Siblings FORWARD: Development of a New Program to Engage Siblings of Autistic Adults in Future Planning.

The adult service system does not adequately meet the needs of autistic adults, prompting families to continue their supportive roles. Siblings frequently assume these roles when parents are no longer able to do so, often without preparation or planning. We received feedback on the proposed Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) program concept, which would involve 6-7 individualized sessions over ~ 3 months and would facilitate siblings' proactive future planning involvement with their autistic family member. Siblings FORWARD would bolster siblings' skills, knowledge, and self-efficacy to engage in future planning with their family members. We report on perceived need for a sibling program and feedback on the proposed program goals, content, and design. Adult siblings (n = 13), autistic adults (n = 6), and service providers (n = 17) participated in individual interviews or focus groups. Data were systematically coded and analyzed using directed content analysis. Siblings, autistic adults, and service providers expressed high enthusiasm for the Siblings FORWARD concept. Participants indicated that the combination of skill-building and education would promote continued, collaborative future planning that persists after the formal program ends. They had positive impressions of the program concept, goals, content, and design, including the telehealth delivery model. Siblings and autistic adults reported wanting to participate in Siblings FORWARD. This uniform, strong enthusiasm for the Siblings FORWARD concept warrants moving forward to examine preliminary acceptability and feasibility. Ultimately, greater sibling involvement in family future planning may improve autistic adults' functioning through improved continuity of care and support across adulthood.

Parental Behaviors, Emotions at Bedtime, and Sleep Disturbances in Children with Cancer.

BACKGROUND: Poor sleep is common for children during cancer treatment, but there is limited understanding of the nature of children's sleep throughout the treatment trajectory. The current exploratory study used an explanatory sequential mixed method approach to examine quantitative associations among sleep problems in children with cancer, parental behavior, and children's sleep hygiene, with follow-up qualitative characterizations of children's sleep across cancer treatment stages. PROCEDURE: Eighty parents of children with cancer (aged 2-10 years; in active treatment, maintenance treatment, or off treatment) completed an online survey querying the child's sleep quality (Sleep Disturbance Scale for Children-Disorders of Initiating and Maintaining Sleep subscale) and behaviors (Child Sleep Hygiene Scale) and sleep-related parenting behaviors (Parental Sleep Strategies). A subsample (n = 17 parents) participated in qualitative interviews to better characterize the processes of children's sleep and parents' sleep-related behaviors. RESULTS: Children's sleep quality, sleep hygiene, or parental sleep strategies were not significantly different by cancer treatment groups. Greater sleep disturbance in children was associated with their parents' tendency to accommodate the child's bedtime requests. Qualitatively, cancer treatment-related anxiety in both children and parents influence the onset of these disruptive sleep behaviors. CONCLUSION: Parents' sleep-related behaviors affect children's sleep during cancer treatment. Parents' accommodation may start during active treatment to alleviate cancer-related challenges, and these behaviors may continue into maintenance therapy and off treatment to reinforce sleep disturbance. Behavioral interventions targeting unhelpful parental behaviors may improve sleep in children with cancer during and after cancer treatment.

Parental awareness of sibling adjustment: Perspectives of parents and siblings of children with cancer.

Childhood cancer is a significant psychosocial stressor, and sibling adjustment ranges from resilience to clinically significant psychopathology. Siblings and parents often describe siblings' psychosocial functioning differently, which may reflect parental unawareness of siblings' adjustment to cancer and increase the risk for negative sibling outcomes. The present study characterizes siblings' and parents' perceptions of parents' awareness of siblings' psychosocial functioning and describes how family functioning influences parental awareness. Parents (N = 13) and siblings (N = 17, ages 8-17) from 13 families completed in-depth qualitative interviews regarding siblings' psychosocial adjustment to cancer. Interviews were coded for dimensions of family functioning based on the McMaster Model and analyzed using applied thematic analysis. Families were stratified based on higher or lower levels of parental awareness (i.e., knowledge of the presence, severity, or content of siblings' cancer-related feelings). Themes related to communication, affective involvement, roles, problem-solving, and affective responsiveness influenced parental awareness. Parental awareness was hindered by siblings' reluctance to communicate their feelings to parents due to the messages they received about cancer (e.g., be positive/helpful), siblings' hesitancy to rely on parents for emotional support, and parents not consistently asking about siblings' emotions. Additionally, parents' cancer-related stress and family disruptions reduced parental focus on siblings and decreased parents' tolerance of siblings' negative emotions. Higher parental awareness was facilitated by closer relationships prediagnosis, consistent communication, and affective problem-solving in response to cancer-related changes. Findings provide a more comprehensive understanding of the family processes underlying parental awareness and inform best practices for sibling assessment and support. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Development of a Psychosocial Risk Screener for Siblings of Children With Cancer: Incorporating the Perspectives of Parents.

Objective: Although many siblings experience distress after a child's cancer diagnosis, their psychosocial functioning is seldom assessed in clinical oncology settings. One barrier to systematic sibling screening is the lack of a validated, sibling-specific screening instrument. Thus, this study developed sibling-specific screening modules in English and Spanish for the Psychosocial Assessment Tool (PAT), a well-validated screener of family psychosocial risk. Methods: A purposive sample of English- and Spanish-speaking parents of children with cancer (N = 29) completed cognitive interviews to provide in-depth feedback on the development of the new PAT sibling modules. Interviews were transcribed verbatim, cleaned, and analyzed using applied thematic analysis. Items were updated iteratively according to participants' feedback. Data collection continued until saturation was reached (i.e., all items were clear and valid). Results: Two sibling modules were developed to assess siblings' psychosocial risk at diagnosis (preexisting risk factors) and several months thereafter (reactions to cancer). Most prior PAT items were retained; however, parents recommended changes to improve screening format (separately assessing each sibling within the family and expanding response options to include "sometimes"), developmental sensitivity (developing or revising items for ages 0-2, 3-4, 5-9, and 10+ years), and content (adding items related to sibling-specific social support, global assessments of sibling risk, emotional/behavioral reactions to cancer, and social ecological factors such as family and school). Conclusions: Psychosocial screening requires sibling-specific screening items that correspond to preexisting risk (at diagnosis) and reactions to cancer (several months after diagnosis). Validated, sibling-specific screeners will facilitate identification of siblings with elevated psychosocial risk.