Hematopoietic stem cell transplantation in children with sickle cell anemia: The parents’ experience

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.

Parental Posttraumatic Growth After Pediatric Hematopoietic Stem Cell Transplant

“…Optimism, positive thinking, and maintaining hope through religious faith may be misinterpreted as disengagement coping, yet contribute to parents' descriptions of growth. 27,29,30 Consistent with PTG theory, 15 there was a significant positive association between ruminative thinking and parental PTG. Rumination is not well documented among parents of children with advanced illness receiving high-risk therapies, including HSCT.…”

“…24 Despite this connection between distress and aspects of PTG, parents may have limited ability to reflect on personal gains or envision life after HSCT, particularly if there is worry surrounding graft failure, relapse, or death. [25][26][27] Results showed no significant relationship between PTG with primary or secondary coping. However, there was a statistically significant positive association between PTG and disengagement coping.…”

“…Previous interviews with parents have also depicted the intense emotional experience of HSCT followed by reports of gratitude, life appreciation, and desires to help other families through HSCT 24 . Despite this connection between distress and aspects of PTG, parents may have limited ability to reflect on personal gains or envision life after HSCT, particularly if there is worry surrounding graft failure, relapse, or death 25-27 …”

“…Although disengagement coping has been associated with long-term parental maladaptation and depressive symptoms for some parents, 21 it may support PTG during early HSCT recovery. Optimism, positive thinking, and maintaining hope through religious faith may be misinterpreted as disengagement coping, yet contribute to parents' descriptions of growth 27,29,30 …”

Understanding the symptom experience and self-management strategies of adult hematopoietic stem cell transplantation patients during hospitalization: findings from a qualitative longitudinal study

“…Second, family support and closed connection with family are important sources of positive psychological experience for HSCT patients [41]. Family support is one of the coping strategies for HSCT patients to relieve anxiety [44]. Family cohesion may be helpful in dealing with their symptom distress, which in turn will contribute to a faster resolution of their health problems [45].…”