Financial toxicity of childhood cancer and changes to parents' employment after treatment completion.
Adult
Child
Child, Preschool
Conflict, Psychological
Cost of Illness
Employment
/ statistics & numerical data
Female
Follow-Up Studies
Humans
Male
Middle Aged
Neoplasms
/ economics
Parents
/ psychology
Prognosis
Qualitative Research
Retrospective Studies
Return to Work
/ psychology
Socioeconomic Factors
Young Adult
childhood cancer
cost
economic impact
employment
financial toxicity
psychosocial
vocational impact
Journal
Pediatric blood & cancer
ISSN: 1545-5017
Titre abrégé: Pediatr Blood Cancer
Pays: United States
ID NLM: 101186624
Informations de publication
Date de publication:
07 2020
07 2020
Historique:
received:
24
11
2019
revised:
01
04
2020
accepted:
02
04
2020
pubmed:
26
4
2020
medline:
25
8
2020
entrez:
26
4
2020
Statut:
ppublish
Résumé
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' complex and nuanced experiences and perspectives. We interviewed 56 parents of childhood cancer survivors (M = 2.13 years after treatment completion; 89% mothers) using the vocational and financial impact section of the Psychosocial Adjustment to Illness Scale-Carer Interview Form. We analyzed interviews using content analysis. 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. Workplace 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. Clinical staff including social workers could more consistently assess families' financial 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.
Types de publication
Journal Article
Randomized Controlled Trial
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e28345Informations de copyright
© 2020 Wiley Periodicals, Inc.
Références
Kelada L, Wakefield CE, Carlson L, et al. How parents of childhood cancer survivors perceive support from their extended families. J Child Family Studies. 2019;28:1537-1547.
Kelada L, Wakefield CE, Doolan EL, et al. Grandparents of children with cancer: a controlled comparison of perceived family functioning. Support Care Cancer. 2019;27(6):2087-2094.
Long KA, Marsland AL. Family adjustment to childhood cancer: a systematic review. Clin Child Fam Psychol Rev. 2011;14(1):57-88.
Wakefield CE, McLoone JK, Butow P, Lenthen K, Cohn RJ. Parental adjustment to the completion of their child's cancer treatment. Pediatr Blood Cancer. 2011;56(4):524-531.
Cohn RJ, Goodenough B, Foreman T, Suneson J. Hidden financial costs in treatment for childhood cancer: an Australian study of lifestyle implications for families absorbing out-of-pocket expenses. J Pediatr Hematol Oncol. 2003;25(11):854-863.
Wakefield CE, McLoone JK, Evans NT, Ellis SJ, Cohn RJ. It's more than dollars and cents: the impact of childhood cancer on parents’ occupational and financial health. J Psychosoc Oncol.2014;32(5):602-621.
Roser K, Erdmann F, Michel G, Winther JF, Mader L. The impact of childhood cancer on parents' socio-economic situation-a systematic review. Psycho-Oncol. 2019;28(6):1207-1226.
Santacroce SJ, Kneipp SM. A conceptual model of financial toxicity in pediatric oncology. J Pediatr Oncol Nurs. 2019;36(1):6-16.
Heath JA, Lintuuran RM, Rigguto G, Tikotlian N, McCarthy M. Childhood cancer: its impact and financial costs for Australian families. Pediatr Hematol Oncol. 2006;23(5):439-448.
de Oliveira C, Bremner KE, Liu N, et al. Costs for childhood and adolescent cancer, 90 days prediagnosis and 1 year postdiagnosis: a population-based study in Ontario, Canada. Value Health. 2017;20(3):345-356.
Kaul S, Korgenski EK, Ying J, et al. A retrospective analysis of treatment-related hospitalization costs of pediatric, adolescent, and young adult acute lymphoblastic leukemia. Cancer Med. 2016;5(2):221-229.
Force LM, Abdollahpour I, Advani SM, et al. The global burden of childhood and adolescent cancer in 2017: an analysis of the Global Burden of Disease Study 2017. Lancet Oncol. 2019;20(9):1211-1225.
The Lancet P. Deeper understanding. Lancet Psychiatry. 2019;6(9):713.
Wakefield C, Sansom-Daly UM, McGill BC, et al. Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomised controlled trial. Trials. 2015;16(1):153.
Derogatis LR. The psychosocial adjustment to illness scale (PAIS). J Psychosom Res. 1986;30(1):77-91.
Kolokotroni P, Anagnostopoulos F, Missitzis I. Psychosocial Adjustment to Illness Scale: factor structure, reliability, and validity assessment in a sample of Greek breast cancer patients. Women Health. 2017;57(6):705-722.
Merluzzi TV, Martinez Sanchez MA. Factor structure of the Psychosocial Adjustment to Illness Scale (Self-Report) for persons with cancer. Psychol Assess. 1997;9(3):269.
Miles MB, Huberman AM, Huberman MA, Huberman M. Qualitative Data Analysis: An Expanded Sourcebook. Thousand Oaks, CA: SAGE; 1994.
Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107-115.
Campbell JL, Quincy C, Osserman J, Pedersen OK. Coding in-depth semistructured interviews: problems of unitization and intercoder reliability and agreement. Sociol Methods Res. 2013;42(3):294-320.
Burla L, Knierim B, Barth J, Liewald K, Duetz M, Abel T. From text to codings: intercoder reliability assessment in qualitative content analysis. Nurs Res. 2008;57(2):113-117.
Brody AC, Simmons LA. Family resiliency during childhood cancer: the father's perspective. J Pediatr Oncol Nurs. 2007;24(3):152-165.
McCubbin M, Balling K, Possin P, Frierdich S, Bryne B. Family resiliency in childhood cancer. Fam Relat. 2002;51(2):103-111.
Eiser C, Upton P. Costs of caring for a child with cancer: a questionnaire survey. Child Care Health Dev. 2007;33(4):455-459.
Wakefield CE, McLoone JK, Evans NT, Ellis SJ, Cohn RJ. It's more than dollars and cents: the impact of childhood cancer on parents occupational and financial health. J Psychosoc Oncol. 2014;32(5):602-621.
Tiedtke C, deRijk A, Dierckx de Casterlé B, Christiaens MR, Donceel P. Experiences and concerns about ‘returning to work’ for women breast cancer survivors: a literature review. Psycho-oncology. 2010;19(7):677-683.
Limburg H, Shaw AK, McBride ML. Impact of childhood cancer on parental employment and sources of income: a Canadian pilot study. Pediatr Blood Cancer. 2008;51(1):93-98.
Hovén E, vonEssen L, Norberg AL. A longitudinal assessment of work situation, sick leave, and household income of mothers and fathers of children with cancer in Sweden. Acta Oncol (Madr). 2013;52(6):1076-1085.
Lindahl Norberg A, Montgomery SM, Bottai M, Heyman M, Hovén EI. Short-term and long-term effects of childhood cancer on income from employment and employment status: a national cohort study in Sweden. Cancer. 2017;123(7):1238-1248.
Youlden DR, Aitken JF. Childhood cancer in Australia, 1983-2015. Brisbane, Australia:Cancer Council Queensland; 2019.
Olivetti C, Petrongolo B. The economic consequences of family policies: lessons from a century of legislation in high-income countries. J Econ Perspect. 2017;31(1):205-230.
McNall LA, Masuda AD, Nicklin JM. Flexible work arrangements, job satisfaction, and turnover intentions: the mediating role of work-to-family enrichment. J Psychol. 2009;144(1):61-81.
Clarke NE, McCarthy MC, Downie P, Ashley DM, Anderson VA. Gender differences in the psychosocial experience of parents of children with cancer: a review of the literature. Psycho-Oncol.2009;18(9):907-915.
Schofield D, Shrestha RN, Zeppel MJB, et al. Economic costs of informal care for people with chronic diseases in the community: lost income, extra welfare payments, and reduced taxes in Australia in 2015-2030. Health Soc Care Community. 2019;27(2):493-501.
de Boer A, Taskila TK, Tamminga SJ, Feuerstein M, Frings-Dresen MHW, Verbeek JH. Interventions to enhance return-to-work for cancer patients. Cochrane Database Syst Rev. 2015;25(9):CD007569.
Kiasuwa Mbengi R, Otter R, Mortelmans K, et al. Barriers and opportunities for return-to-work of cancer survivors: time for action-rapid review and expert consultation. Syst Rev. 2016;5(1):35.
Pelletier W, Bona K. Assessment of financial burden as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62(S5):S619-S31.
Kazak AE, Schneider S, Didonato S, Pai AL. Family psychosocial risk screening guided by the pediatric psychosocial preventative health model (PPPHM) using the Psychosocial Assessment Tool (PAT). Acta Oncol (Madr). 2015;54(5):574-580.
Pai AL, Patiño-Fernández AM, McSherry M, et al. The Psychosocial Assessment Tool (PAT2. 0): psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. J Pediatr Psychol. 2007;33(1):50-62.
Wakefield C, Fardell JE, Doolan EL, et al. Participation in psychosocial oncology and quality-of-life research: a systematic review. Lancet Oncol. 2017;18(3):e153-e65.
Gupta S, Rivera-Luna R, Ribeiro RC, Howard SC. Pediatric oncology as the next global child health priority: the need for national childhood cancer strategies in low-and middle-income countries. PLoS Med. 2014;11(6):e1001656.
Olbara G, Martijn H, Njuguna F, et al. Influence of health insurance status on childhood cancer treatment outcomes in Kenya. Support Care Cancer. 2020;28(2):917-924.
Chan RJ, Gordon LG, Tan CJ, et al. Relationships between financial toxicity and symptom burden in cancer survivors: a systematic review. J Pain Symptom Manage. 2019;57(3):646-660.e1.