Participation Doubles After Lupus Support Group at HSS Goes Virtual During Pandemic

A study at the Hospital for Special Surgery (HSS) highlights the success of a lupus peer support and education group that transitioned to a virtual format during the pandemic. In addition to receiving high ratings from group members, participation more than doubled after the meetings went remote.

“Research has demonstrated the benefits of an online peer support platform for addressing mental health, disease self-management, and addressing the needs of people living with a chronic illness,” explained Giselle Rodriguez, LCSW, Charla de Lupus Social Work Coordinator (Lupus Chat). ) at HSS. “Although in-person meetings were no longer viable during the pandemic, the virtual groups offered an effective platform for patients to continue to meet their peers, reduce isolation and expand the reach of more family members at home and across the country.”

Rodriguez presented the study, “Evaluating the efficacy and impact of an in-person peer support group transitioned to a virtual setting during the COVID-19 pandemic,” at ACR Convergence 2022, the annual meeting of the American College of Rheumatology, in Philadelphia. on November 12.

In the monthly support group, which has been held at HSS since 2001, social workers, rheumatologists and other health professionals offer information on topics related to lupus, such as medications, nutrition, pain management and research. The bilingual social work team translates all presentations into Spanish to distribute to Spanish-speaking members for the Zoom meetings. Additionally, all interactions in the chat box are translated live during the sessions to encourage Spanish speakers to participate. Some groups offer simultaneous translation.

To assess the effectiveness of the meetings, members received an online survey with multiple choice and open questions after nine virtual sessions from September 2020 to June 2021. The researchers conducted a comparative analysis with surveys conducted by in-person groups held in 2018-2019 to assess coverage, satisfaction, knowledge , coping and disease management.

Coverage increased significantly after switching to a virtual group, with 373 participants compared to 177 in 2018-2019. Responses highlighted the benefits of a virtual group, such as removing transportation barriers, the ability to join the meeting from anywhere, and ease of participation by sharing a link. Limitations include the inability to connect one-on-one, no internet access, and challenges using Zoom.

Main results:

  • 99% of respondents said they were satisfied with the virtual groups
  • 98% agreed that the groups increased their understanding of issues related to lupus
  • 98% agreed that the program met their expectations
  • 97% agreed that they would recommend this group
  • 95% agreed that they could apply what they learned to manage their lupus
  • 93% agreed that the groups helped them cope with lupus

No significant differences were found when comparing most responses from in-person groups conducted in 2018-2019 and the virtual group. However, in the sham group, there was an 8% increase in respondents indicating that the sessions helped them cope with lupus.

Comments from survey participants showed that they appreciated the virtual format:

“It was a great idea to switch from in-house programming to virtual programming. Charla should have this virtual format or a combination of programming and virtual programming to easily attend all meetings without missing a single one.”

“Charla has used Zoom very well for each of their programs. Although the experience is not the same as in person, each program was equally informative.”

“I love the Zoom meeting as it is a way for everyone to stay connected from home healthy and safe.

“I would not have been able to attend the meetings because of the location.”

Monthly lupus support groups and special events continue to be held online via Zoom. Rodriguez and colleagues are evaluating participants’ interest in a hybrid model that uses both in-person and virtual groups in the future.

Provided by Hospital for Special Surgery

Quotation: Participation doubles after HSS lupus support group switches to virtual format during pandemic (2022, November 12) Retrieved November 12, 2022 from https://medicalxpress.com/news/2022-11-lupus-group-hss -transitions-virtual .html

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