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

Award Number: F31NR021333
ORGANIZATION: NATIONAL INSTITUTE OF NURSING RESEARCH
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: FELLOWSHIP/SCHOLARSHIP/STUDENT LOANS
PERIOD OF PERFORMANCE START DATE: 07/01/2024
PERIOD OF PERFORMANCE END DATE: 05/31/2027

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Examining the relationship between caregiving factors predictors of health, and quality of life among parental caregivers of adults with profound autism: A mixed methods study - More than 71% of individuals with developmental disorders 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 cognitive impairment , 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 predictors 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.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $38,503 )
2026	2026	THE PENNSYLVANIA STATE UNIVERSITY	201 OLD MAIN	UNIVERSITY PARK	PA	16802	CENTRE	USA	Nursing Research	000	3	6/19/2026	NON-COMPETING CONTINUATION	$38,503
														Subtotal = $38,503

Issue Date FY: 2025 ( Subtotal = $37,770 )
2025	2025	THE PENNSYLVANIA STATE UNIVERSITY	201 OLD MAIN	UNIVERSITY PARK	PA	16802	CENTRE	USA	Nursing Research	000	2	9/5/2025	NON-COMPETING CONTINUATION	$37,770
														Subtotal = $37,770

Issue Date FY: 2024 ( Subtotal = $37,206 )
2024	2024	THE PENNSYLVANIA STATE UNIVERSITY	201 OLD MAIN	UNIVERSITY PARK	PA	16802	CENTRE	USA	Nursing Research	001	1	6/26/2024	NEW	$0
2024	2024	THE PENNSYLVANIA STATE UNIVERSITY	201 OLD MAIN	UNIVERSITY PARK	PA	16802	CENTRE	USA	Nursing Research	000	1	6/26/2024	NEW	$37,206
2024	2024	THE PENNSYLVANIA STATE UNIVERSITY	201 OLD MAIN	UNIVERSITY PARK	PA	16802	CENTRE	USA	Nursing Research	002	1	8/7/2024	NEW	$0
														Subtotal = $37,206

Grand Total All Awards = $113,479

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

Award Number: F31NR021333

ORGANIZATION: NATIONAL INSTITUTE OF NURSING RESEARCH

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: FELLOWSHIP/SCHOLARSHIP/STUDENT LOANS

PERIOD OF PERFORMANCE START DATE: 07/01/2024

PERIOD OF PERFORMANCE END DATE: 05/31/2027

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