Investigation of challenges experienced by caregivers of children with disability in rural South Africa: caregivers and rehabilitation professionals’ perspectives

Abstract

Background: It is accepted amongst paediatric rehabilitation professionals that caregivers (CG) of children with disabilities (CWDs) play a vital role in the rehabilitation of CWDs. Equally so, the role of rehabilitation professionals is also acknowledged. The rehabilitation of CWDs may be instituted by the rehabilitation professionals in collaboration with the CGCWDs at home, in the health-care establishment or the community. CGCWDs experience multiple challenges as they ensure that the CWDs receive the necessary rehabilitation. These challenges have not be sufficiently explored in the rural context of South Africa. CGCWDs and the rehabilitation professionals are in a better position of understanding the challenges that are experienced during the rehabilitation process of CWDs. Purpose: The objective of the study was to explore the challenges that CGCWDs experiences in a rural and underresourced area in South Africa. Methods: A qualitative, exploratory and descriptive approach was used. The study was conducted at Nkhensani Hospital in Limpopo Province, South Africa. Data was collected through individual face-to-face interviews and focus group discussions (FDGs) with CGCWDs and rehabilitation professionals. In order to participate in the study, CGCWDs had to be over 18 years old and have a CWD aged 0 to 15 years and attending a rehabilitation clinic at Nkhensani. Rehabilitation professionals had to be registered with the HPCSA as a physiotherapist, occupational therapist or therapy assistant and working at Nkhensani. Rehabilitation professionals were requested to assist in identifying and recruiting caregivers who met the study’s inclusion criteria. Rehabilitation professionals were also invited to participate in the study. Purposeful and convenience sampling were respectively used to sample caregivers and rehabilitation professionals. Ten CGCWDs and eight rehabilitation professionals participated in the face-to-face interviewswhichwere conducted by the researcher. Three groups of caregivers and a group of rehabilitation professionals participated in the FGDs facilitated by the researcher. Data was transcribed verbatim from a local language (Xitsonga) by the researcher and two trained transcribers, translated and analysed using an inductive approach. In-vivo and open coding was used to generate codes. Results:A theme “challenges experienced” emergedwith four categories from the data. The categories were: