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

Abstract

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) andparents' 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 preand 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 forsurvivors and parents. Better information provision may improve families' surgical experience whilst reducing anxiety, distress and physical discomfort. K E Y W O R D Schildren, paediatric cancer, parents, psychosocial, surgery

Automated Intraoperative Short Messaging Service Updates: Quality Improvement Initiative to Relieve Caregivers’ Worries

“…It is important to address anxiety to reduce adverse outcomes seen in caregivers that persist postoperatively. These include fear of death of a loved one, frustration, anger, guilt, and other lasting psychological and physical disturbances [ 7 , 51 - 53 ].…”

“…Receiving mobile-based messages also offers caregivers the freedom to better plan their wait and may thus influence their overall experience. Prior to COVID-19-mandated off-site waiting, leaving the hospital was reported as a coping strategy used by parents of oncology patients who could not bear to sit in a waiting room during their child’s surgery [ 7 ]. Instead, while waiting for news, they filled “unoccupied” time with “occupied” time [ 54 ] and fared better in terms of anxiety and distress, as reported by parents who stayed at the hospital.…”

“…More than 1 million surgical interventions were performed in Canada in 2020 [ 4 ]; these procedures implicate family members and caregivers as requisite accompaniers. Separated from their loved ones during the intraoperative period, caregivers experience distress, helplessness, fear, loneliness, frustration, and uncertainty, as well as physiological responses, such as increased heart rate, impaired sleep, and restlessness [ 5 - 7 ]. Although caregivers previously waited in the surgical waiting area, with the arrival of the COVID-19 pandemic and mandatory hygiene measures, most are now required to wait off-site with only remote access to surgical staff for updates [ 8 ].…”

“…Family members anxiously seek informational updates about their loved one’s status [ 7 , 9 ], but the intraoperative time frame is often the most difficult moment to provide such details. Progress reports are effective at relieving the distress felt by caregivers during surgery and contribute to overall satisfaction with care [ 10 , 11 ].…”

Understanding the Experiences of Living With an Artificial Eye in Children With Retinoblastoma—Perspectives of Children and Their Parents

“…The impact of having a child diagnosed with cancer has been well-researched, and the emotional cost is recognized (Carlsson et al, 2019; Gabriel et al, 2019; Gunter & Duke, 2018). In our study, the parent participants all discussed the emotional toll that having a child with cancer and an artificial eye had on them.…”