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. 2024 Dec 13.
doi: 10.1007/s11764-024-01725-w. Online ahead of print.

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

Jennifer Shuldiner  1 , Bridgette Lord  2 , Emma Rinaldo  2 , Nida Shah  3 , Patricia Nguyen  2 , Emily Lam  3 , Anne Marie Corrado  2 , Jonathan D Wasserman  4 , Aisha Lofters  2   5 , Luana Pereira  2 , Elaine Goulbourne  2 , Ruth Heisey  2   5 , Sharon L Guger  4 , Joel Tourigny  4 , Paul Nathan  4   6   7
Affiliations

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

Jennifer Shuldiner et al. J Cancer Surviv. .

Abstract

Purpose: Childhood cancer survivors are at increased lifetime risk of morbidity and mortality, but adherence to periodic surveillance is suboptimal. One of the reasons that adult survivors of childhood cancer do not complete the recommended surveillance is that their parents may not have disclosed their cancer history to them. We sought to identify key barriers and enablers to talking to children about their cancer history.

Method: Semi-structured interviews were completed with parents of childhood cancer survivors who had delayed telling their child about their cancer diagnosis. The theoretical domain framework (TDF) informed the interview guide and analysis. Interview transcripts were coded line-by-line and mapped to domains in accordance with the framework.

Results: Twelve interviews were conducted with parents of childhood cancer survivors. Parents expressed a desire to protect their children from the knowledge and awareness that they had cancer, as they thought it could lead to hypervigilance and impact their child's identity (TDF domain: belief about consequences). Parents were also afraid the conversation would "trigger" emotions for themselves related to the time their child had cancer (emotion). Due to these barriers, it was the influence of the clinical team that was described as the driving push to having this difficult conversation (social influences). Parents also had a strong conviction that their child had the right to know and that they could use this information to protect themselves and stay healthy (motivation).

Discussion: Parents thought telling their child they had cancer was important because "knowledge is power" and their child "has the right to know." However, this was a difficult conversation that was often avoided.

Implications for cancer survivors: This study confirms the need for an intervention that encourages and supports parents to have this difficult conversation with their child.

Keywords: Cancer; Childhood cancer survivors; Late-effects; Survivorship.

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Conflict of interest statement

Declarations. Ethics approval: The study was approved by The Hospital for Sick Children Research Ethics Board (Protocol # 1000076291) and Women’s College Hospital REB (#: 2020–0108-E). Consent to participate: All participants gave informed consent to participate in the research study. Consent for publication: All participants gave informed consent that the data we received could be published. Conflict of interest: The authors declare no competing interests.

References

    1. Reulen RC, Winter DL, Frobisher C, et al. Long-term cause-specific mortality among survivors of childhood cancer. JAMA. 2010;304:172–9. - DOI - PubMed
    1. Hudson MM, Ness KK, Gurney JG, et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA. 2013;309:2371–81. - DOI - PubMed - PMC
    1. Board Simone JV, Weiner SL, Hewitt M (eds). Childhood cancer survivorship: improving care and quality of life. Institute of Medicine National Research Council. 2003.
    1. 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. - DOI - PubMed
    1. 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. - DOI

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