• Karin Piil and Mary Jarden.
• Questions or comments about this article may be directed to Karin Piil, PhD MHScN RN, at Karin.piil@regionh.dk. Department of Oncology, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark. Mary Jarden, PhD MScN, is Associate Professor, Copenhagen University Hospital, Rigshospitalet, Department of Hematology, University Hospitals Center for Health Research and Center for Integrated Rehabilitation of Cancer Patients, and Faculty of Health and Medical Sciences, Department of Public Health, University of Copenhagen, Copenhagen, Denmark.
• J Neurosci Nurs. 2018 Apr 1; 50 (2): 94-99.

PurposeThe disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have explored the needs and experiences of bereaved caregivers, and there is lack of evidence-based practice. This study explores the perspectives of newly bereaved caregivers to patients with high-grade glioma on end-of-life caregiving and bereavement.MethodsThis qualitative exploratory study was composed of individual semistructured telephone interviews with bereaved caregivers (n = 8) to patients with high-grade glioma who deceased during participation in the mixed-methods Neuro-oncological Rehabilitation study. A thematic analysis was conducted following Braun and Clarke's guidelines.ResultsFour main themes were identified concerning the bereavement experience: (1) late-stage caregiving is comprehensive and taxing, (2) releasing the responsibility of the primary caregiving role, (3) feelings of grief and relief, and (4) suggestions for clinical practice.ConclusionLate-stage caregiving is a difficult and challenging experience at the end of an already burdening treatment trajectory. Caregivers prefer to actively share responsibility and practical tasks with professionals, family, and friends. The bereaved caregivers' key areas of concern indicate the need for additional research in advance care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations.

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