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.

Background: Siblings of children with cancer have elevated psychosocial risk. Sociodemographic factors (e.g., non-White race, low income, and low caregiver education) are associated with increased risk. Little is known about how sociodemographic factors influence families' decisions to participate in sibling support services. This convergent mixed-methods study characterizes how sociodemographic factors influence parent decision-making to engage siblings in support. Method: A purposive sample of parents of children with cancer (N ϭ 28) participated in semistructured interviews that queried their perceptions of sibling support, including preferences for ideal support and perceived barriers to accessing support. Qualitative findings were merged with quantitative data to stratify by sociodemographic categories (ethnicity, parent-reported financial hardship, parent education). Applied thematic analysis was used to distill findings. Results: Sociodemographic differences emerged across parents' decisionmaking on whether to engage with sibling support services. Some cross-cutting barriers to accessing sibling support were described by all groups. However, differences across sociodemographic groups emerged for other barriers to care and for preferences for sibling support. Conclusions: These findings inform the design and implementation of sibling support programs. Providers can work with families to craft individualized sibling support plans that align with the family's preferences and circumvent perceived barriers, which may improve acceptability and use of support programming and ultimately improve siblings' psychosocial outcomes. Implications for Impact StatementThis article offers an overview of sociodemographic variables (ethnicity, financial hardship, parent education) associated with parents' decision to engage in support for siblings of children of cancer. An understanding of these factors can support clinicians in the design and implementation of programs that are acceptable and accessible for all families of children with cancer.

Siblings of children with cancer are a psychosocially at-risk group and have unmet needs that are typically not addressed within traditional hospital settings. The current study implemented a community-academic partnership model with SuperSibs-a nationwide, community-based, no-cost program for siblings of children with cancer, powered by Alex's Lemonade Stand Foundation-to evaluate and improve their sibling resources. Method: Researchers and Alex's Lemonade Stand Foundation staff partnered to plan and conduct research with siblings regarding desired support resources, with attention to the acceptability and feasibility of implementation. Siblings (N ϭ 23) provided qualitative data regarding suggestions for new resources and feedback on existing and proposed SuperSibs programs. Qualitative data were analyzed using applied thematic analysis. Results: Siblings emphasize the importance of support that is meaningful, age-appropriate, consistently delivered and that offers autonomy. Siblings recommended revised SuperSibs program initiatives, such as yoga instruction, education for parents and teachers, and game-based interventions. Collaboration throughout the course of the research between researchers and Alex's Lemonade Stand Foundation staff yielded improvements to SuperSibs programming. Conclusion: Community-academic partnerships are useful in conducting impactful research that is directly translatable into community-based support. Recommendations continue to inform resource development and evaluation goals.

Background/objectives Adolescents and young adults (AYA) with sickle cell disease (SCD) face challenges related to the disease and its treatment. The Transition Readiness Assessment Questionnaire (TRAQ) is a self‐report tool for assessing transition readiness for youth with special health care needs (YSHCN), including SCD. This study uses the TRAQ to understand transition readiness in patients with SCD treated at the Boston Medical Center and evaluates associations between TRAQ scores and transition outcomes (e.g., emergency department reliance [EDr] and emergency department utilization [EDu]). Methods We reviewed electronic medical records of AYA with SCD who completed the TRAQ in the pediatric hematology clinic between January 1, 2019, and March 1, 2020, and categorized healthcare encounters to calculate EDu and EDr.  We used t tests and ANOVA models to analyze mean TRAQ scores, sex, age, genotype, EDu, and EDr. Results The sample was 45 AYA patients with SCD between 13 and 22 years old. The mean TRAQ score for the overall patient sample was 3.67. Mean TRAQ scores did not significantly vary by sex or genotype but did significantly increase with age. TRAQ scores did not correlate to EDu or EDr. Conclusions AYA patients with SCD have low transition readiness. The age of 18 may not be the most reliable attribute of readiness, though older patients do have higher readiness. The relationship between TRAQ scores, EDr, and EDu is not clear and requires further evaluation.

No abstract

Background/Objectives: Adolescents and young adults (AYA) with sickle cell disease (SCD) face challenges related to the disease and its treatment. The Transition Readiness Assessment Questionnaire (TRAQ) is a self-report tool for assessing transition readiness for youth with special health care needs (YSHCN), including SCD. This study uses the TRAQ to understand transition readiness in patients with SCD treated at the Boston Medical Center, evaluates associations between TRAQ scores and transition outcomes (e.g., EDr, EDu), and compares TRAQ scores in this population with other YSHCN. Methods: We reviewed electronic medical records of AYA with SCD who completed the TRAQ in the pediatric hematology clinic between January 1, 2019, and March 1, 2020, and categorized healthcare encounters to calculate EDu and EDr. We used t-tests and ANOVA models to analyze mean TRAQ scores, sex, age, genotype, EDu, and EDr. Results: The sample was 45 AYA patients with SCD between 13 and 22 years old. The mean TRAQ score for the overall patient sample was 3.67. Mean TRAQ scores did not significantly vary by sex or genotype but did significantly increase with age. TRAQ scores were lower in the SCD population than in other YSHCN. TRAQ scores did not correlate to EDu or EDr. Conclusions: AYA patients with SCD have lower transition readiness than other populations of YSHCN. The age of 18 may not be the most reliable attribute of readiness, though older patients do have higher readiness. The relationship between TRAQ scores, EDr, and EDu is not clear and requires further evaluation.

No abstract