A nurse-led intervention for carers of people with high grade glioma: a case series of carers reporting high distress

Abstract Background Carers play an important role in supporting patients diagnosed with High Grade Glioma (HGG). However, this experience is frequently distressing and many carers require support. Objective: to describe unmet needs of highly distressed carers of people with HGG) and recommendations and referrals made by a nurse to support them within the Care-IS trial. Methods Descriptive case series. Carers of people with HGG in the Care-IS trial reporting: severe anxiety and/or depression at baseline and/or 4 months and high distress at baseline (during chemoradiotherapy) and at 4 months, were included. Carers completed the Partner and Caregiver Supportive Care Needs Scale and Brain Tumour Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, 12 months. Monthly nurse telephone assessments documented carers’ needs and recommendations and referrals made. Data are reported descriptively. Results Four highly distressed carers were identified (N=98). Each reported a moderate-high need at ≥1 timepoint for: financial support and/or travel insurance; making life decisions in uncertainty; information about cancer prognosis/likely outcome; and coping with unexpected treatment outcomes. Specific brain tumour unmet needs were: adjusting to changes in personality, mental and thinking abilities; and accessing government assistance. Nurses provided information about treatment, side effects and practical support. Recommendations for clinical care and referrals to community-based services, and medical specialists were offered. Conclusion Highly distressed carers have diverse support needs in many domains which can change over time. Nurses were critical in identifying carers’ needs, providing support, and making referrals. Carers’ distress and needs require ongoing screening and management.