Kyeremateng Joana D A, Edusei Anthony, Dogbe Joslin A, Opoku Maxwell P, Nketsia William, Hammond Charles, Afriyie Sally A
Centre for Disability and Rehabilitation Studies, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana.
Department of Child Health, Kwame Nkrumah University of Science and Technology, Komfo Anokye Teaching Hospital, Kumasi, Ghana.
Afr J Disabil. 2019 Sep 25;8:577. doi: 10.4102/ajod.v8i0.577. eCollection 2019.
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.
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.
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.
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.
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.
脑瘫（CP）是一种由发育中的大脑损伤引起的非进行性姿势或运动障碍，会导致功能受限。脑瘫的诊断因患儿个体差异而有所不同，这种疾病结果的模糊和未知给家庭带来了压力。尽管加纳社会对主要照顾者和残疾儿童存在负面态度，但人们对了解他们的经历所作的尝试较少。
本研究的主要目的是探讨在一家三级医院环境中，主要照顾者在脑瘫诊断过程（诊断前、诊断期间和诊断后）的经历。
以社会资本理论为框架，对在加纳一家主要转诊医院接受治疗的40名脑瘫患儿的主要照顾者进行访谈，了解他们在诊断前、诊断期间和诊断后的经历。
主题分析得出的结果如下进行讨论：诊断前的经历、诊断期间的经历和诊断后的经历。特别是，参与者讨论了他们无法为患有脑瘫的孩子获得诸如教育等基本服务的情况。
鉴于参与者及其患有脑瘫的孩子所面临的系统性挑战，已讨论了卫生政策制定者需要优先开展关于脑瘫的公众教育、促进照顾者福祉以及该研究的其他影响。
