The Help-Seeking Experiences of Caregivers with Children Living with Cerebral Palsy in Tembisa, South Africa

Abstract

The phenomenon of help-seeking, which focuses on the way in which individuals seek help, has not been widely studied in caregivers of young children with cerebral palsy (CP). The available research focuses on health-seeking, which has been used to understand caregiver treatment-seeking pathways and the influence of beliefs regarding health and illness on caregiver health-seeking behaviours. The focus on health-seeking practices provides a narrow view of individuals, where the disease or the disorder is considered paramount to an individual’s life. Therefore, in this study caregivers’ lived experiences of help-seeking were explored from a broader perspective where help-seeking was not only limited to caregivers seeking healthcare services on behalf of their children with CP. CP is a common childhood neurodevelopmental disorder that is highly prevalent in Africa and a common cause of disability in children. This study focused on CP because there is sparse information regarding how caregivers of children with CP conceptualise the notion of help- seeking. The study explored caregivers’ conceptualisation of helpful help as they navigate between formal and informal sources of help within Thembisa, a township on the periphery of Johannesburg. Thembisa is a densely populated township characterised by high rates of unemployment, poverty, pollution, crime and violence. This study used a qualitative case study research design, underpinned by a phenomenological approach. The theoretical framework used to explore the help-seeking experiences of caregivers consisted of the concepts of lifeworld, healthworld and the whole health approach to care. The theory was used inductively to inform the interpretation of the findings. Two data sources were used: a series of repeated semi-structured individual interviews and journey mapping. Purposive and snowball sampling were used to recruit caregivers. A total of 15 caregivers with diverse lived experiences of help-seeking were included in this study. Interviews were conducted in IsiZulu, Sepedi, and IsiXhosa. Interpretative phenomenological analysis was used to analyse data. The findings of this study revealed four main findings which include: (i) caregiver experiences of caring for a child with CP in the context of Thembisa, (ii) challenges within the public health and education sector: the impact on caregivers’ help-seeking experiences, (iii) caregivers navigating alternative sources of healthcare, and (iv) caregivers’ self-help initiatives. The findings highlight the complexity of caregiver help-seeking and the limitations of formalised sources of help in providing helpful help. The study emphasises the important contributions of hybrid communities of care and their ability to provide several forms of support, most of which cannot be accessed in Thembisa. In terms of healthcare provision, there is a need to shift from a disease-focused model of care to a holistic approach, specifically a whole health care approach that focuses on the child and caregiver.