April 7-9, 2022 • Hyatt Regency • Lexington, KY
Communication Strategies to Promote Comprehensive Well-being
Communication Strategies to Promote Comprehensive Well-being
Abstract: Everyday Support Provision to Individuals with Chronic Illnesses: A Needs Assessment
Although social support yields emotional and physical benefits, effective support can be difficult to provide and complicated to receive. Researchers have explored the support-related challenges of caregivers, but there is a need to better understand the challenges and successes of informal support providers of people experiencing chronic illnesses. To that end, we conducted a community needs assessment. We employed two online surveys: one for people with one or more chronic illnesses (“support receivers”) and another for those who regularly provide informal support for someone with a chronic illness (“support providers”). The survey asked participants for examples of positive and unhelpful support provision and to rate their or their loved one’s need to develop 16 support-provision skills (1= little need; 2 = some need; 3 = great need), such as supportive listening and knowing when to provide support without prompting. We distributed surveys in July 2021 via illness-related groups on reddit.com, our personal social media accounts, emails to our social networks, and snowball sampling. Participants were entered into a raffle for $10 Amazon gift cards. Support providers (n = 91; age M = 31.16, SD = 9.4; 36% female) indicated strongest desire to learn how to: (a) stop expressing worry or pessimism; (b) comfort someone in distress; (c) be supportive despite personal challenges; (d) “be there”; and (e) express empathy (M range = 2.29 - 2.39). Qualitative data shows that providers struggle with support effectiveness: they do not want to be seen as “nagging” and are hurt when their efforts seem “futile” or spur disagreements. Support receivers (n = 97; age M = 31.29, SD = 9.66; 42% female) indicated their friends and loved ones need the most help learning how to: (a) effectively listen; (b) provide useful information or advice; (c) craft emotionally supportive messages; (d) provide comfort; and (e) “be there” (M range = 2.25 - 2.33). Qualitative data confirmed receivers’ dissatisfaction with “unsolicited advice,” “dismissal,” and “futile statements/meaningless platitudes,” indicating their desire to improve others’ ability to communicate genuine investment and concern. Receivers also felt that people blamed them personally for their illnesses. When provider and receiver datasets were analyzed together, about 30% of providers reported some need for listening skills, while 45% of receivers said there is great need, showing a disconnect between how well providers think they are listening and how well they actually are. Similarly, qualitative data indicated providers believed they are good at providing effective advice or informational support, though receivers note they often receive unsolicited, unhelpful advice. Receivers may not see that providers sometimes internally struggle to offer appropriate support, and providers may not realize how their support is perceived, suggesting a need for two-way perspective-taking. These data highlight important gaps between social support provision and reception in the context of chronic illness. Findings informed the creation of a workshop for support providers that teaches skills they want to learn, in addition to skills support receivers believe they lack.