Research project – Ethnic Minority Backgrounds: Reflections on Access, Care & Experiences (EMBRACE)

The number of children diagnosed with a life-limiting condition is increasing globally, with the number of parents providing extensive home-care for their child growing in tandem.

Existing research highlights the extensive challenges experienced by these parents, not only in practically coordinating their child’s care, but in managing their own physical and mental health. They are statistically more likely to suffer anxiety, depression, post-traumatic stress, heart problems, back problems, arthritis and other negative health outcomes. Despite this, there is limited support available to help them. There is an overwhelming need for services that can identify and address the health and wellbeing needs of this population – providing benefit to the parents themselves and also the child and wider family.

Although the National Institute for Health and Care Excellence (NICE) calls specifically for interventions to support parent-carers in this population, and the body of research is increasing, a major limitation is the underrepresentation of ethnic minority parent-carers within studies. In the UK ‘ethnic minority’ refers to all groups aside from White British, including Asian/Asian British, Black/Black British, Mixed, White other, and Other. It also encompasses White minority groups such as Gypsy, Roma, and Irish Traveller. We know very little about ethnic minority parental perspectives of providing care for a child with a life-limiting condition, interactions with services, parents’ own health and wellbeing and their experiences and preferences for support.