Paediatric surgery for childhood cancer: Lasting experiences and needs of children and parents

Objective: Surgery for paediatric cancer presents many stresses on patients and families. The authors aimed to understand the long-term impact of childhood cancer surgery on survivors and parents. Methods: The study recruited participants from 11 Australia/New Zealand hospitals for telephone interviews. The authors used descriptive statistics to analyse participants’ quantitative distress ratings and conducted thematic analysis of shared surgical experiences and needs. Results: Of 32 participants (n = 17 survivors, n = 15 parents), survivors’ mean age at surgery was 6.9 (SD = 5.17) and parents’ children were 2.1 years old (SD = 1.41) at time of surgery. Survivors had surgery on average 15.2 years ago (SD = 6.72) and parents’ children 11.5 years ago (SD = 3.94). Parents and survivors rated surgery as highly distressing. Pre-operatively, survivors recalled experiencing fear and pain mainly associated with pre-operative procedures. Post-operatively, survivors reported immobility and some lasting behavioural disturbances. Parents described pre- and intra-operative anxiety and stress and some lasting post-operative psychological disturbances. Experiences appeared to improve with clear/consistent communication from hospital staff, proximity to hospital, and with support for parents and children post-operatively. Conclusions: Surgical treatment for childhood cancer can have a lasting impact for survivors and parents. Better information provision may improve families’ surgical experience whilst reducing anxiety, distress and physical discomfort.