Community Development Health

The SUCCEED Programme offering interventions for people with psychosis in Africa

Winnie Ndoro - SUCCEED Zimbabwe Local Advisory Group Member, Lived Experience and Mental Health Activist

The SUCCEED programme is co-producing the design and evaluation of community-based interventions for people with psychosis in Africa. This came into being after it was established that people with psychosocial disabilities are best able to define their own needs.

Psychologist, Epiphany Munetsi said the SUCCEED Programme aims to build evidence on “What Works” for psychosocial disabilities in four countries (Nigeria, Sierra Leone, Zimbabwe, and Malawi).

The programme, which began in May 2020 has three distinct workstreams; Research, Capacity-building and Uptake.

“Psychotic conditions affect only 1% of the population but are among the most disabling mental health conditions. The social consequences of psychosis are also equally troubling, Access to treatment for psychotic conditions is limited, particularly in low-resource settings. Emphasis on common mental disorders has meant neglect of psychosis,” Munetsi said.

The programme seeks to develop an evidence-based package of multi-sectoral care and support (“enhanced CBR”) for people with psychosocial disabilities that is feasible, acceptable, and appropriate for low-resource, community-based settings; as well as to generate new knowledge on co-production for mental health research in low and middle-income countries (LMICs) by modelling best practice in disability inclusion, addressing attitudinal barriers among key stakeholders, and building the capacity of “experts by experience” to engage meaningfully in mental health research and policy.

Munetsi said that one of the most pressing issues in research on psychosocial disabilities is the under-involvement of people with lived experience and their families. He said there is a need for co-production as an approach where people with lived experience and people with professional experience work together as equal partners and co-creators. in addressing the challenge. Co-production has played an important role in health care reform in high-income countries but there is limited evidence in research coming from LMICs.

Musa Buyanga, a peer researcher, said the SUCCEED programme incorporates the “Nothing about us without us” principle and involves what is known as co-production. This involves people with lived experience and those with professional experience working together as equal partners and creators.

“I have been living with a psychosocial disability for the past 17 years and SUCCEED Africa is a platform that allows me and others with lived experience to express our thoughts and feelings about mental health. In SUCCEED Africa I play the role of Peer Researcher and it is the first time I have been involved in such a project as part of my career. It is something new and I am learning and gaining experience along the way.

“SUCCEED Africa has given me a platform to air my views as someone who has lived experience and has empowered me as well as others involved in SUCCEED. My thoughts, views, and decisions are considered and put into play. One of the most important ways I can begin to stop the stigma associated with mental health is by sharing my personal stories and experiences as someone with lived experience,” Buyanga said.

She added that if one stays silent about their experiences with mental health issues the stronger shame grows and the more fear they will have about telling their story, the more stereotypes get attached to mental health, the more people with psychosocial disabilities are isolated and the worse off they are.

Buyanga has had the privilege of being involved with other SUCCEED Africa countries and the London School of Hygiene and Tropical Medicine through virtual meetings that involve interaction, discussion, and decision making. For example, the monthly SUCCEED Africa meetings, situation analysis as well as the SUCCEED theory of change training, just to mention a few.

When co-production is practiced properly it ensures that all people involved are treated as equal partners and recognises that we all have skills and abilities we can put into practice.

“The concept of nothing about us without us recognises that people can contribute a great deal in shaping mental health research and care services in SUCCEED Africa.   For me, nothing about us without us in SUCCEED Africa means getting to know me and telling my story of what I want to put across in terms of thoughts, decisions, and views. This can only be done by having a conversation with me and those with lived experience and by listening to what we have to say. Ultimately it is about what really matters to me. Nothing about us without us in SUCCEED Africa can help ensure that resources are used to develop the services that people with psychosocial disabilities really want.”

Winnie Ndoro, the SUCCEED Zimbabwe Local Advisory Group Member, Lived Experience and Mental Health Activist said she has lived with Bipolar Disorder for the past 24 years.

“It is indeed a great opportunity for me to be a part of SUCCEED as a person with lived experience. With 24 years of experience in mental health in Zimbabwe, I can safely say I have been through years of stigmatisation, discrimination, and ostracism. I was diagnosed with Bipolar Disorder in the late nineties after having been stressed by being offered the wrong degree programme at the University of Zimbabwe. I had intended to study Physiotherapy but was offered Agriculture instead. This did not go down well with me and hence the psychosis. It took the psychiatrists over a year to come up with a diagnosis. I was on trial medication that had very bad side effects. I failed to cope with the medical school as I was later offered a place in Occupational therapy. The drowsing effects of the first-line antipsychotics made me fail dismally and I had to drop out of university.

“I was very dejected and hopeless. No one understood what I was going through. I am grateful I have a supportive family. They have believed in me from day one till now. With much coercion, I managed to go back to school, and in 2003 I graduated from the school of Radiography. I am more manic than I am depressive meaning major events in my life have led to the highs that got me hospitalised. Whilst admitted to the hospital, I interacted with my fellow inmates and I was very interested in understanding their psychosocial disabilities. I wanted to come up with a system where we could support one another. I was very vocal when it came to the treatment we received in the different mental health institutions. I became a mental health advocate in 2014 and assisted psychiatrists with their patients who could not accept their diagnoses,” Ndoro said.

She said she was a testimony that it could be done. This passion gave birth to Time for Mental Health Trust in 2015. The main objective of the organisation was to bring people with psychosocial disabilities together and provide support to one another by sharing their experiences and also assisting each other on how to blend in different communities. The Trust did not go far due to lack of funding as most of the members were not employed. In 2019, Ndoro relocated to another city and the Trust suffered tremendously.

“I must say Mental health issues are now being given priority in the health sector. There is now awareness and advocacy being broadcast throughout the media. In 2017, the World Health Day theme was “Depression: Let’s Talk”. This showed that indeed mental health issues were now coming out in the limelight. There is growing interest in mental health issues by scholars and researchers around the globe.”

Today, Ndoro is part of SUCCEED members who have also taken it upon themselves to address the mental health burden in Zimbabwe. They have gone a step further by actually engaging the people living with psychosocial disabilities in their research and work.

“This shows their care and concern for us, as we will be able to determine our future and productivity in the community. The journey has been tough but now we say goodbye to discrimination, stigmatization, and ostracism and embrace Support, Care, and Empowerment. Thank you SUCCEED.”

Mental health services in Zimbabwe are mostly offered by the government, private sector, and ministry of health partners. There are currently 4 tertiary psychiatric units, 2 forensic units, and 4 provincial units, and district hospitals and local clinics offering in-patient and outpatient care; 3 tertiary units and 1 provincial unit offer child and adolescent mental health service.

The Zimbabwe National Disability Policy was adopted by Cabinet on 9 February 2021. The Policy draws from among other frameworks the National Development Strategy 1 – 2021-2025, in which disability is clearly acknowledged as a cross-cutting interdisciplinary issue. The Policy sets standards for disability inclusion in the country including the inclusion of persons with psychosocial disabilities.

About the author

Byron Adonis Mutingwende