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Bereaved caregivers of patients with high-grade glioma: a systematic review
  1. Karin Piil1,2,3,
  2. Sara Nordentoft2,3,4,
  3. Anders Larsen2,3 and
  4. Mary Jarden2,5,6
  1. 1 Department of Oncology, Copenhagen University Hospital, Copenhagen, Denmark
  2. 2 Rigshospitalet, Copenhagen, Denmark
  3. 3 University Hospitals Center for Health Research (UCSF & CIRE), Copenhagen University Hospital, Copenhagen, Denmark
  4. 4 Department of Neurosurgery, Copenhagen University Hospital, Copenhagen, Denmark
  5. 5 Department of Public Health, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark
  6. 6 Department of Hematology, Copenhagen University Hospital, Copenhagen, Denmark
  1. Correspondence to Karin Piil, Department of Oncology, Copenhagen University Hospital, Copenhagen 2100, Denmark; Karin.Piil{at}


Objective Caregivers to patients with primary malignant brain tumours neglect their own physical and emotional needs during the disease trajectory. The aim of the systematic review was to explore how informal caregivers of patients with primary malignant brain tumour (high-grade glioma (HGG)) experience and manage their life situation after the death of the patient.

Methods A systematic literature search was carried out in December 2016 and revised in September 2017. The following six databases were searched: PubMed, Cumulative Index of Nursing and Allied Health Literature, Excerpta Medica database, Scopus, PsycINFO and The Social Sciences Citation Index. Studies eligible for inclusion met the following criteria: (1) included bereaved caregivers to patients diagnosed with HGG ≥18 years, (2) described the caregiver’s perspective at post bereavement (3) had been peer-reviewed. The papers included were assessed for methodological quality using the Critical Appraisal Skills Programme.

Results Four qualitative articles, published from 2004 to 2015, met the eligibility criteria. Bereaved informal caregivers expressed profound grief and had unmet needs and questions related to the disease and their role as caregiver. Moreover, they experienced depressive symptoms and fatigue, resulting in a reduced work capability and social network.

Conclusions We conclude that bereaved informal caregivers experience psychosocial consequences and emotional reactions after bereavement, resulting in feelings of isolation and loneliness. This review identified limited evidence on how the bereaved caregivers prefer to be supported, and further study is warranted. We suggest incorporating systematic information on bereavement in clinical practice and a cooperation across sectors.

  • brain
  • bereavement
  • caregiver
  • bereaved
  • end of life care
  • primary malignant brain tumour

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  • Contributors KP and SN contributed to the design and drafting of the manuscript. AL conducted the literature search together with KP and SN. SN, AL and MJ contributed to the conception and design and provided substantial scientific contribution and critical revision of important intellectual content. All authors have reviewed the manuscript critically and approved the final manuscript.

  • Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Ethics approval This research did not involve human participants. Hence ethical approval was not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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