Quality of Life Improvements for Children with Disabilities in Zambia

December 15, 2016 / By: Renee Hepperlen, Social Work, and Mary Hearst, Public Health
St. Kate's team in Zambia
The St. Kate's, SPOON Foundation and Catholic Charities-Zambia team


Children with disabilities are among the most hidden population in many countries, bearing the consequences of stigma, poverty and neglect, and Zambia is no exception (World Health Organization, 2011). The prevalence of disability in Zambia is between 7.2 and 13 percent of the population (Central Statistics Office of Zambia, 2010). The consequences of disability include, but are not restricted to, isolation and stigma, poverty, co-morbidities and secondary disability, limited opportunity to participate in society (i.e., school, work, civil society) and early death.

The Children and Families Initiative of the GHR Foundation sponsored a multidisciplinary team of faculty and professionals from St. Catherine University’s Henrietta Schmoll School of Health, St. Catherine University – University of St. Thomas School of Social Work and SPOON Foundation to travel to Zambia in June 2016. While there, the team sought to answer three  fundamental questions. First, can care providers and institutions improve the quality of life for children with disabilities living in these settings? Second, what are the conditions of children with disabilities living in the community? Third, are there effective strategies that communities and organizations could implement and disseminate nationally to ensure good quality of life for all children with disabilities in Zambia?

To answer these questions, team members met with key informants, community leaders in rural and urban areas, and parents of children with disabilities. They met with staff who work with children with disabilities in a number of settings, including institutions, schools, nonprofit community organizations and internationally affiliated nongovernmental organizations.

Based on this fieldwork, the team recommended two approaches. First, the team urged making improvements for children with disabilities living in institutions. One important gap for these children is that staff lacked resources and sufficient training on best practices for the care of children with disabilities. The need for training around feeding and nutrition was heard and observed in orphanages and schools. Providing adequate nutrition and rehabilitative strategies could significantly improve these children’s quality of life.

Second, the team identified that the conditions of children with disabilities in a community setting vary based on the type of disability. Regardless, children with disabilities and their parents living in the community face substantial stigma and isolation. Team members heard that parents who have a child with disabilities are at greater risk of spousal abandonment, have more difficulty seeking and keeping gainful employment, and lack social support from the community due to stigmatizing beliefs about disabilities. Additional barriers exist for families who have a child with a disability. For example, transporting a child to a medical appointment becomes increasingly complex as children grow older due to lack of access to equipment that supports mobility (i.e., wheelchairs) and limited wheelchair accessibility on buses/vans.

The team identified several areas in Zambia where organizations developed thriving community-based services and supports based on best practices from the WHO Community Based Rehabilitation model. The model used in one site includes an interprofessional team that provides services to children with disabilities and their families through outreach clinics and trained workers. This approach not only brings services to families, it provides an opportunity for children to reach their potential and reduce stigma.

Based on this formative assessment, the team proposed to further strengthen relationships with existing organizations, children with disabilities and their families in an effort to expand and enhance current models of community-based services rehabilitation and supports. Conversations with key organizations in Zambia are underway and the multidisciplinary team is in discussion with the Children and Families Initiative at GHR Foundation to plan for future collaboration. 

This article was published in the Fall 2016 School of Social Work Perspectives newsletter