Original Research

‘I’m proud of my son with CP’: Cerebral palsy caregivers’ experiences, Gauteng province

Faith Maronga-Feshete, Sonti Pilusa, Abigail Dreyer
African Journal of Disability | Vol 13 | a1357 | DOI: https://doi.org/10.4102/ajod.v13i0.1357 | © 2024 Faith Maronga-Feshete, Sonti Pilusa, Abigail Dreyer | This work is licensed under CC Attribution 4.0
Submitted: 19 October 2023 | Published: 27 June 2024

About the author(s)

Faith Maronga-Feshete, Department of Rural Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa
Sonti Pilusa, Department of Physiotherapy, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa
Abigail Dreyer, Department of Rural Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa

Abstract

Background: Caregivers of children with cerebral palsy (CP) are critical in the survival and well-being of their children. Despite the caregivers’ particularly demanding responsibilities, literature on their experiences is limited.

Objectives: This study explored the caregivers’ experiences of providing care to children with CP.

Method: An explorative qualitative study design using semi-structured interviews was employed. All interviews were audio-recorded, transcribed verbatim and analysed guided by Colaizzi’s seven-step methodology.

Results: Two themes emerged: the challenges in caregiving and positive experiences of providing care. Caregivers faced financial, psychological, social and physical challenges such as stigmatisation, a lack of work accommodations, time constraints due to demands of providing care, strained family relations, isolation, exclusion, emotional and physical exhaustion in their caregiving role. Despite the challenges, they also had fulfilling, positive experiences. Caregivers became more resilient, some relationships were strengthened and awareness of the CP condition increased over time.

Conclusion: Caring for a child with CP is challenging. Cerebral palsy is a permanent disability; therefore, a holistic, long-term perspective to supporting caregivers is necessary to ensure they can care for their children adequately.

Contribution: There is a need for various support structures for caregivers to lessen the burden of care. It is necessary to establish the relationships between the support structures available and the way that these structures are viewed and consequently utilised by the caregivers. This study highlights the experiences and needs of caregivers to inform stakeholders on intervention strategies.


Keywords

cerebral palsy; caregivers; challenges; negative experiences; positive experiences

Sustainable Development Goal

Goal 3: Good health and well-being

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