Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

Abstract

Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

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 IDD. Similar to previous research linked to the screening and diagnosis of IDD in Ghana (Bello et al 2013, Kyeremateng et al 2019, the study findings illustrate that there is a variety of public and private health facilities that families can access for their children, especially in Accra. However, the study findings highlight that some of the facilities may refuse to provide services if the children have difficulties following entry processing protocols.…”

“…However, aside from disability screening, Bello et al (2013) did not explore further health needs the children may have had, and how those needs may have been addressed at the rural community clinic. Kyeremateng et al (2019) also highlight the plight of families from other regions in Ghana who travelled to Accra, Ghana's capital, to seek formal diagnosis and care for their children's developmental delays and disabilities. While families acknowledged that they received support from health providers to an extent, the families highlight that they also experienced negative attitudes from providers (Oti-Boadi 2017).…”

“…Contrary to the considerable literature on the health needs and experiences of children with IDD in accessing healthcare in many parts of the world, two recent scoping reviews on health and rehabilitation services for children with disabilities in low-and middle-income countries demonstrate that relatively little is known about the needs and experiences of children with IDD in Ghana (Adugna et al 2020, Magnusson et al 2019. Research linked to healthcare for children with IDD in Ghana have largely focused on screening and diagnosis of IDD (Bello et al 2013, Bornstein and Hendricks 2013, Gottlieb et al 2009, Kyeremateng et al 2019, health beliefs and behavior of families toward the needs of their children with IDD (Lamptey 2019) and attitudes of health professionals toward children with IDD and their families (Oti-Boadi 2017). For example, Bello et al's (2013) study on screening for developmental delays among children attending a rural community clinic suggests that children who were identified as potentially having developmental delays in this rural community had access to healthcare to an extent.…”

Caregiver’s perspectives on facilitators and barriers of active participation in cerebral palsy rehabilitation in North West Nigeria: a qualitative study

“…Although caregivers may participate in developing strategies to aid with development of children with CP, elsewhere, it was noted that several challenges such as environmental barriers, inaccessible health facilities and lack of specialists care may be encountered [15,16]. Additionally, caregiving was previously reported to cause huge mental and emotional stress as it imposes physical, time and financial demands [17][18][19].…”

Titles: Caregiver's perspectives on facilitators and barriers of active participation in cerebral palsy rehabilitation in North West Nigeria: a qualitative study

“…Although caregivers may participate in developing strategies to aid with development of children with CP, elsewhere, it was noted that several challenges such as environmental barriers, inaccessible health facilities and lack of specialists care may be encountered (15)(16). Additionally, caregiving was previously reported to cause huge mental and emotional stress as it imposes physical, time and nancial demands (17)(18)(19).…”