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.

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.