Shuldiner Jennifer, Lord Bridgette, Rinaldo Emma, Shah Nida, Nguyen Patricia, Lam Emily, Corrado Anne Marie, Wasserman Jonathan D, Lofters Aisha, Pereira Luana, Goulbourne Elaine, Heisey Ruth, Guger Sharon L, Tourigny Joel, Nathan Paul
Women's College Hospital Institute for Health System Solutions and Virtual Care, Women's College Hospital, Toronto, ON, Canada.
The Peter Gilgan Centre for Women's Cancers, Women's College Hospital, Toronto, ON, Canada.
J Cancer Surviv. 2024 Dec 13. doi: 10.1007/s11764-024-01725-w.
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.
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.
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).
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.
This study confirms the need for an intervention that encourages and supports parents to have this difficult conversation with their child.
儿童癌症幸存者一生患病和死亡风险增加，但对定期监测的依从性欠佳。儿童癌症成年幸存者未完成推荐监测的原因之一是其父母可能未向他们透露癌症病史。我们试图确定与儿童谈论其癌症病史的关键障碍和促成因素。
对延迟告知孩子癌症诊断的儿童癌症幸存者的父母进行了半结构化访谈。理论领域框架（TDF）为访谈指南和分析提供了依据。访谈记录逐行编码，并根据该框架映射到各个领域。
对儿童癌症幸存者的父母进行了12次访谈。父母表示希望保护孩子，不让他们知道自己患过癌症，因为他们认为这可能导致过度警惕并影响孩子的身份认同（TDF领域：对后果的信念）。父母还担心谈话会“引发”他们自己与孩子患癌时期相关的情绪（情绪）。由于这些障碍，临床团队的影响被描述为推动进行这一艰难谈话的动力（社会影响）。父母也坚信孩子有权知道，并且他们可以利用这些信息保护自己并保持健康（动机）。
父母认为告诉孩子他们患过癌症很重要，因为“知识就是力量”，而且孩子“有权知道”。然而，这是一次往往会被回避的艰难谈话。
本研究证实需要一种干预措施，鼓励并支持父母与孩子进行这一艰难谈话。
