Kirsten Penrose has researched the experiences of parents of adult children with autism spectrum disorder and intellectual disabilities. Now the Master’s student in kinesiology wants to know what new challenges they’ve faced due to the global pandemic.
Penrose is working with human kinetics professor Sean Horton on a research project that involves interviewing 20 moms or primary caregivers — 10 caring at home for adult children with intellectual disabilities and 10 with such adult children living in group homes. The findings will be shared with service providers and government agencies that make policy decisions in the hope of improving life for these families and others like them.
“There really is no research on parenting an adult child with an intellectual disability during a pandemic,” said Penrose. “I want to create a rich, authentic narrative that outlines parental concerns, challenges, and positive outcomes.”
Penrose’s research is being funded by the University of Windsor and Mitacs, a national non-profit organization that brings together Canadian academia, private industry, not-for-profit organizations, and government to provide research and training opportunities.
In all, the University of Windsor is spending $471,000 on research internships across all faculties. Penrose, who hails from Windsor, is one of 107 UWindsor students receiving research training awards of $6,000 each.
The idea for the project stemmed from Penrose’s past internship with The Centre for Human Performance and Health on a project with UWindsor’s Adapted Physical Exercise Research Group and Community Living Essex County, developing fitness and sports programs for adults with intellectual and development disabilities.
“My internship and research opportunities enabled me to truly connect with mothers, building rapport and trust, which allowed for open and honest communication,” she said.
The research focuses on caregivers of adults aged 21 or older. Penrose interviews each caregiver over the phone or online twice, first as an introduction, and the second time to learn such things as how the caregiver and child have been coping during COVID, what challenges they’ve faced, and how they’ve overcome any difficulties.
The research hopes to capture all the challenges the pandemic has posed for families, said Dr. Horton.
“For parents with (adult) children living in group homes, the social distance visits have been particularly hard on them. It has often meant speaking over a fence or on the phone, without any physical contact, which has been difficult for both the parent and the child,” he said.
“With a family unit with adult children living with the parents, routines have been disrupted, and there have been concerns about support workers coming into the house given the COVID considerations.
“Some families have fared better than others, which is understandable. There’s a lot of variability, hence our in-depth interviews to try to really get at people’s stories and circumstances.”
Penrose hopes to have the interviews complete by the end of September, rolling out the findings in the fall.