‘We’re all in the same boat’: An Interpretative Phenomenological Analysis study of experiences of being an ‘expert’ during patient and public involvement within Child and Adolescent Mental Health Services (CAMHS)

Abstract Background Patient and Public involvement (PPI) has rapidly evolved into a key component in shaping the delivery of health services. However, little is known about what it is like to participate in involvement procedures that include representatives of multiple groups and in the context of developing new interventions for Child and Adolescent Mental Health Services (CAMHS). Objective This study explored participants’ experiences of PPI, following attending a ‘consensus conference’, during which their views were sought in relation to the development of a proposed staff‐based intervention and key questions about its design and implementation. Design Qualitative, semi‐structured interview study. Setting and Participants Six participants, including service users and various frontline clinical staff team members, who had experience of CAMHS were present at the consensus conference and then asked about their experiences of being involved via semi‐structured interviews. The data were analysed using Interpretative Phenomenological Analysis (IPA). Young people, carers and frontline staff have been involved in the design and implementation throughout the broader programme of work of which this study forms part, although these groups were not directly involved in the design and implementation of this paper. Results Three key narratives were present: (a) Previous Experiences Driving Expectations, (b) ‘We are all in the same boat’ and (c) The Realization of Multiple Identities. The results suggest that PPI involvement is a complex process that may be driven by positive/negative expectations, but that individuals value learning about others and recognizing different perspectives while reaching shared goals in improving services. Discussion and Conclusion This study demonstrates the complexity of experience that service users and clinical staff face when engaging in involvement activities in CAMHS. The findings demonstrate the value in engaging multiple stakeholder groups while also highlighting the importance of proper consideration of the procedures involved and facilitators of engagement.


| INTRODUC TI ON
In the UK, patient and public involvement (PPI) has a vital role in shaping and improving the delivery of national health-care services, with a commitment to empower both individuals and communities to play a greater role in bettering health-care services. [1][2][3][4] Organizations such as INVOLVE advocate PPI as central to health-care services research. It is argued that putting people at the heart of decision making and promoting continuous engagement between both the public and decision makers is crucial. 5 This is supported by an ever-growing commitment from funding bodies such as the National Institute for Health Research. 6 Within research contexts, PPI has been defined as 'research being carried out "with" or "by" members of the public rather than "to," "about" or "for" them'. 7 However, the scientific and policy literature regarding PPI and specifically who is involved is ambiguous. Both participation and the concept of the 'expert patient' overlap. 8 By 'public', INVOLVE include potential patients, carers and people from organizations that represent people who use services. INVOLVE's view is that members of the public with lived experience who have worked in health care and/or who gain research knowledge and expertise do not lose their lived experience; people can 'wear multiple hats'. Particularly where they are identified as the 'end users' of an approach or intervention, it might be appropriate to involve frontline clinical professionals as 'experts by experience' in PPI. It is therefore important to engage a diversity of 'experts by experience' that might include frontline clinicians alongside those who use services, where this fits the research and development objectives. 9 Although the term 'PPI' might not be the best fit in this context, focusing as it does on the patient and public, advice is that it is still applicable, until an alternative is developed.
PPI research within health services has an inclined focus on the adult population, especially around adult mental health. 10 -15 It is likely that there are additional complexities when developing PPI in child and adolescent mental health services (CAMHS), due to the developmental, systemic, autonomy and power issues involved. Research has shown an unacceptable variation in the quality of children and young people's mental health provision across the United Kingdom, with many young people not knowing their rights and feeling like they do not have a genuine say in decisions made about their treatment. 16 Given the lived expertise of those experiencing mental health problems have in handling their own lives, 17 building an evidence base for innovative approaches in mental health services should be led as a merger of expertise between experts by experience and the expertise of the 'professional'. 18 Successful PPI engagement can often be impeded by differing ideas of the meaning of 'involvement' held by both professionals and service users. 19 PPI within services tends to remain at the consultation level, with professionals' decisions taking priority. 20 Indeed, research has found that patients report feeling uncomfortable challenging health professionals' opinions and practices, 21,22 with other barriers to shared decision making including lack of time, confidence or skills to fully involve patients as equal partners in care. 23 This may be a particularly prominent barrier in child and adolescent mental health settings, as more often there is a parent/caregiver involved in their care. In addition, it is important to note that unlike adults, children often do not self-refer to services, in turn creating a power imbalance between both adults and young people, highlighting the importance of examining experiences of PPI within different contexts, including factors that may hinder the development of care and participation.
Evidently, PPI is crucial for the outcome of health-care services and there are gaps within the literature when exploring PPI in relation to CAMHS, where there might be additional considerations and complexities. Furthermore, attention has grown in the direction of understanding the key components of PPI and the impact this has on research. There is room to develop a wider understanding of PPI, particularly in CAMHS settings, considering the complexity of social processes in such services, and developing a richer understanding of the processes involved that could help facilitate successful PPI. 24 This paper therefore investigated experts' experiences of being involved in PPI within a CAMHS context, where the experts occupy different background groups; young people, carers and frontline clinicians.

| Aims and research questions
This research aims to explore the experiences of those taking part in public and patient involvement within CAMHS. We aimed to explore: • What it means to be an 'expert' within PPI for all parties involved, including young people, carers and frontline clinicians.

| Broader programme of work
The current study explored participants' experience in the context of their involvement in the development of a new staff-based intervention for CAMHS (https://osf.io/vr47z/). The intervention has been developed due to the paucity of evidence-based forms of support in these area 25 and therefore, the involvement of those with lived experience was crucial to deciding on key elements of the design and implementation. As the intervention is staff-based, those defined as experts by experience included frontline clinicians, alongside young people and their family members. Representatives of these groups (12 in total) were invited to a 'consensus conference', during which their views were sought in relation to the proposed intervention. The consensus conference was held in person at a university location and was facilitated by the research programme lead (SH). This forum provided an opportunity to explore the experience of different groups of 'experts' participating in the same involvement process and thus provide insights into relevant processes and recommendations for similar future exercises.

| Design
This study has implemented an exploratory, qualitative interview design, using IPA to analyse semi-structured interview data gained through a small sample of individuals who are considered as an expert by experience within CAMHS services.

| The selection of participants
IPA focuses on small, homogenous and purposive samples with direct experience of the phenomenon of study. The current study recruited participants who shared an experience of involvement in the same consensus conference, despite their differing backgrounds.
Although there is no 'right' sample size, 26 the typical sample sizes vary from one to fifteen 27 and there are suggestions that research using IPA should wish for an expert sample that is small in numbers. 28 Purposive sampling was used to select participants who were staff (nursing staff, doctors, psychologists), carers and recent service users of CAMHS. The main researcher of the current study (SI) was a bystander during the involvement process.

| Data collection
Participants were interviewed over the 2 weeks following the consensus conference at locations convenient to the participants.
Interviews were conducted mainly by SI (n = 4), and two were conducted by SH due to the availability of the participants. Only the interviewer and participant were present during each interview, and participants were aware of the interviewer's background and their relationship to the project. A semi-structured interview schedule (see Table 1) was developed in consultation with the relevant population groups. Each interview was audio-recorded using an encrypted dictaphone. Audio data were transcribed and anonymized.

| Analysis
Semi-structured interviews offered an opportunity to acquire indepth first-person accounts, 29 facilitating the elicitation of stories, thoughts and feelings. 30 Transcripts were analysed using Interpretative Phenomenological Analysis l31 (IPA), which was suited due to its ability to make sense of individual's experiences in specific contexts. As IPA is an idiographic approach, it allows the researcher to explore the experiences of the participants, creating a rich and detailed understanding of the topic explored 32. IPA involves the researcher uncovering the participant's lifeworld through exploring their personal 'lived experiences'. 30,33 IPA was selected as an appropriate approach in order to explore the 'lived experiences' of participants engaged in public and patient involvement based on their experiences of CAMHS services as opposed to simply an 'experience'.
An emphasis of experience is addressed by IPA in aiming to understand the context and meaningful world of individuals 34 and the importance of the participants conveying how they are experts by experience. 30 In observance with IPA's idiographic obligations, each interview was analysed in-depth on an individual basis. 30 Each recording, listened back to at least twice, and the transcripts read several times.
Initial annotations and phenomenological reduction were made, with exploratory comments describing initial thoughts about the content, language use and more conceptual comments in the wide right-hand margin of the transcripts. 30 Once each individual's experience had been analysed, commonalities and themes across participants were explored through cross-case analysis.
SI led the initial analysis, with supervision from JH. JH, who was independent of the involvement process, helped validate interpretations and themes identified, offering a more 'outsider' perspective.
The results were not specifically member-checked with participants but were fed back to them and comments invited. A summary was also checked for accessibility with representatives of the same groups (clinicians, young people and carers).

| RE SULTS
Three themes central to participants' experiences were developed.
Participants' descriptions acted as windows to their experiences, demonstrating the impact of prior expectations on their experiences, conveying a sense of connectedness with others involved in the PPI process, and the process of PPI engagement acting as a facilitator for the realization that each individual participant had multiple identities. The presence of themes within each participants' account is highlighted in Table 2.

| Theme one: Previous experience driving expectations
The first theme was expressed by several participants, highlighting their understandings of the potential of PPI to change health care based on their past experiences. Such experiences included when their provision of feedback was not acted upon within health-care services previously, meaning that participants were unable to see whether and/or how their involvement had made any difference. Such past experiences consequently informed their attitudes and expectations towards PPI:  Catherine's experience.
Indeed, this was also reflected in the narratives of the health professionals involved in the PPI consultation: (Sally) Sally's discussion highlighted her prior knowledge of having varied perspectives, but also that her participation in the consensus conference 'reaffirmed' her appreciation of this. The group-based involvement in the decision-making process emphasized to Sally the value in such processes to provide a road map for improvements in services from a holistic perspective.
This is also evident with several participants, with the emphasis of belonging and being a part of something bigger, motivating continued involvement and participation: Ann's quote reflects that once a part of PPI, there can be an acknowledgement that everyone's contributions are of value. Putting aside any judgements and perceptions of others, and recognizing that everyone is working towards the same end goal was key to feeding into the improvement of services; everyone was in the same boat.

| Theme three: Realization of multiple identities
The third theme reflected the impact that engaging in PPI engagement had on the development and realization that participants had multiple identities above and beyond that of the 'expert by experience'. This was a process echoed by both professionals and service users. Rose began her interview discussing her professional role and her initial view of others in the PPI process as patients, with her initial perception of her role as a facilitator of the discussion: Catherine's repetition of the PPI engagement with health professionals as 'weird' emphasizes her difficulty in seeing past the professional roles and relationships that she held with those professionals, which may have acted as a barrier to her disclosure of her experiences in PPI settings. Catherine also highlights the tension she experienced as a result of seeing herself as 'just' a service user, implying her concerns that she was alone in that experience and does not have the appropriate knowledge or experience to contribute. Additionally, the standard hierarchy that Catherine had experienced (as a service user working with health professionals) appeared daunting and difficult to overcome. She described the process of shifting from being a passive recipient of health care to an active expert by experience stance as 'scary', depicting the potentially challenging nature of PPI engagement. However, as Catherine settled into the PPI discussion, she found that this fear dissipated: It was quite good, because I could get my opinion out and be like, confident and be who I actually was, rather than just being quiet and sitting there.
Catherine described feeling more settled in the PPI engagement after realizing that the process was collaborative and supportive in nature. As she was responded to helpfully and became more familiar with the process, the realization that she could be 'herself', and as such, owning her identity, as opposed to being 'just' the 'service user' helped to bolster her confidence in sharing her experiences and their impact on her wellbeing.

| D ISCUSS I ON
This study explored participants' experiences of being involved as experts by experience in research and service development, from the perspectives of a variety of individuals within CAMHS. To our knowledge, this is the first study to explore the experiences of multiple types of experts by experience involved in the same involvement process and in a CAMHS context. The value and complexity of involving varied stakeholders is a key national priority 9 and one that offers extensive opportunity for investigation, which the current study contributes to.
From the participants' accounts, three key themes were dis- This also includes the integration of a feedback loop, whereby participants are able to see how their engagement feeds into service delivery, which can further bolster motivation to engage in PPI in future. 36 Moreover, as previous experiences seem drive expectations, opportunities for individuals to explore their experiences and how these might be best supported should be offered outside of individual involvement activities in preparation; and services should consider how the quality of experiences in PPI and service delivery can either mutually support or degrade one another.
Participants discussed the value of meeting others with lived experience of services and echoed a sense of community with a shared purpose, even with multiple and varied perspectives. Participants' accounts indicated that this sense of community bolstered participants in their task-motivated social identity, which validated their experiences.
This mutual support and sense of community is reflected in previous work examining the impact of PPI engagement on service users in (for example) lay researchers, 37 and people with a diagnosis of schizophrenia, 38 demonstrating a commonality across various health contexts.
Such sense of support and community may also contribute towards the enhanced ability to problem-solve in the management of health conditions. 39 Likewise, literature suggests that shared decision making can improve knowledge, involvement, self-confidence, self-care and communication across families. 40,41 The present study supports this, with the addition of reflecting these benefits in different staff groups too.
There might rightly be a reticence in involving multiple stakeholders in involvement exercises; a concern that PPI is best undertaken with specific groups separately.

| Strengths, limitations and Future Research
The current study is strengthened by its incorporation of multiple perspectives commenting on a shared process. The presence of the interviewer/s as an observer/facilitator at the consensus conference enabled consent processes to take place and familiarity to develop, which might have enhanced openness in interviews, although could have also encouraged demand characteristics. The interpretative and single-interview nature of the present study means that the results reflect a single moment in time and do not reflect the developmental processes that might occur during a series of engagement events. Longitudinal interviewing by those independent of the involvement processes would aid the understanding of benefits and challenges experienced and the integration of participant feedback into service delivery. Further, the self-selecting sample may mean that those with more positive experiences may have been more likely to take part in the study. The results, therefore, may not be reflective of those who experienced more challenges within the PPI process, and-importantly-those with expectations that led them to decline involvement. However, the purposive sampling strategy adopted in this study meant that commonalities within experiences were established and demonstrated the value in conducting PPI stakeholder engagement with a diverse group. Further work should explore how collaborative relationships across different stakeholder groups can be bolstered, to enhance participant confidence to continue to engage and to support the development and realization of the multiple potential roles that participants can play in PPI. Explicit evaluation of experience within different models of PPI would support clear recommendations regarding particular procedures that best facilitate the positive impact of involvement for researchers, clinicians and participants. It will be important for any future research to consider how to involve experts by experience not only as participants but as funded project leads and co-investigators; the current study would no doubt have been improved by this.

| CON CLUS IONS
This study demonstrates the various motivations, challenges and benefits experienced across service users, parents and staff members engaged in a CAMHS PPI exercise to contribute to clinical research and enhance service delivery. The findings demonstrate the value to all participants involved in such processes, and to the service concerned, in conducting such stakeholder engagement with a diverse group of perspectives. Jasmine Heath Hearn https://orcid.org/0000-0001-5988-5278