Celebration and insecurity after childhood cancer: parental distress in the first year after successfully coming off treatment

Objective: The period after successfully coming off treatment (SCOT) following a childhood cancer diagnosis is known to be a vulnerable time for parents in which increased levels of distress can play a significant role. It is important to know more about the distress experienced by parents during this period to determine whether an intervention should be used to help parents return to ‘normal life’. The aim of this study was therefore to gain better understanding of parental distress and factors related to their distress during the first year after their child has successfully completed treatment. Methods: A sample of 283 parents of children who had successfully completed cancer treatment in the previous year were included in this cross-sectional study. These parents, who were part of the SCOT group, were invited to complete the Distress Thermometer for Parents (DT-P) within one year after treatment completion. The DT-P consists of a thermometer score to measure experienced distress...Show moreObjective: The period after successfully coming off treatment (SCOT) following a childhood cancer diagnosis is known to be a vulnerable time for parents in which increased levels of distress can play a significant role. It is important to know more about the distress experienced by parents during this period to determine whether an intervention should be used to help parents return to ‘normal life’. The aim of this study was therefore to gain better understanding of parental distress and factors related to their distress during the first year after their child has successfully completed treatment. Methods: A sample of 283 parents of children who had successfully completed cancer treatment in the previous year were included in this cross-sectional study. These parents, who were part of the SCOT group, were invited to complete the Distress Thermometer for Parents (DT-P) within one year after treatment completion. The DT-P consists of a thermometer score to measure experienced distress and problem domains (practical, social, emotional, physical, cognitive, and parenting). Parents in the SCOT group were compared with parents in the general population (NORM group) to see if their distress levels were higher. In addition, the association between distress and the problem domains and child- or parent-related factors (time since the end of treatment, cancer type, child’s age, parental disease, and perceived support) was examined. Results: Parents (73.9% mothers) in the SCOT group experienced higher levels of distress in the first year after SCOT compared to the general population (fathers SCOT: M=3.5, SD=2.6 vs. fathers NORM: M=2.8, SD=2.5; p=.032; mothers SCOT: M=4.1, SD=2.7 vs. mothers NORM: M=3.5, SD=2.7; p=.001). Emotional (p<.001), practical (p=.016), and physical (p=.005) problems were predictors of higher distress levels. Parents’ perceived support from their environment contributed also to their level of distress (p<.001). Conclusions: Parents of children who have successfully completed cancer treatment experience increased levels of distress in the first year after treatment compared to parents in the general population. There may be value in developing an intervention to ease this transition that specifically addresses their emotional well-being and highlights the importance of their social network during this vulnerable period.Show less

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Celebration and insecurity after childhood cancer: parental distress in the first year after successfully coming off treatment