Hematopoietic Stem Cell Transplantation in Children With Sickle Cell Anemia: The Parents' Experience | oneSCDvoice
  • Join Today!

Become a member and connect with:

  • An Active Online Community
  • Articles and Advice on SCD
  • Help Understanding Clinical Trials
scientific articles

Hematopoietic Stem Cell Transplantation in Children With Sickle Cell Anemia: The Parents’ Experience

key information

source: Pediatric Transplantation

year: 2019

authors: Cavadini R, Drain E, Bernaudin F, D'Autume C, Giannica D, Giraud F, Baubet T, Taïeb O

summary/abstract:

Genoidentical HSCT is currently the only curative treatment for SCA, preventing further vascular complications in high-risk children. Studies on the psychological implications of HSCT for recipient, sibling donor, and the rest of the family have been limited in SCA. This study enrolled ten families and used semi-structured interviews to explore the parents’ experience at three time points: first before transplantation, then 3 months later, and 1 year later. Three themes emerged from the results: (a) the presence of anxiety, experienced throughout the process, and alleviated by coping strategies (positive thinking, family support, praying); (b) the ability to remain parents to recipient and other family members, despite apprehension and feelings of helplessness, reinforced by the mobilization of important resources at the individual/family levels; (c) the ability to acknowledge the opportunity for their child to be cured of the disease, despite feelings of guilt toward families without a donor, or their own families back home. Overall, the parental experience with HSCT is complex, involving intra-psychic, familial, cultural, religious, and existential factors. Thus, it is important for medical teams to be cognizant of these issues in order to provide the best support to families during the HSCT process.

organization: Hôpital Maison Blanche, France; Paris XIII University & Assistance Publique-Hôpitaux de Paris, France; Centre Hospitalier Intercommunal, France

DOI: 10.1111/petr.13376

read more