Date of Graduation
School of Pharmacy
Pharmaceutical Systems and Policy
S Suresh Madhavan
Michael J Smith
Caring for a child with autism is a challenging experience for parents, who also have to assume the role of a caregiver. Several studies have documented the occurrence of negative outcomes among caregivers of children with autism. Autism has been shown to affect every aspect of caregivers' lives, whether it is their mental health, physical health, financial health, or social health. The purpose of this study was to gather in-depth information about the impact of autism on primary caregivers. Both qualitative and quantitative research methods were used for this purpose. As part of the project, three studies were conducted. Data for study one was collected using focus groups, while that for study two and three were collected using a cross-sectional survey of primary caregivers of children with autism. In the first study, focus group discussions were conducted to understand caregivers' experiences, needs, and concerns. Participants in focus groups described an adverse impact of autism on their emotional, physical, and social health. Participants reported an urgent need for respite care, support services, informational support from service providers, and insurance coverage of autism treatments. In the second study, psychometric properties of the Caregiver Strain Questionnaire (CGSQ) were tested for use among caregivers of children with autism. The results indicated acceptable factorial validity, convergent validity, discriminant validity, internal consistency reliability of the CGSQ in this population. Until a burden instrument specific to caregivers of children with autism is developed, researchers could use the CGSQ to capture the caregiving experiences in this population. The third study assessed the impact of caregiving on health-related quality of life (HRQOL) of primary caregivers of children with autism. After adjusting for age and gender, the HRQOL scores of caregivers were found to be lower than those of the general US population. Caregiving situational factors such as family functioning, social support, and coping mechanisms were found to have a significant effect on caregiver burden and HRQOL. These findings emphasize the use of multi-pronged intervention approach that incorporates components aimed at improving family functioning, increasing support services, and assisting caregivers in developing healthy coping skills.
Khanna, Rahul, "Burden of care and health -related quality of life among caregivers of children with autism spectrum disorder" (2010). Graduate Theses, Dissertations, and Problem Reports. 4618.