How caregiving and health affect parents of adults with profound autism
Official title: 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
Funded at Pennsylvania State University, the · NIH-11127377 · Data updated 2026-11-12
This project looks at how the demands of caregiving, caregivers' health, and the adult child's needs influence the quality of life of parents caring for adults with profound autism.
Quick facts
| Grant type | Fellowship grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Pennsylvania State University, the NIH-funded |
| Lab location | 1 site (University Park, United States) |
| Project start | July 1, 2024 |
| Project end | June 30, 2027 |
| Funding year | 2025 |
| Award (this year) | $37,770 |
| NIH project number | 5F31NR021333-02 |
| Project ID | NIH-11127377 on NIH RePORTER |
Who could benefit from this research
✓Could help
Parents (familial caregivers) of adults aged 18 or older with profound autism (very substantial support needs/level 3) who provide ongoing daily care.
✕Less likely to help
Caregivers of children under 18, providers who are not parents, or those caring for people with milder autism may find the findings less directly applicable.
What this research studies
If you are a parent caring for an adult with profound autism, researchers will ask you to complete questionnaires about your health, daily caregiving tasks, and quality of life. The team will analyze those survey responses to find patterns linking caregiver factors and care-recipient needs to wellbeing. Some participants will be invited to longer interviews so they can describe their experiences in more detail. Together the surveys and interviews aim to give a fuller picture of what helps or harms parents' quality of life.
Why it matters
Potential benefit: Results could help shape better supports, services, and policies to reduce burden and improve quality of life for parents caring for adults with profound autism.
How similar studies have gone: Previous research has documented caregiver burden broadly, but mixed-methods work focused specifically on parental caregivers of adults with profound autism is less common.
Where this research is happening
-
Pennsylvania State University, the
University Park, United States Active
Researchers
- Principal investigator: Wellington, Jessica — Pennsylvania State University, the
- Study coordinator: Wellington, Jessica
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About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.