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.