Mattie Miracle is proud to award Dr. Kristin Long, at Boston University, a $5,000 Continuation Grant. Here is what Dr. Long had to say about our support:
Childhood cancer affects all members of the family, including siblings. Although some siblings report positive adaptation to childhood cancer (e.g., family closeness, hopefulness, and maturity), many report strong negative emotions such as anger, worry, fear, sadness, guilt, and posttraumatic stress (Long et al., 2018). Many siblings feel disconnected from their families during cancer treatment and uninformed about their brother’s or sister’s diagnosis or treatment, which makes them feel left out and confused. Siblings also report high levels of unmet needs for social support and indicate needing help coping with cancer-related stressors (Patterson et al., 2011). The Standards for Psychosocial Care for Children with Cancer and their Families (Wiener et al., 2015) included a call for routine assessment and psychosocial support for siblings (Gerhardt et al., 2015). However, the Sibling Standard is among those least likely to be implemented (Scialla et al., 2018), with only one-third of centers consistently offering psychosocial care to siblings (Jones et al., 2018).
With the support from the Mattie Miracle Cancer Foundation, our research team aims to better understand and problem-solve barriers to offering psychosocial services to siblings. To this end, a national sample of psychosocial providers have shared their expertise regarding the amount and nature of psychosocial services provided to siblings, the factors that impede and facilitate implementation of the Sibling Standard, and ideas about how to overcome these barriers. We have learned that sibling-specific psychosocial screening and support are rarely achieved due to many barriers. For example, siblings are not routinely present at the hospital or clinic and therefore are disconnected from hospital-based services. Even when siblings are present, there are barriers regarding psychosocial providers’ availability, physical space in which to meet with siblings, procedures for documenting work with siblings (e.g., in the electronic medical record), and compensation for sibling work. Some centers offer written materials to educate families about common sibling needs or reactions. However, cancer-related stressors may limit the extent to which families can absorb these materials, and these educational materials remain inaccessible for families with limited literacy or English fluency. On a broader level, there remains limited awareness of siblings’ needs within hospitals and the larger medical community.
In response to our findings about barriers to meeting siblings’ needs, we have crafted a blueprint for siblings’ psychosocial services. The blueprint highlights the need for repeated sibling screening in the months or years after cancer diagnosis, emphasizes linkage to community-based sibling supports, and includes ideas that can be implemented with few resources. Currently, we are collecting feedback from psychosocial providers in order to revise the blueprint and increase its feasibility. This blueprint will serve as the basis for an application for future, larger-scale funding to assess the implementation of the blueprint in pediatric oncology settings. The ultimate goal of this research is to foster positive adaptation for all family members affected by childhood cancer, including siblings.
Gerhardt, C., Lehmann, V., Long, K., & Alderfer, A. (2015). Supporting siblings as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62, S678-S732.
Jones, B., Currin-Mcculloch, J., Pelletier, W., Sardi-Brown, V., Brown, P., & Wiener, L. (2018). Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers. Social Work in Health Care, 57, 221-249.
Long, K., Lehmann, V., Gerhardt, C., Carpenter, A., Marsland, A., & Alderfer, M. (2018). Psychosocial functioning and risk factors for siblings of children with cancer: An updated systematic review. Psychooncology. 27, 1467-1479.