Abstract
Service users with severe mental health conditions living in residential care homes or inpatient mental health rehabilitation units suffer from complex and long-term symptoms and disabilities. In order to develop effective novel interventions for this group, it is crucial to involve all stakeholders from the outset, focusing on acceptability and feasibility, adopting principles of co-production. Given the wish to implement recovery-oriented care, and the importance of identity for recovery, one would assume that life stories have an established place in the treatment of this group of service users. However, we observed that a focus on life stories was generally lacking, and stated the intention to improve practice. The aim of current manuscript is (1) to describe our experiences with co-producing a life story intervention and research proposal for people with severe mental health conditions living in inpatient mental health rehabilitation units and residential care homes; (2) to describe the designed intervention (A Shared Story) and the research proposal for the pilot study. By using the Circling Around Your Research methodology (CAYR), we strived for genuine co-production and countering power inequality. CAYR is a working methodology supporting researchers in developing a practice-based research proposal in co-production with stakeholders. We describe the development by co-production of the intervention A Shared Story and a research proposal for a pilot study, and reflect on our experiences. The primary aim of A Shared Story is to contribute to personal recovery by accompanying service users in reflecting on their life story. Our experiences with co-production using the CAYR method are unanimously positive. Our advice for project groups considering working with this or a similar methodology concern the necessity for exercises helping to create trust and equality, the importance of process arrangements on role distribution and on resolving disagreements, and the need for critical reflection on representation.
Keywords
Background
About 20–25% of the persons suffering from a severe mental health condition, especially of those with symptoms of psychosis, develop complex and long-term problems seriously affecting their functioning (Killaspy et al., 2013; Menezes et al., 2006; Molstrom et al., 2022; Morgan et al., 2014; Power, 2017; Siskind et al., 2022). They have treatment-resistant symptoms (Siskind et al., 2022), cognitive impairments (Velligan et al., 1997), and often comorbid mental and/or physical health conditions (Killaspy, 2019; Scott & Happell, 2011). The majority of these persons is diagnosed with a schizophrenia spectrum disorder. Terms used to describe this group are ‘people with complex psychosis’ (Killaspy et al., 2021; National Institute for Health and Care Excellence, 2020) or ‘people with severe and persistent mental illness’ (Zumstein & Riese, 2020).
Depending on the social, economic and care systems in a country, these persons are living in varying circumstances. In The Netherlands, the psychiatric care landscape has changed dramatically over the last half past century. Different movements and developments have contributed to this change, including the rise of the client and recovery movement, increased welfare, development of new psychopharmaceuticals and new psychotherapeutical or psychosocial interventions, and changes in funding (Muusse et al., 2025). All these developments contributed to a broad deinstitutionalization movement (Taylor Salisbury et al., 2017), changing the psychiatric care landscape from a largely intramural psychiatry to the Dutch mental health system of today: comprehensive ambulatory mental health services, including outreaching assertive community treatment, and extensive supported housing programs (Muusse et al., 2025)
In spite of this broad deinstitutionalization movement, a small subgroup of patients with severe mental health conditions and complex care needs, named ‘complex psychosis’ or ‘severe and persistent mental illness’ in medical terms, needing 24h care, remains (Killaspy et al., 2016).
In The Netherlands, many of them live in inpatient mental health rehabilitation units (also called ‘long-term inpatient services’) or in supported accommodation staffed 24h per day. Supported accommodation in The Netherlands consists of different types of accommodation, broadly corresponding to the three main types of accommodation that have been described in the UK (Priebe et al., 2009): (a) residential care homes, providing communal facilities such as meals, medication and cleaning, staffed 24h per day, in which placement is not time limited; (b) supported housing in shared or individual apartments, staffed between 8-24h per day, with a focus on rehabilitation and moving on to more independent living; (c) floating outreach services providing support to people living in individual tenancies, staff visiting at least weekly.
In current manuscript, we focus on the persons with severe mental health conditions living in residential care homes or in inpatient mental health rehabilitation units, a group of service users with severe and long-term symptoms and disabilities. This group and the care they receive in The Netherlands has been described in more detail by Burger et al. (2025).
Despite their high levels of need, this group is often overlooked in mental health policy internationally, is underrepresented in research, and there is an urgent need for research into effective interventions (de Koning et al., 2021; Killaspy et al., 2021). Intervention design and intervention research for this kind of services, however, are notoriously complex. The risk is to develop an intervention that proves to be effective in service users willing to participate in an intervention study, but which later appears not to be acceptable to the majority of the service users. Or the intervention appears not to be implementable in real-word clinical practice, because availability of highly skilled mental healthcare professionals (MHCPs) is scarce in residential care homes and inpatient mental health rehabilitation units. Furthermore, diverging perspectives on reality, and on what is needed, often exist between persons with complex psychosis and MHCPs (Amador & David, 2004; Fusar-Poli et al., 2022). Therefore, in order to develop effective novel interventions, it is crucial to involve all stakeholders from the outset, and to focus on feasibility in real-world clinical practice, and on accessibility and acceptability, adopting the principles of co-design and co-production. Co-production is an approach to a research collaboration in which researchers, practitioners, service users/consumers/patients, and sometimes families, work together, sharing power and responsibility from the start to the end of the project (NIHR, 2021). Co-design follows the same principles but focuses on design of interventions or care programs, although the terms may be used interchangeably (Jakobsson et al., 2023). Henceforth, we use the term co-production for both processes.
Co-Producing Research in the Field of Complex Psychosis
Although co-production is rising in mental health research, people with severe mental health conditions, like psychosis, seem to be under-represented in co-produced research (Jakobsson et al., 2023). Jakobsson et al. gave a scoping review on barriers and facilitators of co-design and/or co-production in psychosis research (Jakobsson et al., 2023). Key barriers were insufficient perceived safety by service users in the research team, power inequality, and perceived stigma. Methods to overcome these barriers included: (1) recognising and naming power inequality and actively taking measures to encourage equal collaboration, e.g. by appointing someone at meetings who always actively invites service users to express their views; (2) creating a safe and informal environment at meetings; (3) choosing working formats that rely less on digital skills, e.g. collecting ideas by post-it notes.
To overcome abovementioned pitfalls and facilitate a genuine co-producing process aimed at improving clinical practice for service users in residential care homes and inpatient mental health units, we decided to use a working methodology that has been specifically designed to address these pitfalls: Circling Around Your Research (CAYR) (see further in the methods section).
CAYR supports researchers in developing a practice-based research proposal in co-production with stakeholders, by structuring the process in ten well-defined steps, in which assembling of relevant stakeholders and (re)defining the practice issue at hand are the first steps.
Recovery Oriented Care and Life Stories in Residential Care Homes and Inpatient Mental Health Rehabilitation Units
In The Netherlands, inpatient mental health rehabilitation units and residential care homes increasingly implement recovery-oriented care, which prioritizes support of the process of personal recovery, defined by Anthony (1993) as a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles, and as a way of living a satisfying, hopeful and contributing life, even within the limitations caused by illness (Anthony, 1993). Developments in the area of identity are one central aspect of personal recovery, which have been conceptualized as rebuilding or redefining a positive sense of identity and overcoming stigma (Leamy et al., 2011). A conceptualization of identity that aligns to the recovery process is that of identity as a narrative: “a person’s internalized and evolving story of how he or she has become the person he or she is becoming” (McAdams, 2019; McAdams & McLean, 2013).
Given the wish to implement recovery-oriented care, and the importance of identity for recovery, one would assume that life stories and personal narratives have an established place in the treatment of patients in residential care homes and inpatient mental health rehabilitation units. However, our research group observed the opposite. Our research group consists of a collaboration between a large mental healthcare institution, a university medical centre, the Dutch association for and by people susceptible to psychosis and the Dutch association for relatives of people susceptible to psychosis. The researchers work for the mental healthcare institution (MBdK, TJB, AV, MK), except for professor LdH who mainly works in the university medical centre. All researchers except one full-time researcher (MK, a psychologist) also work in clinical practice as psychiatrists, all with people with severe mental health conditions, either in acute or long-term clinical settings or in outreaching outpatient teams. The representatives of the Dutch association for and by people susceptible to psychosis and the Dutch association for relatives of people susceptible to psychosis are not affiliated to the mental healthcare institution or the university medical centre, but our collaboration has existed for several years.
Based on personal experiences (from all perspectives: research, clinical practice, service user and family perspective), and on conversations with other researchers, MHCPs, service users and families, we observed that existing life story interventions do not fit the context of residential care homes and inpatient mental health rehabilitation units, and that life stories are not getting the attention they deserve in these contexts.
In 2020, we started out from the following practice issue, and we stated the intention to improve practice:
Reconstructing the life story may contribute to recovery by strengthening self-esteem and regaining of identity in service users with severe mental health conditions. In addition, letting MHCPs and relatives assist service users in reconstructing this story might improve collaboration between service user, relatives and MHCPs (the ‘triad’). However, in the day-to-day practice of care for service users with severe mental health conditions living in residential care homes or inpatient mental health rehabilitation units, the service user’s life story plays a very limited role in the collaboration between client, relatives and MHCPs.
Our aim was to design by co-production: a life story intervention tailored to service users with severe mental health conditions living in residential care homes or inpatient mental health rehabilitation units, and a research proposal for a pilot study.
By using the elaborated CAYR methodology, in which all participants have shared responsibility and authority for the design process, incorporating the knowledge of all participants, we strived for genuine co-production and countering power inequality.
The aim of current manuscript is twofold: (1) To reflect on our experiences with co-production using the CAYR method, which encompassed the design of a life story intervention for people with severe mental health conditions living in inpatient mental health rehabilitation units or residential care homes and a research proposal for a pilot study to test it; (2) To describe the designed intervention (A Shared Story) and the research proposal for the pilot study. The conduction of the pilot study and its results are beyond the scope of current manuscript and will be described elsewhere.
Methods
Circling Around Your Research Methodology
CAYR is a working methodology that supports researchers in developing a practice-based research proposal in co-production with stakeholders in practice, developed by Andriessen et al. (2024) (a detailed description in English can be found at https://www.husite.nl/crjo-en/).
Practice-based research aims to maximize its impact in practice. One of the most important factors in creating impact in practice is active involvement of stakeholders in the research process by creating ‘productive interactions’ (Spaapen & van Drooge, 2011). In impactful research these ‘productive interactions’ take place in all phases of the research process, meaning the initiative phase (development of the research proposal), the operational phase (conducting the research) and the finalizing phase (formulating recommendations, delivering results and dissemination of the findings of the research) (Munaretto et al., 2022). The objective of the CAYR methodology is to support researchers in creating ‘productive interactions’ in the initiative phase of a research project. The CAYR methodology is based on responsive research where stakeholders in practice participate as partners and dialogue is central. In responsive research, decision-making power is shared between stakeholders and researchers. The main responsibility of the researcher is not to delegate power to participants, but to enhance the quality of the dialogical process between different types of stakeholders and researchers. In responsive research, dialogue is seen as a mutual learning process between researchers and a variety of stakeholders (Abma et al., 2011; Abma & Widdershoven, 2006).
Summary of the Ten Steps in the CAYR Methodology
Legend: Steps 2, 4, 7, 9 consist of four three-hour workshops, guided by external process facilitators, in which the whole project group participated. The other steps were taken by the researchers within our group.
Data Collection During the Process
During the four workshops, one of the two external process facilitators took notes. After each workshop, the two researchers from the project group wrote a summary of the steps/decisions taken (with help of the notes from the external process facilitator), which was supplemented and commented by the other participants.
In the other steps, the researchers wrote a summary or an intermediate product that they shared with the whole project group, who sometimes gave comments by email, and sometimes verbally in the next workshop.
In the last step, all participants evaluated the process by answering five questions about their experiences. Furthermore, the project leader and the representatives of the service user and family perspective summarized their experiences upon request of the funding organization.
All these notes, documents and emails have been used as data to describe the process in current manuscript.
As described above, the conduction of the pilot study with the designed intervention is beyond the scope of current manuscript and will be described elsewhere.
Covid 19 Restrictions
The whole process was gone through during the Covid 19 pandemic. Due to restrictions, all workshops and additional meetings took place in online meetings. The external process facilitators chose work forms that were feasible online, and paid much attention to getting acquainted, trust, and informal exchange. Although the online character may have influenced the process, we will not elaborate on this aspect.
Results
The CAYR Process
Step 1: Partnership Preparation
The purpose of the first step is to collect a group of stakeholders that can represent all perspectives that are relevant for the issue or question at hand. We constituted a project group with seven people, representing four relevant stakeholder perspectives. The chair of the Dutch association for and by people susceptible to psychosis represented the service user perspective (CvA). She is susceptible to psychosis and lives in a residential care home. A member of the scientific committee of the Dutch association for relatives of people susceptible to psychosis represented the family perspective (name not mentioned upon the member’s request). The MHCP perspective was represented by: RA, psychiatrist and medical manager of four inpatient mental health rehabilitation units; MvT, a nurse practitioner in an outpatient outreaching team for people with severe mental health conditions; FvE, policy adviser in an organisation for supported accommodation for people with severe mental health conditions (see acknowledgements for affiliation of FvE); and MBdK, psychiatrist and researcher in the same service as RA. The research perspective was represented by MBdK and by MK, psychologist and researcher in the field of severe mental health conditions. The two researchers were also the project manager (MBdK) and assistant project manager (MK).
In addition to the project group, we installed an advisory group, also representing the four perspectives, consisting of CM, chair of the clients’ council of a large mental healthcare institution (see acknowledgements for affiliation of CM); KG, member of the scientific committee of the Dutch association for relatives of people susceptible to psychosis and mother of a son susceptible to psychosis; TJB and AV, both psychiatrists for people with severe mental health conditions and researchers; and LdH, psychiatrist and professor in psychotic disorders.
Of all these people, some already knew each other from previous collaboration (MBdK, MK, CvA, TJB, AV, LdH). Others were invited by MBdK to join the project or advisory group, explaining the identified practice issue and the CAYR methodology. All the invitees agreed and mentioned the importance of the subject.
We decided that the project group would go through the ten CAYR steps, and would present the progress and ask for feedback from the advisory group three times, before workshop B, C and D. In this way, we ensured feedback from all perspectives from a greater distance, from people not being involved in the direct collaboration, for better reflection.
DA, MG (both social scientists) and MW (health scientist), all three involved in the development of the CAYR methodology, would be the external process facilitators guiding the four workshops (two of them for each workshop).
Step 2: Exploring the Practice Issue (Workshop A)
The purpose of step two is to gather the different perspectives on the practice issue and together develop a common understanding of the problem.
Process
During this 3 hour workshop the first part was aimed at getting acquainted and the second part at jointly looking at the practice issue from multiple perspectives. To illustrate this process we describe two of the several exercises.
Getting acquainted (exercise following ‘contemplative dialogue’ principles): All participants were asked to prepare a short text about a moment in their life when they shared an important event from their life story with someone else, what the sharing did do to them, and why it was important. In the workshop all participants read their texts to each other. Afterwards all participants got 10 minutes to choose one element of all the texts that had touched them emotionally, and to write down why it touched them. They shared these contemplations, after which they held a brainstorm about what themes, chances and problems these contemplations taught them about sharing life stories.
(Re)formulating the practice issue: Participants were asked to generate as many ‘solutions’ as they could think of for the practice issue at hand, because thinking in solutions is often easier for people than clearly defining a problem. Departing from these ‘solutions’, the participants reasoned back to defining the problems that were solved by these solutions, or the themes that were addressed. Problems and themes relevant for the practice issue at hand were clustered. Then, all participants wrote down a concrete formulation of the practice issue, and shared these (work form from Van der Velde et al. (Van der Velde et al., 2023)).
Results
After workshop A, the researchers (MBdK and MK) merged the seven concrete formulations of the practice issue into one overarching formulation:
Exploring clients' life stories does not happen frequently enough in residential care homes and inpatient mental health rehabilitation units for service users with severe mental health conditions. This is a missed opportunity, as it could have several positive effects.
The exchange of ideas in the workshop taught us that the sharing of their life story by service users might serve different objectives. The next five objectives were identified: 1. Therapeutic objective for service users, contributing to personal recovery: reflecting on their life story can strengthen the identity of service users, and can be related to reflections on expectations, relations with significant others, life goals, sense making, and hope. 2. Therapeutic relationship: sharing of their life story with their MHCP demands attention, interest and time from the MHCP, which might strengthen the therapeutic relationship and might lead to a sense of feeling acknowledged and seen as a person by their MHCP. 3. Relationships within the triad: if relatives are involved in the process of writing down the life story, all relationships within the triad might be strengthened. 4. Understanding the service user: having a clearer picture of the life story of a service user can lead to a better understanding of the actual situation and needs by the MHCP. 5. Practical objective: in long-term care, patient files are often incomplete or it is difficult to find the right information. A neat life story document in the file, approved by the service user, could really help MHCPs to quickly understand more of the context of the service user. Especially when MHCPs are frequently changing, this can be important for the service user.
Each objective could lead to a different type of intervention. Participants had different ideas about the importance of these different objectives. We decided that we would prioritise these objectives in the next workshop.
Furthermore, we identified topics on which different perspectives existed within the project group, and for which decisions had to be made in the following workshops: - If a service user decides he does not want to share his story with others, could he still work with the intervention on his own? (varying from ‘yes of course’ to ‘but in that case, the therapeutical relationship cannot benefit from it’ to ‘but how to facilitate that in practice?’). - If a service user has a different perspective on reality than his relatives or the MHCP, how to let different versions co-exist? (opinions varying from ‘by trying to find common ground’ to ‘by writing down both versions’ to ‘by accepting the service user’s reality’). - Methodology of the intervention: should it be verbal? Should it lead to a tangible product? (opinions varying from imagining a book as end product to a wide range of creative possibilities to the opinion that it does not necessarily have to be tangible) - Where to store the ‘product’? (opinions varying from ‘in the medical file’ to ‘wherever the service user wants’) - Which disciplines of MHCPs should be involved in the intervention? (varying from ‘a psychologist because of their experience with trauma-informed care’ to ‘anyone the service user trusts, whoever that is’).
Step 3: Defining the knowledge gap and consultation of advisory group
The purpose of step three is to do a preliminary literature review to identify theoretical insights that might be relevant for the practice issue, and to define the knowledge gap.
Process
MBdK and MK performed a search until 16-3-2021 in Pubmed, Embase and PsycInfo with the following terms: [psychosis/schizophrenia/severe mental illness/serious mental illness] and [narrative/life story/biograph*/autobiograph*]. Furthermore, we read books on narrative therapy and searched for grey literature on working with life stories in different care settings.
Results: Summary
Why the Life Story Might be Important in the Treatment of and Care for People with Severe Mental Health Conditions
Several authors stress the importance of the life story in the treatment of people with severe mental health conditions in opinion-based literature. Roe and Davidson (2005) describe the limitations that exist in many patients with schizophrenia in creating a coherent narrative about one’s own life, and link this to a loss of identity (Roe & Davidson, 2005). Authors advocate that improvements in creating a narrative are not a ‘by-product’ or ‘by-catch’ during recovery processes, but the core of it. Reconstructing identity, regaining ‘agency’ and becoming the ‘author’ of your own life story again, is at the heart of personal recovery, according to authors. They stress the importance of patient ownership in this process. Thomas and Longden argue that in treatment of psychiatric disorders, ‘technical thinking’ often plays a major role (Thomas & Longden, 2013). By this they mean: a disorder is a disturbed mechanism, it has causes, and it can be treated with a method (e.g. medication or psychotherapy), and the effect can be measured. They stress that this ignores the importance of human relationships, values and narrative in recovery from mental illness. They stress that acknowledging and naming injustice and trauma in the life of the person suffering is at the heart of a (treatment) relationship. They argue for a reappraisal of narrative.
In his book “On the road. A trialogical biography” (translated from Dutch title), Petry stresses the importance of collaboration in the triad, and the joint reconstruction of the life story, to destigmatize and empower patients with severe mental health conditions (Petry, 2005).
Qualitative research support this line of thinking. In a meta-synthesis of seventeen peer reviewed qualitative studies into experiences of severely mentally ill persons by Kaite et al., third order analysis identified as core theme ‘An ongoing struggle for reconciliation with the self and the illness’ (Kaite et al., 2015). Another identified theme was ‘loss of identity’. Ogden (2014) interviewed six older adults who experienced ongoing symptoms of schizophrenia, and developed life history narratives. She concludes that, although only two of the participants had ‘clinical insight’ into their mental illness, they all had ‘narrative insight’, meaning they had developed personal stories about their lives with their vulnerability. She discusses the significance of a shared narrative profile (Ogden, 2014). Rosen et al. analysed the content of extended life stories. This showed a correlation between onset and content of symptoms of psychosis and trauma. Cultural, social and political context also had a role in the content of psychosis. They emphasised the importance of life story and ‘trauma-informed care’ in the treatment relationship (Rosen et al., 2017).
The impact of symptoms and disabilities in patients with severe mental health conditions on their ability to reconstruct their life story
In many patients with severe mental health conditions, especially in patients with a psychotic disorder, there are limitations/challenges in (re)constructing the life story. Cognitive symptoms negatively influence autobiographical memory (Berna et al., 2015; Zhang et al., 2019) and causal and thematic coherence (Allé et al., 2015).
Existing Life Stories Interventions
Many psychosocial and psychotherapeutical interventions for working with the life story exist, for different target groups. Examples are: ‘Reminiscence’ for elderly people with depressive symptoms in nursing homes, focusing on recalling positive memories, carried out by trained volunteers; ‘Life review therapy’ for older adults with depressive symptoms in general practice, carried out by nurses or social workers; and psychotherapies in the narrower sense: narrative therapy and narrative exposure therapy (Hendriks et al., 2019; Jongedijk, 2014; Lely et al., 2019; Mies, 2006).
Application of these Interventions in Persons with Severe Mental Health Conditions
The aforementioned psychosocial life story interventions do not seem to have been investigated in persons with severe mental health conditions. As for psychotherapies, Mauritz et al. investigated the applicability of narrative exposure therapy in persons with severe mental health conditions and post-traumatic stress disorder (PTSD) in outpatient treatment. PTSD symptoms and other symptoms decreased; functioning increased; quality of life and perceived needs did not change (Mauritz et al., 2021).
Two other forms of psychotherapy, using narrative elements, specifically for persons with severe mental health conditions, are Narrative Enhancement and Cognitive therapy (NECT) (Hansson et al., 2017) and Metacognitive Reflection and Insight Therapy (MERIT) (de Jong et al., 2019; Lysaker et al., 2020). NECT is a structured group psychotherapy focusing on reducing self-stigma. MERIT is an individual psychotherapy aiming at improving metacognitive abilities. Both therapies use the life story but it is not the main focus.
For persons with severe mental health conditions for whom psychotherapy in the narrower sense is not suitable, the ‘Recovery Narrative Photovoice intervention’ has been developed. Photovoice is originally a qualitative research method, but has been further developed for therapeutical purposes. It focuses on visualisation and on small stories. Findings of a pilot study in two groups of 8 participants with severe mental health conditions, supported feasibility and acceptability (Mizock et al., 2015). As far as we know, the method has not been investigated in an individual treatment setting.
Conclusion
The described psychotherapies are only suitable for persons who are able to participate in structured sessions of a given duration for a longer period of time and who have the necessary verbal abilities. Furthermore, some of them are group therapies, necessitating the ability to participate in a structured group activity. Experiences from the MHCPs and representatives of the service user and family perspective in the project group are that these prerequisites are not met for the majority of our target group. Therefore, no life story intervention was found in the literature that is feasible for persons with severe mental health conditions living in residential care homes or inpatient mental health rehabilitation units.
Consultation of Advisory Group
We wrote a summary of the results of workshop A and of the literature search for the project group and the advisory group and discussed these with them. They stressed the importance of choosing between the possible goals of the intervention and of aligning the design of the intervention with the main goal. They also noticed the absence of families/relatives in the literature on life story interventions (except in Petry’s book (Petry, 2005)), and advised to integrate collaboration with families in the design. Finally, they concluded that although no suitable intervention/method was found for our target group in the literature, the findings were providing direction for the design of the intervention.
Step 4: Exploring Research Objectives (Workshop B)
The aim of step 4 is to explore possible research objectives and decide on a focus of the research.
Process
We started by prioritizing the five possible objectives of the (to be developed) intervention which were identified in workshop A. Prioritizing of the five objectives was based on the individual ranking by each participant.
Thereafter we formulated research objectives. A specific feature of the CAYR method is that it distinguishes between multiple possible research goals. According to CAYR, and in line with Morrow et al., research does not only lead to new knowledge but can potentially also induce positive change in an organization, serve as a tool for learning and be used as a design process (Morrow et al., 2017). Therefore CAYR divides research objectives in four sub-objectives: increasing knowledge, professionalization, designing and changing practice (Andriessen & Greven, 2019). With verbal and non-verbal (e.g. choosing pictures) working methods, all participants chose their most important research objectives.
Results
Concerning the desired objective for the intervention, the ‘therapeutic objective for service users’ was considered the most important objective, relating to ownership, authoring of your own story and agency. Thus, this became the main intervention objective. Five of seven project group members gave this objective the highest ranking, except for the representative of the family perspective, who prioritized ‘collaboration in the triad’, and one of the MHCPs, who prioritized ‘understanding the service user’. All agreed on the final choice.
As for the objectives of the to be developed study, participants agreed on the following objectives:
During the discussions in workshop B, the project group noticed that we had no agreed-upon process in case of a disagreement that we could not resolve. That did not happen in workshop B, but the question was raised. It was an important question, relating to power. We planned an extra meeting to discuss this. In that meeting, the project group decided that in case of lasting disagreement, the researchers should take the decision to the best of their knowledge. All participants expressed their confidence in the researchers to take this role if necessary.
Step 5: Arriving at Research Questions and Sub-Products and Consultation of Advisory Group
The purpose of step 5 is to use the information gathered in the previous steps to develop preliminary research questions and a preliminary research design.
Given the results of workshop B, the researchers made a provisional study design including (1) a design study for designing the intervention, (2) a pilot study to assess feasibility, and (3) a qualitative evaluation. This was presented in an additional meeting to the project group and the advisory group.
Members from both project group and advisory group were convinced that participants would be able to design a first version of the intervention in the current co-production process, and they saw it as a loss of time and investment if the design process would only start later. They emphasized the work that had already been done. This led to the joint decision to design a first version of the intervention before the next workshop, and to focus the study design on a pilot study and a qualitative evaluation.
Based on the earlier defined objectives and the wish for inclusivity, the project group and advisory group decided on the following framework and requirements that the intervention had to meet: - Availability: The intervention should be available for all service users with severe mental health conditions living in an inpatient mental health rehabilitation unit or a residential care home. This includes not wanting to use criteria for in- or exclusion, including psychiatric diagnoses. - Flexibility: The intervention should be stepped, in order to make it suitable also for service users with the most severe disabilities. It should be flexible, low-threshold, with different possible levels of complexity. - Tangibility and Ownership: The intervention should yield a tangible product, owned by the service user. We made the choice for a printed book(let). The service user decides with whom he shares the product. Only if the service user will explicitly ask for it, the book will be included in their medical file. - Embeddedness in daily life: Service users in these settings have the most frequent contact with their first nurse or social worker, working in 24h schedule. They also have a treating psychiatrist and some of them also a treating psychologist, but they see them less often. Availability of psychiatrists and psychologists in long-term care is often scarce. Therefore, to design an intervention that is accessible for all service users, flexible, and implementable in daily practice, the intervention must be carried out by nurses and social workers. This is also necessary to create awareness about the importance of life stories in the 24h staff.
For the pilot study and qualitative evaluation we formulated the following main research questions:
- Is a life story intervention feasible and implementable in inpatient mental health rehabilitation units and residential care homes for people with severe mental health conditions?
- Is it feasible to involve families/significant others in the intervention?
- How do service users, families and MHCPs experience the intervention? Do they experience added value? Do they experience it as feasible and meaningful?
Step 6: Drafting the Provisional Research Proposal and the Provisional Intervention Design
The researchers made a first version of both the intervention design and research proposal, to be discussed in workshop C (the final versions are summarized below in sections Design of the Intervention and Design of the Study: Pilot Study and Qualitative Evaluation). For the intervention design, they asked for input from RW, an experienced health care psychologist working mainly with adoptees and people with identity questions, using narrative therapy.
Step 7: Discussing the Provisional Research Design and the Provisional Intervention Design (Workshop C)
The purpose of step 7 is to agree upon a research proposal, and in our case also an intervention design, for the study.
Process
The provisional intervention design and the provisional research proposal were shared on forehand with the project group, and briefly summarized by the researchers. Thereafter, for both intervention design and research proposal, all participants noted what they liked and disliked and what raised questions.
For the research proposal, they also reflected on the prerequisites and whether the design fitted the predetermined objectives. Feedback was discussed in subgroups with one of the researchers and one of the external process facilitators in each subgroup.
Results
Intervention design: participants were overall enthusiastic about the provisional design. They liked the modular design (making it flexible), the focus on identity and on positive and negative experiences, and the tangible, concrete and practical product. They also liked the choice for nurses and social workers as the executors of the intervention. They had questions about the depth: did the modular design and the practical approach leave enough space for sense making? Do nurses and social workers have enough psychological knowledge to carry out this intervention and how much training is necessary and feasible? They warned of the risk that the intervention would turn out to be a biographical history without focus on meaningfulness. They also wondered what would happen if service users would lose their book, if the book is not stored in the medical file.
Finally, they decided to ask for broader feedback on the provisional intervention from their organization/colleagues before workshop D.
Research proposal: participants were overall enthusiastic about the choice for a pilot study and a qualitative evaluation. They stressed the need for a timely choice of the clinical or accommodated housing departments where the pilot study would take place. They advised to inform multiple teams/departments and to select those teams that received the idea with enthusiasm. They emphasized the need for ambassadors at each department/team. They were worried about the time and costs of training the MHCPs, because the intervention should be implementable also outside a study context. Therefore, training had to be short, and the manual suitable to work with after a short training.
Step 8: Drafting the Final Intervention Design and Research Proposal and Consultation of Advisory Group
The purpose of step 8 in CAYR is to finalize both the research design and the intervention design so that participants can decide on the role they want to take in the execution of the study.
The two researchers adjusted the intervention design and research proposal according to the feedback in workshop C. For example, in the intervention design they focused more on meaning and less on facts, and they simplified the manual. In the research proposal, the role of ambassadors at each participating department was worked out.
One inpatient mental health rehabilitation unit and one residential care home were selected from the organizations where project group members worked, to perform the pilot study, based on staff’s enthusiasm and capabilities. CvA asked for adding her own residential care home (from another organization) as a third location to the pilot study, as she was very enthusiastic herself and had motivated the team manager of the location. All participants agreed.
Project group and advisory group members gave written feedback before workshop D. The healthcare professionals and client and family representatives in the project group also asked feedback from their organization/colleagues.
Step 9: Organizing Future Collaboration for Research Execution (Workshop D)
The purpose of step 9 of CAYR is to determine the role of each participant in the execution of the study.
Process
The workshop consisted of different elements. The researchers presented the decisions that still had to be taken and asked for suggestions. All participants gave their final feedback on the methodology of the research proposal. Furthermore, they all reflected on their (possible) role in the execution phase of the study and shared their thoughts on other people/roles that were needed. Finally, they evaluated the CAYR process.
Results
Participants reflected on who should be the trainers of the MHCPs in the study, and who could guide the peer supervision. We decided that psychologist RW would give the training together with CvA (service user perspective) and KG (family perspective) and one of the researchers (MBdK or MK). We also decided that guided peer supervision would be given by RW, CvA and KG.
Another important point was whether or not to involve the treating clinician from the mental healthcare organization for those service users living in residential care homes, where they will undertake the intervention with their social worker. Opinions differed in the project group. Healthcare professionals from mental healthcare organizations stressed the possible positive impact on quality of care if the clinicians also take note of the life story. Patient and family representatives however, stressed the importance of autonomy for the service user. We decided that clinicians from the mental healthcare organizations the residential care homes work with, would receive a letter with general information about the intervention and the study. In that way, they could ask their patients if they participated in the intervention. The other way round, service users could obviously always tell their clinicians about their participation, tell them about it or show them their book.
All participants were motivated to play a role in the execution phase of the study, ranging from trainer to researcher to facilitating implementation. The need of timely involvement of managers and directors of the facilities involved was stressed.
For the evaluation of the CAYR process, see section Experiences of Project Group Participants.
Step 10: Finalizing and Submitting the Research Proposal
The purpose of this final step is to bring all information together in one comprehensive research proposal.
The two researchers finalized the intervention design and the research proposal, incorporating the last feedback, given in step 8. Examples of adaptations in the intervention were: giving concrete examples of how to involve relatives, and simplifying the manual (advices from consulted MHCPs), focus on flexibility in themes to discuss and in the end product, and more focus on connection with others in the themes (advices from consulted members of the association for relatives of people susceptible to psychosis).
See sections Design of the Intervention and Design of the Study: Pilot Study and Qualitative Evaluation for a summary of the intervention and the study design. The research proposal for the pilot study (with quantitative and qualitative evaluation) has subsequently been funded. The pilot study is currently underway.
Design of the Intervention
A Shared Story is an intervention suitable for all people living in inpatient mental health rehabilitation units or residential care homes. The primary aim is to contribute to personal recovery by accompanying service users in reflecting on their life story. This may strengthen identity, and can be related to reflections on expectations, relations with significant others, life goals, sense making, and hope. Secondary aims are strengthening the relationship with their primary MHCP and with relatives or significant others.
The intervention is delivered by the primary nurse or social worker of the service user, who is in contact with the service user on a daily basis, working in 24h schedule (henceforth referred to as ‘MHCP’).
The following basic principles are key: - The end product is tangible. The manual mainly describes a printed book (let) as end product, but also gives suggestions for other forms (a collage, a film). - The service user owns the end product. The service user decides with whom he wants to share it. - The book will not be included in the medical file, unless the service user explicitly asks for it. - The service user decides about the content of the book and what themes will be included. - The service user decides about the involvement of relatives (if, when and how).
Procedures (described in more detail in the manual): - The MHCP discusses with the service user the option to write something about his story together, in words and/or pictures, and asks if the service user would like to try this. - The MHCP asks if the service user would like to have these conversations together with a significant other. This can be done in many ways. The relative can be present every time or just a few times. Relatives can also provide photos or, when the (visual) story is finished, be invited to discuss the result. - If the service user wants a significant other to be present at (some of) the conversations, they invite the relative and explain the project. - The service user and the MHCP decide together on how to work on the story (e.g. in regular appointments, during other activities, by going for a walk, mainly by talking or mainly by searching for pictures). - The manual suggests a content of five themes for the conversations and gives examples of questions that can be asked in each theme. The five themes are: ○ The life story ○ Talents and vulnerabilities ○ Norms and values ○ Connection with others ○ Experiences of loss - Each theme can be explored at different levels of abstraction. The life story, for example, can consist of mere facts, but the MHCP and the service user can also discuss the consequences or impact of these events and finally how these events shaped him or how it affected the way the service user sees himself. Ath the end, they can draw conclusions about the life course or use it to vocalize the service user’s self-image, for example in terms of personality traits, characteristics, talents, weaknesses, relations with others, etc. For each theme, the manual provides examples of questions at these three levels of abstraction. It is up to the service user and the MHCP to decide how they elaborate on a theme. - The themes are merely a suggestion. The order can be adjusted, themes can be deleted, and a totally different chapter layout is also possible. - At the end of each conversation on A Shared Story, the service user and MHCP decide together what to write down. They also decide together how to store these temporary notes, e.g. in a notebook that stays in the service user’s room, or digitally by the MHCP. - When the conversations have been finished, the service user and MHCP decide about the end product the service user wants to make, and how much help is needed. This may vary from a service user designing his own book to a MHCP doing all the writing based on the conversations (but of course checking continuously if the service user agrees with the wording). - The book (or other product) is printed professionally.
Design of the Study: Pilot Study and Qualitative Evaluation
For the pilot study and qualitative evaluation we formulated the following research questions:
- Is A Shared Story feasible and implementable in inpatient mental health rehabilitation units and residential care homes for people with severe mental health conditions?
- Is it feasible to involve families/significant others in A Shared Story?
- How do service users, families and MHCPs experience A Shared Story? Do they experience added value? Do they experience it as feasible and meaningful?
The pilot study will take place at three locations where people with severe mental health conditions live with 24h care: one inpatient mental health rehabilitation unit, and two residential care homes. The study will consist of six phases:
A first round of semi-structured interviews will take place with the service users, relatives and MHCPs working with A Shared Story, to collect their experiences. The intervention, the manual and the training will be adjusted if necessary, based on the analysis of the first round of interviews. At the end of phase 1, the manual and the training program will be finalized for phase 2.
Outcome Measures Feasibility Study
- How many MHCPs are working in each of the three locations? How many of them were trained? How many of them worked with A Shared Story with one or more service users? How many of them did participate in the guided peer supervision sessions? - How many service users are living in each of the three locations? How many of them participated in A Shared Story? What were reasons to participate or not to participate, according to the MHCPs? How many service users did stop prematurely with A Shared Story? What were the reasons, according to the MHCPs? How many service users did make a tangible end product? - In how many service users, relatives were invited to join the conversation about A Shared Story? If no relatives were invited, what were the reasons for this, according to the MHCPs? How many relatives did join?
Topics to be addressed in the semi-structured interviews (with service users, relatives and MHCPs):
- How do they experience A Shared Story? - How did they like participating? What did they like/dislike? - Was it feasible? (elaborate) - Did they experience it as meaningful? (elaborate) - Did they experience added value? (elaborate)
The interviews will be analyzed using reflexive thematic analysis (Braun & Clarke).
Patient participation
Participation by service users and relatives will be ensured at four levels:
CvA and KG will be full members of the project group, will give the training together with the clinical psychologist and will be present at the guided peer supervision.
All interviews will be held by a team of one researcher and one expert by experience from the service user or family perspective. They will be recruited via Anoiksis, the Dutch association for and by people susceptible to psychosis, and via MIND Ypsilon, the Dutch association for relatives of people susceptible to psychosis.
Experiences of Project Group Participants
All project group members described their experiences by answering the following questions:
Which moment from the process has stayed with you the most?
Five out of seven participants described the moment in workshop A when all participants shared a moment from their own life story. They saw that moment as important for building connection and trust. One described the work forms as helping and creating equality. One described the quality of the substantive discussion in workshop D.
What are you Proud of?
Five out of seven participants named an aspect of the multi-perspective collaboration: ‘motivation and openness of all participants’, ‘that my opinion really mattered’, ‘that all participants were always there and on time’, ‘our ability to put ourselves in another person's shoes’, ‘the fluid connection of multiple perspectives’. Two participants described the result: ‘that we have been able to make an idea concrete’, ‘maintaining focus and the joint result’.
What did you Like or Find Important?
Four out of seven participants (again) described the interpersonal aspect of the collaboration: ‘the mutual trust’, ‘that everyone was addressed and felt co-responsible’, ‘the mutual respect’, ‘the equality and openness’. One named the meaning of the process: ‘that I am in a club that matters’, one focused on the result ‘that with time and attention we have created something beautiful’, and one on the process facilitators: ‘the facilitation by the process counsellors’.
What has been the Most Difficult?
Six participants gave an answer that related to a struggle with concretisation. The two researchers were the most explicit about this: ‘struggling with the research question’, ‘summarising and determining direction between the workshops’; the other four explained it more globally: ‘to become concrete’, ‘continuing to distinguish means and ends’, ‘getting from what to how’, ‘enduring the time span until it became concrete’. The last participant focused on the service user perspective: ‘always returning to service user’s interest’.
Name someone who played an important role for you in phase 1. What influence did this person have on you?
Many participants named more than one person. The experts by experience (CvA and the representative of the family perspective) were named five times, because of their focus on service user’s and family’s perspective, their own understanding of what they can contribute and their showing what is at stake.
The researchers (MBdK and MK) were named four times, because of their calmness and trust, their grip and overview of the whole and their openness about their own struggles.
Furthermore, the project leader and the representatives of the service user and family perspective summarized their experiences upon request of the funding organization.
CvA, expert by experience – patient perspective
In the workshops and advisory group meetings, everyone had an equal role. From my position as an expert by experience, I mainly provided input on what was valuable, desirable and feasible for the service users, and what I had reservations about. In doing so, I emphasised safety and autonomy for the service users. I think it is a very good starting point to involve service users at the very beginning of formulating a research question/research proposal, because then you connect to what is really needed, and to what can really work in practice. This way, you avoid research that ends up in a drawer, and you avoid teething problems in your research. Workshop D was rescheduled because, as an expert by experience, I was unexpectedly hospitalised, and I took that as proof that the input of the expert by experience was seen as indispensable (and rightly so).
Expert by Experience – Family Perspective
I was involved, fully equal to the other participants in this process, and was able to have my input to the research proposal. There was always respect for each other's input which was complementary to each other. […] I was able to consult the entire Ypsilon science committee as a constituency consultation. I personally think that the process can be completed faster. That also means that, as a participant, you […] don't have to delve into the trajectory again, per workshop. The actual desired pace is of course up to the researchers, who do the actual work and also have “homework” between workshops.
MBdK, Researcher and Psychiatrist, Project Manager
I found it enriching and inspiring to work with this group with multiple perspectives. I think it substantially influenced the design of the intervention and the study, especially the focus on autonomy for the service users. Sometimes I found it difficult to see my role clearly. We spent a lot of time on research purpose and questions, and I sometimes got anxious about the timeframe, because the whole study design had yet to be written. I wanted to be an equal project group member, but also felt ultimately responsible for getting the research proposal finished on time and of sufficient methodological quality.
Discussion
We described our experiences with co-production using the CAYR methodology, aimed at the design of a life story intervention, and research proposal for a pilot study, for people with severe mental health conditions living in inpatient mental health rehabilitation units or residential care homes.
At the start, the aim of the CAYR process was to design a research proposal by co-production. However, the project group and advisory group decided together (during step 5) that the intervention itself would also be designed during the current co-production process, given the knowledge gained and direction set in step 1-5. This decision was atypical for the CAYR methodology, which focuses entirely on the design of a research proposal. Although the intervention design part of our CAYR process was atypical, in our discussion we will focus on the co-producing process all along the way, without distinguishing between the design of the intervention and the design of the research proposal.
Collaboration and Boundary Crossing
Overall, all project group participants were positive about the CAYR process, emphasizing several aspects concerning the collaboration, mainly trust, respect, equality and openness (see section Experiences of Project Group Participants). We all felt that the external process facilitators, and the exercises focusing on these aspects of collaboration, were vital to this success. Although all participants had some previous experience with co-production in a project group with multiple perspectives, they had never experienced a co-production process that was so equal and in which all knowledge contributed to this extent. In the literature on transdisciplinary science, the concept of ‘boundary crossing competences’ is described, explaining that when confronted with boundaries between disciplines/perspectives, most people do not utilise these boundaries to learn or co-create but rather avoid tensions without crossing them (Fortuin et al., 2024). Fortuin et al. describe how boundary crossing competences can be learned by experiential learning. We hypothesize that the exercises in the CAYR process did exactly that, by creating productive interactions (Fortuin et al., 2024).
Task Distribution concerning Exploring and Research Proposal
Comparing this design process with non-participatory design of research proposals, the researchers conclude that the focus on the ‘why’, and the objective took a long time, and that the focus on design/methodology occurred quite late in the process (step 6). Furthermore, the project group members who were not researchers had a lot of input and comments concerning the intervention design and the objectives of the pilot study, and much less concerning study design and methodology. For the project manager (see section Experiences of Project Group Participants), this led to being anxious about the timeframe and feeling a huge responsibility as researcher for the proposal being finished in time and being of sufficient methodological quality. We conclude that the CAYR methodology is highly useful to explore a practice issue and research objectives, and to concretise wishes and ideas into clear aims, research questions and global study design. In our experience, these steps often do not get enough attention in non-participatory research design. However, it is important to realize that elaborating the aims, questions and global design into a comprehensive research proposal is still a lot of work, requiring expert knowledge of researchers. In our process, we did not pay enough attention to this, leading to a high time pressure for the researchers in the last steps, and also to a change in role distribution, in which the researchers came much more in the lead. In our project group, this did not compromise the collaboration, but for the researchers it felt somewhat awkward. We advise other project groups to be explicit about this possible development from the beginning.
The same holds for making process arrangements in case a lasting disagreement arises that cannot be resolved in the project group. It is an important question, relating to power and to possible power inequalities. We had an extra meeting between workshop B and C to discuss this possibility, although such a disagreement was not going on. The project group decided that in such a situation the researchers would have to decide. In our group process, it felt important that this proposal came from the non-researchers in the project group. We advise to explicitly pay attention to this kind of process arrangements.
Were we the Right Stakeholders?
Although we paid a lot of attention to the collection of a group of stakeholders representing all relevant voices (for project group and advisory group), in hindsight we identify two pitfalls.
First of all, we wonder if service users with severe disabilities were well enough represented.
CvA is the chair of the Dutch association for and by people susceptible to psychosis, and she consulted the members several times during the process. Furthermore, she lives in a residential care home herself and also consulted her co-residents. However, the problem of the underrepresentation of the people with the most severe disabilities remains: they are also underrepresented among the members of the association. Therefore, the process of intervention design may have been suboptimal concerning the principles of user-centered design. The pilot study will hopefully correct for this flaw.
Second, we had no social worker or nurse in our project group being part of the 24h staff of a residential care home or inpatient mental health rehabilitation unit. The mean reason for this was that at the start we had no idea which discipline would be involved in carrying out the intervention. However, when this decision was taken (step 5), we might have reconsidered the composition of the stakeholder group. Feedback from these MHCPs will therefore be crucial during the pilot study.
Were we too United?
As a result of the above two points, we raise the question if we may have been insufficiently polyphonic, too unanimous and too united. We succeeded well in establishing mutual trust and respect and were able to solve all disagreements by dialogue, leading to successful co-ownership and co-production. However, opinions did never really clash. This might be attributed to trust, respect and dialogue, but in hindsight we also wonder if the project group members may have been too similar, despite of their differing perspectives/roles: they were all white, highly educated, and strongly motivated for this project. Although we had an advisory group that commented on our intermediate products from a greater distance, they may also have been too ‘close’, and too similar to the project group.
Conclusion
Our experiences with co-production using the CAYR method are unanimously positive. We succeeded in co-producing a life story intervention and research proposal for a pilot study, for people with severe mental health conditions living in inpatient mental health rehabilitation units or residential care homes.
We have the following advices for project groups considering working with this or a similar methodology: (1) Reserve space for exercises helping to create trust, equality and openness, and stimulating boundary crossing competences; (2) Discuss from the beginning that the elaboration of the aims, questions and global study design into a comprehensive research proposal requires expert knowledge of researchers, and that role distribution therefore may change in the last steps, although the principles of CAYR will remain; (3) Pay attention to process arrangements in case a lasting disagreement arises that cannot be resolved in the project group; (4) Ask yourself critical questions about the representation of service users and MHCPs: are the right people invited? (5) In connection with the foregoing: beware of collecting a group of stakeholders that is too similar or too unanimous.
Footnotes
Acknowledgements
We thank Chris Maagd (chair of the clients’ council of Arkin) and Fleur van Eeden (policy adviser at Cordaan, organisation for supported accommodation for people with severe mental illness) for their valuable contributions to the design of the intervention and the research proposal.
Authors’ Contributions
MBdK, CvA, RA, TJB, AV, LdH and MK contributed to the conception of the project. MBdK, CvA, KG, RA, MvT, TJB, AV, LdH and MK contributed to the participatory design of the intervention and of the research proposal. RW contributed to the design of the intervention. DA, MW and MG developed the Circling Around Your Research Methodology and were the external process facilitators in the participatory design. MBdK, AvD and MK were major contributors in writing the first draft of the manuscript. All authors revised the manuscript and all authors read and approved the final manuscript.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: DA, MW and MG were funded by ZonMw for the development of the Circling Around Your Research Methodology (50009395). MBdK, CvA, KG, RA, MvT and MK were funded by ZonMw for the co-production of the intervention and the research proposal for the pilot study (639003925). AvD was funded by ZonMw for the execution of the pilot study and contributing to this manuscript (6390039251).
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.