Psychosocial care providers’ perspectives: Barriers to implementing services for siblings of children with cancer

Abstract

Background Siblings of children with cancer are at increased risk for poor long‐term psychosocial outcomes. The standard of psychosocial care in pediatric oncology calling for sibling support is not routinely implemented, often leaving siblings with unmet psychosocial needs. Barriers to implementing the sibling standard may exist at multiple levels. This study addresses research gaps regarding multilevel barriers to supporting siblings at the health care system, oncology center, and family levels. Procedure Qualitative interviews were conducted with psychosocial care providers (N = 27; 18 psychologists, five social workers, three psychiatrists, and one child life specialist) employed at oncology centers within hospitals across the United States, varying in extent of sibling programming and center size. Interviews included questions about providers’ roles, oncology center characteristics, existing psychosocial sibling services, barriers to providing systematic sibling assessment, and ideas about how to overcome barriers. Data were analyzed using applied thematic analysis. Results Qualitative analysis revealed (a) barriers to providing sibling services occur at multiple levels (health care system, oncology center, family); (b) barriers at multiple levels frequently interact with one another; and (c) interacting barriers maintain a cycle: barriers to providing services contribute to limited provision of services, low service provision leads to limited utilization of existing services and underprioritization of siblings, and together this leads to siblings being off the radar, which further limits sibling service provision. Conclusion Addressing health care system and oncology center barriers to implementing sibling assessment and support may be important potential targets for interventions to help ensure that siblings receive needed psychosocial assessment and support.

The Social Networks and Social Support of Siblings of Children with Cancer

“…Previous work has identified that siblings of children with cancer are at risk for poor adaptation, difficulties in school, and altered relationships with members of their social networks [ 4 , 6 ]. Barriers to supporting siblings have also been identified [ 29 , 30 ], and structured support may not be available to many siblings. COVID-19 has further limited access to supportive services [ 31 ].…”

Inconsistent, uncoordinated, and reactive: The current state of sibling psychosocial care

“…The gap between the Sibling Standard and current care practices must be viewed in light of emerging research on multisystemic interacting barriers to sibling psychosocial care. For example, reliance on parent report is understandable given providers’ limited time and access to siblings 27 . Yet, due to parents’ own limited time and attentional resources, they are often unaware of how siblings are coping with cancer, and thus may be unable to provide accurate information about sibling psychosocial risk 33 .…”

“…The remaining 30 (47%) expressed interest in participating. Three were subsequently lost to contact, resulting in a total of 27 providers (42%) who provided data 27 . The resulting sample was heterogeneous across provider discipline, center size, institution type, and level of sibling support (Table 1).…”

“…One survey of oncologists and psychosocial leaders across 144 pediatric oncology programs in the United States found that the Sibling Standard was among the least likely to be implemented 25 . Although reasons for the absence of sibling psychosocial services have not been well studied, recent research has identified barriers that transcend multiple social‐ecological levels, including the family, cancer center, and healthcare systems 27 …”

Bringing Together a Transdisciplinary Team to Create and Advance a Shared Vision for Research and Support for Siblings of Youth With Cancer

“…Siblings commonly report unmet psychosocial needs (O’Shea et al, 2012; Patterson et al, 2017). Although supporting siblings is now a standard of care in pediatric oncology (Gerhardt et al, 2015), this standard is not being routinely met (Scialla et al, 2018) due to a multitude of healthcare delivery barriers such as billing/documentation challenges and staff shortages (Brosnan et al, 2021). Historically, sibling research has been challenged by limited awareness of siblings’ needs across families and healthcare systems, methodological concerns including small sample sizes, and few funding opportunities (Long et al, 2015b).…”