Relationship between problems related to child late effects and parent burnout after pediatric hematopoietic stem cell transplantation.

ABSTRACT

A few studies have indicated that parents' reactions to a child's serious disease may entail long-term stress for the parents. However, further knowledge of its consequences is valuable. The aim of the study was to investigate the occurrence of burnout in a Swedish national sample of parents of children who had undergone HSCT and survived. Burnout (Shirom-Melamed Burnout Questionnaire) and estimations of the child's health status (Lansky/Karnofsky estimations and study-specific questions) were self-reported by 159 mothers and 123 fathers. In addition, physicians made estimations of the child's health status (Lansky/Karnofsky estimations). Nonparametric tests revealed that burnout symptoms occurred more often among fathers of children who had undergone transplantation within the last five yr compared to fathers of children with no history of serious disease (34.4% vs. 19.9%). Burnout among mothers and fathers was associated with the child's number and severity of health impairments up to five yr after the child underwent HSCT (Spearman's rho for mothers 0.26-0.36 and for fathers 0.36-0.61). In conclusion, chronic stress in parents after a child's HSCT seems to abate eventually. However, parents should be monitored and offered adequate support when needed. Moreover, the situation of fathers in the often mother-dominated pediatric setting should receive more attention in research as well as in the clinic.