Child and Parent Access to Transplant Information and Involvement in Treatment Decision Making.
Document Type
Article
Publication Date
4-2019
Identifier
DOI: 10.1177/0193945918770440
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.
Journal Title
Western journal of nursing research
Volume
41
Issue
4
First Page
576
Last Page
591
MeSH Keywords
Adolescent; Child; Decision Making; Female; Health Services Accessibility; Humans; Information Seeking Behavior; Interviews as Topic; Male; Parent-Child Relations; Parenting; Patient Education as Topic; Pediatrics; Transplants; Young Adult
Keywords
donor involvement in decision making; information access; patient; sibling; treatment decision making
Recommended Citation
Stegenga K, Pentz RD, Alderfer MA, Pelletier W, Fairclough D, Hinds PS. Child and Parent Access to Transplant Information and Involvement in Treatment Decision Making. West J Nurs Res. 2019;41(4):576-591. doi:10.1177/0193945918770440
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