Lupus Patients Can Benefit from Counseling Others, Study Shows

Systemic lupus erythematosus (SLE) patients who volunteer for phone counseling with other lupus patients also benefit significantly from the experience, reporting reduced isolation and an increased ability to cope with their own disease, a study found.

The study, “The Effect and Psychosocial Impact of a Longstanding Telephone Peer Counseling Service on Volunteers with Systemic Lupus Erythematosus,” was presented at the American College of Rheumatology (ACR) 2018 Annual Meeting, on Oct. 22 in Chicago.

The positive effects of support and counseling on those with a chronic illness is well-documented. Patients often isolate themselves when they do not have a support system of people who understand how challenging a disease can be.

Counseling offers patients an opportunity to talk about their disease, become better informed, and learn from others in similar situations, thus helping reduce isolation and depression.

The LupusLine, created in 1988, is a free telephone peer support group for SLE patients and their families, operated by New York City’s Hospital for Special Surgery (HSS). It works by linking patients to trained volunteer counselors who also have lupus.

The LupusLine receives calls from the United States, Canada, Europe, South America, Jamaica, China, and India. It helps approximately 100 patients every month.

The positive impact that LupusLine has on callers has already been studied. However, researchers wanted to know whether it also had positive effects on volunteers.

“Previous studies have demonstrated the value of peer counseling programs for people living with lupus and other chronic health conditions. In the current study, we set out to assess the impact on the volunteers themselves,” Priscilla Toral, leading author of the study and manager of LupusLine, said in a press release. “We found that similar to the way the service helps callers, the counselor role positively impacts volunteers’ ability to cope with and manage lupus and reduces isolation.”

Researchers sent an online survey (43 open-ended questions) to 11 active LupusLine counselors. All participants were women ages 30-79. Most (91%) had SLE and had been counseling for 12 years on average.

All counselors said that the principal reason for starting the job was helping others with SLE; most (73%) mentioned enhancing their personal growth.

Most participants (91%) indicated that they were very satisfied with the job. They also reported having a better understanding of lupus (73%) and coping better (64%) with the disease since becoming counselors.

Almost half reported feeling less depressed, and 73% reported feeling less alone since joining the program.

“While having lupus may affect one’s self-esteem adversely, being able to use this experience to help others can be empowering,” said Roberta Horton, co-author of the study.

“Volunteers also benefit from the feeling of mutual support, personal development, and further lupus knowledge gained through ongoing group meetings, educational seminars, and individual supervision,” added Horton, who is assistant vice president, Department of Social Work Programs, at Hospital for Special Surgery.

When asked whether monthly seminars helped, 78% agreed, and 89% said it provided a space to reflect on their disease.

Overall, counselors said the most rewarding part of the job is “educational information that helps me understand SLE better” and “the opportunity to be outside of my own illness & connect with others.”

Although the sample size was small, Toral concluded that “the study reinforces the two-way flow of psychosocial support received by counselors through their support of callers and ongoing connections with peers and program staff via monthly seminars.”

“Our findings also highlight the continued relevance of a phone support service to people with lupus and opportunities for further research on the volunteer impact of peer-staffed programs,” she added.