Aims Developing self-management skills is part of growing up for many young people with long-term conditions (LTCs) such as chronic kidney disease (CKD). However, young people can find it challenging to become independent at managing their LTC and there is limited evidence for how health-care professionals (HCPs) can support this process. This study aimed to find out how young people take on responsibility from their parents for managing their CKD and the HCP’s role during this process.
Methods A qualitative study, using a grounded theory approach. In-depth individual and dyad interviews were conducted with nine young people aged 13-17 years old with CKD, 11 parents and ten HCPs from renal multidisciplinary teams. Participants were recruited from two UK children’s renal units.
Results The transfer of self-management responsibility between young people, parents and HCPs is a fluid and bi-directional process. Both parents and HCPs view it is as their ‘job’ and believe they have a responsibility to support the young person to become more involved in their health-care. Opposing tensions contribute to the complexity of the process, including: 1) Timing: parents consider the process of handing over self-management responsibility within a wider context of their child growing up and gaining independence. However, transition frameworks and statutory responsibilities impact on how HCPs support the transfer of responsibility and means that timing is service-led, rather than based on family’s needs. 2) Approach: young people, parents and HCPs appear to have different priorities and approaches; families initially focus on what self-management activities the child can ‘do’, whereas HCPs’ starting point looks at what the child ‘knows’. 3) Outcome: differing understandings and expectations around ‘effective’ self-management and what it means to be responsible can impact on what young people, parents and HCPs each hope to achieve.
Conclusion The parent-to-child transfer of self-management responsibility is a complex process, shaped by various tensions. Establishing positive relationships between young people, parents and HCPs through building and maintaining trust appears essential in supporting young people to develop independence in managing their LTC.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.