Lived experience with vernal keratoconjunctivitis (VKC)

5 August 2022 | Fiona Rowe (Prof)

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This study was undertaken to explore the experience of living with VKC. Nine families were interviewed – paired interviews with patients and parents using semi-structured approaches (May-October 2018). Interviews continued until data saturation was reached with no new information. The authors adopted an interpretative phenomenological analysis approach. There were six males and three females with a median age of disease onset of four years (1.5-6). Median age at diagnosis was six years (3-11). They identified six distinct phases in the journeys of families from noticing symptoms, through diagnosis and to the future. Impact on daily life included impact to education, social and leisure time, and family life. Patient and parent experience included need for control, journal to diagnosis, incongruous care, and information vacuum. The authors acknowledge the small sample size. However, they noted consistency of responses and reached data saturation. They acknowledge the limited age range of patients. They identify clear unmet needs for this population and recommend a holistic approach to the care of these patients.