A holistic approach to well-being and neglected tropical diseases: evaluating the impact of community-led support groups in Nigeria using community-based participatory research.

BACKGROUND: Neglected tropical diseases (NTDs) affect around 1 billion people, many living in the poorest parts of the world. NTDs often lead to serious long-term physical impairments. Stigma, disability, poverty and social isolation interact, resulting in poor quality of life and significant psychosocial impacts. The holistic health and psychosocial needs of persons affected by NTDs are often overlooked in integrated NTD programme design and research. Furthermore, the viewpoints of persons affected are often absent and spaces for empowerment and advocacy are limited. METHODS: Using a community-based participatory research design, our study partnered with persons affected and caregivers as co-researchers to address this gap. Through the process, we co-designed and implemented community-based support groups in Kaduna and Kwara, Nigeria, where NTDs are endemic. This paper utilises photovoice with support group facilitators (persons affected); participant observation of group meetings; rapid micronarratives with support group members; and key informant interviews with programme implementers at the state and local government area levels to explore the impact of the support groups from the perspective of people affected by NTDs and other health system actors. RESULTS: Perceived impacts of the support groups included a sense of ownership and empowerment, stigma reduction, improved self-esteem, improved health knowledge and health outcomes and capacity strengthening through vocational training. CONCLUSIONS: Support groups, as community spaces of healing, offer a low-cost holistic intervention for chronic disease and disability.

Exploring the well-being of people affected by skin NTDs in Kaduna and Kwara States, Nigeria: a photovoice and scoping review study.

People affected by skin neglected tropical diseases (NTDs) grapple with both physical and emotional reactions that compromise their health and well-being. Multiple studies with people affected by skin NTDs have shown high levels of poor mental well-being using self-report questionnaires or psychological measures. However, few have provided in-depth documentation of lived experiences from the perspective of affected persons and there is limited consideration of how their viewpoints can be used to shape intervention design. This article draws together findings from an international scoping review and a photovoice study conducted in Kaduna and Kwara States, Nigeria. Our combined analysis, which situates the lived realities of people affected by skin NTDs within the existing evidence base, was used to inform the design of a subsequent well-being intervention. Using Meyer's (2003) minority stress model, we have illustrated that there is a synergistic relationship between mental health, chronic morbidity and disability from skin NTDs. This relationship results from a complex interplay of factors including pain and discomfort and a reduced ability to function and participate in areas such as livelihoods, food provision and education. Stigma and discrimination act as a catalyst for these functional limitations and participation restrictions, resulting in feelings of being useless, broken, shame and sadness. The critical role of participatory methods in our study emphasises how people affected by skin NTDs have multiple coping mechanisms that can be galvanised in the provision of holistic NTD care. We recommend that NTD programmes should strengthen relationships with affected persons to identify pre-existing support platforms that can be used to support the emotional and physical health and well-being of affected persons. Working with affected persons and community actors to strengthen necessary intersectoral approaches is a first step in designing and delivering such holistic care.