Surveying Young People About Their Social Support as Chronic Illness Patients

There is an opportunity for young people to share their experiences finding social support as chronic illness patients.

Dr. Kateryna Sylaska, Assistant Professor of Psychological Science at the Department of Psychological Science at Carthage College, along with undergraduates Anne Ewart and Ashley Lundell are running investigating this. The objective is to better understand the perceptions, attitudes, and experiences of young people coping with chronic illness. Their focus is on learning more about where people find their social support as chronic illness patients.

Here’s Dr. Sylaska to talk about herself and her research….

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WHERE THIS IDEA CAME FROM

I was diagnosed with multiple sclerosis in 2013, while I was in graduate school. A friend/classmate of mine was diagnosed with cancer around the same time. Together, we quickly realized how important it was for us to have tangible support from the people around us as we worked to establish a routine and a “new normal.” As psychologists in training, we turned to the research literature to validate our experiences and learn from the themes of those further on their journey living with a chronic illness.

We quickly found that there was scant research on experiences with social support and how different forms of social support facilitate disease management. Recognizing this gap, we sought to create meaning out of our own experiences and started brainstorming…. What would research on social support for chronic illness look like? Those brainstorming sessions evolved over time into what is now my main line of research.

WHY SOCIAL SUPPORT IS IMPORTANT

Overall, we know from a long history of research that social support is important. Having stable people in our lives who can provide empathy, reassurance, guidance, acts of service, etc. improves our self-image, our overall quality of life, and acts as a buffer when we experience negative life events. Specific to health, research suggests that having good social support lessens the intensity and duration of negative health events.

WHAT WE DON’T KNOW

However, we don’t have much information about how our social support systems function and shift over the course of a long-term chronic illness. And we have very little information about this process for young adults, which is often when diagnoses are initially made.

For example…

• How do friends and family respond immediately after a young adult is diagnosed?
• How does the response of social networks influence how an illness is managed?
• Importantly, how do social network members respond to repeated calls for support? I.e., do they have the same energy on the fifteenth occurrence as they did on the second occurrence?
• How do these responses influence the person with a chronic illness?
• Does it get harder to ask for help?
• What strategies are employed to manage the disease and maintain quality of life?

These are the sorts of questions that I ask in my research.

HOW TO PARTICPATE

The current survey I’m conducting follows from a series of three interview studies I’ve conducted over the last 5 years. In each interview study, my research team and I have led 30-60 minute interviews with 18-25 year olds across the US with a chronic illness diagnosis. Research participants have shared how people in their life have provided (and failed to provide) support when it was needed, what makes it difficult to even seek out support from others, and how they overcome barriers to seeking help. I’ve learned a lot from those we’ve interviewed, and I am honored that they have shared their stories.

We’ve taken some of the ideas from those interviews and created an online survey to see how well those themes resonate with a larger population of young adults with a chronic illness — YOU! Research is an iterative process – we learn something from each study and use it to design the next so that over time we can have a nuanced understanding of the human experience.

READ THE CONSENT FORM and PARTICIPATE IN THE SURVEY HERE

My goal is to work toward a complex understanding of how young adults engage with their social networks, how social networks respond, and how we might better educate our social networks on how to best support those with a chronic illness through the highs and lows.

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