Lived experience in mental health research in Ghana and Indonesia: what have we learned?
Article
Tizaa, H.L., Aboagye, L.A.F., Drah, E.A., Ofosuware, J.S., Faustina, E., Nurmalasari, D.E., Marlina, I., Budiyanto, S.K., Sugianto, A., Kpobi, L., Osei-Tutu, A., Setiyawati, D., Jatmika, W.N., Colucci, E. and Read, U. 2025. Lived experience in mental health research in Ghana and Indonesia: what have we learned? PLOS Mental Health. 2 (6). https://doi.org/10.1371/journal.pmen.0000344
| Type | Article |
|---|---|
| Title | Lived experience in mental health research in Ghana and Indonesia: what have we learned? |
| Authors | Tizaa, H.L., Aboagye, L.A.F., Drah, E.A., Ofosuware, J.S., Faustina, E., Nurmalasari, D.E., Marlina, I., Budiyanto, S.K., Sugianto, A., Kpobi, L., Osei-Tutu, A., Setiyawati, D., Jatmika, W.N., Colucci, E. and Read, U. |
| Abstract | There are increasing calls for the involvement of people with lived experience in mental health research. However, to date there are few examples of peer research conducted by people with lived experience of mental health conditions from the Global South. This paper explores the experiences of peer researchers involved in mental health research in Ghana and Indonesia. Peer researchers with lived experience of mental health conditions were employed as part of the research team to carry out qualitative and participatory arts-based research. Following this, peer researchers completed feedback forms and written reflections as well as taking part in unstructured discussions on their experience. Together with the academic research team, themes were developed from this feedback to identify the benefits, challenges and lessons learned from this process. Peer researchers benefited from developing skills and confidence, sharing lived experience, opportunities to engage with stakeholders and a supportive working environment. However, they identified several challenges including balancing care for self and others, precarious working conditions, enduring power imbalances and limited training and preparation. Key lessons included the need to consider safety and support needs, preparation for working with participants with lived experience, meeting resource needs and the importance of involving peer researchers across the research cycle. Based on these experiences, we identify several recommendations for peer research, particularly in Global South settings. These include involving people with lived experience in research design and costing, careful preparation and training, creating safe spaces and enabling access to mental health support, providing fair and comprehensive remuneration, creating opportunities for career development and democratizing opportunities for participation. |
| Sustainable Development Goals | 3 Good health and well-being |
| Middlesex University Theme | Health & Wellbeing |
| Publisher | Public Library of Science |
| Journal | PLOS Mental Health |
| ISSN | |
| Electronic | 2837-8156 |
| Publication dates | |
| Online | 17 Jun 2025 |
| 17 Jun 2025 | |
| Publication process dates | |
| Submitted | 12 Nov 2024 |
| Accepted | 04 May 2025 |
| Deposited | 07 Jul 2025 |
| Output status | Published |
| Publisher's version | License File Access Level Open |
| Copyright Statement | © 2025 Tizaa et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. |
| Digital Object Identifier (DOI) | https://doi.org/10.1371/journal.pmen.0000344 |
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