Participatory development of a community mental wellbeing support package for people affected by skin neglected tropical diseases in the Kasai province, Democratic Republic of Congo.

BACKGROUND: Skin neglected tropical diseases (NTDs) produce signs and symptoms that are often physically challenging, stigmatizing and have a negative impact on the mental wellbeing of people affected. In the Democratic Republic of Congo (DRC), little is known about the mental wellbeing experiences of people affected by skin NTDs and support is lacking. We collaborated with ongoing NTD programs, the Ministry of Health and people affected to evidence experiences and opportunities for change and co-developed a mental wellbeing support package for people affected and local health system actors. METHODS: This implementation research study used the photovoice method alongside key-informant interviews to evidence mental wellbeing challenges in people affected by skin NTDs and explore opportunities for change. These were used to co-develop a skin NTD mental wellbeing support package with people affected, community members and local health system actors through a participatory workshop. RESULTS: Stigma, discrimination, decreased livelihoods and mental wellbeing challenges were evidenced by people affected by skin NTDs, their communities and health system actors. Participants identified and co-established community-led peer support groups, strengthened with basic knowledge on psychosocial support, and income-generating or recreational initiatives to support mental wellbeing of people affected by skin NTDs. CONCLUSIONS: Co-developing a support package with persons affected, community members and health system actors is a step towards holistic care for people affected by skin NTDs and promotes uptake and ownership of intervention components. CONTEXTE: Les maladies tropicales négligées (MTN) cutanées produisent des signes et des symptômes qui sont souvent difficiles à supporter physiquement, ils sont également stigmatisants et ont un impact négatif sur le bien-être mental des personnes touchées. En République Démocratique du Congo (RDC), on sait peu de choses sur le bien-être mental des personnes atteintes de MTN cutanées, et le soutien fait défaut. Nous avons collaboré avec les programmes de lutte contre les MTN en cours, le ministère de la santé et les personnes touchées pour mettre en évidence les expériences et les possibilités de changement, et nous avons élaboré un programme de soutien au bien-être mental pour les personnes touchées et les acteurs du système de santé local. MÉTHODES UTILISÉES: Cette étude de recherche sur la mise en œuvre a utilisé la méthode photovoice, ainsi que des entretiens avec des informateurs clés, afin de mettre en évidence les problèmes de bien-être mental des personnes touchées par les MNT cutanées. Ces éléments ont été utilisés pour élaborer un programme de soutien au bien-être mental des MNT cutanées avec les personnes concernées, les membres de la communauté et les acteurs du système de santé local dans le cadre d'un atelier participatif. RÉSULTATS: La stigmatisation, la discrimination, la diminution des moyens de subsistance et les problèmes de bien-être mental ont été mis en évidence par les personnes atteintes de MTN cutanées, leurs communautés et les acteurs du système de santé. Les participants ont identifié et mis en place des groupes communautaires de soutien par les pairs, renforcés par des connaissances de base en matière de soutien psychosocial, et des initiatives génératrices de revenus/récréatives pour soutenir le bien-être mental des personnes touchées par les MTN cutanées. CONCLUSIONS: L'élaboration d'un ensemble de mesures de soutien en collaboration avec les personnes concernées, les membres de la communauté et les acteurs du système de santé, constitue une étape vers une prise en charge holistique des personnes atteintes de MNT cutanées et favorise l'adoption et l'appropriation des composantes de l'intervention. ANTECEDENTES: Las enfermedades tropicales desatendidas (ETDs) cutáneas producen signos y síntomas que a menudo suponen un reto físico, estigmatizan y tienen un impacto negativo en el bienestar mental de las personas afectadas. En la República Democrática del Congo (RDC), se sabe poco sobre las experiencias de bienestar mental de las personas afectadas por ETDs cutáneas, y falta apoyo. Colaboramos con los programas en curso sobre las ETDs, el Ministerio de Sanidad y las personas afectadas para poner de manifiesto las experiencias y las oportunidades de cambio, y desarrollamos de manera conjunta un paquete de apoyo al bienestar mental para las personas afectadas y los agentes del sistema sanitario local. MÉTODOS: Este estudio de investigación utilizó el método fotovoz, junto con entrevistas a informantes clave, para poner de manifiesto los desafíos de bienestar mental de las personas afectadas por ETDs cutáneas y explorar las oportunidades de cambio. Estos datos se utilizaron para desarrollar un paquete de apoyo al bienestar mental de manera conjunta con las personas afectadas por las ETDs cutáneas, los miembros de la comunidad y los actores del sistema sanitario local a través de un taller participativo. RESULTADOS: El estigma, la discriminación, la disminución de los medios de subsistencia y los problemas de bienestar mental fueron evidenciados por las personas afectadas por ETD cutáneas, sus comunidades y los agentes del sistema sanitario. Los participantes identificaron y establecieron conjuntamente grupos de apoyo entre pares dirigidos por la comunidad, fortalecidos con conocimientos básicos sobre apoyo psicosocial e iniciativasrecreativas y generadoras de ingresos para apoyar el bienestar mental de las personas afectadas por las ETD cutáneas. CONCLUSIÓNS: El desarrollo conjunto de un paquete de medidas de apoyo con las personas afectadas, los miembros de la comunidad y los actores del sistema sanitario es un paso hacia la atención holística de las personas afectadas por las NTDs a y promueve la adopción y apropiación de los componentes de la intervención.

A health-systems journey towards more people-centred care: lessons from neglected tropical disease programme integration in Liberia.

BACKGROUND: Neglected tropical diseases (NTDs) are associated with high levels of morbidity and disability as a result of stigma and social exclusion. To date, the management of NTDs has been largely biomedical. Consequently, ongoing policy and programme reform within the NTD community is demanding the development of more holistic disease management, disability and inclusion (DMDI) approaches. Simultaneously, integrated, people-centred health systems are increasingly viewed as essential to ensure the efficient, effective and sustainable attainment of Universal Health Coverage. Currently, there has been minimal consideration of the extent to which the development of holistic DMDI strategies are aligned to and can support the development of people-centred health systems. The Liberian NTD programme is at the forefront of trying to establish a more integrated, person-centred approach to the management of NTDs and provides a unique learning site for health systems decision makers to consider how shifts in vertical programme delivery can support overarching systems strengthening efforts that are designed to promote the attainment of health equity. METHODS: We use a qualitative case study approach to explore how policy and programme reform of the NTD programme in Liberia supports systems change to enable the development of integrated people-centred services. RESULTS: A cumulation of factors, catalysed by the shock to the health system presented by the Ebola epidemic, created a window of opportunity for policy change. However, programmatic change aimed at achieving person-centred practice was more challenging. Deep reliance on donor funding for health service delivery in Liberia limits the availability of flexible funding, and the ongoing funding prioritization towards specific disease conditions limits flexibility in health systems design that can shape more person-centred care. CONCLUSION: Sheikh et al.'s four key aspects of people centred health systems, that is, (1) putting peoples voices and needs first; (2) people centredness in service delivery; (3) relationships matter: health systems as social institutions; and (4) values drive people centred health systems, enable the illumination of varying push and pull factors that can facilitate or hinder the alignment of DMDI interventions with the development of people-centred health systems to support disease programme integration and the attainment of health equity.

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.

Engaging older people as university-based instructors: A model to improve the empathy and attitudes of pharmacists in training.

BACKGROUND AND PURPOSE: Clinical guidelines increasingly emphasise the importance of comprehensive and holistic care for older people. The objective of this education brief is to describe a workshop designed to improve first year pharmacy students' empathy and attitudes towards older people. EDUCATIONAL ACTIVITY AND SETTING: A two-hour, interactive, university-based workshop was developed and evaluated. Small groups of first year pharmacy students (approximately five per group) worked with an older person to complete a number of scaffolded activities focused on the older person's life experiences with pharmacy and medication usage. The effectiveness of this intervention was measured using an eight-item, pre- and post-workshop survey adapted from published scales. FINDINGS: Engaging older people as university-based instructors for first year pharmacy students was associated with significant improvements in three of the eight attitudinal items. Following the workshop, students were more likely to report that older people are: pleasant to be with (p < 0.001), more likely to understand what it feels like to have problems with aging (p < 0.005) and less likely to believe older people become less organised and more confused as they age (p < 0.001). SUMMARY: Engaging older people as university-based instructors for first year pharmacy students may be a useful strategy to develop empathy and positive attitudes towards older people. Further research is needed to determine if the attitudinal improvements are sustained over time.

Neglected tropical disease as a 'biographical disruption': Listening to the narratives of affected persons to develop integrated people centred care in Liberia.

BACKGROUND: Integrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals' unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond. METHODS: We purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory. FINDINGS: For all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of 'biographical disruption' triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the 'sick role' was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and significant psycho-social difficulty occurred. An intersectional lens emphasises how biographical disruption is mediated by intersecting social processes. Gender, generation, and disability were all dominant axes of social inequity shaping experience. SIGNIFICANCE: This is one of the first studies to use narrative approaches to interrogate experience of chronic disabling conditions within LMICs and is the only study to apply such an analysis to NTDs. The emotive power of narrative should be utilised to influence the value base of policy makers to ensure that DMDI strategies respond holistically to the needs of the most marginalised, thus contributing to more equitable people-centred care.

"He is suitable for her, of course he is our relative": a qualitative exploration of the drivers and implications of child marriage in Gezira State, Sudan.

INTRODUCTION: Child marriage is a fundamental development challenge for women and girls, with significant negative health and social outcomes. Sudan has a high rate of child marriage, with 34% of women aged 20-24 married before their 18th birthday. Since limited preventive interventions exist, we aimed to inform the evidence base to strengthen strategic action, using mixed qualitative methods to enhance study credibility. This study is the first to conduct a rigorous qualitative examination of the drivers of child marriage from the perspective of key stakeholders involved in marriage decision making within Sudan, and makes a significant contribution towards global knowledge by developing an evidence-based conceptual framework. METHODS: Initially, we completed 14 focus group discussions separated by gender with mothers, fathers, and girls married as adolescents, and 23 key informant interviews. We then used a critical incident case study approach to explore 11 'cases' of child marriage (46 interviews). RESULTS: Findings indicate that gendered social norms and values, underpinned by religious beliefs and educational accessibility, interconnect to shape marriage decisions. In this context, many child marriages are triggered by an intrakinship proposal and further enabled by the relative lack of autonomy and influence of girls and women in marriage decision-making processes. DISCUSSION: Interconnected drivers demand context-specific holistic and multisectoral approaches, which should include simultaneous strategies to expand access to education, health services and livelihood opportunities, and evoke legal change, and participatory social and attitudinal processes that include the engagement of religious leaders and men.