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Themes reported by families as important when proceeding with pediatric hematopoietic stem cell transplantation
Author(s) -
Pelletier Wendy,
Hinds Pamela S.,
Alderfer Melissa A.,
Fairclough Diane L.,
Stegenga Kristin,
Pentz Rebecca D.
Publication year - 2014
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.25075
Subject(s) - medicine , hematopoietic stem cell transplantation , malignancy , pediatric cancer , quality of life (healthcare) , disease , transplantation , family medicine , intervention (counseling) , pediatrics , cancer , blood cancer , psychiatry , nursing
Background Hematopoietic stem cell transplantation (HSCT) is an accepted treatment for pediatric malignant and non‐malignant conditions. Agreeing to HSCT can be challenging for families. This study explored themes reported by family members as influencing their acceptance of HSCT as a necessary treatment intervention. Procedure In a four‐site study, 107 individuals within 30 families pursuing HSCT for a pediatric malignancy, and 25 individuals within 6 families pursuing HSCT for a pediatric non‐malignancy were interviewed pre‐HSCT. Semantic content analysis was used in this secondary analysis to identify relevant themes. Results Fifty‐eight parents (and surrogates) 19 patients, 16 donor siblings, and 39 non‐donor siblings, half‐siblings and cousins, participated. Thirteen themes were identified as influencing the acceptance of HSCT. The most frequently reported were: “recommendation by the child's physician,” viewing HSCT as the “best chance for cure,” and “desiring a more normal and better quality of life for the patient and family.” Seven themes were reported by all categories of family members, though at different frequencies. Two themes (“HSCT being part of the upfront treatment plan”: “hearing of HSCT success in others”) were only reported by the malignancy group, and one theme (“worrying about disease progression and losing a window of HSCT opportunity”) was only reported by the non‐malignancy group. Conclusion Parents, patients, and other family members can articulate multiple themes that influence their considerations of HSCT. Understanding these themes may guide discussions between families and healthcare teams. Pediatr Blood Cancer 2014;61:1625–1631. © 2014 Wiley Periodicals, Inc.