People who help people: A needs assessment of those who provide interpersonal support to individuals with chronic illnesses

Abstract

AbstractSocial support during an ongoing illness has been shown to be beneficial for both the provider and the receiver, but people often struggle with offering effective, appropriate support. There is a lack of communication‐focused training not specifically tied to caregiving or training that is designed for all social network members of a person experiencing a chronic illness, which we call interpersonal support providers (ISPs). We conducted a concurrent mixed‐methods needs assessment, surveying both ISPs and support receivers, to understand communicative challenges and inform an evidence‐based intervention. Analysis of results from an online survey (Nproviders = 91, Nreceivers = 97), consisting of five open‐ended and 15 quantitative items, suggests that ISPs have difficulty managing their worries and emotions while providing comfort to others, which may impact support quality. In addition, ISPs and receivers both identify “listening” as a key skill for ISPs to hone, though ISPs feel they are more skilled at listening than receivers say they are. Lastly, ISPs feel they are good at sharing information and advice, but receivers often perceive it as patronizing or unhelpful. These results will inform the creation of an intervention for everyone offering emotional, esteem, and informational support to individuals with chronic illnesses.