The decision to disclose to your child they are a childhood cancer survivor: a qualitative study of barriers and facilitators using the theoretical domain framework

Reulen RC, Winter DL, Frobisher C, et al. Long-term cause-specific mortality among survivors of childhood cancer. JAMA. 2010;304:172–9.

Article  CAS  PubMed  Google Scholar 

Hudson MM, Ness KK, Gurney JG, et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA. 2013;309:2371–81.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Board Simone JV, Weiner SL, Hewitt M (eds). Childhood cancer survivorship: improving care and quality of life. Institute of Medicine National Research Council. 2003.

Landier W, Bhatia S, Eshelman DA, et al. Development of risk-based guidelines for pediatric cancer survivors: the childrenʼs oncology group long-term follow-up guidelines from the childrenʼs oncology group late effects committee and nursing discipline. J Clin Oncol. 2004;22:4979–90.

Article  PubMed  Google Scholar 

Nathan P, Ness K, Hudson M, et al. Cancer screening in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study (CCSS). J Clin Oncol. 2009;27:CRA6501–CRA6501.

Article  Google Scholar 

Hodgson DC, Cotton C, Crystal P, et al. Impact of early breast cancer screening on mortality among young survivors of childhood Hodgkin’s lymphoma. JNCI: Journal of the National Cancer Institute. 2016;108:djw010.

Article  Google Scholar 

Childrenʼs Oncology Group. Long-term follow up guidelines for survivors of childhood, adolescent and young adult cancer, 2018.

Hodgson DKH, Gini A, Meester R, Lansdorp-Vogelaar I. Cost effectiveness of early colorectal cancer screening in childhood cancer survivors. Pediatr Bloor Cancer. 2018;65:S40–1.

Google Scholar 

Marr KC, Agha M, Sutradhar R, et al. Specialized survivor clinic attendance increases adherence to cardiomyopathy screening guidelines in adult survivors of childhood cancer. J Cancer Surviv. 2017;11:614–23.

Article  PubMed  Google Scholar 

Yan AP, Chen Y, Hudson MM, et al. Impact of survivorship care plans (SCPs) on adherence to surveillance for second malignant neoplasms (SMNs) and cardiac dysfunction in the Childhood Cancer Survivor Study (CCSS). J Clin Oncol. 2018;36:10560–10560.

Article  Google Scholar 

Yeazel MW, Oeffinger KC, Gurney JG, et al. The cancer screening practices of adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer. 2004;100:631–40.

Article  PubMed  Google Scholar 

Nathan PC, Ness KK, Mahoney MC, et al. Screening and surveillance for second malignant neoplasms in adult survivors of childhood cancer: a report from the childhood cancer survivor study. Ann Intern Med. 2010;153:442–51.

Article  PubMed  PubMed Central  Google Scholar 

Oeffinger KC, Ford JS, Moskowitz CS, et al. Breast cancer surveillance practices among women previously treated with chest radiation for a childhood cancer. JAMA. 2009;301:404–14.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Daniel CL, Kohler CL, Stratton KL, et al. Predictors of colorectal cancer surveillance among survivors of childhood cancer treated with radiation: a report from the Childhood Cancer Survivor Study. Cancer. 2015;121:1856–63.

Article  PubMed  Google Scholar 

Yan AP, Chen Y, Henderson TO, et al. Adherence to surveillance for second malignant neoplasms and cardiac dysfunction in childhood cancer survivors: a Childhood Cancer Survivor Study. J Clin Oncol. 2020;38:1711–22.

Article  PubMed  PubMed Central  Google Scholar 

Clarke SA, Davies H, Jenney M, et al. Parental communication and children’s behaviour following diagnosis of childhood leukaemia. Psycho-Oncology: Journal of the Psychological Social and Behavioral Dimensions of Cancer. 2005;14:274–81.

Article  Google Scholar 

Kadan-Lottick NS, Robison LL, Gurney JG, et al. Childhood cancer survivors’ knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA. 2002;287:1832–9.

Article  PubMed  Google Scholar 

Bashore L. Childhood and adolescent cancer survivors’ knowledge of their disease and effects of treatment. J Pediatr Oncol Nurs. 2004;21:98–102.

Article  PubMed  Google Scholar 

Yoshida S, Otani H, Hirai K, et al. A qualitative study of decision-making by breast cancer patients about telling their children about their illness. Support Care Cancer. 2010;18:439–47.

Article  PubMed  Google Scholar 

Masumoto D, Matsui H, Yano K, et al. Internal struggle for diagnosis disclosure of childhood cancer to children among Japanese parents; comparison of the results from cross-sectional studies conducted in the last two decades. Pediatr Hematol Oncol J. 2021;6:193–7.

Article  Google Scholar 

Wang Q, Arber A, Shen A, et al. Perspectives of Chinese cancer patients toward disclosure of cancer diagnosis to their minor children. Cancer Nurs. 2020;43:2–11.

Article  PubMed  Google Scholar 

Arabiat D, Alqaissi N, Hamdan-Mansour A. Children’s knowledge of cancer diagnosis and treatment: Jordanian mothersʼ perceptions and satisfaction with the process. Int Nurs Rev. 2011;58:443–9.

Article  CAS  PubMed  Google Scholar 

Taub S, Macauley R. Responding to parental requests for nondisclosure to patients of diagnostic and prognostic information in the setting of serious disease. Pediatrics. 2023;152:e2023063754.

Article  PubMed  Google Scholar 

Watanabe A, Nunes T. Abreu Gd: Japanese parents’ perception of disclosing the diagnosis of cancer to their children. Clin Child Psychol Psychiatry. 2014;19:125–38.

Article  PubMed  Google Scholar 

Young B, Dixon-Woods M, Windridge KC, et al. Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ. 2003;326:305.

Article  PubMed  PubMed Central  Google Scholar 

Asbury N, Lalayiannis L, Walshe A. How do I tell the children? Women’s experiences of sharing information about breast cancer diagnosis and treatment. Eur J Oncol Nurs. 2014;18:564–70.

Article  PubMed  Google Scholar 

Meriggi F, Andreis F, Liborio N, et al. Parents with cancer: searching for the right balance between telling the truth and protecting children. Palliat Support Care. 2017;15:88–97.

Article  PubMed  Google Scholar 

Cane J, O’Connor D, Michie S. Validation of the theoretical domains framework for use in behaviour change and implementation research. Implement Sci. 2012;7:37.

Article  PubMed  PubMed Central  Google Scholar 

Atkins L, Francis J, Islam R, et al. A guide to using the theoretical domains framework of behaviour change to investigate implementation problems. Implement Sci. 2017;12:77.

Article  PubMed  PubMed Central  Google Scholar 

Michie S, Atkins L, West R. The behaviour change wheel: a guide to designing interventions. London: Silverback Publishing; 2014.

Google Scholar 

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.

Article  Google Scholar 

Glaser BG, Strauss AL. The constant comparative method of qualitative analysis. Soc Probl. 1965;12:436–45.

Article  Google Scholar 

Shenton AK. Strategies for ensuring trustworthiness in qualitative research projects. Educ Inf. 2004;22:63–75.

Google Scholar 

Chesler MA, Paris J, Barbarin OA. “Telling” the child with cancer: parental choices to share information with ill children. J Pediatr Psychol. 1986;11:497–516.

Article  CAS  PubMed  Google Scholar 

Lester P, Chesney M, Cooke M, et al. Diagnostic disclosure to HIV-infected children: how parents decide when and what to tell. Clin Child Psychol Psychiatry. 2002;7:85–99.

Article  Google Scholar 

Benson A, Lambert V, Gallagher P, et al. Parent perspectives of the challenging aspects of disclosing a child’s epilepsy diagnosis to others: why don’t they tell? Chronic Illn. 2017;13:28–48.

Article  PubMed  Google Scholar 

Brand SR, Fasciano K, Mack JW. Communication preferences of pediatric cancer patients: talking about prognosis and their future life. Support Care Cancer. 2017;25:769–74.

Article  PubMed  Google Scholar 

Zwarenstein M, Treweek S, Gagnier JJ, et al. Improving the reporting of pragmatic trials: an extension of the CONSORT statement. Bmj. 2008;337:a2390–a2390.

Article  PubMed  PubMed Central  Google Scholar 

Last B, Van Veldhuizen A. Information about diagnosis and prog

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