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.

Autor: Shuldiner J; Women's College Hospital Institute for Health System Solutions and Virtual Care, Women's College Hospital, Toronto, ON, Canada. Jennifer.shuldiner@wchospital.ca., Lord B; The Peter Gilgan Centre for Women's Cancers, Women's College Hospital, Toronto, ON, Canada., Rinaldo E; The Peter Gilgan Centre for Women's Cancers, Women's College Hospital, Toronto, ON, Canada., Shah N; Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada., Nguyen P; The Peter Gilgan Centre for Women's Cancers, Women's College Hospital, Toronto, ON, Canada., Lam E; Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada., Corrado AM; The Peter Gilgan Centre for Women's Cancers, Women's College Hospital, Toronto, ON, Canada., Wasserman JD; The Hospital for Sick Children, Toronto, ON, Canada., Lofters A; The Peter Gilgan Centre for Women's Cancers, Women's College Hospital, Toronto, ON, Canada.; Department of Family & Community Medicine, University of Toronto, Toronto, ON, Canada., Pereira L; The Peter Gilgan Centre for Women's Cancers, Women's College Hospital, Toronto, ON, Canada., Goulbourne E; The Peter Gilgan Centre for Women's Cancers, Women's College Hospital, Toronto, ON, Canada., Heisey R; The Peter Gilgan Centre for Women's Cancers, Women's College Hospital, Toronto, ON, Canada.; Department of Family & Community Medicine, University of Toronto, Toronto, ON, Canada., Guger SL; The Hospital for Sick Children, Toronto, ON, Canada., Tourigny J; The Hospital for Sick Children, Toronto, ON, Canada., Nathan P; The Hospital for Sick Children, Toronto, ON, Canada.; Division of Hematology/Oncology, Hospital for Sick Children, Toronto, ON, Canada.; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Jazyk: angličtina
Zdroj: Journal of cancer survivorship : research and practice [J Cancer Surviv] 2024 Dec 13. Date of Electronic Publication: 2024 Dec 13.
DOI: 10.1007/s11764-024-01725-w
Abstrakt: 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.
Competing Interests: 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.
(© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
Databáze: MEDLINE
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