Transition out of high school for young adults with intellectual disabilities (IDs) has been described as a stressful time for individuals and their families, with increased demands for caregiving and parental support. A lack of research is associated specifically with those individuals with moderate IDs and their parents' experiences of well-being during the transition process. The purpose of this phenomenological study was to understand how parents of young adult-aged children with moderate IDs experience well-being as their child transitions from high school to adulthood. Ryff's model of psychological well-being was used as the conceptual framework to better understand and explore the psychological well-being of parents as they navigate through the transition process. Eight parents from an urban Georgia school district were recruited through criterion sampling and participated in individual semistructured face-to-face interviews. Constant comparison analysis was used to analyze the data. There were 8 major themes that emerged from describing the lived experience of parents: (a) expectations and preparation, (b) experience with school, (c) accessing and coordinating services, (d) social support systems, (e) daily activities and planning, (f) life as an adjustment, (g) personal growth, and (h) looking toward the future. School districts and adult service providers may gain insight from parent perspectives to help alleviate rather than exacerbate the challenges parents face during the transition process, which would contribute to the parents' psychological well-being.

The present study used a mixed methodology approach to understand factors that predict and promote health related quality of life (HRQOL) for parents of youth with Autism Spectrum Disorders (ASD). The first component of the study used quantitative analyses to determine the extent to which study variables predict HRQOL for parents of youth with ASD (N = 365). Findings show that HRQOL is positively impacted by increased total annual household income, increased age of the child with ASD, male gender, and tangible support. HRQOL was negatively impacted by increased age of the parent, increased parental perceptions of burden, and use of maladaptive coping strategies. The second phase of the study incorporated qualitative methodology to describe the lived experience of parents (N = 8). Qualitative interviews solicited perceptions of parents regarding HRQOL. Further, qualitative analyses identified sources of parental support, how parents feel about support from varying professionals, and potential supportive interventions toward which they are amenable but cannot currently access. Directions for future research and implications for improving HRQOL for parents of youth with ASD are discussed. The results of the current study can be used to guide and inform supportive services targeted at parents of youth with ASD to improve their HRQOL.

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Background: Type 1 diabetes in young children is a heavy parental burden. As part of pilot phase of the KIDSAP01 study, we conducted a baseline assessment in parents to study the association between hypoglycemia fear, parental well-being and child behavior. Methods: All parents were invited to fill in baseline questionnaires: hypoglycemia fear survey (HFS), WHO-5, Epworth Sleepiness Scale and Strength and Difficulties Questionnaire (SDQ). Results: 24 children (median age: 5-year, range 1-7 years, 63% male, mean diabetes duration: 3 ± 1.7 years) participated. 23/24 parents filled out the questionnaires. We found a higher score for the hypoglycemia fear behavior 33.9 ± 5.6 compared to hypoglycemia worry 34.6 ± 12.2. Median WHO-5 score was 16 (8 - 22) with poor well-being in two parents. Median daytime sleepiness score was high in five parents (>10). For six children a high total behavioral difficulty score (>16) was reported. Pro social behavior score was lower than normal in six children (<6). Parental well-being was negatively associated with HFS total (r = - 0.50, p <.05) and subscale scores (r = - 0.44, p <.05 for HFS-Worry and HFS-Behavior), child behavior (r = - 0.45, p = .05) and positively with child age and diabetes duration (r = 0.58, p <.01, r = 0.6, p <.01). HFS, parental well-being nor daytime sleepiness are associated with the HbA1c. Conclusion: Regular screening of parental well-being, hypoglycemia fear and child behavior should be part of routine care to target early intervention.