Characterizing Distress and Identifying Modifiable Intervention Targets for Family Caregivers of Patients with Malignant Gliomas

Study protocol for NeuroCARE: a randomised controlled trial of a psychological intervention for caregivers of patients with primary malignant brain tumours

“…The NeuroCARE intervention is based primarily in cognitive behavioural theory and incorporates elements of acceptance-based and mindfulness-based strategies for managing anxiety, mitigating caregiving-specific distress and burden, and improving coping and QOL in the context of a patient’s incurable brain cancer. More details about the intervention development and session breakdown are outlined in a prior publication 7. Specific intervention components include coping effectiveness training, cognitive restructuring, mindfulness and relaxation techniques, assertiveness training, communication skills around end of life and other difficult topics, and strategies to maximise social support and self-care.…”

“…The NeuroCARE intervention was developed with stakeholder input from caregivers, patients and experts in neuro-oncology and behavioural science. First, we conducted qualitative interviews with 21 caregivers to better understand the drivers of caregiver distress and to inquire about their preferences for a psychological intervention 7. We presented the qualitative study findings and the planned RCT protocol to patients and family members in the MGH Cancer Outcomes Research and Education Program’s Patient and Family Advisory Council.…”

“…Caregivers of patients with primary malignant brain tumours face significant challenges associated with caring for someone with an incurable cancer affecting their nervous system 1 2. While these caregivers experience the tremendous physical, financial and emotional toll common to caregivers of patients with cancer not involving the nervous system, they must also cope with progressive decline in the patient’s cognition, personality, behaviour and neurological functioning 3–9. As a result, these caregivers experience high rates of psychological distress (ie, anxiety and depressive symptoms) and significant caregiver burden 10–12.…”

“…Given evidence that traditional cognitive–behavioural therapy (CBT) may have limited efficacy for cancer caregivers,20 we supplemented CBT techniques with acceptance-based and mindfulness-based strategies. Next, to address the unique challenges of caregivers of patients with primary malignant brain tumours, we iteratively modified and refined the NeuroCARE intervention based on findings from our qualitative study with 21 caregivers of patients with malignant gliomas 7. Finally, we established the feasibility and acceptability of the intervention in an open pilot study and made final refinements based on caregivers’ exit interviews 21…”

Closing the Caregiving Gap: Considerations for Pancreatic and Periampullary Cancer Caregivers

“…5 Some even reported symptoms that were greater than that of the patients they were caring for, 6,7 a pattern of distress that has been observed in caregivers of patients with gastrointestinal cancers 10 and primary brain tumors. 11-13 Despite caregivers' high need for psychological support, the results of Fong et al 8 mirror a general trend in cancer caregiving, which finds a significant gap between caregivers' need/interest in supportive care and their actual use of these services—likely because of the myriad systemic hurdles. 14-16 It is clear that this is a caregiver population with many supportive care needs and high emotional burden.…”