Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
This study used Photovoice methodology with the parents of a child with a disability living in a marginalized community in a low- and middle-income country. Themes illuminate the influence of social problems and community and cultural stigma on parenting occupations and also demonstrate how parents can be empowered to become agents of change. OTs can use this knowledge to increase occupational satisfaction with parenting occupations and provide family-centered care.
Primary Author and Speaker: Paula Ann Rabaey
Additional Authors and Speakers: Hayley Manley
Contributing Authors: Renee Hepperlen
PURPOSE: Parenting occupations with a child with a disability (CWD) are complex and multifaceted. Within low- and middle-income countries, parents of CWD face significant stigma and discrimination due to taboo beliefs about the causes of disability, and adverse attitudes and sub-par treatment of persons with disabilities (Stone-McDonald & Butera, 2012). These factors, along with other social determinants of health, impact parenting occupations resulting in isolation, decreased quality of life, and decreased access to health and rehabilitation services (Mol, von Brakel, & Schreurs, 2014). This study used Photovoice and photo-elicitation interviews to 1) illuminate the lived experiences of parents caring for a CWD within an urban sub-district in Lusaka, Zambia and 2) to identify caregivers' experiences of stigma and discrimination related to caring for a CWD and empower them to speak about and advocate for change within their community. This research contributes to the knowledge gap in occupational therapy around evaluating occupational participation from a social problem lens in order to provide family centered care in marginalized populations.
DESIGN: This study used Photovoice methodology to capture the lived experiences of Zambian parents caring for a CWD within a disenfranchised and vulnerable sub-district. Ten parents were recruited from an existing project and consented to participation in the study to share about their experiences parenting a CWD. Parents participated in a one-day workshop followed by 4 days to take photographs reflecting their experiences of parenting a CWD. Participants engaged in individual photo elicitation interviews using the SHOWeD method (Wang & Burris, 1997) and then participated in a focus group session where they shared their photos and determined categories representative of the group's experiences that they shared in a community exhibition. The individual photo elicitation interviews were analyzed from a phenomenological framework using Moustaka's (1994) method of data analysis in order to understand the participant's experience around the occupation of caregiving for a CWD. The photos were constantly compared to the textual data from the photo-elicitation interviews and dictated participant narratives. Analysis resulted in five overall themes with trustworthiness established through data triangulation, peer debriefing, and member checks.
RESULTS: Five themes emerged regarding caregiving occupations 1) It makes me feel strong 2) Also a human being 3) We together have to care for our children with disabilities 4) The experience I'm passing through and 5) The community should learn. These results illuminate the lived experiences of caregivers with a CWD and how community and cultural stigma and discrimination can shape parental caregiving occupations. Other contextual factors related to social determinants of health were also brought to light through the participatory nature of the research as parents felt empowered by taking their own pictures and narrating their story.
CONCLUSION: Occupational therapy and occupational science needs knowledge from diverse cultures around the world along with qualitative techniques that expand knowledge beyond traditional interviews to support family centered practice with CWD. This study contributes to the understanding of parenting occupations of caring for a CWD in a country where disability is fraught with taboo and stigma and where parents have little voice to advocate for their CWD. The findings support the use of visual methods and parental narratives that illuminate deficits in caregiving occupations that occur due to social problems that can be used to facilitate attitudinal and policy change within marginalized communities.
References
Mol, T.I., van Brakel, W., & Schreurs, M. (2014). Children with disability in Nepal: New hope through CBR? Disability, BCR, and Inclusive Development, 25(1), 1-20.
Moustakas, C. (1994). Phenomenological research methods (1st ed.). Thousand Oaks, CA: Sage Publications INC.
Stone-McDonald, A., & Butera, G. (2012). Cultural beliefs and attitudes about disability in East Africa. Review of Disability Studies, 8, 62-77.
Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369-387.
