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.

Civic engagement and mental health system strengthening in Indonesia: a qualitative examination of the views of health professionals and national key stakeholders

“…Professionals provided detailed accounts of their understanding of civic engagement which included the active participation of patients, carers and communities in the promotion of mental health as well as the design and delivery of mental health care. In line with other research in South East Asia, conceptionalisations of civic engagement extended to a societal level rather than an individual level more commonly associated with western models of involvement and engagement [32,46]. The strength and consistency of these perceptions was noticeable and is likely to reflect the centrality of the concept in current global health policy rhetoric.…”

“…This study was part of a larger programme of work to explore the potential implementation of civic engagement within Indonesian mental health services [38]. The views of patients and carers are presented elsewhere [32]. A video documenting wider study activities can be found here: https://www.youtube.com/ watch?v=aYdX0FPvtOY…”

“…Implementation theory provides a number of possible explanations for this translational gap including negative organisational influence [31], lack of resources [32,33] and professional resistance to civic engagement [34]. Current evidence suggests that focusing on understanding local contexts and interactional processes may yield better understanding of implementation challenges than relying on macro-level theories which have hitherto be unable to identify generalisable strategies for organisational change [35].…”

“…Rigorous qualitative studies exploring the potential use of civic engagement to strengthen Indonesian mental health from the perspective of health professionals and national stakeholders have not been undertaken. Research undertaken with patients and carers point to the potential utility of such approaches [32]; however, given that the majority of care for people with psychosis is provided by mental health nurses and psychiatrists in Indonesia it is imperative that their views are considered to ensure optimal implementation.…”

Implementing civic engagement within mental health services in South East Asia: a systematic review and realist synthesis of current evidence

“…The rights of people with mental health problems to be involved as equals in decisions about their care are guaranteed by the Convention on the Rights of Persons with Disabilities, now ratified by over 150 countries, however a wide range of violations have been reported in LMICs [9]. Stigma towards those with mental health problems is pervasive in LMICs which represents a significant barrier to the implementation of civic engagement activities [10][11][12]. Such vulnerabilities to human rights abuse and stigma towards those with mental health problems have also been reported in Western contexts [13].…”