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.