , p 665]. Richards et al. [ 3 ] and Newcomb et al. [ 23 ] also found that personal experiences of distress enabled better understanding of those they worked with. Providing a social domain in which individuals shared their experiences as co-researchers meant they felt, understood, and better understood others [ 52 , 53 , 54 , 56 ]. In relation to each other they also felt like they had similar experiences and a sense of “group survivorship.” Hill et al. [ 56 ], p 6]. Richards et al. [ 3 , p 9] also identify a similar group identity through the idea of a shared “personhood” and Cooke et al. [ 55 ], p 239], found it useful to work with others who are similar like a “band of brothers.” Adame [ 1 ] found empathy of the self and others was impacted by overidentification, blocking a therapist’s understanding of those they support. This meant that these roles sometimes supported or hindered understanding the self and others.

Motivation to integrate

Adame [ 1 ] and Newcomb et al. [ 23 ] identify that lived experience providers were motivated to make a difference to others, due to their own lived experiences and wanted to prevent others experiencing the same injustices of the system. Positive experiences of services were motivators for becoming lived experience researchers or providers and modelling this experience in their own practice. Additionally, motivations to apply professional knowledge to better understand their own experiences was important [ 3 ]. Cameron et al. [ 20 ] found a motivator to continue in the work as a service user representative was to purposely disrupt the power dynamics in these contexts. There was a need to move beyond the service user identity [ 54 ] and change their own narratives to more positively framed senses of self with a purpose in life. Faulkner and Thompson [ 25 ] also identified that it was not simply enough to be working as lived experience researchers but to actively be integrating their lived experience into their work. Cooke et al. [ 55 ], p 239] also find that expert by experience roles were motivated in making use of past struggles “It almost comes worthwhile because you can almost see you’re doing something with it.”

Enablers and empowerment

The lived experience researcher and provider role enabled moving beyond the service user identity [ 49 ]. This was influenced by learning and combining new and existing skills [ 14 , 20 , 22 , 52 , 53 , 56 ], and contexts situated in the recovery model, gave hope [ 3 ]. Toikko [ 52 , p 303] found that being an expert by experience led to an orientation towards the future. They were empowered after involvement [ 53 ] and through being listened to, heard, and meaningfully involved [ 20 ]. It also gave meaning and purpose through “planting a seed” (Cooke et al. [ 55 ], p 240). Hill et al. [ 56 ] also found that meeting challenges, resulted in self-belief by having control over decision-making. Activism, social change, politicised identities, and positive identities were developed because of these roles and were thought to facilitate recovery [ 1 , 20 , 53 , 55 , 56 ]. However, some providers maintained there were fewer opportunities for those with drug user identities that were disempowered in their roles due to stigma and the permanence of a service user identity [ 22 ].

Stage 3: checking the robustness of the synthesis: reflections by alison bryant, service user advisor

“I am in awe of the EMERGES framework and thoroughly relate to the themes and how my experience is integrated into those themes.”

The robustness of the synthesis was checked by each member of the research team (VG, PF, LG, BG & CE) and researchers at McPin Foundation (RT & TM). AB, service user advisor uses the EMERGES framework to reflect on her lived experiences and evidences its utility as a reflective tool.

Survivor roots “ My long history of mental health presentations has defined me at every stage of my life. My experiences of services have been very varied, adding to the burden of my lived experience. Clinical psychology, and specifically mindfulness, has helped me to survive and be able to acknowledge that I have survived, and is now deeply meshed as part of my lived identity.

Exclusion/Stigma and Discrimination : I know holding my lived mental health experience and identity as being valuable to others (let alone myself) has been a hard road to travel. At times, my own perception of stigma initiated feelings of exclusion, but also, I acknowledge that I have ‘lost’, through smoke and mirrors, some of my history and identity when I realised this was neither valued nor accepted if not absolutely rejected. When the presence of imposter syndrome arises regarding my identity whilst working alongside academic or professional identities with no lived experience, I try to comfort myself that this is to be expected and to work towards reducing my feelings of exclusion.

Growth and Transformation : I and my family know how much my identity has been shaped by my involvement as a service user/provider. Both self-stigma and societal stigma have been a lens through which I have viewed my lived experience of mental health, this view having now been reframed in the context of my service user involvement. These experiences validate me and acknowledge my voice is heard. My knowledge sharing has empowered me so much, to the extent that sometimes I consciously listen to my voice that was once so subdued with a sense of surprise and ownership previously lacking.

Recovery model versus medical model : My clinical psychologist, in presenting me with the then novel concept that my experiences would be valued by others, was instrumental in me taking on the role of service user/provider. My initial involvement was at times bewildering, often surprising, but allowed my identity to develop bit by bit over time. My recovery from psychosis has been reinforced through my service user identity and involvement, but I am all too aware that there are periods when my mental health is less stable, and my service user involvement may be seen as less productive or useful. This presents me with an insurmountable hurdle to achieving full involvement unless, in the future, the “goal posts” are shifted with mental health adjustments to better support service user providers.

Empathy of the Self and others : My service user involvement was a seed planted by my clinical psychologist that related to part of my identity which had always been at the forefront, and a heartfelt wish that others never had to go through the experiences in life and in managing mental health that I had done. Being able to demonstrate as a service user provider to those in training the reality of my lived experience helps shape them as practitioners. Sharing with other service users, identifying with them, and offering support and solidarity through the challenges of shared lived identity is very empowering.

Motivation : For many years, my sense of self and identity had been eroded by the effort of constantly battling my mental health and despair at the impact on my quality of life and that of my family. My ability to be confident, to interact socially, my sense of self-esteem and sense of purpose had become lost in the struggle to become well. My most recent contact with services was a key factor in my recovery, and the incentive generated because of the therapeutic alliance with my clinical psychologist to help others was an overwhelming driver in my journey to recovery and new identity. My fractured self was pieced together in my pursuit of my newly formed service user identity.

Enablers and Empowerment : I had over time lost sight of skills or abilities I had held as part of other identities. Becoming a service user/provider allowed me to revisit those identities, to tease out what would sit alongside my mental health lived experience, to empower other service users, health professionals, trainees and ultimately myself. I now have a new perspective on my experiences gleaned from this new vantage point. I once had only a tiny seed of hope, now this has blossomed giving me a new sense of identity, purpose and direction . ”

The review aimed to understand how the process of working as lived experience researchers and providers in mental health, education and research settings impacted identity and to develop a conceptual framework. The framework identifies five different positions of identity: Service user, Professional, Integrated, Unintegrated and Liminal identities and details influencing themes of the EMERGES framework consisting of Enablers and Empowerment, Motivation, Empathy of the self and others, Recovery Model and Medical Model, Growth and transformation, Exclusion (Stigma and Discrimination) and Survivor roots. The EMERGES framework is a novel conception and has common themes of emotion and power running throughout, with some overlap between themes.

The service user position is characterised as being disordered, limiting and considers the individual as the one with the problem. This is consistent with research in mental health settings, where illness identities are detrimental to hope and recovery, resulting in poorer mental health [ 57 ]. The lived experience researcher or provider is expected to control their emotions and keep a distance from their illness, detracting from diversity and representativeness of service users who are chaotic or suffer from severe mental illnesses, influencing the type of identities within these roles [ 58 ]. The service user has to switch between positions, for example, having to move between service user and expert by experience, where there are different levels of power, and control in decision-making, requiring negotiation [ 2 ].

Professional identity was reinforced through training and labels used to describe them, giving them the skills and competences to work in their roles. This is consistent with, the Academy of Medical Royal Colleges [ 59 ] that identify skills and knowledge to perform a professional role are key to developing a professional identity. Mayer and Mckenzie [ 60 ] also find professional identities of experts by experience are influenced through interactions with experts by qualification and through performing these roles.

The Integrated identity was characterised by sharing lived experience both in research and clinical practice. Beames et al. [ 61 ] find the integration of lived experience in all stages of research supports meaningful research and outcomes. Arroll and Allen [ 62 ] find self-disclosure results in greater therapeutic rapport and empathy. However, Bray [ 63 ] identifies the risks of self-disclosure and how it de-centres the service user. Alternatively, the peer support worker role requires them to work with patients through a shared experience of distress, but they do not necessarily need to disclose as there is already visibility of lived experience. Sharing of lived experiences by professionals is likely to de-stigmatise the idea of mental illness [ 64 , 65 ]. Integrating lived experience in professional roles is related to being an authentic version of the self. Research into authenticity suggests that when we are authentic it is better for our health and wellbeing [ 66 ], providing support for the benefits of lived experience roles.

The Unintegrated identity of the service user and professional identified how these identities were conflicting and could not be held simultaneously. Research suggests that experiential knowledge comes predominantly from the expert by experience, suggesting learning about experiential knowledge cannot come from mental health professionals. Additionally, professional knowledge is better assimilated when it comes from healthcare professionals as opposed to those with lived experiences [ 16 ]. This is explained by epistemic and hermeneutical injustice which poses limits on where knowledge is learned from [ 15 ]. Lived experience researchers and providers are also required to separate emotion and maintain professionalism in their roles. They must convey “affective intensity, while not spilling over into uncontrolled illness” (Naslund et al. [ 67 ]: p10). Researchers and professionals with lived experience are also impacted by stigma in the profession of lived experience that may determine whether they integrate lived experience in their research or clinical work.

Further to this, an unintegrated or integrated identity largely depends on the role and the level of visibility of lived experience within that role. For example, mental health professionals have a sense of privilege as they can choose when or when not to disclose their lived experiences [ 68 ], as this is not the purpose of their role. In contrast to this, experts by experience or peer workers are specifically employed to voice and embody lived experiences. It is also acknowledged by some experts by experience that there is a choice over owning different identities at different times by choosing when to wear the lived experience hat [ 13 ]. Although for those employed in lived experience roles this might not always be possible as there is an expectation from others that they must work from an experiential lens. Alternatively, those in peer roles embody lived experience, but there is control over articulating the specifics of this experience as they operate in a relational way, connecting through common experiences of distress that do not necessarily depend on disclosure. Although, due to the visibility of their lived experience, research shows peer workers are more likely to disclose, encourage and elicit disclosures from patients and other healthcare professionals, consequently increasing the visibility of lived experience in a clinical context [ 69 ]. These examples across these different groups serve to articulate the distinction between these different roles and the extent to which they can integrate lived experiences.

The process of liminality [ 37 ] described the identity of peer workers and researchers [ 14 , 25 ]. Wu et al. [ 70 ] suggest that Liminal spaces negatively impact the mental health of individuals occupying this space. Warner and Gabe [ 71 ] identify how mental health social workers find it difficult to work with mental health patients who occupy liminal spaces as they are difficult to understand and support. This can also translate to the way lived experience researchers and providers are understood and worked with in clinical practice and research, by colleagues. Although, anecdotal evidence suggests those in lived experience roles are likely to have a better understanding of their own identities. Whereas those they work with will often perceive them as occupying liminal identities. These findings can support service providers and colleagues to better understand those with liminal identities and enable better team working. It also identifies how these roles have an emotional burden on those performing them.

Outlined below are the seven core elements of the EMERGES Framework found as a result of the systematic narrative review. Each element is considered and discussed in relation to the evidence base and how lived experience researchers or providers can be better understood and worked with in mental health, research, and educational settings.

This theme found becoming a lived experience researcher or provider was rooted in the history of being a survivor or service user of the mental/health system. The experience of trauma or iatrogenic harm from services can influence changes to identity. Through the process of having positive or negative experiences of services may be formative to self-identifying as a service user or survivor differently. Wallcraft et al. [ 72 ] identify the diversity of perspectives within and between service users and survivors but identify shared motivations to improve the mental health system. The intersectional [ 41 ] influence of lived experience and professional aspects to the role means that this researcher or provider has more complex needs and requires greater support.

Stigma and discrimination were shown to negatively impact disclosure of lived experience and health-seeking behaviour and this is seen in wider contexts [ 73 , 74 ]. The review team’s own observations find service user involvement is typically made up of white service users and is unrepresentative of the population which may be symptomatic of exclusion in the mental health system. There are also them and us divisions between lived experience researchers and providers and those they work with. For example, knowledge of stigmatised diagnostic labels, such as personality disorder, affects how experts by qualification perceive and work with them [ 75 ]. There are also divisions between different lived experience researchers and providers [ 1 ], for example, experts by experience and mental health professionals with lived experience, meaning different lived experience researchers and providers do not belong to the same identity.

The review found a consistent theme of growth and transformation. This links to a broader body of evidence within the literature on how service users or survivors of mental or physical disability experience post-traumatic growth [ 76 ]. Theoretically driven research metaphorically likens the effects of service user involvement to growth and transformation [ 38 ] and research finds the expert by experience role results in transformative effects [ 77 , 78 ]. Some lived experience researchers and providers also have a romanticised perspective and find transformative effects in identity following the experience of psychosis [ 33 ]. Schneider et al. [ 79 ] find non-white people and those with serious forms of distress are more likely to experience greater post-traumatic growth, suggesting the trajectory of growth and transformation of lived experience researchers and providers may be variable.

Recovery model and medical model

The wider literature identified the recovery model was more likely to lead to feeling more hopeful and move individuals further from the service user identity [ 80 ]. The recovery model arguably has a negative side that promotes a certain journey for service users, modelling ideas about competence, expertise and health outcomes that reduce the ideal service user to someone that is recovered [ 81 ]. This limits the type of individual in lived experience researcher and provider roles, reducing the representativeness and authenticity of service users. The recovery model ironically detracts from the service user identity. In contrast, the medical model reinforces the service user identity, positioning the service user as in need of help, as ill or disordered [ 82 ]. The context and models in which individuals are situated in can influence the way individuals conceptualise their own experiences. This aligns with social constructionism epistemology [ 83 ]. The recovery model, medical model and social disability model are pervasive in the sector and explain findings in the review and how lived experience researchers and providers’ differently construct their identities based on the models they identify with.

This theme found how sharing experiences within a social domain were used to connect with and understand others. The social identity of the lived experience researcher and provider role provided a sense of belonging to an in-group where we share similar values, beliefs, and experiences, supporting the formation of a social identity [ 34 ]. The historical exclusion of this group of people in society means the role enables them to have a sense of belonging. Hawkins [ 84 ] suggests a desire to tell others about our own experiences becomes a desire to help others and this is a motivating factor in integrating lived experience. The process of lived experience researcher and provider identities may mean they better understand the people they research or work with and make them better person-centred practitioners [ 85 ]. However, issues relating to transference and countertransference can negatively impact understanding others through the projection of one’s own lived experiences.

This review identifies the idea of motivation to integrate lived experience and professional identities and hold them simultaneously. This motivation aligns with wider mental health contexts, for example, the division of Clinical Psychology [ 7 ] released guidance on how trainee psychologists can integrate their lived experience into their work and training. This suggests the lived experience researcher or provider and mental health training are in alignment regarding motivations to integrate lived experience. This is likely influenced by changes in policy (Department of Health, DOH, [ 86 , 87 , 88 ] and the service user movement [ 5 ].

Empowerment and enablers

The review found the idea of empowerment through lived experience researcher and provider work, and this may occur through a social justice motivation [ 89 ]. Through lived experience researcher and provider roles that are politically motivated, formed of activists and advocates means they are moving away from individual motivations to make a difference to a collective motivation to make a difference for others like themselves. This may be governed by social identities [ 34 ]. Belonging to a social identity is likely to result in the health and wellbeing of members in the group, strengthening the group and empowering it and advocating for it. This can be explained through the social cure phenomenon in social identities [ 90 ]. Further to this, reaction against out-groups provides a motivation to disrupt and challenge other social identities such as Psychiatry or Psychology.

The EMERGES framework and links to other frameworks

The EMERGES framework conceptualises the identities of lived experience researchers and providers and builds on previous frameworks in other contexts, offering a novel way to understand identity. There are parallels with findings from the CHIME framework, which is made up of themes of Connectedness, Hope, Identity, Meaning, Empowerment [ 46 ]. Although the CHIME framework is critiqued as being overly optimistic and positive, and other researchers argue it does not account for difficulties that service users experience, advocating for an addition of D to the CHIME framework representing difficulties [ 91 ]. In contrast, the EMERGES framework explicitly highlights the exclusion lived experience researchers and providers experience which is undermined by the retrospective addition of the D in CHIME-D framework. There is also overlap with Emery’s literature review [ 47 ] of service user involvement, finding themes of empowerment, recovery, and identity, giving validity to this review. Ng et al. [ 92 ] find in their conceptual review of psychosis and growth and transformation the acronym of PROSPER, Personal identity and strength, Receiving support, Opportunities and possibilities, Strategies for coping, Perspective shift, Emotional experience, and Relationships. The EMERGES framework encompasses similar themes to these frameworks but specific to lived experience researchers and provider identities, offering a novel and accessible way to understand them.

Strengths of the review and framework

The review identifies the novel EMERGES framework which can be used as a reflective tool and has practical applications both within research and clinical settings with the heterogeneous population of lived experience researchers and providers. The framework was co-created with a multi-disciplinary team, including lived experience researchers and providers, at every level within the review, adding to the robustness and validity of the findings and additionally, peer-reviewed by researchers at McPin Foundation. Quality appraisal was also carried out independently by three different PhD Psychology students, with different expertise in lived experience and research methods. The methodologies within the studies were informed by a wide range of philosophical approaches that contributed to this synthesis. The research questions and aims of the studies differed slightly and so their synthesis may not represent each individual study’s findings cohesively, but instead, the review identifies common themes across all. These are informed through a range of perspectives and philosophical underpinnings that supports the robustness of the synthesis. The framework has also been reviewed by researchers in other settings who suggest its value and application in mental health settings more generally, evidencing its versatility and wide-reaching impact.

Limitations of the review

It is acknowledged the review groups together different populations such as experts by experience, lived experience researchers, peer workers and mental health professionals with lived experience and treats them as a homogenous group. There are differences across these groups and subtle nuances that the synthesis may not have identified. However, through identifying the relationships between these groups, the review develops a broader synthesis and framework that is informed by each role and their commonalities that has explanatory power to help us better understand the identities of lived experience researchers and providers more generally. This may counter the ‘Them and Us’ divisions that often exist between these groups and others, by identifying their similarities. The review also did not explore the grey literature, or literature on ethnicity, LGBT, and gender identity and this may have cast further insight into identity formation, but this was not a focus of the review. Most studies within this review failed to discuss the lack of diversity within lived experience researcher and provider roles. Only one paper [ 25 ] addresses this issue explicitly, but this study’s sample size was mostly white, meaning it is difficult to draw meaning from such conclusions. The reviewed studies highlight how the field is limited to lived experience researchers and providers who can communicate their experiences and manage their emotions with competence and professionalism. This excludes those with severe mental or physical disabilities and those with learning disabilities. The carer voice and their work as experts by experience or providers is also largely missing from the studies included within this review, only, Hill et al. [ 56 ] included carers within their study. A proportion of the studies within the review are complex and academic in nature and may be difficult for lay people to understand, suggesting that the people who can benefit from the research may not due to lack of accessibility. This meant that the review team were mindful of those who would benefit from reading the review and were motivated in communicating this in an accessible way. It is also acknowledged the field of lived experience work is referred to in a diverse set of ways nationally and internationally and so the search strategy may not have captured all research in the area. There is also a lack of literature exploring the effects of lived experience researchers and provider roles on identity, evidenced through only thirteen papers in this review, and so there is a recommendation for adding to the evidence base.

This review elucidates the identities of lived experience researchers and providers in mental health, education, and research and gives greater clarity to these identities that are sometimes not understood by themselves or the people they work with. The EMERGES framework can be used as a reflective tool to better understand those is these roles and support effective team working. The review highlights how lived experience researcher and provider roles are performed by individuals with certain characteristics such as those who are professional, articulate and those who can separate and integrate, when appropriate, their lived experiences. However, people who do not have these characteristics, or people from ethnic minority backgrounds, in addition to those with severe and enduring chronic mental, physical and learning disabilities, are often excluded from these roles. Furthermore, it is evident that carer involvement in these roles is also underrepresented. This clearly limits the identities of those in these roles. Through the integration of more underserved communities in lived experience roles can lead to a depth of experience that can be drawn upon, leading to growth and transformation in the sector. However, the integration of lived experience within these contexts is limited, due to stigma and discrimination. This limits self-disclosure and health-seeking behaviours which may be due to the professionalisation of these roles. Therefore, those working with lived experience researchers and providers need to be aware of their support needs which can be guided by the practical application of the EMERGES framework. There is also a need to integrate lived experience to be authentic and also a motivation to promote social justice in the mental health system. Through the process of sharing lived experiences supports others to listen and learn from them and supports greater empathy of one’s own distress and that of others.

Through the process of performing these roles and through moving through the stages of the EMERGES framework leads to identity development. In some cases, the stigma of mental illness, or disability permanently marks the identity of lived experience researchers and providers, affecting their prospects and the lens through which they are viewed. However, the general trend among the literature highlights how lived experience researcher and provider roles moves them beyond the service user identity. This consequently transforms those with stigmatised identities to enabling and empowered identities, facilitating recovery.

Availability data and materials

All data generated or analysed during this study are included in this published article [and its supplementary information files]. The preliminary synthesis, detailed quality appraisal of each researcher and table of original sources into a framework can be found on open access dataset found here: https://osf.io/xnt2p/ . A pre-print of the systematic review can be found here: Gupta V, Golding L, Eames C, Greenhill B, Qi R, Allan S, Bryant A, Fisher P 2022 https://psyarxiv.com/gjh2c/

Abbreviations

Healthcare professions council

British psychological society

Group of trainers in clinical psychology

Royal college of psychiatrists

National institute of health research

National survivor user network

Survivor researcher network

Shaping our lives

Sample, phenomenon of interest, design, evaluative, research type

Joanna Briggs institute

Peer support worker

Department of health

Empowerment and enablers, motivation, empathy of the self and others, recovery model and medical model, growth and transformation, exclusion, survivor roots

Connectedness, hope, identity, meaning, empowerment

Personal identity and strength, receiving support, opportunities and possibilities, strategies for coping, perspective shift, emotional experience and relationships

Lesbian, gay, bisexual, transgender

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Acknowledgements

Thank you to Dr Rose Thompson and Tanya Mackay at McPin foundation for peer reviewing. For the purpose of Open Access, the author has applied a Creative Commons Attribution (CC-BY) licence to any Author Accepted Manuscript arising from this submission.

The systematic review was funded through a University of Liverpool PhD studentship.

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Veenu Gupta, Laura Golding, Beth Greenhill, Robert Qi, Alison Bryant & Peter Fisher

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VG is first author and is responsible for conception, design, conduct, analysis and write up. Thank you to PF who is Principal investigator and for multiple rounds of revisions, LG, BG, CE for reviewing and feedback as a research team, SA, RQ for independent quality appraisal, AB for reflective piece who are each second co-authors. All authors read and approved the final manuscript.

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Preliminary synthesis and data extraction table.

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Gupta, V., Eames, C., Golding, L. et al. Understanding the identity of lived experience researchers and providers: a conceptual framework and systematic narrative review. Res Involv Engagem 9 , 26 (2023). https://doi.org/10.1186/s40900-023-00439-0

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Capturing Lived Experience: Methodological Considerations for
Second, methodological considerations, drawn from this phenomenological basis, will be explicated and illustrated through a research study of pediatric intensive care unit (PICU) nurses' lived experience of a major hospital transformation project in Canada—thus offering guidance on how to align qualitative research methods and process with ...
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Qualitative research across many disciplines focuses on co-construction of meaning with participants and to varying degrees can aim to redistribute power (Karnieli-Miller et al., 2009).Engaging people with lived experience as partners in projects is also becoming increasingly common in quantitative research, including biomedical and health services research (Kaida et al., 2019; Saini et al ...
Lived experience
Lived experience. In qualitative phenomenological research, lived experience refers to the first-hand involvement or direct experiences and choices of a given person, and the knowledge that they gain from it, as opposed to the knowledge a given person gains from second-hand or mediated source. [1][2] It is a category of qualitative research ...
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Introduction. Lived experience research in mental health incorporates the perspectives of people who live with mental health issues (1, 2).The integration of lived experience perspectives into the research process, from discovery to translation, has a long history, with seminal work in the mental health and clinical research fields emerging over four decades ago [e.g., (3-8)].
Lived experience research as a resource for recovery: a mixed methods
The research suggests the potential usefulness of lived experience research resources, presented in user-friendly formats, in the lives of people who experience mental health issues and implies a need to nurture this type of research. Keywords: Lived experience research, Service user research, Knowledge translation, Mental health recovery, Hope.
Phenomenology: Researching the Lived Experience
Amankwaa L. (2016). Creating protocols for trustworthiness in qualitative research. Journal of Cultural Diversity, 23(3), 121-127. PubMed. Google Scholar. Ashworth P. (1996). ... Sadala M. L. A., Adorno R. d. C. F. (2002). Phenomenology as a method to investigate the experience lived: A perspective from Husserl and Merleau Ponty's thought ...
Promoting Rigorous Research by Examining Lived Experiences: A Review of
In particular, lived experience designs seek to answer how, what, and why questions to develop meaning or theory from the context and the people who lived the phenomenon. We review four lived experience traditions: phenomenology, consensual qualitative research, narrative inquiry, and case study.
Exploring what the Notion of 'Lived Experience' Offers for Social
The peculiarities of Anglo-centric usage of the broader term 'experience' are explored, before we identify and discuss several roots from which understandings of 'lived experience' as a concept and a research strategy have grown: namely, phenomenology, feminist writing and ethnography.
Lived experience
Search for: 'lived experience' in Oxford Reference ». 1. Personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people. It may also refer to knowledge of people gained from direct face-to-face interaction rather than through a technological ...
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Qualitative research is designed to explore the human elements of a given topic, while specific qualitative methods examine how individuals see and experienc ... Lived experience, as it is explored and understood in qualitative research, is a representation and understanding of a researcher or research subject's human experiences, choices, and ...
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Background This paper reports the construction and use of a specific method for qualitative medical research: The Inductive Process to Analyze the Structure of lived Experience (IPSE), an inductive and phenomenological approach designed to gain the closest access possible to the patients' experience and to produce concrete recommendations for improving care. This paper describes this ...
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Introduction. As a research methodology, phenomenology is uniquely positioned to help health professions education (HPE) scholars learn from the experiences of others. Phenomenology is a form of qualitative research that focuses on the study of an individual's lived experiences within the world. Although it is a powerful approach for inquiry ...
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Integrating Lived Expertise into Equity-Centered Research. The equity-centered research framework developed by RTI International's Transformative Research Unit for Equity (TRUE) explains why people with lived expertise should play a central role in all stages of the research process. Early in an investigation, experts with lived experience can partner with researchers to identify areas of ...
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Abstract. The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being ...
Navigating the Terrain of Lived Experience: The Value of Lifeworld
In qualitative research we are often presented with a tension between having open and fluid interviews to support staying true to the lived experiences of participants and achieving a level of abstraction from the data in order to uncover the essential structures and meanings of that particular lived experience.
Lived Experience: Defined and Critiqued
Lived experience is simultaneously denigrated by those who regard it as merely subjective and exalted by those who regard it as epistemically authoritative. A return to Dilthey's original formulation reveals that both of these attitudes are predicated on misunderstandings of the nature of lived experience.
Lived Experience
Lived experience refers to an individual's personal and subjective encounters, including emotions, perceptions, preferences, and goals, that shape their inner world at a specific point in time. It represents a distinct domain of understanding that influences how individuals interpret and respond to various social and biological factors.
Lived experience research as a resource for recovery: a mixed methods
Background Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants' experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience ...
What is the Scope and Contribution of Lived Experience in Social Work
We included empirical studies that were qualitative, quantitative, or mixed method; we excluded studies that discussed lived experience in social work as an idea or ideal but did not engage empirical research that demonstrated how lived experience actually influenced social work. To be included, studies needed to be published between 1 January ...
(PDF) Experience and Meaning in Qualitative Research: A Conceptual
The relevance of experience and meaning in qualitative research is mostly accepted and is common ground for qualitative studies. However, there is an increasing trend towards trivializing the use ...
Capturing Lived Experience: Methodological Considerations for
The interpretive phenomenological concepts of Dasein, lived experience, existentialia, authenticity are at the core of the discussion while relevant methodological concerns include research paradigm, researcher's stance, objective and research question, sampling and recruitment, data collection, and data analysis.
Understanding the identity of lived experience researchers and
Background Identity is how we understand ourselves and others through the roles or social groups we occupy. This review focuses on lived experience researchers and providers and the impact of these roles on identity. Lived experience researchers and providers use their lived experience of mental or physical disability either as experts by experience, researchers, peer workers, or mental health ...
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What Evaluators Mean When They Talk About 'Lived Experience' - Community Science. Since the summer of 2020, the use of hashtags to signal the support of communities impacted by structural racism is no longer the limit that organizations will go.
Filipino Teachers' Revelations in Working Abroad
This study explored the reasons and lived experiences of 20 Filipino teacher respondents in the school year 2023-2024. The qualitative method through phenomenological research was adopted.
Planning Qualitative Research: Design and Decision Making for New
A phenomenological approach to qualitative research focuses on the essence of a lived experience, or phenomenon, that can be observed or felt by people who have different viewpoints (Flood, 2010). The main aim of phenomenology is to capture, as closely as possible, the way a phenomenon was lived by people who participated in the phenomenon ...

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A specific method for qualitative medical research: the IPSE (Inductive Process to analyze the Structure of lived Experience) approach

Conclusions

The need for a new qualitative method conceptualized by physicians

IPSE: theoretical backgrounds

The two cornerstones of IPSE

Stage 1: setting up a research group

Stage 2: ensuring the originality of the study

Stage 3: recruitment and sampling, aiming for exemplarity

Stage 4: data collection, access to experience

Stage 5: data analysis, from the structure of the experience to its translation into concrete proposals

Individual procedure - descriptive phase

Group process-the structuring phase and then the practical phase

The structuring phase

Practical phase

Rigor and methodological quality of IPSE

Patient involvement and feedback of the “subjects of experience”

Triangulation

Attention to negative cases

The question of the choices of the central axes of experience

Researchers’ subjectivity and reflexivity

Transferability

The language of the analysis

PRO development

PRO development in the field of child and adolescent psychiatry

Clinical recommendations

Assessment and diagnosis

Therapeutic implications

Improving patients’ lives

Improving families’ lives

Recommendations addressing the care pathway

Patient-physician communication

Improving communication, reducing confusion

Medical pedagogy

Revealing training needs

New insights for medical pedagogy

Availability of data and materials

Abbreviations

Acknowledgements

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Conclusions

What is phenomenology?

Transcendental phenomenology

Hermeneutic phenomenology

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The Value of Lived Expertise in Addressing Global Research Challenges

Integrating Lived Expertise into Equity-Centered Research

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