Themes reported by families as important when proceeding with pediatric hematopoietic stem cell transplantation

Pediatr Blood Cancer. 2014 Sep;61(9):1625-31. doi: 10.1002/pbc.25075. Epub 2014 May 5.

Abstract

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.

Keywords: hematopoietic stem cell transplantation; pediatric; themes.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Family / psychology*
  • Female
  • Hematopoietic Stem Cell Transplantation / psychology*
  • Humans
  • Male
  • Middle Aged
  • Neoplasms / psychology*
  • Neoplasms / therapy*
  • Parents / psychology*
  • Physician's Role
  • Siblings / psychology*
  • Tissue Donors / psychology*
  • Young Adult