Co-producing social and community support resources for family carers of people with psychosis (OSMOSIS)

Background: A carer is defined as someone who provides unpaid care to a loved one who would not be able to manage without it. Population changes such as increased life expectancy and the increase in health and mental health difficulties has meant that more people are stepping into a caring role. Being a carer is associated with a range of deleterious outcomes for the carer themselves, but the nature of these can vary depending on the person they are caring for. Caring for someone with psychosis presents unique challenges that include facilitating and advocating for their engagement with services. It is important to ensure these carers are adequately supported. The provision of this support is the responsibility of Local Authorities (LAs) under the Care Act in partnership with voluntary sector organisations and the NHS, but support currently available is often not tailored to the specific needs of psychosis carers. Aims and objectives: To identify support available to psychosis carers via LAs and their partners, and any gaps or unmet needs (WP1). Understand how psychosis carers and staff experience available support, including barriers and facilitators of good support (WP2). Co-produce resources and toolkits to improve the support available to psychosis carers (WP3). Methods: We will work with LAs, their partner organisations, and psychosis carers across three LAs (sites). WP1: We will use a variety of search methods to identify support available to psychosis carers via LAs and their partners. We will seek to identify examples of good practice, as well as where needs are unmet. WP2: Using interviews and focus groups we will conduct a qualitative study with psychosis carers and the staff to understand their experiences of support provision. We will probe for barriers and facilitators in engaging with and delivering support. WP3: We will take the learning from WP1/2 to identify gaps in provision. We will establish site-specific working groups of psychosis carers and staff to co-produce resources/actions to address agreed-upon priority needs. The working groups may also develop additional resources or toolkits to facilitate the uptake of what they produce. The project will be guided by three groups that reflect the parties in the Triangle of Care model: (1) carers, (2) people with psychosis, and (3) staff. Timeline: 30 months. WP1/2 will run concurrently and feed into each other – both lasting just over a year. The remaining timeline will be dedicated to analysis and WP3. Impact and dissemination: While the exact nature of the outputs from this project are to be decided, their purpose will be to improve the support available to psychosis carers. Because we work collaboratively with LAs and their partners from the outset considering the local context and pressures, and have agreement at each site to adopt the co-produced outputs in various creative forms (e.g. videos, podcasts), we anticipate a positive impact on the wellbeing of psychosis carers. Project findings will be disseminated via traditional academic routes, as well as via various media including info-graphic newsletters and presentations to carers, carer organisations, and LAs.