HARNESSING VOLUNTEER NETWORKS TO DEVELOP A NEEDS ASSESSMENT PROTOCOL FOR PEER SUPPORT IN LUPUS CARE IN JAMAICA

PV095 / #822 Poster Topic: AS11 - Epidemiology and Public Health Background/Purpose In Jamaica, an estimated 6,000 individuals are living with Lupus, yet fewer than 2,000 are enrolled in national health benefit programs, and only 300 are actively engaged as members of the Lupus Foundation of Jamaica (LFJ), a 40-year-old education, support and advocacy group. Despite the growing recognition of peer support as an important and effective addition to comprehensive lupus management, lupus-specific peer support is underdeveloped in Jamaica due to limited funding, limited research capacity within lupus organizations, and low national priority. The LFJ set out to develop a peer support curriculum for lupus patients in Jamaica through a volunteer-led, participatory needs assessment, designed to identify the specific challenges faced by Jamaicans living with lupus. Methods A volunteer-led, multistakeholder collaboration guided the development of a needs assessment protocol to inform the peer support curriculum for persons living with lupus. LFJ volunteers, including persons living with lupus, caregivers, clinicians, and researchers worked together to ensure the study captured diverse patient experiences and priorities. The team conducted a brief literature review to understand the key considerations for designing and implementing peer support programs and to identify validated tools for assessing disease activity and experiences of persons with lupus. The draft survey was updated after a series of cognitive debriefing interviews with lupus patients, a caregiver, and a physician to ensure clarity, cultural relevance, and comprehensiveness. Additionally, the team established ethical and procedural guidelines, aligning with best practices in community engaged research. Strategies were developed to recruit participants through a range of networks including treatment centers, community and professional groups, and social media to maximize reach and diversity. The protocol was reviewed and approved by the medico-legal advisory committee of the Ministry of Health and Wellness, Jamaica. Results The final protocol incorporated qualitative in-depth interviews, focus group discussions (FGDs), and a self-administered electronic survey to identify gaps in lupus care and support. Data collection will include 6 to 8 in-depth interviews and 3 to 5 FGDs with persons with lupus, caregivers, and healthcare providers. Additionally, a target sample of 196 lupus patients, 33 healthcare workers, and 49 caregivers will be recruited to complete the electronic questionnaire. The tool was designed to be accessible and inclusive. Volunteer team of researchers and LFJ staff will lead recruitment, data collection, data analysis and synthesis to formulate recommendations for the peer support curriculum. Conclusions This project, the first of its kind in the Caribbean, provides a model for integrating peer support into lupus care in low-resource settings. It demonstrates the potential for volunteer-driven research to address capacity and funding limitations in nonacademic lupus organizations, and drive impactful health research, providing a model for other low-resource settings seeking to improve comprehensive lupus management. The finalized needs assessment protocol is a critical step toward developing a culturally relevant, patient-driven peer support program that is tailored to the specific needs of lupus patients in Jamaica. Findings from the needs assessment will guide the development of LFJ’s peer support training curriculum, helping the Foundation to prioritize limited resources while also establishing baseline data for future evaluations.