Does Disability Severity Matter? The Daily Lives of Parent Caregivers of Children with Developmental Disabilities

Individuals with disabilities and their parents, even within specific disability diagnoses, have diverse life experiences and trajectories. The current study focuses on parents of individuals with developmental disabilities. Developmental disabilities (DD) are a diverse group of severe chronic conditions evident at birth or acquired during childhood that affect major life activities such as language, mobility, learning, self-help, and independent living; and include conditions such as Down syndrome, attention deficit hyperactive disorder (ADHD), autism spectrum disorders, and general developmental delays. This study builds on previous literature concerning stress, caregiving, and disability by examining the daily lives, experiences, and wellbeing of parents of children with DD. The majority of health and wellbeing research being done in this area focuses on overall or global wellbeing. Comparatively little research has examined the daily lives, experiences, and wellbeing of these parents, who exist within extremely fluid contexts that change daily. Furthermore, this study also aims to build on previous research by considering the severity of the child’s disability, in order to further contextualize and understand the complex levels of influence within these parents’ daily lives. Using data from the second wave of the National Study of Daily Experiences (NSDE), the daily diary project of the National Survey of Midlife in the United States (MIDUS), this study examined these topics further by answering three specific research questions; First, to what extent does the association between daily stressors and same-day positive and negative affect differ for parents of children with and without DD? Second, to what extent does the association between daily positive events and same-day positive and negative affect differ for parents of children with and without DD? And lastly, are these associations further moderated by the severity of the child’s disability? A total of 82 participants (Mean Age = 57.4; 59% female, 96% non-Hispanic White, 79% married, Mean Education = 14 years) were identified as parents of children with DD. A sample of 82 individuals who were parents of typically developing children were identified and matched as a comparison group based on: parent gender, parent age, number of children in the household, child age, whether the target child lives with the parent, parent marital status, and parent educational attainment. Participants completed 8 nightly telephone interviews, which included assessments of their daily stressors and positive events, as well as positive and negative affect. Results from the current study found that the daily lives of individuals with disabilities and their parents are diverse and complex. Compared to their matched counterparts, parents of children with DD experienced significantly greater increases in negative affect associated with the experience of daily stressors. In contract, parents of children with DD exhibited comparable increases in daily positive affect associated with the daily positive experiences. With respect to severity of disability, the longevity of the child’s disability diagnosis, the number of comorbid disability diagnoses, and the number of comorbid mental health diagnoses, did selectively moderate daily experience-wellbeing associations, but not in a symmetric fashion across indicators. Taken together, the daily experiences and daily wellbeing of parents caring for a child with a disability cannot be understood and defined merely by knowing their child’s disability status. Parents of children with DD may be vulnerable because of the chronic stress context of caring for a child with a disability, and they show more reactive patterns of daily wellbeing when experiencing daily stressors, however, they also show resiliency in their daily wellbeing when experiencing daily positive events. The current study attempted to better contextualize and understand the daily lives of caregiving parents by moving beyond a binary definition of disability (yes/no a disability is present), and findings suggest that severity of disability is a complex phenomenon in need of continued empirical investigation

Disability Inclusion in 4-H: Aligned with the Mission, Stopped Short by Methods

Quality out-of-school programs can significantly improve youth development outcomes. Youth with disabilities and special health care needs, who represent 19% of all youth, are less likely than their typically developing peers to participate in out-of-school activities. This qualitative study explored factors that influence the inclusion of youth with disabilities in one state’s 4-H program. Factors that facilitated inclusion were personal attitudes and subjective norms, but lack of knowledge and limited resources led to reactive problem solving rather than proactive, organizational planning. By identifying both the factors that facilitate inclusion and those that prevent it or are perceived as barriers, youth development professionals can target areas of focus to improve inclusion of youth with disabilities in 4-H and potentially other youth development programs