PC2121: Training and Mobilization of Family Caregivers to Improve Function, Social Development and Quality of Life for Children with Cerebral Palsy in Kawempe North, Kampala, Uganda

Purpose/Objectives: Rehabilitative services for hundreds of children with Cerebral Palsy (CP) is lacking in Kawempe North (KN) division, a slum settlement with over 250,000 people in Kampala City, Uganda. Most (94%) health facilities are private-for-profit with hardly any opportunity for CP rehabilitation. Children with disabilities in KN have minimal opportunities for medical and social interventions. In addition, their poor quality of life is complicated by the poorly educated population, high unemployment rates, crowded living conditions, poor hygiene, poor nutrition and multiple other social problems. This is further compounded by the negative social stigmatization that children with disabilities experience within homes and communities.In order to address these underserved needs, Child and Family Foundation Uganda (CFU), a registered local Non-Government Organization in KN and through its Community Medical Center (CMC) (https://www.cfufoundation.org/technical/medical/medical.php) has initiated a transformational program to improve interventions and outcomes of children with CP. This is being done through training and empowering family caregivers and community health workers (CHWs) in rehabilitative skills to support children with CP in individual homes or in family caregiver groups, and to identify and refer additional children with CP. Children with complications are linked to national referral hospitals of Mulago and Kawempe in Kampala. Family caregivers are being empowered to master income generating activities.

Design/Methods: Patients and caretakers undergo physical, social and nutritional evaluations at CMC using established and customized assessment tools. Based upon these evaluations, patients are categorized, specific disabilities identified and goals for improving function and quality of life are determined. CHWs bring together groups of 10 patients and caretakers to establish Community Family Care Groups based upon shared disabilities and goals for monthly training and peer support. Individualized data related to physical, social and quality of life issues are collected using customized REDCap apps and combined for periodic assessments of progress in various categories including patient satisfaction. CMC staff and CHWs also work with families, community leaders and social media venues to educate the community about CP to overcome stigmas and improve patient integration into the community. Caretakers are also encouraged to participate in existing programs to learn income generating activities since the care of disabled children limits the normal income opportunities for the caretakers.

Results: Progress related to these categories of the program will be presented including the identification of barriers inhibiting the identification, enrollment, attainment and sustainability of established goals for the project and among family caregivers.

Conclusion/Discussion: The application of this strategy to incorporate family caregivers and CHWs into the care of young children with CP provides an important opportunity to help overcome the limited resources available to these children in KN. This pilot program will provide a model that could be implemented in other areas of Uganda and other resource-limited LMICs.