Innovation summary

Without a robust, community-level workforce, health systems cannot support service users after they have been discharged from inpatient care. Meanwhile, service users face stigma, discrimination, and a lack of economic, training, and social opportunities when they return to their communities.

HeartSounds Uganda engages a new cadre of lay mental health worker called peer support workers (PSWs). PSWs are “experts by experience” who are empowered to take an active role in the provision of mental health care by supporting and advising fellow service users and their families. Key features of this innovation include:

  • Training of PSWs using innovative narrative methods
  • Allocation of clients on a geographic basis, allowing PSWs to visit clients at home
  • Engagement of families and provision of psychoeducation by PSWs
  • Participation of PSWs in outpatient and some inpatient and community outreach services, for a better continuum of care
  • Fortnightly meetings for PSWs to support each other in service delivery

Impact summary

  • PSWs have conducted 500+ home visits across Kampala
  • There are 36 peer workers who have benefited from the training (showing significant change in terms of self care, trust, identity and self esteem), work and social opportunities
  • Two year pilot costs $44,800 USD
I now ask the how questions and not the why questions: ‘What can I do for my recovery and others? How can I help myself and others?’ Not the, ‘Why me? Why did I suffer mental problems?’
- HeartSounds PSW

 

Innovation details

The peer support program of HeartSounds Uganda is a two-year pilot developed collaboratively by mental health professionals and people with lived experience of mental illness in Uganda. It was designed to create a continuity of care between inpatient and outpatient services without overburdening existing mental health specialist staff.

The reasons for engaging peer support workers are numerous:

  • Service users benefit from training, socialization, and  employment as PSWs
  • Recently discharged service users and their families receive sympathetic psychosocial support
  • PSWs serve as “role models” of recovery, inspiring clients and reducing stigma in the community
  • Services benefit from increased involvement of consumers

PSWs were central not only to the creation of the program, but also to ongoing training, service delivery and administration. Hospital staff provide some additional support and supervision, but the program is largely driven by service users. PSWs carry out the following roles:

  • Serve at Butabika Hospital (the National Referral Office), manning the office, leading group discussion and identifying potential recipients of peer support services
  • Accompany the existing community mental health team for outreach and conduct independent home visits
  • Support each other through fortnightly meetings
  • Trained to provide primary care support for people recently discharged from hospital and their families, using:
    • Narrative methods such as “Tree of Life”
    • Communication skills
    • Recovery concepts
    • Wellness Recovery Action Plans
    • Guidance around self-disclosure

Key drivers

Strong partnership

  • The working relationship between Heartsounds Uganda and Butabika Hospital was very flexible and constructive.

Engagement of service users

  •  Empowering those with lived experience to deliver a service not only succeeds in bringing care and knowledge to recently discharged patients but also in challenging stigma at a personal and community level
  • Referring to those with lived experience to inform decisions helped to create confidence and belief in their own expertise
  • The co-creation of the scheme empowered service users to be active in developing and extending the scheme
  • Creating opportunities for those with lived experience to help manage and administer the project helped to foster ownership and pride while reducing the workload of overburdened staff

Challenges

Initial resistance

  • There was initially some staff resistance, with few clients referred into the scheme
  • After the first training, some PSWs were nervous about beginning work

Need for capacity-building

  • Limited literacy of some PSWs made record-keeping a challenge
  • PSWs who aided in administration and finance would have benefited from training specific to these roles

Cost of communication

  • During planning, the cost of communication and visits between PSWs and clients was underestimated. As a result, PSWs received only negligible financial benefits

Starting from scratch

  • Relationships between key stakeholders had not been fully established when the scheme started

Continuation

Initial discussions with the Ugandan Ministry of Health have taken place to consider replicating this model in other locations around Uganda.

HeartSounds is working with the Butabika LinkHackney and City Mind and International Medical Corps to link service users participating in peer work schemes around the world, so that expertise can be better shared across national boundaries.

Partners

HeartSounds is a project of The Butabika Link, a partnership between Butabika Hospital (Uganda) and East London National Health Services Foundation Trust (UK).

Funders

Evaluation methods

Evaluation of impact on peer support workers

The impact of this intervention on client outcomes is still undergoing evaluation. However, the intervention has been evaluated from the perspective of the PSWs using a mixed-methods design. Methods of data collection included:

  • Standardized questionnaires (demographics, social functioning, income) delievered to 14 PSWs
  • Nottingham questionnaire delivered to 14 PSWs
  • Semi-structured interviews between an independent psychologist and half of the first 12 PSWs
  • Focus group discussions with staff, peer workers from both cohorts, administrators of scheme, and managers of Butabika Hospital

Qualitative data from the evaluation is currently being assessed using thematic analysis.

Evaluation of training

Part of this evaluation examined PSW training. Training took place in two phases. The second training (for a cohort of 14 PSWs) was evaluated through the following:

  • Pre- and post-training questionnaires
  • Readiness to work likert scales specifically measuring confidence, knowledge and skill perceptions
  • Outcome Recovery Star measuring health outcomes and recovery

Cost of implementation

Costs over two years totaled $44,800 USD.

Impact details

Access to services

  • 29 service users trained as PSWs
  • PSWs have been provided to 28 existing Kampala mental health outreaches that see between 100-200 attendees on each occasion
  • 500+ home visits have been provided where previously no community-based services existed
  • Support and information provided on wards and at Occupational Therapy Department of Butabika Hospital, which provides care to 900+ service users

Impact on PSWs

  • PSWs report change in self-care, trust, identity, and self-esteem following training and experience as peer workers
  • PSWs describe reductions in stigma (both self-stigma and external stigma) and improvements in self-awareness and sense of purpose, hope and belonging
  • PSWs experience a general increase in economic status; two have found new employment

Impact on clients

  • Ongoing interviews with clients suggest PSWs provide constructive assistance, hope and expertise; further analysis forthcoming

Impact on other staff

  • Staff  working alongside peer workers describe changes in their relationships with service users that included an increased sense of equality and friendliness and an improvement in the quality of conversation about mental health treatment
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Uganda

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