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

Author

Listed:
  • Action Amos
  • Sandra Jumbe
  • Thiyara Bandara
  • Sadiya Begum
  • Charlotte Hanlon
  • Sumeet Jain
  • Martyn Pickersgill
  • Eric Umar
  • Robert C Stewart

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.

Suggested Citation

  • Action Amos & Sandra Jumbe & Thiyara Bandara & Sadiya Begum & Charlotte Hanlon & Sumeet Jain & Martyn Pickersgill & Eric Umar & Robert C Stewart, 2026. "Involvement of users and caregivers in mental healthcare decision-making within low-and middle-income countries: A scoping review," PLOS Mental Health, Public Library of Science, vol. 3(10), pages 1-19, October.
  • Handle: RePEc:plo:pmen00:0000712
    DOI: 10.1371/journal.pmen.0000712
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