Kristin Long - US grants

PROJECT SUMMARY/ABSTRACT In the next decade, over one half million youths with autism spectrum disorder (ASD) will enter adulthood. The adult service system is not adequately prepared to meet the needs of this growing population. The burden of coordinating care frequently falls on family members. Siblings are the future generation of caregivers and often become the guardians for their brother or sister with ASD when parents are no longer able to provide care due to illness or death. Yet, siblings are seldom involved in research or support services for the adult with ASD. There is a critical public health need to develop and evaluate programs that enhance sibling involvement in future planning before the crisis of a caregiving transition. The proposed project will develop an innovative program to facilitate adult sibling engagement in family future planning. Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) targets common barriers to sibling involvement in family future planning, including improving family communication around difficult topics, increasing siblings' knowledge of and confidence in accessing ASD service systems, and anticipating and proactively problem- solving barriers to future planning. The program will be delivered collaboratively with community organizations that support adults with ASD. Siblings will participate in individual, personalized modules. A telehealth approach was chosen to address barriers related to geographical separation. Future planning will include input from the adult with ASD. The program will result in a future plan of action written by the sibling, including concrete next steps. The specific aims are to: (1) develop the Siblings FORWARD program, (2) assess feasibility, and (3) assess the outcomes of sibling participation in the program. The program will be further developed through input from a community advisory board, data from sibling and service provider focus groups, and individual interviews with adults with ASD. Then, a small open trial with 5 siblings will be conducted to assess feasibility and further refine the Siblings FORWARD program. Finally, a pilot randomized controlled trial (RCT) (N=36) will be conducted using a control condition (information only). Pre-, post-, and 3- month follow up data will assess outcomes in siblings (changes skills and knowledge, development of a sibling plan of action) and adults with ASD (unmet service needs, quality of life, family social support). Establishing feasibility and assessing outcomes of the Siblings FORWARD program will inform future larger clinical trials. The availability of an evidence-based future planning program will enable community organizations to better serve this aging population. Ultimately, greater sibling involvement in family future planning will result in optimal independence and functioning in adults with ASD through more seamless continuity of care across the life course of the adult with ASD.

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.