Caregivers of People with Disabilities Need Support Too, Studies Show

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By Linsey Maughan

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Through his work in the ADAPT Psychology Lab at Illinois Institute of Technology, clinical psychology Ph.D. student Jonathan Tsen is gaining real-world research experience around the support needs of not only people living with chronic illness and disability, but also their caregivers. 

“I was involved in a study on caregivers of transition-aged youth living with intellectual and developmental disabilities that my colleague Melissa Ivins-Lukse and my research adviser presented at the 2019 Rehabilitation Psychology Conference in Orlando, Florida,” says Tsen, whose adviser is Eun-Jeong Lee, an associate professor of psychology who runs the ADAPT Psychology Lab. “We found that, for this population, perceived social support benefited participants by influencing a reduction in self-reported anxiety, as well as a boost in self-esteem in parenting, sense of resilience, and life satisfaction.” 

In addition, Tsen and his colleagues also discovered a paradox in their research findings. For some caregivers, social support helped them to feel less stigmatized in their experience of depression or anxious moods. For others experiencing feelings of loneliness or isolation, increased social support actually had the opposite effect, leading to elevated feelings of anxiety and depression. 

“I think membership in any minority group can be stressful for a number of reasons, and it only makes the situation worse that many of these individuals feel that they don’t have adequate support or a sense of belonging from friends, family, or society at large,” Tsen says. “How do we help these populations ask for support from others, and what can we do to encourage people to provide that support? I’m hopeful to answer, in part, some of those questions.” 

The ADAPT Psychology Lab’s mission is to explore psychosocial and cultural issues experienced by people with disabilities as well as their caregivers. Lee and her colleagues consider caregivers to be “hidden patients,” as they are often overlooked as treatment focuses on the individuals with disabilities within their care.

“We are looking into not only positive factors, including resilience, coping styles, social support, compassion, and life satisfaction, but also negative factors, including burnout, perceived stress, blame, affiliated stigma, and depression,” Lee says. “We are interested in how these variables are related and impact overall psychosocial adaptation and adjustment to disability.”

Recent studies that the group has published have looked at perceived stress among Korean caregivers, family caregiving and adjustment, and the experiences of caregivers for individuals with brain injuries.

“Caregivers are often forgotten even though they are the ones who do a lot of heavy lifting for treatment adherence, monitoring [the condition of the person in their care], and providing supports,” Lee says. “Their daily routines and employment are also significantly impacted by the disability condition their partners or family members have, and their mental health and physical health are impacted as much as the individuals with disabilities. However, caregivers are reluctant to share their own issues, and they often do not receive any reward or payment for their work. These hidden components drew my lab to explore issues around caregivers.”

Tsen is now involved in research exploring the interpersonal needs of social belonging and participation as well as suicide risk in the general caregiver population. 

“I’m very hopeful that this research will help us identify how social support, belonging, and burden impact risk for poor mental-health outcomes, especially in people who are at risk of suicide,” he says. “In turn, once we understand what support-related factors impact these poor outcomes, we can develop interventions to increase individuals’ sense of feeling supported and belonging.” 

Photo: Clinical psychology Ph.D. student Jonathan Tsen