Childhood eye cancer from a parental perspective: The lived experience of parents with children who have had retinoblastoma.

Objectives: This study aimed to explore the lived experience of parents with children who have had retinoblastoma.

Methods: The study adopted a qualitative approach using the data collection method of written accounts. Eleven parents were recruited via snowball sampling from across the UK. Parents were asked to retrospectively produce a written account of their experiences. These narrative autobiographical accounts were analysed using thematic analysis.

Results: Data analysis elicited three themes: waiting and misdiagnosis; emotional rollercoaster; and support needs. Parents described experiencing prolonged periods of waiting from referral to clinical investigations and the implementation of a treatment plan. Difficulties in obtaining an accurate diagnosis for their child elicited anxiety for parents. Emotions were described in terms of a rollercoaster with highs and lows and times of despair, anger, relief, and hope. Experiences of personal support varied and had lasting impacts on relationships. However, the support from other parents with a child with retinoblastoma was perceived to be instrumental in facilitating coping.

Conclusions: The findings show parental experiences were characterised by numerous difficulties and suggest a need for greater awareness of childhood eye cancer. This research highlights the importance of psychological and social support for parents of a child with retinoblastoma.