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.
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