Examining the relationship between caregiving factors, social determinants of health, and quality of life among parental caregivers of adults with profound autism: A mixed methods study

ABSTRACT More than 71% of individuals with developmental disabilities are being cared for by familial caregivers, and this caregiving often extends beyond childhood. It is estimated that 5.5 million people aged 18 and older in the United States are diagnosed with autism, a number that is expected to increase with rising prevalence rates.

Individuals with autism and very substantial support needs (level 3), also known as profound autism, often have co-occurring severe intellectual disability, little to no functional communication, and require 24 hour-a-day care. It is estimated that those with high support needs encompass up to 48% of the spectrum. Many

caregivers are family members, often an aging parent. Parents face many challenges in raising children with autism, such as lack of resources, lack of support, and financial strain. It is not well known how these challenges continue or change as the child becomes an adult, and the caregiving needs continue and often

increase. With an economic value estimated at 600 billion dollars, informal familial caregiving is a crucial component to the healthcare system in the United States. The purpose of this mixed methods study is to better understand how social determinants of health, caregiving factors, and care-recipient factors impact parental

caregiver quality of life and explore the context and relationship of these factors in-depth to create a better understanding of the caregivers’ experiences. The proposed research seeks to utilize an explanatory sequential mixed methods design to better understand the caregiver’s experience. Previous research

highlights the need for increased and improved research into the quality of life of parental caregivers as improved caregiver quality of life can lead to improved outcomes for the adult-child with profound autism. To successfully accomplish this research and my future career goals, a training plan with three key areas has

been developed: 1) expand my knowledge of mixed methods study design, data collection, and analysis, 2) deepen my understanding of caregiving science and how it can be used to understand the needs of those caring for adults living with autism, 3) strengthen my scientific writing and presenting skills. An interdisciplinary

mentorship team and the strong research infrastructure at Penn State will support the project and my career development.