Preliminary Evaluation of Brain Gain
Given the fact that a new model was being co-created, the evaluation necessarily took in a variety of qualitative and quantitative measures and, in keeping with the principle of use involvement, PSWs were heavily involved. Early evaluation data revealed the training programme was effective in readying participants to become PSWs. The ‘Recovery Star’, a 10 point Likert scale tool measuring in 10 life domains (managing mental health, living skills, social networks, work, relationships, addictive behaviour, responsibilities, identity and self-esteem and trust and hope) (Donnelly et al. 2011) was then utilized. Although primarily a tool to promote individual planning, data can be aggregated as a means of monitoring changes in a population over time.
Completion of a Recovery Star showed definite improvements were felt for PSWs in areas related to identity, self-esteem, physical health and self-care, plus some indication that social networks, trust and hope were positively affected (Baillie et al. 2013). PSWs increasingly agreed that environmental factors can contribute to patient aggression and violence and that alternatives to the use of containment and sedation to manage patient violence could be used more frequently.
Six semi-structured interviews of recipients of peer support work were carried out by an independent evaluator to understand the impact of PSW (Baillie et al. 2013). This pointed to an increased sense of hope, inspiration and encouragement, combined with distinct learning about their mental health conditions. There were also positive changes to family relationships and experiences of stigma (Box 30.2). The following quote from Grace, a 37-year-old recipient of peer support provides an example of the perceived benefits that PSW offered:
Box 30.2 PSW care in action
Godfrey is a 35-year-old man living with his parents in Luzira. With experiences of psychosis and alcohol abuse, he has had 16 admissions to Butabika Hospital since 1998. He was referred from Biina Ward and met his PSW for the first time at the Hospital PSW office.
The PSW noticed that Godfrey struggled with his alcohol cravings and felt a lot of anxiety and loneliness. He also had difficulties with his family who had stripped him naked to stop him leaving the house to drink or when his behaviour was difficult. The PSW talked about Godfrey's hope to work again and gave reassurance and listening time. This living example of recovery reassured and inspired Godfrey and his family. Within whole family discussions the PSW shared salient elements of her experience.
The PSW then met Godfrey at home on numerous occasions. At times, family members were also present, and the PSW facilitated discussion with them about how they could best support Godfrey moving forward. Godfrey was thankful for the help and saw the PSW as a role model for what is possible. Godfrey's father was invited to the Hospital Carers group. Godfrey relapsed several months after leaving hospital, but the peer worker maintained contact through meetings and assisted him to avoid a hospital admission through encouraging him to reduce his alcohol use and set some basic recovery goals. Godfrey's family members were happy with this support and also agreed to see the psychologist as a group to consider how this could help Godfrey. The PSW also introduced Godfrey to a peer worker with experience of alcohol addiction.
*Names and some details changed here and in the rest of the chapter to ensure anonymity
They have given me support, as in emotionally and socially, one of it is that they give me courage, they come around and they talk to me about hope, about what is really good, what I can attain.
Focus groups of PSWs at the end of the project indicated increased confidence and self-worth, much mutual learning and personal development (Baillie et al. 2013). PSWs felt a sense of belonging, pride in their success and ability to offer hope, and a newly empowered stance on stigma and gaining future work opportunities. The following quote provides an example of how PSWs appraised their experience. Paul, a 45-year-old peer worker said:
My family see me as a success story. Work in a hospital, can contribute to my family; they see hope in me, in my dealings with them and with my future. I’m not the man who stays in bed while my wife is doing everything.
In relation to the challenges experienced by PSWs, focus groups (Butabika East London Link 2013a) revealed how building initial engagement and trust with peers was at times difficult, as was operating within the limited financial facilitation provided by the project. Furthermore, PSWs’ personal experiences of poverty made refusing peer requests for resources more challenging.
Whilst working with families provided opportunities for constructive progress, it could also lead to tension and frustration when families discouraged PSWs or behaved in unhelpful or even abusive ways. As such, the PSW’s role provided not only practical difficulties but also psychological challenges related to the responsibilities and expectations it held. Josephine said:
Linking up with peers, meeting up with new peers is very challenging. They don’t understand what you’re talking about or what you want. It’s hard to engage them so they trust and believe you. Eventually you can overcome this.
Staff also highlighted the issue of how the incorporation of the PSW cadre raised potential problems of accountability, consistency and quality of health message and behaviour. There was a shared belief that a greater degree of supervision and support was necessary to assure the work of the PSWs. Staff focus groups described an institutional increase in optimism, a decrease in stigma in the hospital, improved communication between users and professionals, positive teamwork and equality between PSWs and the team most involved in the programme (Butabika East London Link 2013b).
Prossey, 34, who worked as a PSW said:
Before, the patients would leave and hide in the community so they (professionals) would never see the end result. But now they see recovery and this makes them happy. It’s amazing their attitudes have changed.
