Asante, Emmanuel
(2020)
Restitution, chaos and quest: experiences of families with children diagnosed with cerebral palsy.
PhD thesis, University of Nottingham.
Abstract
Background: Cerebral palsy (CP) is considered a major physical disability among the childhood developmental disabilities, affecting the functional development of children (Jones et al., 2007), with a prevalence of 2 to 2.5 per 1000 live births (Dolk et al., 2006, Hutton and Pharoah, 2006). Existing research is dominated by the voice of the mother with the voices of other significant family members rarely reported. Incorporation of the voices of other family members is important for a holistic understanding of the experience of living with a child with cerebral palsy. This is particularly true in developing settings, like Ghana, where it is common for both the nuclear and the extended family to live together.
Aim: This study aimed to explore the experiences of families with children diagnosed with cerebral palsy.
Epistemology, methodology, and methods: This study explored the experiences of living with a child with cerebral palsy in the family by using pragmatism as its epistemology, generic qualitative study as its methodology and Frank’s illness narratives (Frank,1995) as its explanatory framework to enhance the interpretation and understanding of the study findings. Although findings largely portrayed Frank’s original typologies written in 1995, updates on his 1998 and 2013 works (Frank, 2013, Frank, 1998) were also reflected in the current study. The study recruited 30 family members through the use of purposeful sampling. Semi-structured interviews were used to collect data with each interview lasting between 60 and 120 minutes. Data was analysed using narrative thematic analysis. Ethical approval for this study was obtained from both the University of Nottingham and the Komfo Anokye Teaching Hospital. To ensure rigour, a reflexive account of the study was also taken into consideration.
Findings: The experiences of family members were represented or expressed in Frank’s narratives of restitution, chaos, and quest. In the restitution narrative, family members hoped for a cure through either biomedical and/or alternative models of treatment. This was followed by intransitive restitution where they expected the children’s condition to eventually heal, and transcendent restitution where they hoped for a cure from God. In the chaos narrative, family members expressed the sociocultural effects and personal impact of living with a child with cerebral palsy that led to a loss of control of the children’s condition and many different aspects of their lives. In the quest narrative, family members appeared to have made sense of living with a child with cerebral palsy and constructed the auto-mythology and manifesto forms of quest. Through auto-mythology, they used romanticism to make the illness experience appear better than it seemed, through the use of meanings such as “will of God” and test from God”. In manifesto, they seized on the children’s condition as a means to call for social change.
Conclusion: Findings from the current study have provided new theoretical insight into the experiences of having a child with cerebral palsy in the family. The use of Frank’s narrative types (Frank, 1995) have provided a novel, holistic, and a more comprehensive understanding of familial experiences of living with a child with cerebral palsy. Addition of the transcendent and intransitive sub-types of restitution, has also extended Frank’s narratives. The study highlights the need of health professionals to use the narrative types of restitution, chaos, and quest as listening tools in order to address the narrative types that family members living with children diagnosed with cerebral palsy may present and to also provide adequate support.
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