Community intervention programmes with people affected by leprosy: Listening to the voice of professionals.

BACKGROUND: Community participation and implementing interventions based on the community are key strategies to eliminate leprosy. Health professionals have an essential role as they are a necessary source of information because of their knowledge and experience, as well as their comprehensive perspective of contexts included in the programmes. This study has the aim of analysing the perceptions on the development of programmes with people affected by leprosy from the perspective of professionals that work at different organisations in endemic contexts. METHODOLOGY: A qualitative study was carried out with the written response to an open question questionnaire which was sent by email. The script content was related to positive aspects and difficulties in daily work, participation from the community in activities, contribution to gender equality and programme sustainability. 27 health professionals were interviewed, 14 women and 13 men, all of which belonged to 16 organisations in India and Brazil. Once the content of the interviews was analysed, two main topics emerged: barriers perceived by professionals and proposals to improve the sustainability of the programmes. PRINCIPAL FINDING: Professionals identify barriers related to social stigma, inequalities, gender inequalities, difficulty managing the disease, limited services, lack of resources and lack of community participation. Furthermore, some necessary recommendations were taken into account to improve programme development related to: Eliminating stigma, reaching gender equality, developing adequate and effective services, guaranteeing adequate and quality resources and achieving compassion among professionals. CONCLUSIONS: Although introducing community programmes with people affected by leprosy has a long history in countries such as India and Brazil, there are still several barriers that can hinder their development. Based on the specific needs of the contexts, recommendations are suggested that, with the involvement of all parties and with sensitive approaches towards human rights and gender, they could help to guarantee universal health coverage and the sustainability of said programmes.

Scoping review: Community-based programmes with people affected by leprosy.

OBJECTIVE: To analyse community intervention programmes for people affected by leprosy in 'global priority countries'. METHODS: Scoping review of articles in the databases PubMed, Scopus, SciELO, Lilacs and Web of Knowledge that made reference to community intervention programmes aimed at people affected by leprosy in global priority countries and which presented an evaluation of results. Analytical variables analysed were methodological characteristics of the study, type of intervention classified according to the Community-Based Rehabilitation Matrix, indicators and results of the evaluation, and the degree of participation of the community, which was graphically represented as a spidergram. RESULTS: Thirty articles met the inclusion criteria. They were mostly related to the health component of the RBC matrix and aimed at the adult population. All evaluated the indicators used positively. The degree of participation generally ranged between mobilisation and collaboration. CONCLUSION: Community intervention programmes for people affected by leprosy have a positive effect on health. There are attempts to include affected people and the community in implementing these programmes, but it is not possible to establish a direct relationship with effects of their participation on health due to the study designs used. Future research using more robust methods that include leprosy patients are necessary to evaluate the effectiveness of community participation.

OBJECTIF: Analyser les programmes d'intervention communautaire pour les personnes atteintes de la lèpre dans les "pays à priorité mondiale". MÉTHODES: Analyse de la portée à partir d'articles dans les bases de données Pubmed, Scopus, Scielo, Lilacs et Web of Knowledge qui faisaient référence aux programmes d'intervention communautaire destinés aux personnes touchées par la lèpre dans les pays à priorité mondiale et qui présentaient une évaluation des résultats. Les variables analytiques analysées étaient les caractéristiques méthodologiques de l'étude, le type d'intervention classé selon la Matrice de Réhabilitation Communautaire, les indicateurs et les résultats de l'évaluation, et le degré de participation de la communauté, qui était représenté graphiquement comme un spidergram. RÉSULTATS: Trente articles répondaient aux critères d'inclusion. Ils étaient principalement liés à la composante santé de la matrice RBC et visaient la population adulte. Tous ont évalué positivement les indicateurs utilisés. Le degré de participation relevait généralement entre la mobilisation et la collaboration. CONCLUSION: Les programmes d'intervention communautaire pour les personnes atteintes de la lèpre ont un effet positif sur la santé. Il y a des tentatives d'inclure les personnes affectées et la communauté dans la mise en œuvre de ces programmes, mais il n'est pas possible d'établir une relation directe avec les effets de leur participation sur la santé en raison des concepts d'étude utilisés. De futures recherches utilisant des méthodes plus robustes incluant des patients lépreux sont nécessaires pour évaluer l'efficacité de la participation communautaire.