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Brandon G. Rocque, Alexandra Cutillo, Kathrin Zimmerman, Anastasia Arynchyna, Susan Davies, Wendy Landier and Avi Madan-Swain

OBJECTIVE

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.

METHODS

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.

RESULTS

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.

CONCLUSIONS

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.

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Alexandra Cutillo, Kathrin Zimmerman, Susan Davies, Avi Madan-Swain, Wendy Landier, Anastasia Arynchyna and Brandon G. Rocque

OBJECTIVE

Because caregivers are a crucial part of a child’s medical care, it is important to understand how to best communicate with them during hospitalization. Qualitative research can elucidate the best strategies for effective parent–provider communication. This study aims to reveal communication styles of neurosurgery team members, and to identify areas for improvement in the future.

METHODS

Caregivers of children with a newly diagnosed brain tumor requiring neurosurgery were enrolled during their child’s hospitalization. During routine follow-up clinic visits within 3 months after diagnosis and tumor resection, caregivers participated in a semistructured interview, which assessed the quality of communication with the neurosurgery and oncology teams during hospitalization. Interviews were audio-recorded, transcribed, and coded for common themes until thematic saturation was reached.

RESULTS

During caregiver interviews (N = 22), several domains were discussed including communicating the diagnosis to the patient and siblings, to the rest of the family/support network, and with the neurosurgery team. Regarding parent–neurosurgeon communication, 82% of caregivers identified at least one positive aspect and 55% identified at least one negative aspect of communication. Caregivers who provided positive feedback appreciated that their neurosurgeon was thorough (73%), direct (27%), or compassionate (14%). They also valued when providers would speak “on my level” (18%) and would speak directly to the patient (27%). In terms of negative feedback, caregivers identified miscommunications (32%), discussing the diagnosis in front of the child before feeling prepared to do so (14%), and a lack of clarity about expectations, medications, or treatment (32%).

CONCLUSIONS

These data provide specific ways in which neurosurgery providers have communicated effectively with caregivers and identify areas for improvement. Results have been used to develop a navigator-led intervention geared toward improving parent–provider communication during hospitalization for resection of a brain tumor.

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Alexandra Cutillo, Kathrin Zimmerman, Susan Davies, Avi Madan-Swain, Wendy Landier, Anastasia Arynchyna and Brandon G. Rocque

OBJECTIVE

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.

METHODS

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.

RESULTS

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.

CONCLUSIONS

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.