Alexandra Cutillo, Kathrin Zimmerman, Susan Davies, Avi Madan-Swain, Wendy Landier, Anastasia Arynchyna and Brandon G. Rocque
The goal of this study was to determine what strategies caregivers use to cope with the stress of a child who has recently undergone surgical treatment for a newly diagnosed brain tumor. Results will be used to improve psychosocial assessments and treatments provided to these families during initial hospitalization.
Caregivers of children with newly diagnosed brain tumors admitted to Children’s of Alabama were enrolled during the child’s initial hospitalization for surgical treatment from April 2016 to August 2017. The single-item, National Comprehensive Cancer Network visual analog Distress Thermometer (DT) was administered. Clinical and demographic variables were collected from the medical record. Approximately 1 month after patients were discharged from the hospital, caregivers participated in a semistructured interview that included questions about parent and family coping strategies. Broad questions about stress management since diagnosis were followed by specific questions about individual coping strategies. Interviews were recorded, transcribed, and coded for common themes. Themes were broadly characterized as adaptive versus maladaptive coping. Analysis was then performed to determine if DT scores or clinical or demographic factors were associated with the presence of maladaptive coping using a concurrent triangulation mixed-methods design.
Caregivers identified several adaptive coping strategies, such as active coping, acceptance coping, emotion-focused coping, spiritual coping, social support, and posttraumatic growth. Maladaptive coping strategies were mostly categorized as avoidant coping. Caregivers endorsed multiple different coping strategies (mean of 4.59 strategies per caregiver). No clinical or demographic variables, whether the tumor was benign or malignant, or the DT score correlated with caregiver endorsement of maladaptive coping strategies.
Caregivers of children newly diagnosed with brain tumors employ a number of coping strategies, some of which are maladaptive. The authors have not identified any method for predicting who is at risk for maladaptive coping. Assessment of coping skills and education about coping have the potential to improve overall care delivery to these families.
Brandon G. Rocque, Alexandra Cutillo, Kathrin Zimmerman, Anastasia Arynchyna, Susan Davies, Wendy Landier and Avi Madan-Swain
Hospitalization for a newly diagnosed pediatric brain tumor is an extremely stressful time for a family, but this period has not been the focus of rigorous study. The purpose of this study was to quantify distress and psychosocial risk in this population to improve psychosocial care delivery.
The authors administered the National Comprehensive Cancer Network Distress Thermometer (DT) and the Psychosocial Assessment Tool 2.0 (PAT) to primary caregivers of all children admitted to Children’s of Alabama with a new brain tumor between April 2016 and August 2017. The DT is a single-item measure of distress (scale range 0–10). The PAT (range 0–7) stratifies families by risk level: a score less than 1.0 indicates universal risk level (risk typically experienced during hospitalization); a score of 1.0–2.0 indicates targeted risk (specific psychosocial difficulties that impact medical treatment); and a score higher than 2.0 indicates clinically significant risk. Demographic and clinical information was abstracted from each child’s medical record. A correlation matrix using nonparametric statistics was created between abstracted data and the DT and PAT scores.
Forty primary caregivers were enrolled (of 49 eligible), with the patient age ranging from newborn to 17 years (mean 7.7 years). Twenty-five (63%) of the children were male, and 24 (60%) were white, non-Hispanic. Mean and median DT scores were 7.2 (SD 2.6) and 7, respectively. However, 12 (30%) rated their distress 10/10, and 85% rated distress 5 or greater. PAT scores ranged from 0.0 to 2.36 with mean and median scores of 0.89 (SD 0.50) and 0.86, respectively. PAT results for 16 (40%) families were in the targeted or clinical range, indicating psychosocial factors that have the potential to interfere with medical treatment. No clinical or demographic variable correlated significantly with the DT or PAT score.
Families of children with newly diagnosed brain tumors experience high levels of distress and psychosocial risk. This work will serve as the foundation for efforts to standardize psychosocial evaluation for newly diagnosed pediatric neurosurgical patients, and to create protocols that organize existing hospital-based psychosocial support services. These efforts have the potential to improve patient and family satisfaction as well as treatment outcomes.