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

Abstract

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.

Fig 1. Project summary schematic.

Fig 2. Selected Study Sites (two health districts were selected for each health region). Red represents the Gbeke Health Region (comprised health district of Bouake Sud and Botro). Green represents the Belier Health Region (comprised health districts of Yamoussoukro and Toumodi). Purple represents the Agneby Health Region (comprised health districts of Tiassalé and Sikensi). Map data is from OpenStreetMap (OpenStreetMap.org), which is available under the Open Database License.