Biographical and spiritual disruption in chronic illness: Narrative, identity and faith work in kidney dialysis patients

Abstract

The six-year study explored whether biographical and spiritual disruption may have both negative and positive aspects – a disturbance or challenge may lead to positive as well as negative consequences. A chronic illness model was derived from the literature: good health, illness disruption, expression and evaluation, role recovery and resolution. The model was tested through a theoretical coding process against narrative interviews. Field data was used to analyse types of disruption response – peak, trough, progressive and regressive. Twelve narrative interviews were coded using narrative, theoretical and disruption-response coding. This led to a revision of the illness model, now seen as a sequence of disruption and response cycles. Faith subjects also recounted faith stories about struggle and survival. Faith practice and observance was interrupted by illness. Patients’ initial response was disorientation, but responses stabilised over time to a consistent pattern – the learning response. Key areas of study were learning effective illness responses, resolving disruption cycles, pursuing role recovery, expanding faith, and disclosing and processing suffering. Three general conclusions about chronic illness were formed – that chronic illness involves learning, that it requires different kinds of chronic illness work (narrative work, emotion work, grief work, identity work and faith work), and that it creates a specific kind of narrative quest, whose purpose is to define the subject’s role and resolve the chronic illness story. People with long term conditions often work hard, they deal with repeated disruption, they learn new roles, they construct survival stories, and learn ways of resolving each disruption stage. The study suggests a view of long-term conditions different from the accepted picture of progressive decline. It suggests that individuals become more resourceful, more skilled and better able to deal with suffering and loss as their illness progresses. With faith subjects, faith grows and adapts to face the challenges found in living with illness and apply faith to each new situation.