Burden of caregiving and its repercussions on caregivers of end-of-life patients: a systematic review of the literature

Mayra Delalibera, Joana Presa, António Barbosa, Isabel Leal

Caring for a family member with an advanced and/or terminal illness can be a great emotional, physical and financial burden that has an impact on the quality of life of the caregivers. The scope of this study was to conduct a systematic review of the literature on the burden of caregiving, related factors and the consequences for family caregivers of advanced stage cancer patients or patients in end-of-life or palliative care. A search for scientific papers published in the EBSCO, Web of Knowledge and BIREME databases was conducted since records on this topic began in the databases through March 2014. Of the 582 articles found, only 27 were selected. The majority of the articles found that family caregivers were overburdened. Some studies found that the care-giving burden was associated with characteristics of the patients and their illnesses while, in other studies, it was associated with poor health of the caregiver, greater psychopathological symptoms (anxiety, depression, emotional distress) and with the development of complications in the grieving process. However, hope, social support, the ability of the caregiver to attribute meaning to the experience of caring and feeling comfortable with the tasks of caring were associated with lower levels of burden.