Introduction
Approximately 16 850 children and adolescents will be newly diagnosed with cancer in 2020.1 While five-year childhood cancer survival rates have improved to 85%,1 cancer remains the leading cause of disease-related death for children in the United States, with 1730 deaths expected in 2020.1 The stress of childhood cancer often challenges parents’ decision-making, time management, coping, and communication, resulting in burden on parental mental health.2 Parental distress has been shown to negatively impact parent-child communication,3–5 and ineffective and harsh communication has been correlated with psychologic problems in children with cancer.5,6
Parents have identified barriers to open and honest communication,7 including desires to protect ill children from fear or other unpleasant emotions,8–12perceptions of inappropriately burdening children,13,14 concerns that children would lose trust in them,11 fear of children’s reactions,8,15 feeling too overwhelmed,12,13 and lack of confidence in communicating.8,13 Some parents have perceived that children were too young to understand,8 already knew so did not need to communicate,8 or lacked the desire to communicate.8,14 Consequently, the majority of parents of children terminally ill with cancer have avoided discussions with their child about potential death.8,16 About a quarter of those parents later regretted not telling their child, more commonly if they sensed their child was aware of their impending death.16 Despite ill children’s frequent awareness, many children avoid communicating about death to protect their parents.10 Parents and children with cancer may also engage in mutual pretense, when they both know the difficult-to-acknowledge truth about the child’s terminal prognosis but pretend as though they do not.8,17 This means of interacting is often set by parents’ lack of openness in disease-related communication with their child.
Despite these challenges, communication between parents and children with cancer is crucial and has numerous benefits. The National Cancer Institute recommends that parents communicate openly and honestly with ill children about their cancer diagnosis.18 Young children value their family in helping them communicate with providers and often feel anxious when information about their disease is withheld.19 Supportive rather than invalidating parental communication has resulted in less pain and distress in children undergoing procedures, such as port access or lumbar puncture.20 In children with incurable cancer, parents have cited that communicating with their child about death allowed for parents to address fears, gave the child the opportunity to help plan their funeral, and resulted in stronger family relationships.8 Parents are motivated to communicate openly with their child when they feel it helps protect their child from fear,10 facilitates coping,14,21 or allows their child to be involved in decision-making.14,15 Many parents want to avoid lying and maintain their child’s trust.9,12,15Child-initiated conversations about their disease or death have facilitated more open parent-child communication.21,22Studies have shown that parents may communicate because they feel it is difficult to hide information15 and are more likely to communicate with older rather than younger children.12,15
Despite these advances in research related to parent-child communication in pediatric oncology, minimal data exist for how parent-child communication changes over time throughout the illness trajectory. Specifically, initial diagnosis or relapse may be milestone timepoints that create challenges for parent-child communication. While parents may communicate more openly with older children,12,15 and children often prefer to know more about their disease over time,23 children’s communication preferences may vary at different points in their illness journey,12,23which may affect the quality and amount of information exchange between parents and children. The purpose of this study was to determine the effect of time since childhood cancer diagnosis and relapse on quality of parent-child communication. We hypothesized that there would be a positive correlation between time and quality of parent-child communication.