Received: 24 November 2019 Revised: 1 April 2020 Accepted: 2 April 2020 DOI: 10.1002/pbc.28345 Pediatric Blood & Cancer The American Society of Pediatric Hematology/Oncology PSYCHOSOCIAL AND SUPPORTIVE CARE: RESEARCH ARTICLE Financial toxicity of childhood cancer and changes to parents’ employment after treatment completion Lauren Kelada 1,2 Claire E. Wakefield 1,2 Janine Vetsch 1,2,3 Deborah Schofield 4 Ursula M. Sansom-Daly 1,2 Kate Hetherington 1,2 Tracey O’Brien 1,2 Richard J. Cohn 1,2 Antoinette Anazodo 1,2,5 Rosalie Viney 6 Melanie J.B. Zeppel 4 1 School of Women’s and Children’s Health, UNSW Sydney, Kensington, New South Wales, Australia 2 Kids Cancer Centre, Sydney Children’s Hospital, High Street, Randwick, New South Wales, Australia 3 Institute for Applied Nursing Sciences IPW-FHSUniversity of Applied Sciences FHS St. Gallen, St. Gallen, Switzerland 4 Centre for Economic Impacts of Genomic Medicine, Macquarie University, Sydney, New South Wales, Australia 5 Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, High Street, Randwick, New South Wales, Australia 6 Centre for Health Economics Research and Evaluation, University of Technology Sydney, New South Wales, Australia Correspondence Lauren Kelada, Sydney Children’s Hospital, Kids Cancer Centre, Level 1 High Street, Randwick, NSW 2031, Australia. Email: l.kelada@unsw.edu.au Funding information Cancer Australia, Grant/Award Number: APP1065428; National Health and Medical Research Council of Australia, Grant/Award Number: APP1143767; Cancer Institute of NSW, Grant/Award Number: 14/ECF/1-11; the Kids with Cancer Foundation; Kids Cancer Alliance; Cancer Council New South Wales, Grant/Award Number: PG16-02; Estate of the Late Harry McPaul Abstract Objective: Childhood cancer can have short- and long-term impacts on parents’ finances and employment. It is important to understand how families adjust to the financial and employment changes caused by childhood cancer, the ongoing impacts after treatment completion, and which families need more targeted support. Qualitative research is necessary to facilitate an in-depth understanding of the employment and financial impacts on families and to capture parents’ com- plex and nuanced experiences and perspectives. Methods: We interviewed 56 parents of childhood cancer survivors (M = 2.13 years after treat- ment completion; 89% mothers) using the vocational and financial impact section of the Psychoso- cial Adjustment to Illness Scale–Carer Interview Form. We analyzed interviews using content analysis. Results: Parents reported multiple sources of financial toxicity including travel to and from the hospital and needing to reduce their working hours during their child’s cancer treatment. Work- place flexibility was an important factor to protect against unwanted vocational changes. After treatment completion, families living in low socioeconomic areas commonly reported ongoing financial difficulties. Mothers, particularly those who were on maternity leave when their child was diagnosed with cancer, reported ongoing employment impacts including unemployment. Conclusions: Clinical staff including social workers could more consistently assess families’ finan- cial distress and refer to professional services who can offer guidance for financial decision- making as standard care. Flexible workplace agreements appear important for parents of children with cancer. Our findings can assist organizations to understand that cancer-related disruptions are likely to continue after treatment completion, and therefore should offer benefits to parents where possible. KEYWORDS childhood cancer, cost, economic impact, employment, financial toxicity, psychosocial, vocational impact Abbreviations: PAIS, Psychosocial Adjustment to Illness Scale–Carer Interview Form; SES, socioeconomic status. 1 INTRODUCTION Families experience enormous upheaval when a child is diagnosed with cancer. 1-4 Along with the physical and psychological effects of childhood cancer, families also face challenging impacts on finances Pediatr Blood Cancer. 2020;e28345. c ○ 2020 Wiley Periodicals, Inc. 1 of 9 wileyonlinelibrary.com/journal/pbc https://doi.org/10.1002/pbc.28345