Background/Purpose: With technology rapidly evolving, studies still reinforce the value of telephone peer support for people living with chronic illness. A follow-up evaluation was conducted with participants of a national phone peer counseling service. Ongoing since 1988, this service provides emotional support & education for people with SLE & their loved ones. The program’s evolution has been presented at prior ACR meetings, including the psychosocial impact of the service on the volunteers themselves.

Methods: A 62-item online survey, with Likert scale & open-ended questions was administered to callers who used the service for > 6 months during 2020-2021.The survey assessed overall satisfaction & impact, including the relationship/satisfaction with the peer counselor match. Other areas assessed included specific changes in feelings & actions taken as a result of the service.

Results: Of 43 users outreached to, 29 (67%) completed the survey. Most (89%) respondents were female, 28% identified as Black/African-American, 40% White, 23% Hispanic & 20% some other race. Callers’ ages ranged from 30-80 with 78% ages 30-59. 52% were employed/self-employed & 19% were unable to work. All respondents had SLE mean year since diagnosis was 12.

Almost all (93%) identified emotional support & coping/SLE management as their initial reasons for calling. When asked about initial expectations of their counselor, callers shared “to gain information & receive emotional support.” Most callers (86%) agreed these expectations were met. When asked how their peer counselor met these expectations, participants shared: “non-judgmental & knowledgeable about SLE”. About half (45%) had ˃ 12 calls with their peer counselor; 97% were very satisfied/satisfied with their match.

Regarding coping, 82% indicated they have coped better with their SLE since using the service & 74% agreed they had a better understanding of SLE. When asked about depression, 59% reported feeling less depressed since joining the service with most callers (81%) crediting the service for this change. Regarding anxiety, 70% reported feeling less anxious since using the service with 74% attributing this to the program. Most (89%) reported feeling less isolated with 78% crediting this to the service.

Over half (60%) indicated their communication with their doctor improved since using the service & 73% attributed this to the program. When asked about the single most helpful part of using the service responses included: “being connected to someone with lived experience with SLE” & “the consistency of the counselor & supervisor.” Almost all (96%) would recommend the service & 92% indicated they are very satisfied/satisfied with the service overall.

Conclusion: Despite limitations of a small sample size, results indicate ongoing satisfaction & positive impact, with slight increases since last evaluation in overall service satisfaction & peer match. Results point to the continued benefit of an accessible telephone support service that connects people with SLE & their loved ones to trained peers. The study highlights further opportunities for research on the impact of phone peer model programs, as traditional in person support forums are limited due to the pandemic.

« Back to ACR Convergence 2021

ACR Meeting Abstracts - https://acrabstracts.org/abstract/a-follow-up-evaluation-of-a-longstanding-telephone-peer-counseling-service-for-people-with-systemic-lupus-erythematosus-and-their-loved-ones/