Involvement of users and caregivers in mental healthcare decision-making within low-and middle-income countries: A scoping review

Inclusive healthcare decision-making is a cornerstone of recovery-oriented mental health services, contributing to improved outcomes, enhanced autonomy, and reduced stigma. While substantial research on mental healthcare decision-making has been conducted in high-income countries, there is limited evidence from low- and middle-income countries (LMICs), where sociocultural norms, family structures, and health system constraints may shape decision-making differently. This review sought to synthesise evidence on service user and caregiver involvement in mental healthcare decision-making in LMICs and identify contextual factors influencing these processes. A scoping review was conducted following Arksey and O'Malley's five-stage framework. English-language studies from 2008 to 2025 were identified through databases and grey literature searches. Eligible studies extracted examined the involvement of people with mental health conditions and/or caregivers in mental healthcare decision-making within LMICs. Two reviewers independently coded descriptions of involvement using an inductive content analysis approach. Three overarching themes emerged: (1) active user involvement, reflecting service users' participation in and co-creation of decisions about their care; (2) family dominance, where family members significantly influenced or controlled decision-making processes; and (3) drivers of decision-making, including cultural norms, stigma, economic hardship, social relationships, and health system constraints. Overall, decision-making was predominantly shaped by family authority and contextual factors, with relatively limited evidence of shared or supported decision-making approaches. The search yielded 21,830 records, with an additional 46 studies identified through grey literature searches. Following screening, 36 studies were included. Studies were conducted across Africa (n = 12), Asia (n = 22), and the Middle East (n = 2). Mental healthcare decision-making in LMICs is embedded within complex family, cultural, and structural contexts that both enable and constrain service user participation. This review contributes to promoting a contextualised understanding of mental healthcare decision-making in LMICs.

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Journal
PLOS mental health.
Published
2026-10-30
DOI
https://doi.org/10.1371/journal.pmen.0000712
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
0.00

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article

Involvement of users and caregivers in mental healthcare decision-making within low-and middle-income countries: A scoping review

Martyn D. Pickersgill, Sadiya Begum, Sandra E. Jumbe, Robert C. Stewart et al.
PLOS mental health.
Mental Health and Patient Involvement
article

Involvement of users and caregivers in mental healthcare decision-making within low-and middle-income countries: A scoping review

Martyn D. Pickersgill, Sadiya Begum, Sandra E. Jumbe, Robert C. Stewart, Sumeet Jain, Charlotte Hanlon, Eric Umar, Action Amos, Thiyara Bandara
article en

Abstract

Inclusive healthcare decision-making is a cornerstone of recovery-oriented mental health services, contributing to improved outcomes, enhanced autonomy, and reduced stigma. While substantial research on mental healthcare decision-making has been conducted in high-income countries, there is limited evidence from low- and middle-income countries (LMICs), where sociocultural norms, family structures, and health system constraints may shape decision-making differently. This review sought to synthesise evidence on service user and caregiver involvement in mental healthcare decision-making in LMICs and identify contextual factors influencing these processes. A scoping review was conducted following Arksey and O'Malley's five-stage framework. English-language studies from 2008 to 2025 were identified through databases and grey literature searches. Eligible studies extracted examined the involvement of people with mental health conditions and/or caregivers in mental healthcare decision-making within LMICs. Two reviewers independently coded descriptions of involvement using an inductive content analysis approach. Three overarching themes emerged: (1) active user involvement, reflecting service users' participation in and co-creation of decisions about their care; (2) family dominance, where family members significantly influenced or controlled decision-making processes; and (3) drivers of decision-making, including cultural norms, stigma, economic hardship, social relationships, and health system constraints. Overall, decision-making was predominantly shaped by family authority and contextual factors, with relatively limited evidence of shared or supported decision-making approaches. The search yielded 21,830 records, with an additional 46 studies identified through grey literature searches. Following screening, 36 studies were included. Studies were conducted across Africa (n = 12), Asia (n = 22), and the Middle East (n = 2). Mental healthcare decision-making in LMICs is embedded within complex family, cultural, and structural contexts that both enable and constrain service user participation. This review contributes to promoting a contextualised understanding of mental healthcare decision-making in LMICs.

PLOS mental health.Vol. 3(10)
Queen Mary University of London (GB), Kamuzu Central Hospital (MW), Kamdhenu University (IN), The Millennium University (BD), Kamuzu University of Health Sciences (MW), Addis Ababa University (ET), University of Edinburgh (GB)
Wellcome Trust, Government of the United Kingdom, National Institute for Health and Care Research, Department of Health and Social Care, British Academy
Good health and well-being, Reduced inequalities
Openalex Percentile: Top 8%
Mental Health and Patient Involvement
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