Using creative methods to understand the needs and priorities for Young Adult Carers

Background: Most recent data estimates that about 9% of young adults aged 16–29 provided care in the UK, and more than half of these provided care for 2 years or more.1 Being a Young Adult Carer (YAC) can come at a high personal cost. For example, 16 to 25 year olds who provided unpaid care have poorer mental and physical health and worse employment outcomes compared to peers without caring responsibilities.2 Little is known about how YACs access support, the quality of support available, and how culturally or personally relevant these services are. Therefore, it is critical to understand the support needs of YACs to help improve the identification of and support for this population in order to help address inequalities in outcomes.3 In this study, we used participant derived photo elicitation to understand YAC support needs, and to co-develop priorities for future research.

Materials and Methods. This study involved two stages:

Phase 1: We facilitated two in-person photo elicitation workshops, with five YACs in each group, to explore and identify YAC needs for support and priorities for research. Participants were offered the opportunity to take photographs during the workshop, but all opted to use photos that were already taken and stored on their smartphones. Discussions explored experiences of YAC support, suggestions for improvement, and priorities for future research. The discussions were audio recorded, transcribed, and support needs were extracted.

Phase 2: We facilitated an online workshop with five different YACs to share and discuss the support needs that were established in the photo-elicitation workshop, and to use this knowledge to produce a ranking of YAC priorities to guide future research. We used Slido (an online audience interaction tool) to record rankings. The online session was also recorded and transcribed.

Participants were offered a £20 voucher as a token of appreciation.

Results. The support needs that were identified in the photo elicitation workshops were: a) more support in school settings, b) greater financial support for YACs, c) development of YAC’s identity beyond caring role, d) support for YACs moving into work, university or other roles post-18, and e) support to improve health and wellbeing.

When these were presented at the online workshop, the YACs ranked health and wellbeing, financial support, and identity as the most important priorities for future research. Specific topics for research within these broad areas were also discussed and ranked. The top research priority for health and wellbeing was improving access to emotional/psychological support, for financial support the top research priority was enabling access to financial support for household expenses, and for YAC identity, the top research priority was support to explore own interests and ambitions beyond their caring role.

Conclusions. YACs experience a range of support needs. Despite support being available in school settings and through voluntary and community services, the experience of this support varies, and not all YACs access this support. Further research should explore how support can be made more available, standardised across settings, and developed from a user-led perspective.