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.