Respite Care for Families of Children and Adults with IDD
We are currently focusing our family research on experiences with respite care. Respite care refers to any temporary relief of caregiving duties. We have conducted surveys and interviews with caregivers about their experiences working with respite care providers in the past as well as their suggestions for topics to include in a respite care training curriculum for undergraduate students. Similarly, we have surveyed undergraduate students about their experience providing respite care and perceived gaps in understanding.
Family Composition and the Caregiving Journey: The Influence of Family Structure on Raising Children with Disabilities
The structure of a family plays an important role in shaping the experiences and well-being of parents raising children with disabilities. Family structure (whether a two-parent household, single parent household, extended family household, or other arrangement) can affect how caregiving responsibilities are distributed, the availability of emotional and practical support, and the resilience of parents. Caregivers of children with disabilities face unique challenges, including increased caregiving demands and emotional strain. Previous studies have shown that parents of children with disabilities experience higher levels of stress than other parents. These challenges can be amplified or mitigated depending on the structure of the family, which can influence not only the resources available to caregivers but also their perceptions of the support or isolation they may be experiencing. While existing literature highlights some of the general stressors experienced by parents and caregivers of children with disabilities, few studies have explored how family structure specifically can shape these experiences. The purpose of this study is to draw conclusions on what the current literature says about family structure and the experiences of caregivers with children with disabilities.
Student researcher: Caroline Pare, Speech, Language and Hearing Sciences, 2025 with assistance from RAs Gianna Smith, Keira Johnson, and Tommy Tan
Presentation: Neurodiversity and Disability Studies Summit, April 5, 2025