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. 2022 Apr;37(2):242-258.
doi: 10.1177/08258597211052269. Epub 2021 Dec 3.

The Grief and Bereavement Experiences of Informal Caregivers: A Scoping Review of the North American Literature

Neerjah Skantharajah  1 , Carol Barrie  2   3 , Sharon Baxter  3   4 , M Carolina Borja  1 , Anica Butters  1 , Deborah Dudgeon  3   5   6 , Ayeshah Haque  1 , Iqra Mahmood  1 , Mehrnoush Mirhosseini  3   7   8 , Raza M Mirza  1   9 , Ankita Ankita  1 , Carly Thrower  1 , Christina Vadeboncoeur  3   10   11 , Andrew Wan  1 , Christopher A Klinger  1   3   9   12   13
Affiliations

The Grief and Bereavement Experiences of Informal Caregivers: A Scoping Review of the North American Literature

Neerjah Skantharajah et al. J Palliat Care. 2022 Apr.

Abstract

Background: Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers' experiences of grief and bereavement. Objective: To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. Methods: Using Arksey and O'Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. Results: 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. Discussion: Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. Conclusions: Understanding the nuances of informal caregivers' experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.

Keywords: anticipatory grief; bereavement; complicated grief; hospice and palliative care; informal caregivers; older adults; scoping review.

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Conflict of interest statement

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Preferred reporting items for systematic reviews and meta-analyses flow chart.
Figure 2.
Figure 2.
Scoping review themes and subthemes.
See this image and copyright information in PMC

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