Discussion
Due to the simultaneous importance and challenge of parent-child communication in childhood cancer, research is needed to better understand how time affects the quality of communication between parents and children with cancer. Novel aspects of this study included the analyses of parent-child communication from both parent and child perspectives, while prior studies have evaluated communication based on either parent or child report.28,29 Other strengths of the study included the large sample size and inclusion of patients with relapsed/refractory cancer, a population that is typically difficult to access.
Contrary to our hypothesis, increased time since cancer diagnosis was associated with more problematic communication and worse overall communication based on parent reports. These results align with those of prior studies in pediatric cancer survivors that showed more time from diagnosis increased the likelihood of developing a struggling parent-child relationship with poor communication.29Similarly, children newly diagnosed with non-advanced cancer have shown an increase in parent-child conflict and problematic communication over time.28,30 While more parent-child communication problems over time may be expected as children enter adolescence and strive for more autonomy,31 we conducted a post-hoc analysis that showed no statistically significant association between child age and years since diagnosis. Thus, age is an unlikely mediator of the correlation between time and problematic communication.
Our results also suggested that time from diagnosis did not impact communication openness. This is in contrast to previous findings in pediatric cancer patients, which showed a decrease in paternal openness at one year after diagnosis compared to time of diagnosis in children with non-advanced cancer.28 However, in studies evaluating quality of communication between adults with cancer and their adolescent children, parent-child communication openness and problems were not impacted by time since diagnosis.32,33
Interesting to note is that our results showed no statistically significant association between time from most recent relapse and quality of communication in the patients with relapsed disease. These results are congruent with a prior study, which showed that parent-child communication problems and openness were more stable in children with advanced cancer, measured in the year following relapse, than in healthy children or those with newly diagnosed non-advanced cancer.28 Ethnographic data from families who experienced childhood cancer relapse found that families strive to maintain normalcy and avoid letting cancer dominate their lives after relapse, distinct from the new-diagnosis period when the families’ lives are completely centered around the child’s treatment.34 This may explain why relapse appeared to be a less important milestone than diagnosis in affecting parent-child communication. While disease relapse has been associated with a closer, more involved parent-child relationship,29 with few studies evaluating communication change over time, more research is needed to understand the continued impact of relapse on parent-child communication.
Limitations of our study included potential selection bias based on the opt-in recruitment approach. The limited range of scores of the PACS may have reduced the ability to detect correlations with time. A small number of fathers participated (n = 10; 7.7%) as primary parent caregivers; thus, the parent PACS data is biased towards maternal impressions of communication with the ill child. Only 61% of children completed the PACS about their fathers (versus 98% about their mothers); this could be due in part to participation by single-parent families, as half of participating parents report being married. Regardless, limited father participation in pediatric research studies has been a long-standing challenge.35–37 Social media advertisements targeting fathers rather than gender-neutral “parent” strategies have recently been shown to improve recruitment in this population.38 Additional research on and implementation of paternal recruitment strategies may allow for a more balanced representation of parental perspectives in future studies.