‘We Need Help Too’—The Forgotten Stakeholders: Exploring the Needs of Carers During Their Young Persons' Transition From Child to Adult Eating Disorder Services
Isabel Lenham, Maria Livanou, Anya Heneghan, Grace Hill, Alanta McKenzie, Marta Marlais, Francesca Marshall, Zara Smalley, Eleni Xanthopoulou, Nora Kornai, Jessica Wilks, Ailsa McKay, Jun Teh, Julian BaudinetABSTRACT
Background
Carers are essential in their young person's recovery during transition from child to adult eating disorder services. Despite recommendations, carer's own needs can be overlooked in transition planning. Subsequently, carers experience distress in supporting their young person and navigating the transition. This study is part of the initial phase of a larger co‐production project aiming to develop a new intervention supporting young people with eating disorders and their families in transitioning to adult services. This study explored the lived experiences of carers to deepen our understanding of carers experiences and needs during the transition.
Method
Eleven semi‐structured interviews were conducted online, with carers who had experience of their young person transitioning from child and adolescent to adult eating disorder services, across two NHS sites in England.
Results
Reflexive Thematic Analysis was used to analyse the data and five key themes were generated: (1) the forgotten stakeholders, (2) navigating the transition in the dark, (3) managing the intricacies of transition, (4) a plethora of service criteria and (5) negotiating the power dynamics.
Conclusions
Carers continue to articulate concerns that corroborate and reinforce the wider transitional care literature, with few carers feeling supported in the process. Prioritising the co‐development of interventions supporting carers wellbeing during transition is key to ensure carers distress is not perpetuated.