*Text by Hufsa Sarwar, PIECEs Research Coordinator
When our team first started brainstorming ideas around engaging the wider community through the PIECEs project, we were very clear on one thing: it was imperative to put the voices and experiences of people with lived experience of psychosis front and center and make sure that our engagement strategies are relevant and representative to our stakeholders and target populations. This sentiment is echoed through the rest of activities taking place within the project; the Lived Experience Advisory Panel which overlooks and guides the research team, the Theatre of the Oppressed workshops involving people with psychosis and caregivers, and the adaptation of the DIALOG+ app based on feedback from both services users and healthcare providers. We therefore decided to hold a Theory of Change session with a group of people with psychosis, caregivers, and healthcare providers in Pakistan to identify key challenges to support contextual solutions, and to build capacity towards a user-led and participative approach to mental health research and advocacy.
Theory of Change (ToC) is essentially a method which aims to explain how different components of a programme can lead towards a specific impact or the required change. It works on mapping out the various outcomes, interventions, indicators, rationales and assumptions one needs to be aware of to properly design and implement an evidence based programme or strategy. Since our group consisted of people with differing academic and educational experiences and backgrounds, we tried to simplify the concepts and focus the discussion around the experiences and wishes of our stakeholders within the existing system and communities that they inhabit. Co-production is a novel concept in mental health programming for psychosis within Pakistan, and taking a lead in planning different aspects of a major programme even more so for our participants.
Initially, many seemed confused; however, when the research team started asking them about their daily experiences they bloomed and started expanding upon the challenges they faced, and to which they desperately wanted solutions. People with psychosis shared that they wanted to have better treatment outcomes, achieve independence and self-reliance in their overall lives, and be able to integrate within a society which was better educated on their condition. Healthcare workers discussed how they wanted to see a visible impact on healthcare systems, with more accountability and efficient methods in place. The caregiver group, which was extremely passionate and invested in the discussion, said that they wanted to see their family members with psychosis thrive and be able to contribute meaningfully to society, and lead happier and healthier lives. They also stated the importance of accessibility to mental health services for all – caregivers need extensive support as well, along with increased social engagement and reduced stigma for both people with psychosis and their families.
The two-day session opened our eyes to many of the hidden challenges that all three stakeholder groups face; it was also a space for them to share their own thoughts around potential solutions for these issues. This was an opportunity for both the research team and participants to start developing a co-produced model for community engagement with effective, equitable, and appropriate packages of care which can utilise and strengthen access to community resources and break through the existing power dynamics. We hope to continue engaging with the wider community and amplify their voices as we start implementing our interventions.