The lived experiences of parents with children who have had retinoblastoma

Objective: The aim of this study is to explore the subjective lived experience of parenting a child who has been diagnosed with retinoblastoma.

Design: The study adopts an interpretative phenomenological approach to analyse parents written accounts of their experiences of having a child with eye cancer.

Methods: Eleven parents of children diagnosed with and treated for retinoblastoma were recruited via snowball sampling from across the UK. Children were between one and fourteen months old at the time of diagnosis. Parents were asked to retrospectively write an account of their experiences in their own words.

Results: Data analysis elicited four themes: Misdiagnosis; waiting; emotional rollercoaster; and the need for support. Parents wrote about experiencing difficulties in obtaining an accurate diagnosis for their child, an experience which was characterised by prolonged periods of waiting in relation to referrals, testing, and receiving results. This sense of waiting continued until a definitive diagnosis and treatment plan was in place and completed. Emotions were described as alternating between times of anger, despair, fear and anxiety, relief, and hope. Experiences of support varied within individual family and friendship groups as well as from healthcare professionals involved in their child’s care. However, the support from other parents with a child with retinoblastoma was perceived to be invaluable and continued long after treatment completion.

Conclusions: The findings depict a complex and difficult pathway to diagnosis and suggest a need for greater awareness of retinoblastoma and highlight the importance of emotional and social support for parents of a child with eye cancer.