Navigating the Ghanaian health system: stories from families of children with intellectual and developmental disabilities

This study explored the experiences of families in navigating the Ghanaian health system to address the general health needs of their children with intellectual and developmental disabilities (IDD). The sample involved 22 primary caregivers of children with IDD aged 3-18 years who participated in a semi-structured interview. The interviews were analyzed using the constant comparison analytical method. The findings highlighted key enablers and barriers related to three overarching themes: entry into the health system; consultation with health professionals; and service coordination. The findings showed that the families and their children gained entry into the health system in many health facilities. However, the families revealed that some facilities denied the children services, either because the children had difficulties following entry processing protocols or there were no health professionals willing to address the children’s needs. Although health professionals perform their duties professionally during consultation and care administration in many cases, the families reported on some challenges. Service coordination was seamless in some facilities; however, the families reported on other facilities they accessed where service coordination was not seamless. The study findings illustrate that the experiences of families and their children with IDD in the Ghanaian health system may be mixed.