The Lived Experience of UK Forensic Carers of African-Caribbean Heritage Caring for Someone with Psychosis: An Interpretative Phenomenological Analysis

For more than six decades, African-Caribbean communities have faced mental health inequalities in the UK. This study focuses on carers of individuals detained in an NHS forensic mental health hospital (FMHH), most specifically on the experience of carers from racialised communities such as African-Caribbean heritage. This is because carers from African-Caribbean heritage are more likely to care for service users who are overrepresented in FMHH and have increased incidence of psychosis across all major psychotic disorders. To date, few studies have focused on forensic carers. The majority of research into caregivers’ experiences supporting a service user with psychosis in forensic settings has focused on caregivers who were white European parents, mostly mothers, and therefore the evidence base is built on a particular political, economic and social and cultural context.

Therefore, the present qualitative study aimed to explore the lived experience of forensic carers of African-Caribbean heritage who support an individual with psychosis in an FMHH. Seven participants were purposively recruited and participated in semi-structured interviews. An interpretative phenomenological analysis found four superordinate themes: 1) The role is “too much for humanity”: Emotional, physical and relational challenges, 2) Cultural and Community – Norms and Values, 3) It is a Terrible Battle Relating to Services and Professionals and 4) Ways to Survive the Emotional Demands of the Role.

The findings highlighted participants’ caregiving roles impacted various aspects of their lives. Also, participants’ caregiving behaviour and attitude within FMHH were influenced by culture and the social-political context of living in the UK. Furthermore, participants’ relationship with forensic services and professionals was problematic, overshadowed by fear and mistrust given their experience of institutional racism. Additionally, a lack of information and power imbalance between carers, professionals and services acted as barriers to adequate care within FMHH. Caregivers used several strategies to survive the emotional demand of the role.

It is crucial that the needs and values of this group of carers are recognised to offer services tailored to cultural, political, and social contexts. Implications for clinical practice, service delivery, strengths, and limitations as well as future research directions are discussed within these contexts.