Caring for a child with a disability in a Zambian community: A study using photo-elicitation

Renee A. Hepperlen, Paula Rabaey, Amanda Ament-Lemke, Hayley Manley

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

Abstract

Background: Over the past 25 years, caregivers of children with disabilities (CWD) in low- and middle-income countries (LMIC) have received limited attention from researchers. Previous research identified the physical, emotional, and social challenges of caregiving in resource-limited areas. Researchers also identified protective factors, such as problem-focused coping and emotion-focused coping. This study seeks to explore experiences of caregivers of CWD through participant-driven photo-elicitation, in a low-income subdistrict of Lusaka, Zambia. Methods: Researchers considered the experiences of caregivers providing support to their children with disabilities (CWD). Ten parent participants completed this qualitative study using photo-elicitation. Parent participants completed an individual interview to describe their experiences reflected in the pictures they took. The research team used qualitative content analysis to identify the themes. Results: Five general themes emerged from the data. The last two themes, “Also, a human being,” and “The community should learn,” are unique in research of CWD caregivers in LMIC settings. It indicates ways that these parents sought to encourage more inclusion and acceptance of their CWD in the community and to speak to other parents who might be struggling with providing care for their CWD. Conclusions: This study expanded disability research to include perspectives from a low-income area in Lusaka, Zambia. In doing so, we acquire a new viewpoint and enhanced understanding of their community experiences. Practice considerations include encouraging disability advocates to continue their work of educating the community about the inherent dignity and worth of people with disabilities and supporting CWD's rights.

Original languageEnglish (US)
Pages (from-to)422-434
Number of pages13
JournalChild: Care, Health and Development
Volume47
Issue number4
DOIs
StatePublished - Jul 2021
Externally publishedYes

Bibliographical note

Funding Information:
This study received funding from the GHR Foundation and the University of St. Thomas.

Publisher Copyright:
© 2021 John Wiley & Sons, Ltd.

Keywords

  • carers
  • child disability
  • developing countries
  • developmental delay
  • inclusion
  • intellectual disability

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