%0 Journal Article
%T Child and Parent Access to Transplant Information and Involvement in Treatment Decision Making
%A Diane Fairclough
%A Kristin Stegenga
%A Melissa A. Alderfer
%A Pamela S. Hinds
%A Rebecca D. Pentz
%A Wendy Pelletier
%J Western Journal of Nursing Research
%@ 1552-8456
%D 2019
%R 10.1177/0193945918770440
%X Pediatric stem cell transplant processes require information sharing among the patient, family, and clinicians regarding the childĄ¯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 guardiansĄ¯ 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
%K information access
%K treatment decision making
%K sibling
%K patient
%K donor involvement in decision making
%U https://journals.sagepub.com/doi/full/10.1177/0193945918770440