The Lived Experience of Childhood Cancer Survivors and Their Parents: A Multi-National Study of Access to Survivorship Care and Information and Support Needs

Abstract

Introduction

Lifelong follow-up care for childhood cancer survivors (CCS) is recommended and ideally involves both medical and psychosocial care. It is important for CCS and their families to be adequately informed about what to expect after cancer treatment completion to ensure they receive appropriate care. This study aimed to describe patterns of access to survivorship care among a multi-national sample, as well as examine unmet information and support needs, for CCS and their parents.

Method

An online survey, developed by pediatric psycho-oncology experts and people with lived experience of pediatric cancer, was distributed by the World Health Organization. This study presents a subanalysis from these data.

Results

Participants included 102 parents of CCS (94 females, mean age 45 years, mean time since child's diagnosis 9 years), and 43 CCS (28 females, mean age 31 years, mean time since diagnosis 21 years) from 17 countries. Thirty-five percent of CCS (13/37) were not accessing survivorship care. Most parents (95%; 97/102) and CCS (76%; 31/41) reported a desire for discussion of emotional impacts following cancer treatment completion; however, this did not occur for 69% (70/102) of parents and 46% (19/41) of CCS. Additionally, 92% (93/102) of parents and 83% (33/41) of CCS reported an unmet need for more information about what to expect after cancer treatment. Most CCS (54%; 22/41) reported feeling “somewhat—not at all” supported by healthcare professionals in the period after cancer treatment.

Conclusion

Discussions regarding emotional well-being and ongoing needs post treatment are lacking in cancer survivorship care worldwide.