Instruments to assess the burden of care for family caregivers of adult palliative care patients

Abstract

A primary caregiver shares the illness experience of the patient and undertakes vital care work, alongside managing the patient's emotions, and is actively involved in care process without being paid. When faced with the palliative care patient's needs, caregivers are affected on multiple levels (physical, psychological and socio-economic), thereby experiencing a moderate or severe burden of care. To identify assessment instruments for the burden of care for family caregivers that are suitable to be used in clinical practice. A narrative review was conducted using an electronic search in Pubmed, PsychINFO, CINAHL of articles published in English between 2009-2019, using the search terms: 'caregiver/family, caregiver/carer and burden and palliative care/hospice/end of life'. An assessment grid was developed to appraise the clinical use of identified instruments. Of the 568 articles identified, 40 quantitative studies were selected using 31 instruments to measure the caregiver burden of cancer, noncancer and terminally ill patients. Most instruments 23 (74.11%) evaluate the psycho-emotional and, 22 (70.96%) the social domain, 12 instruments (38.7%) focused on the physical domain, three (9.67%) on the spiritual field and six instruments (19.35%) on economic aspects. For the multidimensional instruments, the assessment grid scored highest for the Burden Scale for Family Caregiver (BSFC). The BSFC is the tool that seems to meet the most requirements, being potentially the most useful tool in clinical practice.