The present study showed that: 1) a total of 74.1% of parents with minor children disclosed their cancer to their children, 2) the disclosed group wanted to know what their children felt, and 3) the disclosed group frequently had conversations about the possibility of death, compared to those in the undisclosed group.
The present study found that in both groups, parents with cancer had difficult feelings toward their children. The parents with cancer in the disclosed group were more likely to want to know how their children felt than those in the undisclosed group. On the other hand, most of those in the undisclosed group did not know how to explain their own disease to their children. A previous study reported that parents with cancer felt that they did not have sufficient knowledge to tell their children about their own cancer and wanted information from healthcare professionals. Furthermore, patients with cancer felt unsupported by healthcare professionals and felt that they were not provided with enough advice on how to talk with their children about cancer. Healthcare professionals supporting parents with cancer need to communicate to their patients about the disease, and about the difficulties parents face in communicating with their children. It is important for healthcare professionals to provide information tailored to the needs of each patient.
The disclosed group were more likely to have a conversation about the possibility of death with their children, while more than half of the undisclosed group never discussed the possibility of death with their children. The reason for this difference in results is unclear. A previous study reported patients’ or their family members’ difficulty in accepting a poor prognosis was an important barrier to discussing advanced care planning. The present study found that there were more parents who had never thought of the possibility of death in the undisclosed group than the disclosed group. This suggests that some participants in the undisclosed group may not have fully accepted their cancer situation, including their prognosis. In addition, the present study showed that the undisclosed group had more parents who did not know how to explain their own disease condition. Parents with cancer may not know how honest they should be with their children, and be unsure of what is appropriate to share with them, and parents with advanced cancer found it difficult to answer their children’s questions, including about their impending death. Fathers with advanced cancer felt that they did not have the communication skills to talk about their situation with their children. In addition, bereaved families who did not disclosure their terminal status to their children were more likely to feel distressed. These previous studies suggest that parents with cancer and their family caregivers may find it difficult to tell their children about the possibility of death, and it is even more difficult for parents who did not disclose their cancer to their children. However, young adult children of terminal patients desired open and honest communication about cancer diagnosis, treatment, prognosis, and end-of-life care. They also desired to create memories and spend quality time together with their parent before he/she died. Adolescents with parents with cancer had difficulty taking the initiative in having conversations about their parents’ situation. If the children were not given honest information about the disease and its prognosis, they felt anxiety, loneliness, and sadness. A multidisciplinary approach, such as Children’s Lives Include Moments of Bravery (CLIMB), may be helpful to facilitate communication between parents with cancer and their children. CLIMB provides the opportunity to connect with other children who have parents with cancer, to share their feelings, and enhance their understanding of cancer. While such an approach is useful, it presupposes that patients disclosed their cancer to their children and does not include patients who did not. Cancer patients may benefit from online peer support networks, as an online peer support group, such as “Cancer Parents”, could be an easily accessible resource that provides emotional support.
This study had several limitations. First, the participants were favourable to using an online peer support, which may limit the ability to generalize the findings to diverse populations. Second, since this study was a self-administered web survey, the clinical information may not always be accurate. Third, there was a predominance of women in our sample (80%), compared with previous studies.[24–27] Fourth, the percentage of respondents was small at about 10% of all the members of the website; thus, it was difficult to identify the number of all members who matched the inclusion criteria. Therefore, the findings may contain a response bias and self-selection bias.
Future research should investigate: 1) sex differences about feelings toward their minor children, and thoughts about telling them; and 2) what kinds of information and support help parents with cancer who did not disclose their illness to their minor children.