People-centered strategies to mobilize people living with disabilities due to Neglected Tropical Diseases (PD-NTDs) to influence policy and programs: a mixed-methods study in Côte d’Ivoire

Introduction: Neglected tropical diseases (NTDs) are a priority in the public health agenda for Côte d’Ivoire, with persons living with disabilities due to NTDs (PD-NTDs) experiencing many challenges in their daily lives. Current policies do not sufficiently support PD-NTDs, thereby highlighting the need to identify opportunities for policy improvement. Methods: This study was carried out in two phases: first to identify the current needs (formative phase) and then to develop a pilot strategy (implementation phase). In the formative phase, pertinent current legislation was reviewed. Then, interviews of PD-NTDs and their caregivers were conducted and analyzed quantitatively. Thematic analysis of focus groups with key community stakeholders was also completed. In the implementation phase, a pilot strategy was developed to address the identified issues. Results: 172 PD-NTDs and their caregivers were surveyed through this study. 99% of PD-NTDs expressed a need for rehabilitation, healthcare and psychosocial support. More than 80% endorsed the need for healthcare services and free medications, 92% expressed the need for educational services, and 83% reported economic difficulties. Furthermore, 30% of PD-NTDs reported limited awareness of specialized care services available in the community, 25% endorsed limited knowledge of current legislation that protects the rights of people living with disabilities, and 38% faced significant stigma and discrimination within the past 12 months. Fifty-six interviews with key informants further echoed these gaps. A pilot strategy was developed with four pillars to (1) increase community advocacy, (2) combat stigma, (3) promote mutual support among PD-NTDs, and (4) improve the sustainability of the effort. Forty-one out of 49 activities were completed. Discussion: This project represents a comprehensive effort to identify policy opportunities to effectively support PD-NTDs. This approach may be used by other organizations that plan to develop initiatives to target the needs of PD-NTDs in their local communities. Author summary: This project is a mixed-methods study and pilot strategy that aims to identify and address the needs of people living with disabilities due to Neglected Tropical Diseases (PD-NTDs) in Côte d’Ivoire. The project was completed in two stages: a formative phase to guide the development and the implementation of a pilot strategy. The initial findings revealed while there are some policies in Côte d’Ivoire to support people affected by disabilities, their needs were not sufficiently addressed, raising the opportunity for advocacy to target this gap. In particular, PD-NTDs needed greater health, financial, educational and social opportunities, for which the pilot strategy aimed to improve by empowering PD-NTDs. The project’s focus on encompassing multiple NTDs – as opposed to a single disease strategy – and involvement of PD-NTDs throughout the strategy contributed to the satisfactory fulfillment of the project’s objectives. We are hopeful that the results of this study will advance policy development in Côte d’Ivoire to protect the rights of PD-NTDs on a national level.