Empowering caregivers of children with disabilities in Zambia: A photovoice study

Importance: Families with a child or children with a disability (CWD) living in low- and middle-income countries (LMICs) are a marginalized population experiencing multiple contextual factors within a social model of disability that contribute to decreased occupational participation. Objective: To understand the advocacy messages that caregivers of CWD, living in an LMIC, wanted their community to learn about CWD. Design: Photovoice methodology was used with 10 parents of a CWD. Photographs, accompanying narratives, and focus group session transcripts were analyzed using Wang and Burris’s (1997) original Photovoice technique. Setting: Urban subdistrict of Lusaka, Zambia. A community venue was used for the focus group, and the community photograph exhibition occurred in the subdistrict. Participants: Ten parents of a CWD living in an urban subdistrict of Zambia who were currently participating in a community-based program, Kusamala+, which addressed stigma in the community and supported parents of children with disabilities through training. Results: Three themes were revealed: (1) “our children with disabilities should be shown love,” (2) “our children with disabilities should be well taken care of,” and (3) “our children with disabilities need help because they have different needs.” Conclusions and Relevance: The findings indicate that a social disability model lens and participatory action research can be used to reveal occupational injustices that hinder parents’ engagement in caregiving for their CWD in a marginalized community. Use of visual methodologies can be a powerful advocacy tool for marginalized populations. What This Article Adds: Our findings suggest that occupational therapists can better understand, and provide services to, families living in marginalized communities by using a social model of disability as a framework for evaluation and service provision. By highlighting issues of occupational injustice, occupational therapists can advocate for and empower communities of people with disabilities who face stigma and discrimination.