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Little is known about how parent health literacy contributes to health-related outcomes for children with autism. This mixed-methods study included 82 U.S. parents of a child with autism 2-5 years-old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. Results showed: autism information was accessed from multiple sources; understanding autism information involved 'doing your own research'; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake. Findings demonstrate how parent health literacy affects services use., Author(s): Olivia J. Lindly [sup.1] [sup.2] [sup.3] , Jacqueline Cabral [sup.1] [sup.4] , Ruqayah Mohammed [sup.1] [sup.5] , Ivonne Garber [sup.3] , Kamila B. Mistry [sup.6] , Karen A. Kuhlthau [...]

Parents of children with Autism experience high levels of stress. Resiliency is the ability to cope and adapt when faced with stressful events. This randomized, waitlist controlled pilot trial examines the feasibility, acceptability, and preliminary efficacy of an adapted virtual mind-body group intervention for parents of children with ASD. The intervention was feasible and acceptable. The immediate treatment group showed no difference in distress and greater improvement in resiliency and stress reactivity/coping relative to the delayed treatment group, (M difference 5.78; p = .038 and M difference 7.78; p = .001 respectively). Findings showed promising feasibility, acceptability, and preliminary efficacy for parents of children with ASD., Author(s): Karen A. Kuhlthau [sup.2] [sup.3] , Christina M. Luberto [sup.4] , Lara Traeger [sup.4] , Rachel A. Millstein [sup.1] [sup.4] , Giselle K. Perez [sup.1] [sup.4] , Olivia J. [...]

In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale's associations with service use may be useful to those attempting to measure or reduce ASD stigma., Author(s): Katharine E. Zuckerman [sup.1] [sup.2] , Olivia J. Lindly [sup.1] [sup.10] , Nuri M. Reyes [sup.4] , Alison E. Chavez [sup.1] [sup.5] , Maritza Cobian [sup.1] [sup.6] , Kristy [...]

Knowledge of why parents use complementary health approaches (CHA) for children with autism spectrum disorder (ASD) is limited. We conducted a mixed methods study to better understand factors influencing parents' decision to use CHA for ASD. Parent-reported data about CHA use were collected on a probability sample of 352 young children with ASD in Denver, Colorado; Los Angeles, California; or Portland, Oregon. Follow-back interviews were conducted with 31 parents. CHA use was negatively associated with older child age and positively associated with parents' belief ASD has major consequences, living in Portland or Denver, and medication use. Nine themes help explain these results. Study findings may have utility for healthcare providers working with children with ASD and their families regarding CHA., Author(s): Olivia J. Lindly [sup.1] [sup.3] , Sheryl Thorburn [sup.2] , Karen Heisler [sup.5] , Nuri M. Reyes [sup.4] , Katharine E. Zuckerman [sup.3] Author Affiliations: (Aff1) 0000 0004 0386 [...]

Objective Shared decision making (SDM) is most needed when there are multiple treatment options and no 'right' choice. As with quality and experience of care, frequency of SDM may vary by health condition. The objectives of this study were (1) to compare parent report of SDM between a physical and a behavioral health condition and; (2) to compare parent report of SDM between two different behavioral health conditions. Methods Data on children age 3-17 years with asthma, attention deficit/hyperactivity disorder (ADHD), and/or autism spectrum disorder (ASD) were drawn from the 2009/10 National Survey of Children with Special Health Care Needs. Weighted logistic regression was used to compare a parent-reported, composite measure of SDM. Analyses controlled for sociodemographic factors that may influence experience of SDM. Results Compared to parents of children with asthma, parents of children with ADHD were significantly less likely to report experiencing consistent SDM (AOR 0.73). Compared to parents of children with ADHD, those of children with ASD had significantly lower odds of experiencing consistent SDM (AOR 0.59). Those with both ADHD and ASD had the same odds as those with ASD alone of experiencing consistent SDM. Conclusion Use of SDM is particularly limited in developmental and behavioral conditions, such as ADHD and ASD. These data suggest that challenges to implementing SDM may include disease type, complexity, and use of specialty care. Research to identify specific barriers and facilitators of SDM is needed to inform interventions that will promote SDM in developmental and behavioral conditions., Author(s): Ellen A. Lipstein[sup.1] [sup.2] [sup.3] , Olivia J. Lindly[sup.4] , Julia S. Anixt[sup.2] [sup.3] [sup.5] , Maria T. Britto[sup.1] [sup.2] [sup.3] , Katharine E. Zuckerman[sup.6] Author Affiliations: (1) Division [...]