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 |
Permalink -
https://repository.mdx.ac.uk/item/278994
Download files
122
total views25
total downloads8
views this month2
downloads this month
Export as
Related outputs
Co-developing suicide prevention guidelines for Pakistan: a mixed-methods Delphi consensus study
Kiran, T., Colucci, E., Shahid, S., Tofique, S., Shakoor, S., Imam, Z., Husain, N. and Chaudhry, N. 2025. Co-developing suicide prevention guidelines for Pakistan: a mixed-methods Delphi consensus study. BMC Public Health. 25 (1). https://doi.org/10.1186/s12889-025-23942-3Suicide in Asia and the Pacific
Colucci, E. and Minas, H. 2025. Suicide in Asia and the Pacific. MDPI.Exploring the perspectives about barriers and facilitators to accessing and engaging with domestic violence services among Turkish immigrant women: a photovoice study
Tarakci, O. and Colucci, E. 2025. Exploring the perspectives about barriers and facilitators to accessing and engaging with domestic violence services among Turkish immigrant women: a photovoice study. Violence Against Women. https://doi.org/10.1177/10778012251372556Effectiveness of YCMAP (youth culturally adapted manual assisted problem solving) intervention in adolescents after self-harm in Pakistan: multicentre, randomised controlled trial
Husain, N., Tofique, S., Kiran, T., Pierce, M., Chaudhry, I., Husain, M., Memon, R., Waqas, A., Gire, N., Edwards, S., Bassitt, P., Shakoor, S., Zaddeh, Z., Arshad, U., Colucci, E., Mughal, F., Shahid, S., Panagioti, M., Nizami, A.T., Jafri, F., Naeem, F., Emsley, R., Ansari, M.A., Sultan, S., Aggarwal, S., Williams, C. and Chaudhry, N. 2025. Effectiveness of YCMAP (youth culturally adapted manual assisted problem solving) intervention in adolescents after self-harm in Pakistan: multicentre, randomised controlled trial. British Medical Journal (The BMJ). 390. https://doi.org/10.1136/bmj-2024-083272Mental health issues, risks and barriers to care for Bangladeshi children and adolescents: insights from lived experiences
Faruk, M., Chowdhury, K.U.A., Jahan, S. and Colucci, E. 2025. Mental health issues, risks and barriers to care for Bangladeshi children and adolescents: insights from lived experiences. International Health. https://doi.org/10.1093/inthealth/ihaf091“They think we are trying to combine knowledges, whereas we are trying to harmonize them”: a visual exploration of what promotes successful collaboration between mental health workers and healers in Indonesia
Setiyawati, D., Jatmika, W.N., Read, U.M. and Colucci, E. 2025. “They think we are trying to combine knowledges, whereas we are trying to harmonize them”: a visual exploration of what promotes successful collaboration between mental health workers and healers in Indonesia. Transcultural Psychiatry. 62 (5), pp. 555-571. https://doi.org/10.1177/13634615251338906Suicide and culture 2.0: understanding the context
Colucci, E. and Lester, D. 2025. Suicide and culture 2.0: understanding the context. Hogrefe Ltd.Mental health and suicide research with migrants in Australia: necessary knowledge, skills and engagement strategies
Minas, H., Diocera, D. and Colucci, E. 2025. Mental health and suicide research with migrants in Australia: necessary knowledge, skills and engagement strategies. Behavioral Sciences. 15 (5). https://doi.org/10.3390/bs15050604Crisis-line workers’ perspectives on AI in suicide prevention: a qualitative exploration of risk and opportunity
Greaves, J. and Colucci, E. 2025. Crisis-line workers’ perspectives on AI in suicide prevention: a qualitative exploration of risk and opportunity. BMC Public Health. 25 (1). https://doi.org/10.1186/s12889-025-23298-8Unspoken, unseen, unheard: using arts-based and visual research methods to gain insights into lived experiences of suicide in young adults
Smit, J., Colucci, E. and Marzano, L. 2025. Unspoken, unseen, unheard: using arts-based and visual research methods to gain insights into lived experiences of suicide in young adults. Social Sciences. 14 (2). https://doi.org/10.3390/socsci14020062Evaluating suicide prevention gatekeeper training designed to identify and support people from asylum-seeking and refugee backgrounds
MacDonald Hart, S., Colucci, E. and Marzano, L. 2024. Evaluating suicide prevention gatekeeper training designed to identify and support people from asylum-seeking and refugee backgrounds. BMC Public Health. 24. https://doi.org/10.1186/s12889-024-20304-3Indonesian stakeholders' perspectives on warning signs and beliefs about suicide
Setiyawati, D., Puspakesuma, N., Jatmika, W. and Colucci, E. 2024. Indonesian stakeholders' perspectives on warning signs and beliefs about suicide. Behavioral Sciences. 14 (4). https://doi.org/10.3390/bs14040295‘We are all working toward one goal. We want people to become well’: A visual exploration of what promotes successful collaboration between community mental health workers and healers in Ghana
Kpobi, L., Read, U., Selormey, R. and Colucci, E. 2024. ‘We are all working toward one goal. We want people to become well’: A visual exploration of what promotes successful collaboration between community mental health workers and healers in Ghana. Transcultural Psychiatry. 61 (1), pp. 30-46. https://doi.org/10.1177/13634615231197998Mental illness stigma in Bangladesh: Findings from a cross-sectional survey
Faruk, M., Khan, A., Chowdhury, K., Jahan, S., Sarker, D., Colucci, E. and Hasan, M. 2023. Mental illness stigma in Bangladesh: Findings from a cross-sectional survey. Cambridge Prisms: Global Mental Health. 10. https://doi.org/10.1017/gmh.2023.56‘Breaking the chains’: reflections on the making of an ethnographic documentary on human rights violations against people with mental illness in Indonesia
Colucci, E. 2023. ‘Breaking the chains’: reflections on the making of an ethnographic documentary on human rights violations against people with mental illness in Indonesia. Visual Studies. 39 (3), pp. 307-320. https://doi.org/10.1080/1472586X.2023.2274892Indonesian first national suicide prevention strategy: key findings from the qualitative situational analysis
Onie, S., Vina, A., Taufik, K., Abraham, J., Setiyawati, D., Colucci, E., Nilam, J., Onie, S., Hunt, A., Saputra, A., Hidayati, N., Harsono, C., Bestari, D., Muhdi, N., Wolter, A., Liem, A., Rochmawati, I., Ardian, J., Prasojo, R., Heri Setiawan, Y., Heny, G., Purnawan, H., Gamayanti, I., Senosoenoto, H., Jenarut, M., Prawira, B., Trianggoro, C., Warbung, E., Novita Mudjianto, C., Ariani, A., Irmansyah, I., Mulia, M., Badudu, J., Badudu, M., Kumolohadi, R., Zein, R., Mahadi, S., Wongkaren, T., Josifovski, N. and Larsen, M. 2023. Indonesian first national suicide prevention strategy: key findings from the qualitative situational analysis. The Lancet Regional Health – Southeast Asia. 16. https://doi.org/10.1016/j.lansea.2023.100245An Interpretative Phenomenological Analysis (IPA) of the experiential perspectives of volunteer befrienders, pertaining to causes of suicidality and prevention
Macdonald-Hart, S. and Colucci, E. 2020. An Interpretative Phenomenological Analysis (IPA) of the experiential perspectives of volunteer befrienders, pertaining to causes of suicidality and prevention. Journal of Suicide Prevention. 2 (1), pp. 15-30.Lived experiences of mental health recovery in persons of culturally and linguistically diverse (CALD) backgrounds within the Australian context
Levy-Fenner, E., Colucci, E. and McDonough, S. 2022. Lived experiences of mental health recovery in persons of culturally and linguistically diverse (CALD) backgrounds within the Australian context. Journal of Psychosocial Rehabilitation and Mental Health. 11 (1), pp. 7-32. https://doi.org/10.1007/s40737-022-00319-yPiloting of a suicide first aid gatekeeper training (online) for children and young people in conflict affected areas in Syria
Colucci, E., Jaroudy, S. and Rossmann, M. 2022. Piloting of a suicide first aid gatekeeper training (online) for children and young people in conflict affected areas in Syria. International Review of Psychiatry. 34 (6), pp. 640-648. https://doi.org/10.1080/09540261.2022.2100245Il ruolo di sacerdoti Camilliani nella cura di persone vittime di pratiche di contenimento e/o reclusione a causa di malattia mentale nell’isola di Flores in Indonesia
Colucci, E., Prastyani, A. and Setiyawati, D. 2022. Il ruolo di sacerdoti Camilliani nella cura di persone vittime di pratiche di contenimento e/o reclusione a causa di malattia mentale nell’isola di Flores in Indonesia. Transculturale. 1 (1), pp. 79-87. https://doi.org/10.7413/tran0005
How can we mainstream mental health in research engaging the range of Sustainable Development Goals? A theory of change
Madill, A., Bhola, P., Colucci, E., Croucher, K., Evans, A. and Graber, R. 2022. How can we mainstream mental health in research engaging the range of Sustainable Development Goals? A theory of change. PLOS Global Public Health. 2 (8), pp. 1-12. https://doi.org/10.1371/journal.pgph.0000837Youth Culturally adapted Manual Assisted Problem Solving Training (YCMAP) in Pakistani adolescent with a history of self-harm: protocol for multicentre clinical and cost-effectiveness randomised controlled trial
Husain, N., Tofique, S., Chaudhry, I., Kiran, T., Taylor, P., Williams, C., Memon, R., Aggarwal, S., Alvi, M., Ananiadou, S., Ansari, M., Aseem, S., Beck, A., Alam, S., Colucci, E., Davidson, K., Edwards, S., Emsley, R., Green, J., Gumber, A., Hawton, K., Jafri, F., Khaliq, A., Mason, T., Mcreath, A., Minhas, A., Naeem, F., Naqvi, H., Noureen, A., Panagioti, M., Patel, A., Poppleton, A., Shiri, T., Simic, M., Sultan, S., Nizami, A., Zadeh, Z., Zafar, S. and Chaudhry, N. 2022. Youth Culturally adapted Manual Assisted Problem Solving Training (YCMAP) in Pakistani adolescent with a history of self-harm: protocol for multicentre clinical and cost-effectiveness randomised controlled trial. BMJ Open. 12 (5). https://doi.org/10.1136/bmjopen-2021-056301Suicide first aid guidelines for Indonesia: a Delphi consensus study
Setiyawati, D., Jatmika, W., Puspakesuma, N., Retnowati, S. and Colucci, E. 2022. Suicide first aid guidelines for Indonesia: a Delphi consensus study. Journal of Mental Health. 31 (3), pp. 410-431. https://doi.org/10.1080/09638237.2021.2022632People of immigrant and refugee background sharing experiences of mental health recovery: reflections and recommendations on using digital storytelling
McDonough, S. and Colucci, E. 2021. People of immigrant and refugee background sharing experiences of mental health recovery: reflections and recommendations on using digital storytelling. Visual Communication. 20 (1), pp. 134-156. https://doi.org/10.1177/1470357218820651Afflictions: Steps towards a Visual Psychological Anthropology by Robert Lemelson and Annie Tucker [Book review]
Colucci, E. 2019. Afflictions: Steps towards a Visual Psychological Anthropology by Robert Lemelson and Annie Tucker [Book review]. Anthropological Quarterly. 92 (3), pp. 943-948. https://doi.org/10.1353/anq.2019.0050Suicide first aid guidelines for people from immigrant and refugee backgrounds
Colucci, E., Jorm, A., Kelly, C. and Minas, H. 2018. Suicide first aid guidelines for people from immigrant and refugee backgrounds. Melbourne Mental Health in Multicultural Australia; Global and Cultural Mental Health Unit, Centre for Mental Health, Melbourne School of Population and Global Health, The University of Melbourne; and Mental Health First Aid Australia.Recovering from mental illness and suicidal behaviour in a culturally diverse context: the use of digital storytelling in cross-cultural medical humanities and mental health
Colucci, E. and McDonough, S. 2019. Recovering from mental illness and suicidal behaviour in a culturally diverse context: the use of digital storytelling in cross-cultural medical humanities and mental health. in: Lo, V., Berry, C. and Liping, G. (ed.) Film and the Chinese Medical Humanities United Kingdom Routledge. pp. 205-225Priests, a grandmother and schizophrenia
Prastyani, A., Setiyawati, D. and Colucci, E. 2020. Priests, a grandmother and schizophrenia. Inside Indonesia. 141.Towards the development of ethics guidelines for visual psychology: a review of relevant visual research ethics guidelines
Hansen, S. and Colucci, E. 2020. Towards the development of ethics guidelines for visual psychology: a review of relevant visual research ethics guidelines. Qualitative Methods in Psychology Bulletin. Autumn (30). https://doi.org/10.53841/bpsqmip.2020.1.30.83