Syndrome without a name? The experience of living without a diagnosis for parents of disabled children
Coates-Dutton, Nicola Teresa
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This thesis explores the experiences of parents with disabled children living without a diagnosis. Through thematic and narrative analysis of an in-depth qualitative interview study with 26 parents of disabled children, and by considering absent diagnosis in the context of sociological and other relevant theory, this thesis contributes to knowledge about diagnosis and about the experiences of families of disabled children without a diagnosis. The process of diagnosis, categories of diagnosis, and the consequences of living without a diagnosis are examined. Using interview data, including parent narratives and personal reflections, this thesis tells multiple stories revealing a play of diagnosis journeys: that of the parent participants living without a diagnosis; that of the researcher’s exploration of diagnosis; and that of the sociological significance of diagnosis. The hermeneutic journey of the literature review process is described, as the domains of sociology and medicine have shifted shape over the years of the study. I make sense of the sociological relevance of the empirical data generated, with a particular focus on the sociology of diagnosis, ethnographic studies of paediatric genetic diagnosis, and research with families with disabled children. Despite the estimated high prevalence of disabled children without a diagnosis, there is, as yet, little research with families and to date absent diagnosis in this context has not been considered by the sociology of diagnosis. That the absence of diagnosis can hold a mirror to diagnosis, and how absent diagnosis acts to expose the meanings of diagnosis, is proposed. And further, to know the nucleus of diagnosis we must look at what happens in its absence, considering the space non-diagnosis leaves and the differentiality on which diagnosis abuts. I embrace a natural history approach to methodology describing the methodological journey. Further depth is added to thematic data analysis by using a narrative approach to consider parents’ stories, and by punctuating the thesis with interludes of self-reflexive accounts of the researcher’s own story of living without a diagnosis. Key themes from the thematic and narrative analysis are reported: parents commonly conducted an intensive quest for diagnosis; perpetuity was a feature of this process of diagnosis, although searching for and interest in diagnosis commonly decreased over time; parents were active contributors to the process of diagnosis; parents had difficulty making sense of living without a diagnosis, and themes of fracture and deferral were identified; parents’ narratives had features of the chaos, quest and restitution typologies reported by Arthur Frank (1995), with an unresolved quest narrative as the core typology across parent accounts; a common metaphor of stasis of movement was identified in parent narratives. Key areas parents perceived not having a diagnosis had impacted on were: aetiology (not knowing what caused their child’s disability and what the risk of recurrence was); prognosis (not knowing what to expect in the future from their child’s health and development); access to support and services (including formal services and informal parent-to-parent support); and managing social interaction (how to describe their child’s disability to others). Living without a diagnosis has material effects and the study’s findings are relevant for theory and practice in and beyond medicine.