The experience of caring for a child with cerebral palsy in rural communities of the Western Cape, South Africa.

[摘要] ENGLISH ABSTRACT : It has been suggested that the complex needs of children with neurodevelopmental disorders are best addressed with a family-centred approach. As this approach has been increasingly incorporated into healthcare systems over recent years, most children with disabilities are now able to remain at home as opposed to living in institutions or group homes. Many parents have thus been forced to adopt the role of a primary caregiver for their child that has been diagnosed with a disability or chronic condition.This study aimed to investigate the experiences of caregivers for children with cerebral palsy in rural communities of the Western Cape, with a specific focus on the barriers and facilitators that they encounter. An exploratory qualitative design was employed and 15 individuals (aged 27-62), who were identified as caregivers for a child with cerebral palsy through purposive sampling were interviewed. Thematic analysis was used to analyse and generate themes from the semi-structured interviews that were conducted with participants.A number of barriers to caring emerged including the personal consequences of caregiving, difficulty adjusting to caregiving duties, environmental conditions, lack of access to healthcare services, lack of respite services, and negative perceptions towards disability. Various facilitators to caring were also identified, namely personal coping methods, personal transformation, social support, relationship with one's child, community resources, child's crèche, and financial assistance.The five levels of the Social Ecological Model were used to conceptualise the discussion of these findings and links were made to the existing literature on the caregiver experience in the developing context. In this process it was found that participants often encountered similar barriers and facilitators to caregivers for individuals with other types of conditions, such as HIV/AIDS, autism, mental illness, cancer, and neurological disorders. This could suggest that caregivers residing in developing countries share similar experiences, regardless of the condition of the care receiver.Although participants received support from a number of sources that aided them with their caregiving duties, it is evident that they still encountered gaps in the provision of a number of important services, including lack of information from healthcare professionals, lack of community programs to reduce stress and promote empowerment, and lack of disability-friendly facilities. It is vital that caregivers have access to these services to ensure their child's well-being as well as their own. There is thus a need to explore how these services can be made more accessible to caregivers in rural communities.

[发布机构] Stellenbosch University