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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

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Herni Susanti, Karen James, Bagus Utomo, Budi Anna Keliat, Karina Lovell, I. Irmansyah, Diana Rose, Erminia Colucci, Helen Brooks

Original languageEnglish
JournalHealth Expectations
Published1 Jan 2019

King's Authors


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.

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