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

Nightingale, Ruth; McHugh, Gretl A.; Swallow, Veronica; Kirk, Susan

doi:10.1111/hex.13549

Cited by 5 publications

(16 citation statements)

References 38 publications

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“…Further details about the grounded theory, core category and subcategories have been reported previously. 12 This paper focuses on a specific aspect of the second subcategory, making changes, to explain how young people's, parents'…”

Section: Resultsmentioning

confidence: 99%

“…elsewhere. 12 T A B L E 3 PPI contributions F I G U R E 1 Supporting the parent-to-child transfer of self-management responsibility…”

Section: Resultsmentioning

confidence: 99%

“…Participants were assured of confidentiality and anonymity. In the data extracts presented, participants are identified by the type of participant (young person, parent, HCP) and the participants' numerical study identifier (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20). The young person's age and gender are included in the data extracts to provide contextual information.…”

Section: Ethical Issuesmentioning

confidence: 99%

“…As reported previously, HCPs tended to view the transfer of responsibility as part of the transition between child and adult services. 12 Consequently, UK transition guidance shaped HCP involvement, including the importance of young people attending clinic appointments without their parents. 8,38 Consistent with previous research, young people in this study valued meeting with HCPs on their own, as they felt more able to talk openly without their parents present.…”

Section: -Year-old Girl)mentioning

confidence: 99%

“…8,9 Consequently, healthcare professionals (HCPs) tend to view the assumption of self-management responsibility as a process that starts when the young person is around 13 years old and ends with the transfer to adult services. 10 Studies suggest, however, that families can start this process at an earlier developmental stage, 6,11,12 and some guidelines recommend that HCP support to develop self-management skills should start in early childhood. 4 This uncertainty around the optimal time for children to assume responsibility is compounded by studies highlighting adolescents' difficulties engaging in self-management, resulting in adverse consequences for their health.…”

Section: Introductionmentioning

confidence: 99%

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Supporting the parent‐to‐child transfer of self‐management responsibility for chronic kidney disease: A qualitative study

Nightingale

Kirk

Swallow

et al. 2022

Health Expectations

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IntroductionAs children with long‐term conditions (LTCs) mature, they are usually expected to assume responsibility from their parents for self‐management of their condition. Little is known about what supports families with this handover of responsibility, including the role of healthcare professionals (HCPs). This study aimed to explore what supports young people with chronic kidney disease (CKD) to assume self‐management responsibility and parents to relinquish control.MethodsA qualitative study, using a grounded theory approach was conducted. Individual and dyadic interviews and focus groups were carried out with 16 young people aged 13–17 years old with CKD, 13 parents, and 20 HCPs. Participants were recruited from two UK children's renal units.FindingsBuilding and maintaining trust, fostering positivity, learning from mistakes, forming partnerships and individualized support, facilitated the transfer of self‐management responsibility. However, HCPs' focus on developing partnerships with young people meant some parents felt excluded, highlighting uncertainty around whether support should be child‐ or family‐centred. Although tailored support was identified as critical, aspects of local service provision appeared to impact on HCPs' capacity to implement individualized approaches.ConclusionThis study has identified what supports the handover of responsibility, and, importantly, HCPs' current, and potential role in helping young people to assume responsibility for managing their LTC. Further research is needed to explore how HCPs' involvement balances child‐ and family‐centred care, and how HCPs can adopt personalized, strengths‐based approaches to help ensure the support that families receive is tailored to their individual needs.Patient or Public ContributionPatient 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.

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Section: Resultsmentioning

confidence: 99%

“…elsewhere. 12 T A B L E 3 PPI contributions F I G U R E 1 Supporting the parent-to-child transfer of self-management responsibility…”

Section: Resultsmentioning

confidence: 99%

Section: Ethical Issuesmentioning

confidence: 99%

Section: -Year-old Girl)mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Supporting the parent‐to‐child transfer of self‐management responsibility for chronic kidney disease: A qualitative study

Nightingale

Kirk

Swallow

et al. 2022

Health Expectations

Self Cite

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Parent and adolescent perceptions of cystic fibrosis management responsibility: A mixed‐methods study

South

Smaldone

Sadeghi

et al. 2023

Pediatric Pulmonology

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Background: Adolescents with cystic fibrosis (CF) and their parents must navigate changing roles and responsibilities within the family including transfer of disease management responsibilities.Aim/Objective: The aim of this qualitative study was to explore how families share and transfer CF management responsibility from the perspectives of adolescents with CF and their parents. Methods: Guided by qualitative descriptive methodology, we purposively sampled adolescent/parent dyads. Participants completed two surveys measuring family responsibility (Family Responsibility Questionnaire [FRQ]) and transition readiness (Transition Readiness Assessment Questionnaire [TRAQ]) We conducted semistructured video or phone interviews, used a codebook to guide team coding and analyzed qualitative data using both content analysis and dyadic interview analysis.Results: Thirty participants (15 dyads) enrolled (7% Black; 33% Latina/o; 40% female; adolescent age 14.4 ± 2 years; 66% prescribed highly effective modulator therapy; 80% of parents were mothers). Parent FRQ and TRAQ scores were significantly higher than their adolescent indicating differing perceptions of responsibility and transition readiness. We inductively identified four themes: (1) CF management is a delicate balance (CF management is a routine which is easily disrupted), (2) Growing up and parenting under extraordinary circumstances (the burden of CF weighs on families as they navigate adolescence), (3) Differing Perceptions of risk and responsibility (adolescent and parent perceptions of treatment responsibility and the risks of nonadherence do not always align), and (4) Balancing independence and protection (families must weigh the benefits and risks of allowing adolescents increased independence).Conclusions: Adolescents and parents demonstrated differing perceptions of CF management responsibility, which may be related to a lack of communication between family members about this topic. To help facilitate alignment of parent and adolescent expectations, discussion of family roles and responsibility for CF

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Parental entrustment of healthcare responsibilities to youth with chronic conditions: A concept analysis

Pitts,

Patrician,

Landier

et al. 2024

Journal of Pediatric Nursing

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

Cited by 5 publications

References 38 publications

Supporting the parent‐to‐child transfer of self‐management responsibility for chronic kidney disease: A qualitative study

Supporting the parent‐to‐child transfer of self‐management responsibility for chronic kidney disease: A qualitative study

Parent and adolescent perceptions of cystic fibrosis management responsibility: A mixed‐methods study

Parental entrustment of healthcare responsibilities to youth with chronic conditions: A concept analysis

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