Research Article
Issue Date: July/August 2021
Published Online: May 28, 2021
Updated: July 09, 2021
Empowering Caregivers of Children With Disabilities in Zambia: A Photovoice Study
Author Affiliations
  • Paula Rabaey, PhD, OTR/L, is Associate Professor, Department of Graduate Occupational Therapy, St. Catherine University, Saint Paul, MN; parabaey@stkate.edu
  • Renee Hepperlen, PhD, LICSW, is Associate Professor, School of Social Work, University of St. Thomas, Saint Paul, MN.
  • Hayley Manley, OTR/L, is Occupational Therapist, University of Wisconsin Hospital and Clinics, Madison.
  • Amanda Ament-Lemke, MSW, LGSW, is Social Worker, Children’s Minnesota–St. Paul Hospital, Saint Paul.
Article Information
Pediatric Evaluation and Intervention / Rehabilitation, Participation, and Disability / Special Issue on Occupational Therapy and Disability Studies
Research Article   |   May 28, 2021
Empowering Caregivers of Children With Disabilities in Zambia: A Photovoice Study
American Journal of Occupational Therapy, May 2021, Vol. 75, 7504180030. https://doi.org/10.5014/ajot.2021.045526
American Journal of Occupational Therapy, May 2021, Vol. 75, 7504180030. https://doi.org/10.5014/ajot.2021.045526
Abstract

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.