Emotional distress in parents of long-term survivors of childhood acute lymphoblastic leukemia

Abstract

Objective The current study investigated the occurrence of emotional distress in parents of long-term survivors of childhood acute lymphoblastic leukemia (ALL) and identified factors associated with parent emotional distress symptoms. Methods Parents of 127 long-term survivors of childhood ALL treated on a chemotherapy-only protocol at St. Jude Children’s Research Hospital participated in the study. Parents completed standard ratings of emotional distress, caregiver strain, and child physical, emotional, and psychosocial functioning. Multivariable hierarchical linear regression analyses were used to examine associations between symptoms of caregiver strain, survivor functioning, and parent emotional distress. Covariates included parent education, survivor age, survivor sex, and time since childhood cancer diagnosis. Results On average, few parents reported significant symptoms of emotional distress. Clinically significant levels of anxiety and depression were reported by 7.1% and 3.1% of parents, respectively. Only 3.9% of parents endorsed significant symptoms of posttraumatic stress. Perceived caregiver strain was significantly associated with symptoms of parent anxiety, depression, and posttraumatic stress. Parent-report of child emotional functioning was significantly associated with symptoms of parent anxiety. Conclusions Most parents of long-term survivors of ALL exhibit low levels of emotional distress in the context of rates observed in the general population. Perceived caregiver strain was significantly associated with parent emotional distress. Further research is required to examine specific sources of caregiver strain, as well as other risk and protective factors associated with parent emotional distress symptoms.

Quality of Life in Pediatric Cancer Survivors: Contributions of Parental Distress and Psychosocial Family Risk

“…In addition, psychosocial family risk was negatively associated with both parent-proxy and child self-reported hrql. These findings are consistent with previous literature that has found that parent distress is associated with lower parent-reported child hrql in children on active treatment 13,16 . One possibility for the lack of relation between parental distress and child-reported hrql may be due to differences in parent and child perceptions of the child's hrql.…”

“…Specifically, previous findings have shown that high levels of parent distress symptoms are positively associated with the distress symptoms of pediatric cancer survivors 13 . Indeed, the association between parent and child distress has been shown to become stronger over time following a child's diagnosis, making this association particularly poignant as the child transitions to survivorship 14,15 .…”

“…The mechanisms by which parent psychological distress impacts child hrql have been hypothesized to include biological susceptibility to emotional difficulties, interference with a parent's ability to provide the emotional support necessary for successful child adaptation, and increased use of parent behaviours that are associated with child distress such as lowered sensitivity, increased hostility, and withdrawal 11,15 . One concern that has been noted in the literature with respect to the impact of parent psychological distress on the hrql of childhood cancer survivors is the reliance on parentproxy reports of child hrql, which may result in reporting bias 13,16 . Although parent and child reports of hrql in the chronically ill have been shown to be quite high, there is greater agreement for observable functioning (e.g., physical hrql) than for non-observable functioning (e.g., emotional or social hrql) 17 , suggesting the need to consider both reports.…”

Behavioral symptoms and psychiatric disorders in child and adolescent long‐term survivors of childhood acute lymphoblastic leukemia treated with chemotherapy only

“…Furthermore, emotional discuss such as PTSS can persist many years following the completion of therapy . Parental distress has been associated with their report of emotional symptoms in child survivors of ALL, although it is unclear whether this distress impacts the child's emotional or behavioral symptoms . The association between parental emotional distress or PTSS and behavioral problems in childhood cancer survivors requires further investigation.…”

“…There have been inconsistent reports pertaining to emotional distress in parents of survivors of childhood cancer, 8 Most parents of survivors of ALL treated on chemotherapy-only protocols do not have elevated symptoms of anxiety, depression or post-traumatic stress symptoms (PTSS); however subgroups of parents do report substantial symptoms of psychological distress or PTSS. 8,9 Furthermore, emotional discuss such as PTSS can persist many years following the completion of therapy. 10 Parental distress has been associated with their report of emotional symptoms in child survivors of ALL, although it is unclear whether this distress impacts the child's emotional or behavioral symptoms.…”