Thesis

Parental communication with children about meduallry thyroid cancer and genetic risk

This study explored how parents of children with an inherited RET mutation discuss this diagnosis with their children, as well as the role of healthcare professionals in this process. Parents were asked about the communication process, including discussion of prophylactic thyroidectomy, genetics, and inheritance. Nine semi-structured interviews with parents of children with RET mutations were conducted. The interview transcripts were analyzed using grounded theory by the researcher and a second coder. Themes that emerged from the interviews included preference for open communication, importance of the healthcare providers role, and issues surrounding the prophylactic thyroidectomy. Parents used simple analogies and age-appropriate language to disclose a positive test result. There was a gradual pattern of communication regarding the mutation as the children asked questions regarding the diagnosis. Generally, support from healthcare professionals was viewed positively. Given the rarity of the condition, some parents found it difficult to find healthcare professionals who were familiar with MEN2A. Also, many parents thought that ageappropriate materials for the children would have been helpful during the process. Parents emphasized the preventative nature of the condition to reassure their children. In conclusion, parents communicated with their children in an open manner to both prepare them for surgery, as well as provide an explanation for cancer or surgery in their family. Communication about the inherited mutation was not a one-time event, but a gradual process initiated by the child’s questions or medical events, such as surgery or doctor’s appointments.

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