SibACCESS: Developing a Telehealth Intervention to Address Unmet Psychosocial Needs of Siblings of Children with Cancer

项目总结/文摘

PROJECT SUMMARY/ABSTRACT Childhood cancer leads to extended disruptions within family systems, which can leave siblings feeling disconnected from their families and left to cope with strong cancer-related emotions on their own. Siblings frequently report high levels of negative emotions and posttraumatic stress, which can interfere with their behavioral functioning, interpersonal relationships, and ability to attend and concentrate at school. Outcomes are worse for siblings from under-represented minority groups and for those with fewer socioeconomic resources. The importance of attending to siblings’ psychosocial needs has been documented in over one hundred studies and has been designated as a standard of care in pediatric oncology. Yet, this standard of care is rarely met. Our pilot data highlights families’ desire for better sibling support, but there are no well- established interventions tailored to siblings of youth with cancer. Most health care centers do not offer sibling programs, and the few existing sibling interventions are poorly matched to siblings’ clinical presentations. Furthermore, most supportive programs in childhood cancer insufficiently consider cultural differences in families’ preferences regarding the goals, content, or format of supportive interventions. Siblings’ likelihood of getting much-needed support is further limited by their absence from the hospital, where most supportive programs for children with cancer and their families are based. The proposed research aims to address these problems in clinical practice by developing a new culturally-informed psychosocial intervention guided by the pediatric medical traumatic stress framework that addresses systematic barriers to supporting siblings by using a telehealth approach. Specific aims are to (1) develop the SibACCESS (Acceptance, Coping, Communication, Engagement, and Social Support) program based on the trauma-focused CBT framework and refine the program based on feedback from a diverse sample of English- and Spanish-speaking families of children with cancer, and (2) conduct a pilot trial of the SibACCESS program to assess the preliminary feasibility and acceptability of the intervention and the feasibility of the research procedures and materials in preparation for future, larger-scale efficacy trials. Community stakeholders (siblings, parents, providers) have contributed to the design and aims of the proposed work and will continue to take a central role across all stages of research design, analysis, dissemination, and future directions. The proposed program is novel in its grounding in the pediatric medical traumatic stress framework and associated focus on increasing siblings’ exposure to and processing of cancer-related cues. By addressing sibling-specific barriers to care and targeting siblings’ unique psychosocial needs, SibACCESS is expected to move us one step closer to meeting the standard of care that calls for psychosocial services for siblings of youth with cancer. In turn, better sibling support is expected to improve siblings’ psychosocial functioning over the lifespan, lessen the negative impact of sibling adjustment problems on families, and overall, reduce the burden of pediatric cancer on families.