Daniels-Howell, Callie Louise; (2025) Narrating the Space Between: Critical Ethnographic Explorations of Child Dying with Families in Western Kenya. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Critical analysis of interactions of power, agency, and culture deepens our understanding of how child death and dying are constructed across diverse and economically-unequal contexts. In settings such as Kenya, discourse around impending child death is limited, with experiences shaped by structural violence. The space between child illness and death—where end-of-life care might relieve suffering—remains under-theorised. This thesis addresses this gap by developing a grounded theory answering: How is the experience of the space between illness and death of a child from cancer narrated by families? The study employed an iterative, care-centred approach with sixteen months of fieldwork in western Kenya, combining ethnography in a paediatric oncology ward with narrative accounts and group meetings with families of nine children who died during this period. Analysis integrated ethnographic and constructivist grounded theory methods to understand the sociocultural dying process within broader social, spiritual, and structural realities. Findings reveal that children's dying processes are shaped by both meaning-making practices and structures of inequity. The space between is constituted by dynamic negotiation between certainty and uncertainty, where families construct 'agency-in-process' that supports 'living-in-process'—a way caregivers hold their child in the present continuous tense, maintaining an open-ended relation to the future even as death becomes more likely. This thesis makes four key theoretical contributions: (1) it complicates notions of relationality by showing relatedness as fluid and intertwined with critical context; (2) it centres caregivers as active epistemic agents co-producing knowledge through therapeutic practices; (3) it reframes spiritual practices as reflexive and agentive rather than fatalistic; and (4) it conceptualizes a subtle form of agency where uncertainty emerges as a generative condition for continuing to live. These insights challenge dominant narratives of caregiving in contexts of constraint and have implications for palliative care approaches that support families' agency at life's edge.

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