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 impact of COVID-19 on frontline health workers through a photovoice study in Kaduna, Kwara and Ogun States, Nigeria.

BACKGROUND: Described as the 'backbone of health systems', particularly in low- and middle-income countries, community health workers (CHWs) are a critical cadre on the frontline of any outbreak response. However, it is widely recognised that CHWs are frequently lacking in appropriate support from the health system due to inadequate physical, social and financial resources. Furthermore, despite their critical role in service delivery, the health and well-being of CHWs is seldom considered and the additional emotional and physical burdens that health systems shocks can present are frequently ignored. Thus a critical step in strengthening health systems to manage disease outbreaks or other system shocks is to ensure that CHWs are adequately supported. Within this study we document the experiences of CHWs within Nigeria during the coronavirus disease 2019 (COVID-19) outbreak to understand the impact of the pandemic on CHW well-being with a view to identifying strategies that could support CHWs during COVID-19 and subsequent health system shocks. METHODS: This study was based in Ogun, Kaduna and Kwara States, Nigeria. We used the creative participatory methodology of photovoice with 30 CHWs (10 in each state). Participants were asked to take photos documenting their experiences of working and living through the pandemic. Participants sent photos with captions to the research team via WhatsApp following one-on-one discussions. Photos were co-analysed among participants in focus group discussions using thematic analysis. RESULTS: Our findings reveal similar experiences of CHWs across Ogun, Kwara and Kaduna States in Nigeria, providing a unique insight into how the Nigerian health system was impacted and how this closely aligns to the performance and well-being of CHWs. CHW experiences related to three overarching themes: major stressors and challenges experienced due to COVID-19 (fear of contracting COVID-19, food insecurity, personal and gendered impacts), the impact of COVID-19 on providing routine care (stigma from community members, heavy workloads and inadequate equipment provision) and motivation and support from the community (pride in their roles and valued support from community leaders). The challenges highlighted through photovoice led to developing recommendations to address some of the challenges. This included training, adequate resource provision, routine supervision and peer support. CONCLUSIONS: COVID-19 highlighted the burden health workers often face. Photovoice allowed a space for frontline health workers to come together to share common experiences, particularly the psychosocial impact of working during health system shocks and its impact on performance. This underlines the need to acknowledge mental health and prioritise the well-being of healthcare staff. Sharing stories from the perspectives of health workers provides a platform to share learning and strategies on how to best support health workers holistically, particularly during health system shocks.

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.