Understanding Barriers and Facilitators to Implementing Sibling-specific Services to Siblings of Children with Cancer
Mentor: Dr. Kristin Long
Siblings of children with cancer are at an increased risk for poor psychosocial outcomes including cancer-related PTSD, school problems, and risky health behaviors, which can extend into adulthood (Long et al., 2018). Providing psychosocial support to siblings is a standard of care in pediatric oncology (Gerhardt et al., 2015). However, the sibling standard is not consistently implemented in pediatric oncology centers across the US (Jones et al., 2018), and the barriers to systematically providing psychosocial assessment and support are not well understood. While there is an existing body of research on family-level barriers to siblings receiving sibling-specific services (Long et al., 2017), there is little research focusing on barriers at the level of pediatric oncology service (e.g. limited staff and resources) and the broader healthcare system (e.g. insurance coverage of siblings, low awareness of siblings’ needs). This study aims to characterize the pediatric oncology service- and healthcare systems-level barriers to providing psychosocial services to siblings of children with cancer. Without addressing these larger system- and service-level barriers, the family-level obstacles to sibling support cannot be overcome. Additionally, this research aims to understand facilitators to providing sibling-specific services and articulate initial ideas about how to overcome existing barriers. This mentored research project will be carried out alongside an individualized training plan to improve the candidate’s knowledge of psycho-oncology and research skills in qualitative methods.
The proposed study aims to characterize the barriers to providing psychosocial care to siblings of children with cancer using data from qualitative interviews with psychosocial care providers, selected through purposive sampling, to represent the wide variety of pediatric oncology centers throughout the US. Data collection is ongoing and will be finished by spring 2020. Data will be coded using a coding structure that will include both inductive and deductive approaches. A quarter of transcripts will be double-coded, with a 90% reliability rate considered acceptable. Data will be analyzed using applied thematic analysis methodology (Guest et. al, 2012). The main aspects of the proposed POST project are to (1) conduct qualitative analysis of barriers and facilitators to providing sibling-specific services (summer 2020), (2) submit findings for a poster presentation at the Society of Pediatric Psychology Annual Conference (fall 2020), and (3) disseminate findings through preparing a manuscript for publication in a peer-reviewed scientific journal (spring 2021).
