A Study Protocol: Engagement of Lived Experience Voices for Analysis of Transformative Evidence in Mental Health Policy & Legislation (ELEVATE-MH)
Mental health conditions affect almost one in seven people globally. In response to the Convention on the Rights of Persons with Disabilities (CRPD), efforts to strengthen mental health systems have included increased funding, destigmatization of mental health, and the engagement of People with Lived Experience (PWLE) in decision making. Yet the extent to which PWLE are engaged in mental health policy development is not well characterized in the literature. To that end, this study seeks to understand the engagement of PWLE in mental health policy making in Africa and identify strategies for enhancing meaningful engagement of PWLE. The study described in this protocol will employ a qualitative multi-methods approach, utilizing the Policy Triangle Framework to analyze the policy making process, and International Association for Public Participation Spectrum to identify the extent of PWLE engagement. We will perform a scoping review of national mental health policies and legislation. We will interview 50 key informants including mental health policymakers, advocates, and researchers, and conduct focus group discussions with 120 PWLE. Qualitative data will be subject to content and thematic analysis. Country-specific analyses will be followed by a cross-country synthesis. Findings will inform context specific and strategies to enhance meaningful engagement of PWLE in mental health policy making. These will be disseminated through stakeholder workshops in each country, academic publications, conferences, PWLE-led knowledge translation activities, and policy briefs co-authored with community advocates.
Authors
- Lucinda Manda‐Taylor (ORCID: https://orcid.org/0000-0001-8149-0897)
- Kalo C. Sokoto (ORCID: https://orcid.org/0000-0003-2984-8649)
- Martyn Pickersgill (ORCID: https://orcid.org/0000-0001-9807-9148)
- Sarah Valentine (ORCID: https://orcid.org/0000-0002-4856-9269)
- Senait Ghebrehiwet (ORCID: https://orcid.org/0000-0002-9611-9684)
- Action Amos
- Olindah Silaule (ORCID: https://orcid.org/0000-0003-0406-9788)
- David C. Henderson (ORCID: https://orcid.org/0000-0001-8755-4505)
- Kimberly Kariuki
- Selamawit A. Tessema
- Mohhadiah Rafique (ORCID: https://orcid.org/0000-0002-8155-507X)
- Tina W. Masai
- Sisikelelwe S. Gwanya-Mdletye
- Yiknashewa Solomon
- Chiliza Bonginkosi
- S’thembile Phindile Promise Jili
- Benjamin Harris
- Ghonda Lepkeh
Institutions
- Boston Medical Center (US)
- University of Liberia (LR)
- University of Cape Town (ZA)
- Stellenbosch University (ZA)
- Kamuzu Central Hospital (MW)
- Kenya Medical Research Institute (KE)
- MRC Centre for Regenerative Medicine (GB)
- Kenya Agricultural Research Institute (KE)
- Blantyre Institute for Community Ophthalmology (MW)
- Glasgow Centre for Population Health (GB)
- St. Paul's Hospital Millennium Medical College (ET)
- Children's Specialized Hospital (US)
- Kamuzu University of Health Sciences (MW)
- Walter Sisulu University (ZA)
- University of KwaZulu-Natal (ZA)
- University of Edinburgh (GB)
Publication Details
- Journal
- PLoS ONE
- Published
- 2026-04-15
- DOI
- https://doi.org/10.1371/journal.pone.0346037
- Primary Topic
- Mental Health and Patient Involvement
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Wellcome Trust
- British Academy
- National Institute of Mental Health