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Published on: September 19, 2019
Child and Parent Access to Transplant Information and Involvement in Treatment Decision Making
Kristin Stegenga1, Rebecca D Pentz2, Melissa A Alderfer3,4
11 Children's Mercy Hospital, Kansas City, MO, USA.
Insights
Most pediatric stem cell transplant patients and their young family members feel excluded from transplant information and decisions. Older children and specific roles experienced less exclusion, but congruence with guardians was rare.
Area of Science:
- Pediatric Hematology/Oncology
- Family Medicine
- Bioethics
Background:
- Pediatric stem cell transplantation (SCT) necessitates comprehensive information exchange between patients, families, and healthcare teams.
- Effective communication is crucial for informed consent, adherence, and psychosocial well-being in pediatric SCT.
Purpose of the Study:
- To investigate the perceptions of information access and decision-making involvement among pediatric SCT recipients and their family members (aged 9-22).
- To compare child and guardian perspectives on information sharing and decision-making.
- To explore variations in perceived involvement based on child's age, gender, and role within the family.
Main Methods:
- Secondary analysis of 119 pre-transplant interviews from 27 families involving pediatric patients, sibling donors, other siblings/cousins, and guardians.
- Qualitative extraction and summarization of data on perceived information access and decision-making involvement.
- Comparative analysis of child versus guardian perceptions and examination of demographic influences (age, gender).
Main Results:
- A significant majority of child family members reported exclusion from transplant (79%) and donor (63%) information and decisions (63%).
- Perceived exclusion varied by the child's role within the family.
- Older children perceived less exclusion, while gender did not significantly impact involvement.
- Perspective congruence between children and guardians was observed in only 30% of families, with most congruent families excluding children.
Conclusions:
- Pediatric SCT families frequently exclude young members from crucial transplant-related information and decision-making processes.
- Age and family role are key factors influencing children's perceived involvement, with older children experiencing less exclusion.
- Limited congruence between child and guardian perspectives highlights a communication gap that warrants targeted interventions to improve family-centered care in pediatric SCT.
Abstract:
Pediatric stem cell transplant processes require information sharing among the patient, family, and clinicians regarding the child's condition, prognosis, and transplant procedures. To learn about perceived access to transplant information and involvement in decision making among child family members (9-22 years old), we completed a secondary analysis of 119 interviews conducted with pediatric patients, sibling donors, nondonor siblings/cousins, and guardians from 27 families prior to transplant. Perceptions of information access and involvement in transplant-related decisions were extracted and summarized. We compared child member perceptions to their guardians' and examined differences by child age and gender. Most child members perceived exclusion from transplant (79%) and donor (63%) information and decisions (63%) although this varied by child role. Gender was unrelated to involvement; older age was associated with less perceived exclusion. Congruence in perspectives across children and guardians was evident for eight (30%) families, most of whom ( n = 7) excluded the children.
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