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Child and parental perspectives on communication and decision-making in pediatric chronic kidney disease: a focus group study

Gutman, T; Hanson, C; Bernays, S; Craig, J; Sinha, A; Dart, A; Eddy, A; ... Tong, A; + view all (2018) Child and parental perspectives on communication and decision-making in pediatric chronic kidney disease: a focus group study. American Journal of Kidney Diseases , 72 (4) pp. 547-559. 10.1053/j.ajkd.2018.05.005. Green open access

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Abstract

Background & Objectives: Effective communication and shared decision making improve quality of care and patient outcomes but can be particularly challenging in pediatric chronic disease because children depend on their parents and clinicians to manage complex health care and developmental needs. We aimed to describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision making. / Study Design: Qualitative study. / Setting & Participants: Children with CKD (n = 34) and parents (n = 62) from 6 centers across 6 cities in Australia, Canada, and the United States participated in 16 focus groups. / Analytical Approach: Transcripts were analyzed thematically. / Results: We identified 4 themes: (1) disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship, and inadequacy as technicians), (2) recognizing own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, and empowering participation in children), (3) striving to assert own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, and struggling to voice own preferences), and (4) managing child’s involvement (respecting child’s expertise, attributing “risky” behaviors to rebellion, and protecting children from illness burden). / Limitations: Only English-speaking participants were recruited, which may limit the transferability of the findings. We collected data from child and parent perspectives; however, clinician perspectives may provide further understanding of the difficulties of communication and decision making in pediatrics. / Conclusions: Parents value partnership with clinicians and consider long-term and quality-of-life implications of their child’s illness. Children with CKD want more involvement in treatment decision making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable him or her to become a partner in decision making and prepare him or her for adulthood. Collaborative and informed decision making that addresses the priorities and concerns of both children and parents is needed.

Type: Article
Title: Child and parental perspectives on communication and decision-making in pediatric chronic kidney disease: a focus group study
Open access status: An open access version is available from UCL Discovery
DOI: 10.1053/j.ajkd.2018.05.005
Publisher version: https://doi.org/10.1053/j.ajkd.2018.05.005
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Shared decision-making, adolescents, childhood disease, chronic disease, chronic kidney disease (CKD), communication, dialysis, end-stage renal disease (ESRD), focus group, involvement, mismatched priorities, parent-child interactions, participation, patient-centred care, pediatrics, physician-patient communication, qualitative research, transplant, treatment decision-making
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Renal Medicine
URI: https://discovery.ucl.ac.uk/id/eprint/10048074
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