Involvement of users and caregivers in mental healthcare decision-making within low-and middle-income countries: A scoping review
8 affiliations
- 1Division of Psychiatry, Institute for Neuroscience and Cardiovascular Research, University of Edinburgh, Edinburgh, United Kingdom.
- 2Pan African Network of Persons with Psychosocial Disabilities, Kigali, Rwanda.
- 3Wolfson Institute of Population Health, Queen Mary University of London, London, United Kingdom.
- 4Department of Social & Health Sciences, Millenium University, Blantyre, Malawi.
- 5Department of Psychiatry, School of Medicine, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia.
- 6School of Social and Political Science, University of Edinburgh, Edinburgh, United Kingdom.
- 7Kamuzu University of Health Sciences (KuHES), Blantyre, Malawi.
- 8Centre for Biomedicine, Self and Society, Usher Institute, University of Edinburgh, Edinburgh, United Kingdom.
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.
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BibTeX
@article{amos2026involvement,
title = {{Involvement of users and caregivers in mental healthcare decision-making within low-and middle-income countries: A scoping review}},
author = {Action Amos and Sandra Jumbe and Thiyara Bandara and Sadiya Begum and Charlotte Hanlon and Sumeet Jain and Martyn Pickersgill and Eric Umar and Robert C Stewart},
journal = {PLOS Mental Health},
year = {2026},
month = oct,
doi = {10.1371/journal.pmen.0000712},
url = {https://journals.plos.org/mentalhealth/article?id=10.1371/journal.pmen.0000712},
note = {CC BY},
}
RIS
TY - JOUR
TI - Involvement of users and caregivers in mental healthcare decision-making within low-and middle-income countries: A scoping review
AU - Action Amos
AU - Sandra Jumbe
AU - Thiyara Bandara
AU - Sadiya Begum
AU - Charlotte Hanlon
AU - Sumeet Jain
AU - Martyn Pickersgill
AU - Eric Umar
AU - Robert C Stewart
PY - 2026
DA - 2026/10/30
JO - PLOS Mental Health
DO - 10.1371/journal.pmen.0000712
UR - https://journals.plos.org/mentalhealth/article?id=10.1371/journal.pmen.0000712
AB - 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.
SN - 2837-8156
ER -