TY - JOUR
T1 - Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD
T2 - A Focus Group Study
AU - Gutman, Talia
AU - Hanson, Camilla S.
AU - Bernays, Sarah
AU - Craig, Jonathan C.
AU - Sinha, Aditi Prashant
AU - Dart, Allison
AU - Eddy, Allison A.
AU - Gipson, Debbie S.
AU - Böckenhauer, Detlef
AU - Yap, Hui Kim
AU - Groothoff, Jaap W.
AU - Zappitelli, Michael
AU - Webb, Nicholas Ja
AU - Alexander, Stephen I.
AU - Goldstein, Stuart L.
AU - Furth, Susan L.
AU - Samuel, Susan M.
AU - Blydt-Hansen, Tom D.
AU - Dionne, Janis
AU - Michael, Mini
AU - Wenderfer, Scott E.
AU - Winkelmayer, Wolfgang C.
AU - Currier, Helen
AU - McTaggart, Steven J.
AU - Walker, Amanda M.
AU - Ralph, Angelique F.
AU - Ju, Angela
AU - James, Laura J.
AU - Carter, Simon A.
AU - Tong, Allison
PY - 2018/10
Y1 - 2018/10
N2 - 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.
AB - 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.
KW - children
KW - chronic kidney disease (CKD)
KW - pediatric chronic disease
KW - parents
KW - dialysis
KW - participation
KW - adolescents
KW - childhood disease
KW - physician-patient communication
KW - involvement
KW - chronic disease
KW - end-stage renal disease (ESRD)
KW - focus group
KW - pediatrics
KW - transplant
KW - mismatched priorities
KW - treatment decision-making
KW - qualitative research
KW - communication
KW - patient-centred care
KW - parent-child interactions
KW - Shared decision-making
UR - http://www.scopus.com/inward/record.url?scp=85049352344&partnerID=8YFLogxK
U2 - 10.1053/j.ajkd.2018.05.005
DO - 10.1053/j.ajkd.2018.05.005
M3 - Article
VL - 72
SP - 547
EP - 559
JO - American Journal of Kidney Diseases
JF - American Journal of Kidney Diseases
SN - 0272-6386
IS - 4
ER -