HSS says its free LupusLine, now 29 years old, receives calls from around the world. People mostly know about it through their physicians, the internet, their community or lupus organizations. Since 2005, the number of inquiries has more than doubled, with LupusLine now averaging 80 to 100 calls a month.
The support line has volunteers counseling callers in the United States, Canada, Europe, South America, Jamaica, China and India.
Because it can lead to isolation from family and friends who don’t understand the illness, lupus can be challenging. That’s why it’s important to so it’s very valuable to have a peer counselor, someone who can understand their experiences and who can listen while guiding them.
When a patient contacts LupusLine, a clinical social worker will conduct an initial screening and assessment, and schedules that patient with a trained volunteer for a private counseling session at a specific time. Callers may receive ongoing support weekly, biweekly or monthly support in English or Spanish. Services in Chinese are provided through LANtern, another HSS program.
“Volunteers, most of whom have lupus themselves, receive 20 hours of training to acquire skills related to counseling, support and active listening. Bimonthly seminars provide them with additional education,” LupusLine’s program manager, Priscilla Toral, said in a press release. “Four of the counselors have been with the support line since it was established in 1988.”
An HSS questionnaire conducted between 2015 and 2017 asked responders about demographics, satisfaction and overall impact of LupusLine support; 23 callers ranging from 30 to 80 years old responded. When asked why they first called LupusLine, 68 percent said they were mostly seeking emotional support, besides resources and education about lupus.
Respondents reported very high satisfaction rates, with 95 percent saying they were happy with their counselor match; in addition, 94 percent said they’d recommend LupusLine to a friend, and 90 percent thought the initial screening was positive.
Additionally, 85 percent reported coping better with lupus since their counseling, 81 percent improved their own understanding of lupus (with 88 percent crediting the program for it), and 72 percent said that having someone informed about lupus was the most valuable aspect of the service.
Furthermore, 66 percent of respondents reported feeling less depressed since starting counseling, with 78 percent of those saying LupusLine was responsible for this change. Just over half (52 percent) reported having more than 12 calls with their peer counselor.
“At a time when technology is moving so quickly and we’re moving to different modes of communication, our study shows that telephone communication is still a viable way to connect with people all over the world to support them and educate them about chronic illnesses such as lupus,” said HSS’s Jillian Rose, assistant director of community engagement, diversity and research. “The service provides callers with solid support by trained peer counselors.”