Child and Parent Access to Transplant Information and Involvement in Treatment Decision Making

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 member...

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Bibliographic Details
Published in:Western journal of nursing research 2019-04, Vol.41 (4), p.576-591
Main Authors: Stegenga, Kristin, Pentz, Rebecca D., Alderfer, Melissa A., Pelletier, Wendy, Fairclough, Diane, Hinds, Pamela S.
Format: Article
Language:English
Subjects:
Access to information
Adolescent
Age differences
Blood & organ donations
Child
Children
Childrens health
Clinical decision making
Congruence
Decision Making
Donors
Female
Gender
Health Services Accessibility - standards
Humans
Information Seeking Behavior
Information sharing
Interviews as Topic - methods
Male
Medical prognosis
Nursing
Parent-Child Relations
Parenting - psychology
Parents & parenting
Patient Education as Topic - methods
Patient Education as Topic - standards
Pediatrics
Pediatrics - methods
Pediatrics - standards
Perceptions
Relatives
Siblings
Stem cell transplantation
Stem cells
Transplants & implants
Transplants - surgery
Young Adult
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Description
Summary: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.
ISSN:0193-9459
1552-8456
DOI:10.1177/0193945918770440