Rehabilitation Intervention for people with Schizophrenia in Ethiopia (RISE)

Innovation summary

Schizophrenia is a severe and chronic condition. In Ethiopia, people with schizophrenia have high levels of disability, family burden, stigma, and mortality. Human rights violations also occur. The majority of people with schizophrenia in this setting do not have access to adequate care. The WHO’s mental health Gap Action Programme mhGAP recommends that schizophrenia management should include psychosocial interventions, including community-based rehabilitation (CBR).

CBR aims to reduce disability and improve the quality of life and social inclusion of people with disabilities. As part of RISE, an acceptable and feasible CBR intervention for people with schizophrenia in rural Ethiopia was developed. The intervention includes:

Home-based support for individuals with schizophrenia and their families, including support accessing health services and with anti-psychotic medication adherence; support returning to work and community activities; and support dealing with stigma, discrimination and human rights issues
Community engagement, including awareness raising and facilitating access to community resources
Family support groups for families of people with schizophrenia

Impact summary

The RISE pilot found that:

CBR could be delivered to 10 people with schizophrenia and their families over 12 months
CBR may have a positive impact on functioning though enhanced family support, improved access to health care, increased income, and improved self-esteem
CBR was largely acceptable to CBR workers, people with schizophrenia, community leaders and health officers.

The 12-month RISE cluster randomized trial (involving 166 participants in 48 villages) is currently being analysed and will determine the effectiveness of CBR.

[The CBR participant] has a person helping him with food...another person covers his expenses for his medication…another person also gave him a place to stay. There are also people who are arranging to help him get a job. The CBR worker has played a big role in arranging for people to help him in every way and make him become successful.

- CBR supervisor

Innovation details

CBR Principles

Use a holistic approach, including social, livelihood, health, education and empowerment
Work with the family and the community
Encourage respect for human rights
Link to existing services where possible
Use a recovery oriented approach emphasising hope

Overview of CBR intervention

1. Family-based components

There are three intervention phases, which reflect the changing needs of participants over 12 months

Phase 1: Engagement (2 months)
Phase 2: Stabilisation (3 to 7 months)
Phase 3: Maintenance (8 to 12 months)

In Phase 1 all participants receive the following core modules, which reflect the core needs of most people with schizophrenia in this setting:

Understanding schizophrenia
Accessing health services
Preparing for a crisis
Dealing with Human Rights issues

At the beginning of Phase 2 and Phase 3, a detailed needs assessment is conducted. Structured goal setting is used to select appropriate goals for individuals from a pre-defined list. The goal selection determines which additional CBR modules the individual receives, from the following:

Supporting individuals to take medication
Improving physical health
Improving day to day functioning
Getting back to work
Dealing with stress and anger
Improving literacy
Dealing with stigma and discrimination
Taking part in community life
Improving the family environment
Taking control of your illness (relapse prevention)

The transition between phases is conditional on achievement of goals rather than specific time points.

2. Community mobilisation

Community mobilisation work runs alongside family-based components. It consists of:

Resource mapping
Community awareness raising
Engaging with community leaders and facilitating access to existing community resources
Identifying and linking participants to employment opportunities

3. Family support groups

Caregivers are invited to join family support groups. The groups offer mutual emotional support.

CBR workers

CBR workers have a minimum of 10 years of formal education and are from the local area. They have no previous experience in mental health work. CBR workers received 5 weeks training, covering theoretical and practical aspects of CBR for schizophrenia.

Interventions

CBR was delivered to participants and their caregivers at their home by a specialist CBR worker and included psychoeducation, adherence support, rehabilitation (including self-care and social skills), and family support groups. The intervention also included education and mobilisation of community leaders.

The comparison condition in this study was facility-based care (FBC), which comprised anti-psychotic medication prescribed by a nurse or clinical officer in a health centre and basic psycho-education, delivered as part of the PRIME mental health care plan.

Key drivers

Collaboration with established projects
The RISE project was nested in PRIME (PRogramme for Improving Mental healthcarE). As well as wider research infrastructure, being part of PRIME brought the benefits of collaboration with the Ethiopian Ministry of Health, and existing engagement with a community advisory board, the district health bureau and local health centres. Collaboration with CBM and RAPID (an Ethiopian CBR project) also ensured the RISE intervention was in keeping with CBR principles. Seeing how a CBR programme works in practice in Ethiopia was essential for designed the intervention and training the RISE CBR workers.

Extensive formative work
Nested within a Theory of Change framework, formative work was used to design an acceptable and feasible intervention. This involved in-depth interviews and focus group discussions (with people with schizophrenia, caregivers, community leaders, community health workers and CBR workers), two theory of change workshops and an intervention development workshop (including psychiatrists, CBR experts and a district health administrator).

Non-specialist workforce
Using non-specialist CBR workers specially trained for project means the intervention is more feasible for scaling up, given the lack of mental health specialists in this setting.

Challenges

Poverty
Poverty was the foremost problem for participants; the lack of financial benefit from CBR was a key acceptability issue in the RISE pilot. Though there were successes in supporting income-generation, important challenges also emerged including a lack of formal employment opportunities (one participant moved to the capital city to work).

Anti-psychotic medication availability
A key threat to the feasibility of CBR in the RISE pilot was the absence of continuously available and affordable medication with an acceptable side-effect profile. To maximise the potential impact of CBR, robust systems are needed to ensure there is continuous provision of psychotropic medication to primary care. Furthermore, anti-psychotic medication should either be made free or available through a workable and accessible health insurance scheme.

Lack of engagement with traditional healers
There was little engagement with traditional healers in the RISE pilot. Traditional healers may not have been identified by CBR workerss because this group is hidden from public life or due to reluctance by CBR workers. It is conceivable that participants hid their use of traditional healers from CBR workers due to taboo.

Continuation

By collaborating with CBM we have designed an intervention that meets the needs of, and is compatible with, CBR projects for other disabilities. This will provide evidence for integration of mental health into the large network of existing CBR projects run by NGOs. The RISE materials are freely available for use in other CBR/community mental health projects. We are currently exploring options for scaling up community-based psychosocial interventions for psychosis in Ethiopia, using the RISE CBR intervention as a base.

Partners

Programme for Improving Mental healthcarE (PRIME)
CBM (an international disability and development organization)
Rehabilitation And Prevention Initiative against Disabilities (RAPID) CBR project

Funders

Wellcome Trust Clinical PhD Fellowship in International Health granted to Laura Asher
PRIME is funded by the UK Department for International Development (DfID) for the benefit of LMIC (HRPC10)

Evaluation methods

The intervention feasibility and acceptability of the CBR intervention was assessed in a pilot study, then evaluated for effectiveness and cost-effectiveness in a cluster randomized trial.

Design

Pilot study covering 4 kebeles (villages). All kebeles received facility-based care (FBC) and community-based rehabilitation (CBR).
Cluster randomised trial with kebeles as the unit of randomisation. 48 kebeles were included. 24 were randomly allocated to the intervention arm (FBC+ CBR) and 24 randomly allocated to the control arm (FBC alone).

Primary objective

To determine whether CBR + FBC is superior to FBC alone in reducing disability related to schizophrenia, measured by the WHO Disability Assessment Schedule version 2.0 (WHODAS 2.0).

Secondary objectives

To determine whether CBR + FBC is superior to FBC alone in reducing clinical symptoms, reducing relapse, increasing medication adherence, improving economic activity, reducing human rights abuses, improving functioning as measured by an indigenous scale and improving nutritional status in people with schizophrenia.
To determine whether CBR + FBC is superior to FBC alone in reducing family burden and improving economic activity in caregivers of people with schizophrenia.
To evaluate the acceptability and feasibility of CBR delivered to people with schizophrenia and their caregivers.
To determine the cost-effectiveness of CBR + FBC compared to FBC alone.
To determine how and why CBR achieves its impact

Primary outcome

Disability in participant measured with 36-item WHODAS 2.0 at 6 months.

Secondary outcomes

WHODAS 2.0 at 12 months
Clinical symptom severity, number of relapses, medication adherence, functioning as measured by an indigenous scale, human rights abuses, nutritional status, economic activity in people with schizophrenia and their caregivers and family burden at 6 and 12 months

Cost of implementation

The cluster randomised trial will determine whether this intervention is cost-effective and therefore a potentially suitable investment for governments and other funders (including the Ethiopian Ministry of Health (MoH)).

Impact details

The RISE pilot found that CBR may have a positive impact on functioning though the pathways of enhanced family support, improved access to health care, increased income and improved self-esteem. CBR was acceptable to CBR workers, community leaders and health officers. Some CBR workers found it challenging to accept the choices of people with schizophrenia, and this was a threat to acceptability. These concerns were felt to be resolvable with supplementary training for CBR workers and increased flexibility of intervention delivery. The intervention was found to be feasible but further evaluation is needed on a larger scale.

The RISE trial data is currently being analysed to determine the effect of CBR on disability and other outcomes.