Analysis of caregiver burden in palliative care: An integrated review

Abstract

The inclusion of caregivers in a holistic care approach represents a basic principle in palliative care. However, many palliative care professionals have a lack of understanding of difficulties or unmet needs among caregivers. To enhance the quality of life of caregivers and the quality of care for patients, healthcare professionals should be better informed about the constructs of caregiver burden. The aim of this study is to synthesize the concept of caregiver burden in palliative care, providing implications for the caregivers and their support systems. This concept analysis study adopts the integrative review approach and the basic text analysis method (ie, word frequency). The PubMed, CINAHL, Embase, and PsycINFO databases are explored for eligible studies.From this literature search, 66 articles from 1998 to 2018 are located. After data collection is completed, the two authors independently evaluate the quality of studies published before 1 September 2018. The caregiver burden is then redefined with its attributes, antecedents, consequences, empirical referents, and facilitators. It is recommended that the multidimensional concept of caregiver burden in palliative care be measured by considering caregiver characteristics and the caregiving context. K E Y W O R D S caregiver burden, concept analysis, integrative review, palliative care, word frequency 1 | BACKGROUND Developments in medical technology and the management of illness have increased the prognosis of terminally ill patients. As a result, caregivers have experienced the increased burden of caring for family members for an extended period of time. 1 Due to the decreasing number of days in hospital stays and the lack of financial support for home care services in palliative care, family caregivers are regarded as hidden patients or second-order patients. 2 Previous studies have reported that family caregivers experience a considerable burden from caregiving, and they become severely depressed and socially isolated from their communities. 3-5 For example, Grunfeld et al 6 and Grant et al 7 identified caregiver burden as one of the factors that most influence anxiety and depression in caregivers and more caregivers suffer from higher levels of perceived burden at the patientsʼ end-of-life than at the start of the palliative care according to their longitudinal studies. This increasing caregiver burden in palliative care can be explained by patientsʼ declining health status, increasing demands for patientsʼ symptom management, and the need for decisions regarding terminal care (ie, enteral tube feeding, advance care planning, and do-not-resuscitate). Nevertheless, numerous family caregivers do not perceive their burden as problematic. De Korte-Verhoef et al, 8 found that even though 66% of family caregivers experienced a severe burden from caregiving, only 25% indicated that their burden had a negative impact on their daily lives. To improve family caregiversʼ quality of life and the quality of care the caregivers can deliver to their patients, the burd...

Perceptions and Attitudes towards the Concept and Approach of Palliative Care among Caregiver's of Patients on End-of-Life Care: A Cross-sectional Survey

“…This is especially relevant when relatives insist that it should not be disclosed or discussed with the patient, again this also fulfils the ethical principle of the patients right to know and patient autonomy. [18,19,32] Similarly, the majority of the respondents believed that patients should be encouraged to carry out routine activities and be facilitated to fulfill their wishes. This is in accordance with the palliative care approach that patients should be enabled to live normal lives and every effort should be made to fulfill their wishes to prevent helplessness and suffering.…”

“…[4,13,18] 12 This compounds the stress and burden of the family members caring for the terminally ill patient or informal caregiver/s, who may lack training, experience or preparation for this challenging and emotionally draining task To ensure meaningful and successful uptake, potential care giver's, whether family members or professional, need to have knowledge and understanding of the benefits of this approach in the care of their patient. [4,5,17,19,20,21] The objectives of this study , therefore, were to determine the perceptions, knowledge and attitudes of care giver's of patients who had been diagnosed with incurable conditions about the concept and principles of PC. The findings will help to inform interventions to enhance knowledge and address misperceptions as palliative care becomes more widely available in the country.…”

Intensity of Predeath Grief and Postdeath Grief of Family Caregivers in Palliative Care in Relation to Preparedness for Caregiving, Caregiver Burden, and Social Support

“…Family caregivers in a palliative care context face a demanding situation with physical and emotional strain and stress. 1,2 The caregiver burden is often extensive 1,3 with various health consequences [3][4][5][6][7] and decreased quality of life. 3 It is known that family caregivers who feel more prepared for the demands of the caregiver role tend to have more positive experiences of the caregiving situation.…”

“…1,2 The caregiver burden is often extensive 1,3 with various health consequences [3][4][5][6][7] and decreased quality of life. 3 It is known that family caregivers who feel more prepared for the demands of the caregiver role tend to have more positive experiences of the caregiving situation. [8][9][10] The caregiver burden can also be relieved through adequate social support, as it is found to be protective in stressful life events.…”

The Well-Being of Carers of Older Aboriginal People Living in the Kimberley Region of Remote Western Australia: Empowerment, Depression, and Carer Burden

“…Other conditions such as functional disability and mental illness are disproportionately higher in Aboriginal and Torres Strait Islander communities (Randall, Lujic, Havard, Eades, & Jorm, 2018;Vos et al, 2009). Carers of those with dementia, frailty, mental health disabilities, chronic conditions and those requiring palliative care, often experience high levels of carer burden and depression (Bom, Bakx, Schut, & van Doorslaer, 2018;Brodaty, Woodward, Boundy, Ames, & Balshaw, 2014;Choi & Seo, 2019;Lambert et al, 2017). However, there is limited data for Aboriginal and Torres Strait Islander peoples, particularly those living in remote and regional areas where factors such as overcrowded housing, poor health linkages, financial barriers and poor service access may contribute to carer burden (Broe & Jackson-Pulver, 2007;Carroll et al, 2010).…”