Volunteering helps lupus patients, study shows

Volunteering for a free telephone counseling service helps lupus patients as well as callers. A study by the Hospital for Special Surgery (HSS) showed that volunteering in a peer support and education program helps lupus patients. The Hospital for Special Surgery is in New York City.

Researchers presented their study on October 22nd at the annual meeting of the American College of Rheumatology/Association of Rheumatology Health Professionals in Chicago. The study was titled ‘The Effect and Psychosocial Impact of a Longstanding Telephone Peer Counseling Service on Volunteers with Systemic Lupus Erythematos.’

Priscilla Toral said:

“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.”

“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.”

Toral, LCSW, is a Program Manager of LupusLine®/Charla de Lupus (Lupus Chat)® at the Hospital for Special Surgery. LCSW stands for Licensed Clinical Social Worker.

LupusLine® helps lupus patients

LupusLine® helps lupus patients and their families with support and education. The support comes from people with lupus. The service, which has existed since 1988, is available to anybody with a toll-free phone number.

Apart from the US, volunteers have counseled callers from India, China, Jamaica, S. America, Europe, and Canada.

Not only did the counselors have the opportunity to help others, but they also gained valuable knowledge about lupus during the volunteer training program. The training program lasted eighteen hours.

Volunteering helps lupus patients
LupusLine® helps lupus patients. LupusLine® volunteers also have lupus. They say the volunteer work benefits them. (Image: Adapted from LupusLine® brochure)

Monthly seminars, they said, helped them work through challenges. The seminars also provided a space for them to reflect on their chronic illness. Chronic means long-lasting. Lupus is a chronic illness. In other words, if you receive a lupus diagnosis, you will be a lupus patient for the rest of your life.

Lupus is also a systemic disease. In other words, it affects the whole body (the whole ‘system’). This means that there are many possible signs and symptoms.

Feeling of mutual support

Roberta Horton said:

“While having lupus may affect one’s self-esteem adversely, being able to use this experience to help others can be empowering.”

“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.”

Horton, LCSW, ACSW, is Assistant Vice President at HSS’ Department of Social Work Programs. ACSW stands for Academy of Certified Social Workers.

The study

In this study, volunteers completed a 43-item online survey. The counselors were are female, aged between 30 and 79 years. One-third of them were between 60 and 69 years old. They had been counselors for an average of twelve years.

Below are some highlights of the study’s findings:

– Ninety-one percent of counselors were very satisfied with their role.

– 100% of respondents said they become counselors to help others. Seventy-three percent said they also wanted to enhance personal growth/development.

– Eighty-two percent said they wanted to continue as counselors to meet other lupus patients. Seventy-three percent said it was because of the support of program staff.

– Seventy-three percent said that since they started volunteering as counselors, they had a better understanding of lupus.

– Forty-six percent of respondents said that since starting their volunteer work, they had felt less depressed.

– Seventy-eight percent said that the monthly seminars helped them cope better. Eighty-nine percent said the seminars provided a space for them to reflect on their illness.

Evidently, voluntary work helps lupus patients cope with the challenges of their illness.

Most rewarding part of volunteering

The respondents said the two most rewarding parts of their role were:

– “Educational information that helps me understand lupus better.”

– “The opportunity to be outside of my own illness and connect with others.”

Toral said:

“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.”