Understanding how caregiving and social factors affect the lives of parents caring for adults with profound autism
Official title: 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
Funded at Pennsylvania State University, the · NIH-10996217 · Data updated 2026-11-12
This study is looking at how parents who care for adults with profound autism feel and what challenges they face, so we can better understand their needs and improve their quality of life.
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 | 2024 |
| Award (this year) | $37,206 |
| NIH project number | 1F31NR021333-01 |
| Project ID | NIH-10996217 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are parents or family members of adults with profound autism who are currently providing care.
✕Less likely to help
Patients who do not have a familial caregiver or those with autism who do not require substantial support may not benefit from this research.
What this research studies
This research investigates the experiences of parental caregivers who support adults with profound autism, focusing on how various social and caregiving factors influence their quality of life. By employing a mixed methods approach, the study aims to gather both quantitative data and qualitative insights to explore the challenges these caregivers face as their children transition into adulthood. The research will examine the ongoing needs of caregivers and the impact of social determinants of health on their well-being, ultimately seeking to provide a deeper understanding of their experiences and needs.
Why it matters
Potential benefit: If successful, this research could lead to improved support systems and resources for caregivers, enhancing their quality of life.
How similar studies have gone: Previous research has shown that understanding caregiver experiences can lead to effective interventions and support, indicating that this approach has potential for success.
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.