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Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study
Talia Gutman1, Camilla S Hanson1, Sarah Bernays2
1Sydney School of Public Health, The University of Sydney, Sydney; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
Insights
Children with chronic kidney disease (CKD) and their parents feel disempowered in decision-making due to knowledge gaps. Empowering children and fostering collaborative communication is crucial for improving care and outcomes.
Area of Science:
- Pediatric Nephrology
- Health Communication
- Shared Decision-Making
Background:
- Effective communication and shared decision-making are vital for pediatric chronic disease care.
- Children with chronic conditions rely on parents and clinicians for managing complex health needs.
- Challenges exist in communication and decision-making for pediatric chronic kidney disease (CKD).
Purpose of the Study:
- To explore the perspectives of children with CKD and their parents.
- To understand their experiences with communication and decision-making in managing the illness.
- To identify barriers and facilitators for effective collaboration.
Main Methods:
- Qualitative study design.
- Conducted 16 focus groups with 34 children with CKD and 62 parents across 6 international centers.
- Thematic analysis of focus group transcripts.
Main Results:
- Identified four key themes: knowledge imbalance leading to disempowerment, recognition of unique parental expertise, assertion of personal priorities, and management of child involvement.
- Children with CKD desire more input in treatment decisions but face limitations.
- Parents prioritize long-term quality of life and value partnership with clinicians.
Conclusions:
- Children with CKD want greater involvement in treatment decisions.
- There is a need to support children to become active partners in their healthcare.
- Collaborative decision-making addressing the concerns of both children and parents is essential for improving care.
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.
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