Supporting Black Carers

Family carers of Black people with psychosis are essential to their wellbeing but often face challenges themselves related to high levels of stigma, and a lack of information and community support. And with their loved ones 40% more likely to access mental health services via police and court involvement, they have well-founded fears of harsh and unequal treatment.

We funded a research project into the needs of Black carers led by Dr Juliana Onwumere, clinical psychologist at King’s College London. It aims to improve health outcomes for Black people living with psychosis by designing support for the people who look after them – often Black women who are wrongly assumed to be especially resilient and to benefit from wider family and community support.

The project team created an advisory group of passionate community members to help shape their engagement. They met people where they were most comfortable, mostly in the evenings, flexing around jobs and caring commitments, using accessible language and giving them the time and space to express their views. Crucially, they reached beyond carers already engaged with the NHS Trust, and beyond them to backup carers for family members with primary responsibility.

Carers expressed how unheard, isolated and disrespected they felt by the systems that are supposed to provide care and act as their safety net, and based on their suggestions, the project team extended invitations to their loved ones who experience psychosis, health care professionals, police, and representatives of faith organisations.

Key insights emerging from the project indicate that the lack of accurate information about mental illness and the mental health care system is one of the biggest challenges carers face. Given that the first onset of psychosis often occurs in adolescence and young adulthood, families grieve a perceived loss of future work and life prospects. A programme of education about the symptoms and treatment of psychosis would go a long way to alleviate their fear and confusion.

Faith can play a big role in Black communities, and carers may use the lens of religious practice to come to terms with their loved ones’ symptoms. These practices can be wrongly seen as incompatible with modern medical approaches, so carers felt it important that their perspectives are not dismissed by clinical staff just because of the language they use or the beliefs they hold.

One welcome but unexpected result of the project came out of the attendance of a representative of the Metropolitan Police at a feedback session in September 2024. Taking on board the expressed lack of trust that Black communities have in the Force and the concerns and suggestions of the group, they are now developing a training module as part of their anti-racist work with the Trust and are in dialogue with Dr Onwumere about how best to deal with Black families and carers. The project team and participants also shared their reflections on the project in a podcast, and at the 2024 Anti-Racism in Healthcare Conference at the University of Sussex.

Dr Onwumere has progressed to developing a protocol for Black carers based on everything she learned during the project which she hopes to be able to trial in a further phase.