Background The importance of patient participation in designing and delivering services for persons affectedby neglected tropical diseases (NTDs) has gained increasing recognition. Responding to this, persons affected...Background The importance of patient participation in designing and delivering services for persons affectedby neglected tropical diseases (NTDs) has gained increasing recognition. Responding to this, persons affectedby NTDs urged NTD-focused non-governmental organisations (NGOs) to take action. These NGOs are pivotalin addressing healthcare disparities and reaching marginalised communities. To address the insufficient progresson participation, a participatory initiative was launched to develop a tool designed to support NGOs in fosteringinclusion and ensuring the meaningful engagement of affected persons in their organisational decision-makingprocesses.Methods This research used an iterative, mixed-methods approach involving stakeholder input, semi-structuredinterviews, and surveys across two phases. Phase 1 included exploratory workshops with persons affected by NTDsand NTD NGO employees which led to the development of a first draft of a self-assessment tool. Phase 2 involvedpiloting the tool in NTD NGOs. Data were gathered via pre- and post-pilot interviews and surveys. Thematic analysiswas used for the qualitative data and descriptive analysis for the quantitative data.Results In phase 1, exploratory workshops revealed that meaningful participation involves creating environmentswhere affected persons can openly share priorities and build their capacity. Workshop participants emphasisedthe need of inclusion at all stages of NGO activities. These insights informed the draft NTD Inclusion Scorecard (NISC),covering six domains. In phase 2, ten pilot sessions were conducted, feedback was gathered from 22 intervieweesand 43 survey participants, focusing on the NISC’s usability and relevance. While feedback on the NISC was positive,participants highlighted the need for contextualisation, organisational commitment, and adding a communicationdomain to the NISC.Conclusions The NISC is a self-assessment tool for NTD organisations, designed to enhance internal decision-makingby fostering awareness of the importance of including the perspectives of persons affected by NTDs. By usingthe NISC, NGOs can identify gaps in inclusion and participation, improve their decision-making processes and provide services that are relevant and impactful for persons affected by NTDs. This tool provides insights that can guide NGOsin strengthening their role in promoting inclusion and increasing the effectiveness of their programmes.展开更多
基金supported by the International Federation of Leprosy Organisations(ILEP),ILEP Members join forces to support major initiatives in scientific research,undertake projects with potential global impact,develop teaching materials,undertake training,and respond to the needs of national leprosy programmes.
文摘Background The importance of patient participation in designing and delivering services for persons affectedby neglected tropical diseases (NTDs) has gained increasing recognition. Responding to this, persons affectedby NTDs urged NTD-focused non-governmental organisations (NGOs) to take action. These NGOs are pivotalin addressing healthcare disparities and reaching marginalised communities. To address the insufficient progresson participation, a participatory initiative was launched to develop a tool designed to support NGOs in fosteringinclusion and ensuring the meaningful engagement of affected persons in their organisational decision-makingprocesses.Methods This research used an iterative, mixed-methods approach involving stakeholder input, semi-structuredinterviews, and surveys across two phases. Phase 1 included exploratory workshops with persons affected by NTDsand NTD NGO employees which led to the development of a first draft of a self-assessment tool. Phase 2 involvedpiloting the tool in NTD NGOs. Data were gathered via pre- and post-pilot interviews and surveys. Thematic analysiswas used for the qualitative data and descriptive analysis for the quantitative data.Results In phase 1, exploratory workshops revealed that meaningful participation involves creating environmentswhere affected persons can openly share priorities and build their capacity. Workshop participants emphasisedthe need of inclusion at all stages of NGO activities. These insights informed the draft NTD Inclusion Scorecard (NISC),covering six domains. In phase 2, ten pilot sessions were conducted, feedback was gathered from 22 intervieweesand 43 survey participants, focusing on the NISC’s usability and relevance. While feedback on the NISC was positive,participants highlighted the need for contextualisation, organisational commitment, and adding a communicationdomain to the NISC.Conclusions The NISC is a self-assessment tool for NTD organisations, designed to enhance internal decision-makingby fostering awareness of the importance of including the perspectives of persons affected by NTDs. By usingthe NISC, NGOs can identify gaps in inclusion and participation, improve their decision-making processes and provide services that are relevant and impactful for persons affected by NTDs. This tool provides insights that can guide NGOsin strengthening their role in promoting inclusion and increasing the effectiveness of their programmes.
