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26 - Involvement of People with Lived Experience of Mental Health Conditions in Decision-Making to Improve Care in Rural Ethiopia

Published online by Cambridge University Press:  20 August 2021

Michael Ashley Stein
Affiliation:
Harvard Law School
Faraaz Mahomed
Affiliation:
Wits University
Vikram Patel
Affiliation:
Harvard Medical School
Charlene Sunkel
Affiliation:
Global Mental Health Peer Network
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Summary

A human rights-based approach is required to embed the principles of participation, empowerment and accountability in mental healthcare systems. Involvement of people with lived experience in decision-making is a key element of this approach and an important ingredient of strengthening mental health systems and improving care. Ethiopia represents a case example of a low-income country where both conceptual and practical frameworks of involvement are currently being developed in the context of limited resources. Whilst experiences of involvement and autonomy in decision-making remain limited due to contextual challenges and cultural norms, approaches such as community-based rehabilitation and participatory action research offer potential platforms to promote, facilitate and enhance involvement. To ensure effective implementation, these approaches need to be supported within a pragmatic multi-stakeholder strategy that aims to create a cultural shift, empower people with lived experience, overcome structural barriers (particularly stigma and poverty), provide culturally appropriate resources (including guidance and training) and develop an implementable legislative framework for mental health care.

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Publisher: Cambridge University Press
Print publication year: 2021

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References

Abayneh, S., Lempp, H., Alem, A., et al. (2017). Service user involvement in mental health system strengthening in a rural African setting: qualitative study. BMC Psychiatry, 17(1). https://doi.org/10.1186/s12888-017-1352-9Google Scholar
Abayneh, S., Lempp, H., & Alem, A. et al. (2020). Developing a Theory of Change model of service user and caregiver involvement in mental health system strengthening in primary health care in rural Ethiopia. Int J Ment Health Syst 14(51). https://doi.org/10.1186/s13033-020-00383-6Google Scholar
Abayneh, S., Lempp, H., & Hanlon, C. (2020). Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol. Research Involvement and Engagement, 6(1). https://doi.org/10.1186/s40900-019-0175-xGoogle Scholar
Alem, A., Jacobsson, L., Lynöe, N., Kohn, R., & Kullgren, G. (2002). Attitudes and practices among Ethiopian health care professionals in psychiatry regarding compulsory treatment. International Journal of Law and Psychiatry, 25(6), 599610. https://doi.org/10.1016/S0160-2527(01)00112-1Google Scholar
Asher, L, Birhane, R, Teferra, S, et al. (2021). “Like a doctor, like a brother”: Achieving competence amongst lay health workers delivering community-based rehabilitation for people with schizophrenia in Ethiopia. PLoS One. 16(2). https://doi.org/10.1371/journal.pone.0246158Google Scholar
Asher, L., Fekadu, A., Teferra, S., et al. (2017). “I cry every day and night, I have my son tied in chains”: physical restraint of people with schizophrenia in community settings in Ethiopia. Globalization and Health, 13(1). https://doi.org/10.1186/s12992-017-0273-1Google Scholar
Asher, L., Hanlon, C., Birhane, R., et al. (2018). Community-based rehabilitation intervention for people with schizophrenia in Ethiopia (RISE): a 12 month mixed methods pilot study. BMC Psychiatry, 18(1). https://doi.org/10.1186/s12888-018-1818-4Google Scholar
Bartlett, P., & Hamzic, V. (2010). Reforming Mental Disability Law in Africa: Practical Tips and Suggestions. Human Rights Law Centre, University of Nottingham.Google Scholar
Bayetti, C., Jadhav, S., & Jain, S. (2016). The re-covering self: a critique of the recovery-based approach in India’s mental health care. Disability and the Global South, 3(1).Google Scholar
Faulkner, A. (2017). Survivor research and Mad Studies: the role and value of experiential knowledge in mental health research. Disability and Society, 32(4), 500520. https://doi.org/10.1080/09687599.2017.1302320Google Scholar
Fricker, M. (2007). Epistemic Injustice: Power and the Ethics of Knowing. In Epistemic Injustice: Power and the Ethics of Knowing. Oxford University Press. https://doi.org/10.1093/acprof:oso/9780198237907.001.0001Google Scholar
Hanlon, C., Tesfaye, M., Wondimagegn, D., & Shibre, T. (2010). Ethical and professional challenges in mental health care in low- and middle-income countries. International Review of Psychiatry, 22(3), 245251. https://doi.org/10.3109/09540261.2010.482557Google Scholar
Kleintjes, S., Lund, C., & Swartz, L. (2013). Organising for self-advocacy in mental health: experiences from seven African countries. African Journal of Psychiatry (South Africa), 6(3), 187195. https://doi.org/10.4314/ajpsy.v16i3.25Google Scholar
Kurs, R., & Grinshpoon, A. (2018). Vulnerability of individuals with mental disorders to epistemic injustice in both clinical and social domains. Ethics and Behavior, 28(4), 336346. https://doi.org/10.1080/10508422.2017.1365302Google Scholar
Lempp, H., Abayneh, S., Gurung, D., et al. (2018). Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: a cross-country qualitative study. Epidemiology and Psychiatric Sciences, 27(1), 2939. https://doi.org/10.1017/S2045796017000634Google Scholar
Lund, C., Tomlinson, M., & Patel, V. (2016). Integration of mental health into primary care in low-and middle-income countries: the PRIME mental healthcare plans. British Journal of Psychiatry, 258(S56). https://doi.org/10.1192/bjp.bp.114.153668Google Scholar
Mathias, K., Pillai, P., Gaitonde, R., Shelly, K., & Jain, S. (2019). Co-production of a pictorial recovery tool for people with psycho-social disability informed by a participatory action research approach – a qualitative study set in India. Health Promotion International, 35(3). https://doi.org/10.1093/heapro/daz043Google Scholar
Mayston, R., Alem, A., Habtamu, A., et al. (2016). Participatory planning of a primary care service for people with severe mental disorders in rural Ethiopia. Health Policy and Planning, 31(3), 367376. https://doi.org/10.1093/heapol/czv072Google Scholar
Ministry of Health [Ethiopia]. (2012). Ethiopian National Mental Health Strategy 2012/13–2015/16.Google Scholar
Newbigging, K., & Ridley, J. (2018). Epistemic struggles: the role of advocacy in promoting epistemic justice and rights in mental health. Social Science and Medicine, 219, 3644. https://doi.org/10.1016/j.socscimed.2018.10.003Google Scholar
Perkins, A., Ridler, J., Browes, D., et al. (2018). Experiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings. The Lancet Psychiatry, 5(9). https://doi.org/10.1016/S2215-0366(18)30095-6Google Scholar
Rai, S., Gurung, D., Kaiser, B. N et al. (2018). A service user co-facilitated intervention to reduce mental illness stigma among primary healthcare workers: utilizing perspectives of family members and caregivers. Families, Systems and Health, 36(2). https://doi.org/10.1037/fsh0000338Google Scholar
Rose, D. (2017). Service user/survivor-led research in mental health: epistemological possibilities. Disability and Society, 32(6), 773789. https://doi.org/10.1080/09687599.2017.1320270Google Scholar
Saxena, S., Funk, M. K., & Chisholm, D. (2015). Comprehensive mental health action plan 2013–2020. Eastern Mediterranean Health Journal. https://doi.org/10.26719/2015.21.7.461Google Scholar
Semrau, M., Evans-Lacko, S., Alem, A., et al. (2015). Strengthening mental health systems in low- and middle-income countries: the Emerald programme. BMC Medicine, 13(79). https://doi.org/10.1186/s12916-015-0309-4Google Scholar
Semrau, M., Lempp, H., Keynejad, R., et al. (2016). Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: systematic review. BMC Health Services Research, 16(1). https://doi.org/10.1186/s12913-016-1323-8Google Scholar
Slade, M. (2017). Implementing shared decision making in routine mental health care. World Psychiatry, 16(2), 146153. https://doi.org/10.1002/wps.20412Google Scholar
Souraya, S., Hanlon, C., & Asher, L. (2018). Involvement of people with schizophrenia in decision-making in rural Ethiopia: a qualitative study. Globalization and Health, 14(1). https://doi.org/10.1186/s12992-018-0403-4Google Scholar
Srinivasan, T. N., & Thara, R. (2002). At issue: management of medication noncompliance in schizophrenia by families in India. Schizophrenia Bulletin, 28(3), 531535. https://doi.org/10.1093/oxfordjournals.schbul.a006960Google Scholar
Sugiura, K., Mahomed, F., Saxena, S., & Patel, V. (2020). An end to coercion: rights and decision-making in mental health care. Bulletin of the World Health Organization, 98(1), 5258. https://doi.org/10.2471/BLT.19.234906Google Scholar
Sunkel, C. (2012). Empowerment and partnership in mental health. The Lancet, 379(9812). https://doi.org/10.1016/S0140-6736(11)61270-1Google Scholar
Tambuyzer, E., Pieters, G., Van, C., & Phdà, A. (2011). Patient involvement in mental health care: one size does not fit all. John Wiley & Sons Ltd Health Expectations, 17, 138150. https://doi.org/10.1111/j.1369-7625.2011.00743.xGoogle Scholar
United Nations Human Rights. (2016). Ethiopia’s record on rights of persons with disabilities faces review by UN Committee. United Nations Human Rights Office of the High Commission.Google Scholar
World Health Organisation. (2013). Mental Health Action Plan 2013–2020. World Health Organisation.Google Scholar
World Health Organisation. (2015). Mental health atlas. Bulletin of the World Health Organization.Google Scholar

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