Barriers to care: Caregivers’ accounts of raising a child with a communication disorder

Abstract

Background: There exists a dearth of research on the psychological experiences of childhood communication disorders. Caregivers of these children are one source who can provide us with this information since the child exists within a system. Literature on the experiences of caregivers of children with communication disorders, specifically in the South African city context, is lacking. Objectives: The article presents the reported experiences of six parental caregivers raising a child with a communication disorder within Johannesburg. Method: Data were collected via semi-structured interviews and underwent an interpretative phenomenological analysis. Results: Five themes are presented: feeling out of control; barriers to accessing services; caregivers left speechless; a misunderstood disability; and relinquishing control: ‘I needed to be a mommy’. Conclusion: The caregivers relayed an initially negative experience in raising a child with a communication disorder, marred with worry and fear for the future. In accessing services, they narrated their experiences of multiple barriers to access, including an overreliance on the private sector, financial barriers, time constraints, limited resources and poor information on available resources. Eventually, the caregivers were able to identify strengths, skills and capabilities within their children and themselves that allowed for adjustment and coping. Contribution: The findings highlight the importance of considering how barriers to care may marginalise and seclude parental caregivers. Over time, the caregivers were able to empower themselves through building their own knowledge and reformulating their narratives by challenging assumptions and retitling the source of disability as a product of the failure of society.

Keywords

• childhood disability
• communication disorder
• barriers to care
• lived experiences
• mother
• parental caregiver
• johannesburg
• south africa