Learning from stories: parents' accounts of the pathway to diagnosis

Although the diagnosis of a child's chronic illness is typically a stressful time for parents, the events leading up to it vary considerably across families. As part of a larger study that addressed the experience of living with chronic illness, an analysis was undertaken to identify major themes in parental reports of the events preceding their child's diagnosis of chronic illness. Data are based on accounts given by parents in 63 families from three health science centers in the midwestern United States. Narrative analysis techniques were used to identify 5 major pathways to diagnosis (direct, delay, detour, quest, ordeal) and to explore parents' perceptions of the nature and quality of their interactions with health care providers. Results are discussed in terms of their implications for initiating positive working relationships between parents and health care providers.