Exploring the lived experiences of primary caregivers of children with visual impairment from a low- and middle-income context in the Western Cape Province

Abrahams, Zuleikha

Exploring the lived experiences of primary caregivers of children with visual impairment from a low- and middle-income context in the Western Cape Province

Thesis / Dissertation

2024

Publisher

University of Cape Town

Department

Michaelis School of Fine Art

Faculty

Faculty of Humanities

Abstract

Few studies explore the experiences of Primary Care Givers and families with a child with visual impairment from low-and-middle-income, and least so, from South Africa (SA). It is important to understand this phenomenon so that interventions can be tailored to suit their needs and shortcomings. Services and support for such families are difficult to access or in some cases non-existent. The main responsibility often rests on these families, and the effect of this in low and middle income contexts is complex and poorly understood. In South Africa, and more specific in the Western Cape Province, support for parents and services for children with visual impairment are limited. The aim of the study was to explore the lived experiences of primary caregivers, from Western Cape Province, after their child was diagnosed with visual impairment at a paediatric tertiary hospital. The purpose of this study was to find out the responses of the family in respect of psychosocial challenges, their needs, what support they received and accessed, as well as the efficiency and effective availability of these services. The phenomenon that involves features of the person as a psychosocial being, requires an understanding and exploration of lived experiences to facilitate the complexity of the disability conundrum. Hence, a qualitative research approach using an interpretive phenomenological design was adopted. Purposive sampling was used to select six participants from the WCP whose child was diagnosed at a paediatric tertiary hospital. Data was collected through semi-structured interviews. Interviews were digitally recorded and later transcribed verbatim. Interpretive phenomenological analysis of data involved an inductive and deductive approach, coding for themes and categories emerging from the data. The literature review explored what was found about primary caregivers, parents and families and their experiences at the diagnosis of their child with visual impairment. It showed what needs, services and supports other studies identified on parents with a child with visual impairment or disability in various income contexts globally. Information about services and support in the health and educational sectors, and at the local and national governmental institutions in South Africa was provided. The findings of the study illustrated four themes. Firstly, the experiences of primary caregivers of a child with visual impairment after diagnosis. Secondly, Expressed concerns and needs. Thirdly, Services and support accessed. Fourth, Changes and concerns for the future. The ecological framework illustrated the microsystem, mesosystem, exosystem and macrosystem where services and support were needed. These various social environments also illustrated formal and informal social services and support that eased caregiving, participation and inclusion for PCGs of children with visual impairment. The Discussion chapter interpreted the findings in terms of current literature and developed a composite of the findings to further suggestions from primary caregivers that led to the recommendations of this study. The study concluded with recommendations that Strong psychosocial support services for a primary caregiver and family whose child is diagnosed with visual impairment are needed. Referrals for ample formal and informal support services from these systems and sectors in social, economic and political environment must be an immediate response when health professionals relate the news of the visual impairment so that information, counselling and emotional support assist the primary caregiver and family through the initial trauma. Furthermore, there should be measures to monitor the well-being of these primary caregivers and their families to ensure that healthy family systems are maintained.

Keywords

Fine Art

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