Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self-management of their chronic kidney disease

Introduction: The responsibility for managing a long-term condition (LTC) such as chronic kidney disease (CKD) typically transfers from parent to child, as children become older. However, children can find it challenging to become independent at managing their LTC and evidence for how health care professionals (HCPs) support transfer of responsibility is limited. This study aimed to explore how young people with CKD assume responsibility for managing their condition and the HCP’s role during this process. Methods: Sampling, qualitative data collection and analysis were guided by a constructivist grounded theory approach. Individual and dyadic interviews, and focus groups, were conducted with 16 young people aged 13-17 years old with CKD, 13 parents and 20 HCPs. Findings: A grounded theory, shifting responsibilities, was developed that produces new insights into how young people’s, parents’ and HCPs’ constructions of the transfer of responsibility differed. These diverse constructions contributed to multiple uncertainties around the role of HCPs, when the process started and was completed, and whether the endpoint of the process was young people’s self-management or young person-parent shared management. Conclusion: Families would benefit from HCP support over a longer timeframe, that integrates assuming self-management responsibility with gaining independence in other areas of their lives and focuses on young people ‘doing’ self-management. Patient or Public Contribution: Patient and public involvement (PPI) was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study’s design and delivery.