The effect of assistive devices for mobility on caregivers of children with cerebral palsy: Acollective case study in the Eastern Cape

Abstract

Background: The prevalence of disability in the Eastern Cape province is reported to be high at 10.79,6%, (699 452472 106 persons). Although the prevalence decreased in 2022, the Eastern Cape remained the province with the highest prevalence at 8.5%. Within the high disability prevalence, there is little to no literature available on the effect of mobility assistive devices (ADs) on the role of caregiving. With a focus on two districts in the Eastern Cape, the Buffalo City Metropole (BCM) and the Sarah Baartman District (SBD), this study aimed to describe the change in the burden of care experienced by caregivers after a child with cerebral palsy (CP) receives a mobility AD. Methods: This study used a collective multiple case study research method. The research combined both quantitative and qualitative data. This design is particularly relevant in occupational therapy as it enables the investigation of multiple cases within a specific context, allowing for an in-depth exploration of real-life experiences using various data sources, to describe the change in burden of care experienced by caregivers of children with cerebral palsy in the Eastern Cape. Data collection involved structured interviews conducted by the researcher using a self-developed questionnaire to gather participants, socio demographic profiles, and a section to assess financial, physical, and psychosocial factors impacting caregiving. The Zarit Burden Inventory, a standardised self-reported questionnaire used to measure burden of care on caregivers before and after their child with cerebral palsy (CP) received a mobility assistive device. Data was analysed descriptively, and non-parametric statistics were used for the data in the ZBI. Seven caregivers participated in the study, providing valuable insights into the changes they experience after receiving the mobility AD. Results: The study revealed that caregivers faced an increased financial burden after receiving a mobility AD, primarily due to their reliance on public transport. Travel expenses consumed a significant portion of the monthly income. However, caregivers reported a iv decreased physical burden after receiving a mobility AD compared to before. Psychological and emotional changes varied among caregivers. Some caregivers expressed satisfaction, finding caregiving easier and more manageable, while others encountered challenges with the devices. Themes of positive change after receiving a mobility AD included an increase in the independent mobility and social participation of the child with CP; a reduction in hands-on care required for the child; increased employment opportunity for caregivers; and lastly, enhanced social participation of the caregiver. Conversely, negative changes included a lack of improvement in the child with CP’s disability and difficulty in transporting the mobility AD. The Zarit Burden Index individualized scores recorded before and after receiving the mobility AD showed a decrease in all participants’ scores after receiving the device. No statistically significant difference was found in the scores. However, the effect size, which highlights the practical and clinical relevance of the change, was 1.8, reflecting a notable reduction in the burden of care. Conclusion: The study revealed that caregivers experienced both positive and negative changes after receiving a mobility AD. The reduction in physical burden highlights the importance of therapists and healthcare professionals conducting timely assessments for mobility ADs to minimize the physical strain caregivers endure during the waiting period. However, the study also found a significant lack of psychosocial support for caregivers, emphasizing the need for a more holistic healthcare approach to enhance their overall well-being. Additionally, the financial burden caregivers face after receiving a mobility AD underscores the need for greater intersectoral collaboration between the Department of Health and the Department of Transportation, for example, to address this gap.