Due to stigma and limited resources, children with disabilities are frequently isolated from social and civic life in low- and middle-income countries. However, this could soon change if Mary Hearst and Paula Rabaey have their way. The St. Catherine University professors were recently awarded $277,743 by GHR Foundation to pilot a project designed to reduce stigma and improve the quality of life for children with disabilities in Kanyama, Zambia.
“Some families hide their children with disabilities due to shame but also fear for safety,” said Mary Hearst, associate professor and director of public health. “In some places, community members believe that a disability is caused by curse or is contagious, furthering sigma and isolation and puts children at risk for acts of violence.”
Hearst and her co-investigator, Paula Rabaey, an assistant professor of occupational therapy at St. Kate’s, will collaborate with partners to implement and test an intervention to mitigate these isolating factors through family and community engagement, advocacy, skill building and systems linkages.
In July, Hearst traveled to Zambia with two St. Kate’s public health students to work with the Catholic Medical Mission Board (CMMB) to begin implementing the two-phase project. CMMB is an international faith-based NGO dedicated to strengthening and supporting under-resourced communities in Africa, Latin America and the Caribbean through healthcare programs and initiatives.
“CMMB works on family strengthening in three communities in Lusaka,” she said. “We chose The Kanyama district because it was the best poised for a pilot because of a variety of factors, including existing infrastructure at the local health clinic to test effectiveness.”
Phase one of the project includes conducting a survey to estimate the prevalence of children with disabilities and to establish baseline parent knowledge, environmental conditions and community perceptions of disability.
“Stigma isolates children with disabilities and their families, and that leaves the families on their own to earn money, get water and engage in community life,” Hearst said. “In some cases, husbands leave when there is a disabled child, leaving the mother to manage it all. In other cases, the grandmother cares for many children because the HIV/AIDS crisis devastated an entire generation of adults.”
Phase two involves developing a curriculum for a “train the trainer” approach to community education. Rabaey will lead this phase in consultation with the Kanyama Health Clinic and CMMB. Her cross-disciplinary team from St. Kate’s will include faculty from social work, physical therapy and physician assistant studies.
In phase two, the trainers—professional staff from Kanyama health clinics and social welfare offices—will train community outreach workers to engage with residents on specific topics. The pilot ultimately aims to increase the knowledge and skills of volunteers and community leaders, decrease stigma and build social support for children with disabilities and their families.
“If the community understands the causes of disability and the child’s potential contribution to social and civic life,” said Hearst, “they will be more supportive of the family and child. This will result in less isolation, less violence and less hiding. Parents will be able to get support and economic development.”
Hearst will lead the monitoring and evaluation of the project with support from CMMB. Results will be disseminated in 2019, with intention to scale up the intervention by replicating it in other regions of Zambia.
St. Kate's Master of Public Health (MPH) in Global Health
St. Catherine University was one of the first U.S. universities to offer a bachelor’s degree in public health. It launched the MPH in Global Health in fall 2016, joining a select number of academic institutions to tackle public health at the global level. Students must complete a 200-hour practicum as part of their MPH degree. They can meet this requirement internationally in a low-to-middle income country or locally, with an organization that serves the health needs of refugees or immigrants.
GHR Foundation improves lives by working toward a just, peaceful and healthy future. Built on faith in entrepreneurial creativity, the foundation accelerates systemic change by nurturing promising new possibilities and partnerships in the areas of global development, education and health. For 50-plus years, GHR’s approach has been guided by the pioneering design-build legacy of Opus Group founders Gerald and Henrietta Rauenhorst as it collaborates with the world’s experts to design and build opportunities and favorable environments for change to take hold.