Background/Purpose:

Studies show telephone peer support has been used to address a range of health concerns in people living with chronic illness. A phone evaluation was conducted with participants of a national toll-free phone peer counseling service. Ongoing since 1988, this service provides emotional support for people with SLE and their loved ones, by trained volunteers living with SLE. The evolution of this program has been presented at prior ACR/ARHP, including the impact of a revised curriculum on a new cohort of peer volunteers staffing the service.

Methods:

A 60-item survey, with Likert scale & open-ended questions was administered to callers who were matched with a peer-counselor between 2015-2017. The survey captured demographics, satisfaction with the screening process & their peer counselors, SLE management/ coping & overall service impact. Surveys were completed by phone interviews with a volunteer not directly connected to program.

Results:

Of the 32 users outreached to 23 (72%) completed the survey. The majority (89%) of respondents were female, 47% identified as Black/African-American, 35% White, 31% Hispanic &18% some other race. Callers’ ages ranged from 30-80, with 67% ages 40-59. Most respondents were unemployed (43%) & 39% employed part/full time. Almost half of the callers (47%) were married, 94% had SLE & diagnosed for ˃ 12 years. When asked about their initial reasons for calling 68% indicated emotional support & SLE education & resources (63 %). Most participants were satisfied (90%) with the screening call with the social worker. When asked about initial expectations of their first call, callers shared, “I wanted to know more about SLE” & “have someone to listen & guide me.” Most callers indicated their expectations were met (95%). Callers shared that having someone knowledgeable about SLE (72%) was the most valuable aspect of the call. Most callers (52%) had ˃ 12 calls with their peer counselor & 95% were satisfied (77% very; 18% moderately) with their match.

In relation to coping, 85% indicated that they have coped better with their SLE since being matched & 81% agreed they had a better understanding of SLE. 88% respectively attributed this to utilization of the program. When asked about depression 66% reported feeling less depressed since starting the service with a majority of callers (78%) crediting the service for this change. Callers also reported feeling less isolated (71 %) with 73% indicating this was also a result of the service. One caller shared, “I feel less alone.”

When asked if their communication & or relationship with their doctor improved since using the service 58% said yes & 100% indicated that the program was responsible for this. When asked about the single most helpful part of using the service responses included, “you know you can call the line & there is someone to listen” & “knowing support is a phone call away.” Most (94%) indicated they would recommend the service to others.

Conclusion:

Despite limitations due to a small sample size, results indicate continued satisfaction & positive impact, with slight increases since last evaluation. Results point to the continued relevance of a phone support service that is easily accessible & can connect people with SLE & their loved ones to support & resources.

« Back to 2017 ACR/ARHP Annual Meeting

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