Children undergoing hematopoietic stem cell transplant (HSCT) have significant medical, social, and emotional needs. Similarly, the parents of these patients have been studied and found to have unique needs. However, another member of this group seems to have gone under-recognized: siblings of HSCT recipients. Several studies have shown that siblings of cancer patients are at risk for family separation, lack of attention, lack of information, and increased responsibilities at home. The few studies that have specifically focused on siblings of pediatric HSCT patients suggest similar challenges, but the data are limited. Studies that focus on family strategies for supporting siblings are even more limited, but a recent study (10.1542/peds.2016-1057) in Pediatrics has provided important new information.
Taylor et al. performed a secondary semantic analysis of 86 qualitative interviews with family members of children undergoing HSCT. From these interviews, they found that sibling issues included separation from parents and caregivers, difficult emotions, facing additional responsibilities or burdens, lacking information, and feeling excluded. Families and healthcare providers reported several strategies to support siblings through these challenges, which included sharing information, utilizing family and friends for social support, offering defined roles to siblings, working toward keeping constancy in the child’s life, and switching between parents at the hospital, among others. Interestingly, many of these strategies appeared to target the sibling’s separation from parents, which was also one of the most common concerns.
This study has clearly elucidated the strategies of parents and providers in this population, and as the authors noted, “these data can provide healthcare providers with a list of strategies to present to families facing HSCT.” However, the authors also found a discrepancy between the interventions recommended by healthcare providers and the strategies actually employed by families, raising the question of which strategies are appropriate to recommend to which families. Furthermore, how should physicians support families that can’t or don’t engage in these strategies? What about parents who have inflexible jobs, live far away, or have other extenuating circumstances? What about families who live in poverty? What about single parents? Taking a further step back, are we certain that these strategies are truly beneficial to the siblings, or do some of these common practices potentially place siblings at greater risk of emotional harm?
One sign of important research is that it not only provides answers, but also generates new questions and hypotheses. The results of this study have provided a foundational understanding of strategies currently employed for the benefit of siblings of HSCT recipients. Even more importantly, these results have spurred a number of important questions that provide a framework for future studies.