Exploring the potential use of patient and public involvement to strengthen Indonesian mental health care for people with psychosis: A qualitative exploration of the views of service users and carers

Abstract Background Patient and public involvement (PPI) has the potential to strengthen mental health systems in Indonesia and improve care for people living with psychosis. Current evidence from other parts of the world demonstrates the need to understand the contexts in which PPI is to be enacted to ensure optimal implementation. Objective To understand service users’ and carers’ views on the current use and potential applicability of PPI within Indonesian mental health services. Design Qualitative study incorporating focus groups analysed using thematic analysis. Setting and participants Participants included 22 service users and 21 carers recruited from two study sites in Indonesia (Jakarta and Bogor). All participants had experience of psychosis either as a service user or carer. Results Despite the value attributed to PPI in relation to improving services and promoting recovery, current use of such activities in Indonesian mental health services was limited. Participants expressed a desire for greater levels of involvement and more holistic care but felt community organizations were best placed to deliver this because PPI was considered more congruent with the ethos of third‐sector organizations. Additional barriers to PPI included stigma and low levels of mental health literacy in both health services and communities. Discussion and conclusion Participants felt that there was potential value in the use of PPI within Indonesian mental health services with careful consideration of individual contexts. Future aspirations of involvement enactment should ensure a central design and delivery role for third‐sector organizations. Facilitators to global collaborative research in the context of the current study are also discussed.


| BACKG ROU N D
Patient and Public Involvement (PPI) in a mental health context is an umbrella term that encompasses a range of activities including service user movements to influence politics and change health services, knowledge generated by people living with a mental health diagnosis and the involvement of patients in the design and delivery of care. [1][2][3][4] Such approaches derive from a position that traditionally research and clinical decision making has been limited to the realm of intellectual and health institutions and the people that work in them to the detriment of other forms of knowledge. 5 Advocates of this position assert that this has led to health services which at one end of the spectrum are not providing services that adequately meet individual need 6,7 and at the other are openly discriminating against the people they treat. 8 For example, the service user movement in the UK 'refers to the work of individuals who advocate for their personal and collective rights within the context of discrimination faced as a result of having experienced mental health difficulties and/or being diagnosed as having a mental illness'. 3 There is a growing body of evidence for the benefits of involving service users and carers in the design and delivery of mental health services at both a systems and individual level. PPI has been shown to change services for the better 9 through enhanced performance, 10,11 increased accountability 12 and enhanced person-centred care. 13,14 At an individual level, reductions in symptom severity, positive impacts on personal recovery, individual rights, mental health literacy, confidence, hope and empowerment are all associated with increased involvement in mental health services. 14,15 Such evidence has contributed to an increased emphasis on participatory approaches in mental health services internationally 16 and these principles becoming legal standards for medical care in some parts of the world. 17,18 Despite the ubiquity of involvement rhetoric within policy and practice ideologies across the world, current evidence suggests implementation remains far from optimal and service user and carer isolation and dissatisfaction persist. 10,[19][20][21][22][23][24] In a recent commentary, it was argued that true collaboration between people with mental health diagnoses and researchers, policy makers and health professionals cannot happen in environments which continue to perpetuate hierarchies and power imbalances albeit in a less transparent form. 25 Often such imbalances are sustained by macro-level factors such as the legacy of prior mental health policy and historical practice, legal frameworks and organizational cultures often not targeted or considered by PPI interventions. 20,26 Such findings have led to calls for critical examinations of such entrenched power imbalances and contexts for implementation and for PPI interventions to address these contextual factors to enable true collaboration to be realized in practice. Additional barriers include limited opportunities for involvement, 10 diverse definitions of involvement, inadequate information provision, 21 mental health stigma 27 and existing practices and cultures within health services. 10 Such implementation challenges are underexplored within low-and middle-income countries (LMICs) despite the potential applicability of such approaches to improve mental health care 11,28 and the likelihood of unique challenges to meaningful implementation in these contexts. 19 For example, the Bali Declaration (2018) written by people with psychosocial disabilities and cross disability supporters from 21 countries in the Asia-Pacific region confirmed the relevance of inclusion to change services whilst concomitantly reaffirming the systematic and pervasive violation of people's human rights in these countries by mental health services. 29 In Indonesia, as in other LMICs, PPI is an emerging concept, which has not been widely adopted or explored. 19 A recent Human Rights Watch investigation into the treatment of people with psychosis revealed significant human rights violations in Indonesia, including arbitrary and prolonged hospital detention, involuntary treatment and tens of thousands of people being illegally chained up ('pasung') in unsanitary conditions, both in the community and in hospital settings. 30 Such violations persist despite improvement to mental health care in Indonesia since the provision of basic community mental health care, 31 improvements to human rights generally following the establishment of the National Commission on Human Rights in 1993 and recent changes to international covenants and domestic law which now provide an adequate legal framework for human rights protections. 32 Mental health is now a national priority in Indonesia, and clinicians are starting to develop community-based mental health services to support people living with psychosis. This emerging service infrastructure combined with a sustained commitment towards improving the reach and efficiency of mental health services presents a unique opportunity for PPI to shape and strengthen these emerging systems and ensure that they are designed around the needs and preferences of the people they aim to serve or to introduce alternative forms of service provision (eg third-sector organizations). 33 A recent systematic review drew attention to the fact that the emphasis of existing evidence is on clinical practice and professional views and identified a need for in-depth qualitative research with patients to understanding the meaning of mental health care for those that use services in order for effective interventions to be developed and implemented. 34 This study therefore aimed to understand service | 379 SUSANTI eT Al.
users' and carers' views on the current use and potential applicability of patient and public involvement activities within Indonesian mental health services.

| Background to the collaboration
The proposal for the study was generated at a research capacity building and priority setting event in Indonesia in August 2016 funded by the British Council. A further visit to Indonesia to develop the proposal with local collaborators was funded by the ESRC Impact Acceleration Account through the University of Manchester in November 2016. Two PPI consultation events were conducted during this trip with people with psychosis and their carers to inform the study design.

| ME THODS
A qualitative study was undertaken utilizing focus group interviews. The choice of data collection method was informed by the study PPI advisory group. The PPI advisory group consisted of 12 people who either had lived experience of psychosis or cared for someone with a diagnosis of psychosis recruited through a partner non-governmental organization (NGO). The advisory group was established at the initiation of the wider project 33 and consulted on all project components. The manuscript has been prepared using the Consolidated Guidelines for the Reporting of Qualitative Data. 35 The study formed part of a larger development award exploring the potential of involving patients, carers and communities to strengthen mental health systems in Indonesia. 33 This fourphase mixed-method study aimed to develop a culturally appropriate PPI framework for use in Jakarta and Bogor, Indonesia, to strengthen local mental health systems. Phase 1 comprised of a systematic review to explore the involvement of patients, carers and communities in mental health services across South-East Asia. 36 Phase 2 surveyed all mental health professionals in Jakarta and Bogor to identify the important people, sources of collaboration and evidence currently used in decision making within local health services and to explore potential opportunities for involvement within the mental health system. Phase 3 explored the potential application of service user and carer involvement in mental health services from the perspectives of service users, carers, professionals and national key stakeholders using qualitative methodology. Finally, phase 4 used evidence from phases 1-3 to inform co-production workshops to agree priorities for a framework for use in Indonesia. The resultant framework will be used to apply for further funding to evaluate its clinical and cost-effectiveness in Indonesia. This manuscript reports on the qualitative focus group discussions with patients and carers only. A film with more information on the study can be found here: https ://www.youtu be.com/watch ?v=aYdX0 FPvtO Y&t=2s

| Participants and recruitment
To be eligible for inclusion in the study, participants had to either have lived experience of psychosis or have experience of caring for someone with psychosis. Additionally, they had to be aged 18 or over and have the capacity to consent to take part in a focus group discussions.
Participants were invited to take part through the voluntary and community groups they attended (see below for further information). Advertisements were displayed in community group venues for a two-week period. Interested parties contacted a member of the research team to express interest in the study and have any questions they had about the study answered. When sufficient levels of interest were obtained, a time and date for the meeting was agreed and potential participants were notified. Participants were provided with an information sheet and consent form in Bahasa Indonesian and given the opportunity to ask again questions prior to the commencement of focus groups. All participants gave written, informed consent prior to the group starting.
A convenience sample of 43 participants consented to take part in focus groups in three community organizations (two in Jakarta and one in Bogor). Study sites were selected in relation to differing geographical, economic and urban-rural contexts, and variety in the standard and development of mental health systems. 33 Attempts were made to include a range of participants from both rural and urban areas. Table 1 provides more information on included study participants. More details on host community organizations can be found below: • FG1 -Jakarta: a non-government organization whose activities focussed on delivering information and advocacy to patients and carers about the rights of mental health consumers.
Participants had significant experience of mental health activism, involvement in health services and involvement in community organizations.
• FG2 -Jakarta: participants were in receipt of services in an urban area but had much more limited experiences of mental health activism. Participants were involved in some community organizations.
• FG3 -Bogor: participants lived in a remote area where access to mental health services was much more challenging and experience of involvement in health services was minimal. Participants were involved in some community organizations.
In line with advice from the study advisory group made up of patients and carers, mixed focus groups (role/gender) were held in each location.

| Data collection
All data were collected by Indonesian researchers supported and supervised remotely and through face-to-face meetings with UK and Indonesian study leads. Focus group discussions were facilitated by HS (a mental health nurse academic) in collaboration with BO (a carer-researcher) and BK (a mental health nurse academic). An additional observer was present to support the digital audio-recording but did not participate in the group discussions.

| Data analysis
Transcripts were analysed using inductive thematic analysis which involves six phases of coding and theme development. 38 The process of analysis was underpinned by social constructionism which recognizes the complexities of individual experience and the importance of the wider context and focuses on understanding the semantic meaning attributed to people's experiences. 39 Transcripts were first read a number of times to ensure immersion in the data. HS, HB and KJ then independently coded all three

| RE SULTS
Three themes were interpreted from the data which were consid-

| The relevance and salience of patient and public involvement in Indonesian mental health services
Of the three groups, the NGO for people with schizophrenia and  Most service users and carers, however, felt that involvement in these activities was relatively superficial with limited opportunities to express ideas and decide on preferred actions.

| PPI in third-sector organizations
Whilst few participants were satisfied with current levels of involvement in formal health services, participants were very positive about their involvement in community organizations and the support they received from these groups more generally.  Participants felt that service users, carers and community members may also be hesitant to engage in involvement activities because of the stigma associated with mental illness. There was a perception that in order to facilitate engagement from patients and carers, involvement activities should be offered to people which were distanced from their locality to avoid identifying them as someone with mental illness within their own community.

| Perceived benefits and negative consequences of PPI
In order to combat some of these barriers, participants emphasized the importance of offering a range of involvement activities so individual engagement could fit with personal circumstances.
Community organizations were considered best placed to offer such activities.

| Professional capacity to implement PPI
Participants felt that professionals in formal health services may not be able to enact PPI because of a perceived lack of relevance to their roles, fear it would exacerbate workload, poor communication skills and a clinical focus generally on medication. Paternalism within health services was also considered likely to further inhibit PPI.
C4: One service user told us that the nurses just gave her medicine, maybe it happened because they have limited time and energy.
Female, 61 years, mother (Focus group 1/ in support group) C5: We feel that health workers are often too confident and feel too much that they know everything. This means their attention to us is minimal because they already feel their service is good enough… with the services provided daily. The patients will not going to ask nurses for a chat because they are afraid

| Lack of organizational readiness to implement PPI
Participants felt that conditions in formal health services were not optimal for PPI. Reasons for this included poor co-ordination between services and complicated bureaucracy relating to involving service users and carers within services. Nationally, participants described inadequate distribution of financial and personnel resources, the pervasiveness of stigma towards mental illness and the low po- consider the use of individual interviews with service users and carers to explore some of the issues identified in the current manuscript in more depth.
The focus group discussions and qualitative analysis were enhanced through the inclusion of a carer-researcher who co-facilitated focus groups and contributed to the analysis of transcripts.
Emergent codes and thematic frameworks were presented to an advisory group of patients and carers whose comments informed the development of final themes and ensured the analysis was grounded in the lived experience of mental health services in Indonesia. All data were collected and analysed by Indonesian researchers with UK collaborators providing qualitative supervision and guidance to support the analytical process.
All participants were from the Java region of Indonesia and self-selected themselves for inclusion in the study having all received some form of input from mental health services. Data may therefore not reflect the views of other mental health stakeholders such as those who have not received any form of mental health service or those living in other geographical areas.

| Reflections on global partnership working
This study represents an ongoing global collaboration between Indonesian and UK mental health academics and community organisations. This study built on previous collaborations in the form of capacity building activities and development work, and this study enabled these existing relationships to be strengthened.
These relationships were of paramount importance to the success of the study and enabled the project to overcome a number of challenges including contractual delays and lengthy financial processes which significantly impeded progress. Additionally, natural disasters in Indonesia necessarily delayed data collection requiring flexibility in both approach and management. Additional facilitators to collaborative working were the inclusion of senior academics and health professionals as co-applicants and lead researchers who could drive progress in Indonesia, the delivery of a research methods training course at study outset which was delivered to both Indonesian researchers and PPI contributors and regular supervision by Skype and during study visits.

| CON CLUS ION
Participants felt that there was potential value in the future use of PPI within Indonesian mental health services with careful consideration of individual contexts. Future aspirations of involvement enactment should ensure a central design and delivery role for thirdsector organizations.

CO N FLI C T O F I NTE R E S T
The authors confirm they have no conflicts of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.