CHaRISMA (Curtailing Hospital Readmission In people with Severe Mental illness in Africa)

While serious mental illness (SMI) defined as schizophrenia, bipolar disorder, or psychosis is only 0.06% of global mental illness, those suffering from SMI in low income countries do not have access to reliable and well accepted community based treatment, where they could get the support and care of family and local community. People with SMI in Uganda can be treated in the national mental hospital and be given medication. But once their condition has been stabilised, and they are ready to leave hospital, even if their family are prepared to have them back home, there are no government agencies to counsel, care and follow up their recovery needs. There are simply few resources available and little international attention and research has focused on this area. Addressing this important gap is the focus of this research.

The Preventing Hospital Re-admissions for People with Severe Mental Illness in East Africa (PRISM) development project has been designed in partnership with the Ugandan NGO YouBelongHOME (YBH), who have begun an innovative programme working to improve appropriate, hospital to home mental health interventions with human rights values at the core. Butabika Mental Health Hospital, Kampala, Uganda are partners in this work. YBH is delivered by a multi-disciplinary team. Due to extremely scarce resources, sustainability can only occur by empowering families and local communities, to provide a basic level of support and care, and by re-creating the national mental hospital as short term acute care to stabilise people with severe mental illness and to return them to community care as soon as possible.

YBH is centred on post hospital discharge interventions to empower the family as an active agent in the returned person's recovery, and also, to connect to family, friends and communities. Recovery is supported through discussions and dialogue with family and discharged person regarding health, housing security, family income, medication needs, knowledge of mental illness/ myths, how to assist in the recovery process, reinforcing particular tribal values to give impetus to supportive behaviour, developing problem solving skills, ways to give and receive respect and recognition. Despite its potential, the YBH intervention lacks systematically gathered evidence for its effectiveness in East African LICs.

Before conducting a larger clinical trial which aims to establish this evidence, more information is needed to determine the feasibility, acceptability, and appropriateness of the YBH intervention in settings like Uganda. To gather this information PRISM will explore 3 areas.
1) Explore who is at risk of mental health hospital readmission in Uganda within 3 months of discharge and develop a risk score as a tool for health workers;
2) Using action research and patient and family interviews, test and refine the YBH pre- and post-discharge intervention with a sub-set of patients and families in Kampala and Wakiso districts, the principal catchment area for Butabika Hospital. What could be improved and how?
3) Undertake a feasibility assessment of community-based initiatives using qualitative data collection and a Delphi Method as a means of involving a range of people with different perspectives sharing their expertise, and coming to a consensus about best options. There are many options (e.g. community development at village and family level; rapid or emergency response team and micro-financing initiatives, peer support workers). Which might work best and against what criteria?

The research findings will inform the design of a future clinical trial which has a primary outcome to decrease readmission within three months of discharge among high-risk patients with SMI in East African countries, and better support people discharged from hospital recover at home.

The global burden of severe mental illness (SMI) is well established, as is the human rights implications for the health and wellbeing of patients, caring responsibilities and burdens, and the economic situations of families and communities (Patel et al, 2016, p. 1672). These implications are especially acute in low income countries where there is less patient access to treatment, hospital care, and to a range of recovery and preventative mental health care (Hanlon, 2016). Against this backdrop, there is an ongoing need for evidence about which interventions work best (Hanlon, 2016).

Preventing Hospital Re-admissions for People with Severe Mental Illness in East Africa (PRISM) is a development project that has been designed in partnership with the Ugandan NGO YouBelongHOME (YBH). YBH have begun an innovative programme working to improve appropriate, hospital to home mental health interventions with human rights values at the core. Utilising a culturally-centred, family-focussed recovery programme, YBH is based on post hospital discharge interventions to empower the family as an active agent in the returned person's recovery, and also, to connect to family, friends and communities.

Despite its potential, YBH lacks systematically gathered evidence for its effectiveness in African LICs. Before conducting a trial which aims to establish this evidence, more information is needed to determine the feasibility, acceptability, and appropriateness of the YBH intervention in settings like Uganda. PRISM will undertake research in Uganda to develop a risk score to help identify patients with SMI at highest risk of readmission within three months; using action research and patient and family interviews, test and refine the YBH pre- and post-discharge intervention in Kampala; and undertake a feasibility assessment of community-based initiatives. The research findings will shape the design of a future clinical trial in East Africa.

PRISM has been co-produced with Ugandan mental health practitioners and is grounded in a pressing global health need and pragmatic intervention. The research findings will shape the design of a future clinical trial in East Africa for which this team will submit a funding application to the Joint Global Health Trial Scheme in September 2019. The impact of this proposed project includes the availability of a tested model with capacity to provide patients with SMI greater access to supportive family and community programmes, and the potential to reduce overall numbers of people being readmitted to mental health hospitals. Throughout the course of the project, the pathway to impact will be forged through repeated engagement with mental health practitioners, action research that engages patients and families, and information sessions for hospital staff, mental health workers, and key policy actors. Research findings will be disseminated in formats relevant to East African mental health policy makers and practitioners, academic outlets, and patients, families, and their communities.