Nightingale, R, McHugh, GA orcid.org/0000-0002-5766-5885, Swallow, V et al. (1 more author) (2022) Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self-management of their chronic kidney disease. Health Expectations, 25 (4). pp. 1919-1929. ISSN 1369-6513
Abstract
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 healthcare 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 with CKD, 13 parents and 20 HCPs.
Findings
A grounded theory, shifting responsibilities, was developed that provides 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 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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2022 The Authors. This is an open access article under the terms of the Creative Commons Attribution License (CC-BY 4.0), which permits unrestricted use, distribution and reproduction in any medium, provided the original work is properly cited. |
Keywords: | child, chronic illness, grounded theory, long‐term condition, parent, qualitative, self‐ management |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Healthcare (Leeds) > Nursing Adult (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 01 Jun 2022 15:34 |
Last Modified: | 25 Jun 2023 23:00 |
Status: | Published |
Publisher: | Wiley Open Access |
Identification Number: | 10.1111/hex.13549 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:187566 |