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Development of a Screening Module to Assess Sibling-Related Psychosocial Risk in Families of Children with Cancer

Boston University
Kristin Long, PhD
Grant Type: 
Psychosocial Grants
Year Awarded: 
Type of Childhood Cancer: 
General Pediatric Cancer
Project Description: 


Stressors associated with a child's cancer diagnosis impact the whole family, including siblings. Many siblings of children with cancer adjust well over time. However, the challenges that cancer diagnosis and treatment place upon the family put siblings at risk for ongoing, elevated distress and school problems. Siblings who experience difficulties adjusting to cancer are less likely to contribute to the family's efforts to manage the practical and emotional aspects of cancer. These siblings are likely to benefit from psychosocial intervention. Yet, siblings' psychosocial needs are seldom identified or addressed in healthcare settings.

Project Goal

One barrier to effectively meeting siblings' needs is the lack of an established assessment tool that can identify siblings who experience heightened distress. Although the Psychosocial Assessment Tool (PAT) has been used worldwide to identify families who are likely to experience ongoing and/or elevated distress, this measure has not been evaluated in siblings. To fill this gap, the proposed study aims to (1) develop a sibling-specific module of the PAT and (2) test this PAT Sibling Module in a sample of English- and Spanish-speaking families of children with cancer. Specifically, we will examine the extent to which PAT Sibling Module scores identify families and/or siblings who have difficulties adjusting to cancer. The proposed study is expected to have a direct impact on family-centered care by ensuring that all family members (including siblings) receive the optimal level of psychosocial care. In turn, this will enable siblings to make meaningful contributions to cancer management activities within the family.

"Cancer affects all members of the family, but siblings have often been overlooked in clinical and research pursuits. This funding from Alex’s Lemonade Stand will allow us to expand the idea of “family-centered care” to include siblings. We aim to develop a sibling-focused screening tool for English- and Spanish-speaking families of children with cancer. This will help treatment providers to identify and proactively intervene with siblings who might benefit from extra support. Through this research, we will learn how to better support siblings during the cancer experience. This may help siblings make meaningful contributions to cancer management activities within the family. Siblings' important role as partners in the fight against cancer will be further understood and highlighted."  -Kristin Long, PhD

December 2015 Project Update:

Data collection is underway to (1) identify risk and protective factors that may influence how siblings adjust to their brother's/sister's cancer, (2) apply this knowledge to the development of a sibling screening module, and (3) examine how sibling-related risk factors and resources influence family adjustment to cancer. Preliminary findings suggest that parents identify a strong need to increase sibling-specific screening and support. Parents indicated that the sibling items on existing screening measures are unclear. They offered suggestions about how and when to conduct sibling screening, including how to assess multiple siblings within a family.