Supporting young carers at the end of life and into bereavement

Marie Curie Palliative Care Research Centre based at Cardiff University

Family members play a vital role caring for their terminally ill relatives. In some families much of this care is provided by young people, described as young carers (aged under 18) or young adult carers (aged between 18 and 25). These carers have different experiences and needs to older adult carers, including during bereavement, but more research is needed to understand how to improve the support provided to them at these difficult times in their lives.

This project will explore the experiences and support needs of young/young adult carers who are caring for a relative who is terminally ill, and when they become bereaved. We will host two online focus group discussions with former/bereaved young carers and two groups with bereaved young adult carers. We will also conduct a short survey, followed by one or two focus group discussions with health, social care and other professionals and organisations who provide support to young/young adult carers and their families at the end of life and in bereavement.

The focus group discussions will explore young carers’ experiences of caregiving and bereavement, as well as professionals’ experiences of supporting these families. The survey of professionals and organisations will also look at the support given to this group of carers, including challenges and examples of good practice. Participants in the focus groups and survey will be asked for their views on what support is most needed by young carers and how these needs might be better met by services.

The project will identify implications for improving the support that is currently provided to young/young adult carers, and areas for future research and innovation. It will also help to share learning and knowledge across different professional groups and organisations.