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.
