Title

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

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