Understanding how caregiving and social factors affect the lives of parents caring for adults with profound autism

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

NIH-funded research Pennsylvania State University, the · NIH-10996217

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 typeFellowship grant
Study typeNIH-funded research
Funding institutionPennsylvania State University, the NIH-funded
Lab location1 site (University Park, United States)
Project IDNIH-10996217 on NIH RePORTER

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.

Who could benefit from this research

Good fit: Ideal candidates for this research are parents or family members of adults with profound autism who are currently providing care.

Not a fit: Patients who do not have a familial caregiver or those with autism who do not require substantial support may not benefit from this research.

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 performed: 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

University Park, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Conditions Autistic Disorder
Last reviewed 2026-06-10 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.