Dementia Caregiver Grief and Bereavement

Alzheimer’s disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings | Western Journal of Nursing Research

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The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer’s disease and related dementias caregivers. This review identified five critical gaps in the existing evidence:

(a) a lack of ethnic and gender diversity among caregivers studied,

(b) limited use of valid instruments to study dementia caregiver grief and bereavement,

(c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care,

(d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement

(e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.

Full reference: Arruda, E.H. et al. (2017) Dementia Caregiver Grief and Bereavement: An Integrative Review. Western Journal of Nursing Research. Vol.  39 (no. 6) pp. 825-851

Family members of deceased palliative care patients receiving bereavement anniversary cards

Goebel, S. et al. BMC Palliative Care | Published online: 19 April 2017

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Red Stamp – Flickr // CC BY-SA 2.0

Background: Bereavement support is part of palliative care. Sending out bereavement anniversary cards is one intervention of follow-up support for the bereaved. This study evaluated the suitability of bereavement anniversary cards as an appropriate method in bereavement care.

Conclusions: The participants’ reactions and opinions about receiving the anniversary card were decidedly positive and indicate the continuation of this practice. Those few less pleased reactions may be related to timing and the first anniversary of the patients’ death and therefore an expression of grief rather than a dissatisfaction with bereavement anniversary cards, as such.

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Factors influencing the uptake of neonatal bereavement support services

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Background
Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors.

Method
The medical and bereavement records of all neonatal deaths were studied from January 2006 to December 2011. Data collected included parent and baby characteristics, mode of death, consent for autopsy and bereavement follow-up. The categorical data were compared by chi-square or Fisher’s exact test and continuous data by Wilcoxon signed-rank test; a multivariable regression analysis was performed using STATA 12.0.

Results
The neonatal deaths of 297 babies (182 in NNU1 and 115 in NNU2) with full datasets were analysed. Baby characteristics were similar between units except for lower median gestational age in NNU1 (p = 0.03). Significantly more NNU1 parents were non-Caucasian (p < 0.01), from lower socio-economic status (p = 0.01) and had previous stillbirth/miscarriage (p = 0.03). More babies had care withdrawn in NNU2 (p < 0.01). A significantly higher proportion of parents from NNU1 (61 %) attended bereavement follow-up compared to NNU2 (34 %; p < 0.01).

On multivariable analysis, significantly more parents who were married or co-habiting (p = 0.02) and consented for an autopsy (p = 0.01) attended bereavement services.

Conclusion
Uptake of bereavement services varied between the two NNUs, which could be due to differences in the ethnic and socio-economic mix of the population. Significantly more parents who were married or co-habiting, or consented for autopsy, attended bereavement follow up services.

Full reference: Banerjee, J et. al.  Factors influencing the uptake of neonatal bereavement support services – Findings from two tertiary neonatal centres in the UK | BMC Palliative Care | 29 June 2016

The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner

Bristowe, K. et al. Palliative Medicine. Published online: March 4 2016.

Background: Socially excluded populations have poorer access to care; however, little attention has been paid to lesbian, gay, bisexual and/or trans* people. Lesbian, gay, bisexual and/or trans* people are at increased risk of certain life-limiting illnesses and may not receive the care and support they need at the end of life and into bereavement.

Aim: To identify and appraise the evidence of the bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner and develop an explanatory model of lesbian, gay, bisexual and/or trans* partner bereavement.

Design: Systematic review (in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines) and thematic synthesis with assessment of reporting and rigour. Quantitative or qualitative articles reporting bereavement experiences of lesbian, gay, bisexual and/or trans* partners were included, excluding articles reporting multiple losses in the context of HIV or AIDS.

Data sources: PsycINFO, MEDLINE, Web of Science, Scopus, Cochrane Library. Inclusion dates: database inception – 30 April 2015.

Results: A total of 23 articles reporting on 13 studies were identified. Studies described universal experiences of the pain of losing a partner; however, additional barriers and stressors were reported for lesbian, gay, bisexual and/or trans* people, including homophobia, failure to acknowledge the relationship, additional legal and financial issues and the ‘shadow’ of HIV or AIDS. A novel model was developed to explain how the experience for lesbian, gay, bisexual and/or trans* people is shaped by whether the relationship was disclosed and acknowledged in life and into bereavement and how this impacts upon needs and access to care.

Conclusion: There is a need for healthcare providers to avoid hetero-normative assumptions; be mindful of additional stressors in bereavement for lesbian, gay, bisexual and/or trans* people; and consider additional sources of support to deliver individualised holistic care.

Read the abstract here

Faith at the end of life: public health approach resource for professionals

Public Health England (PHE)

This resource aims to help frontline professionals and providers working in community settings and commissioners maintain a holistic approach to the people dying, caring or bereaved. It provides information to help ensure that commissioning and delivery of services and practice takes account of spiritual needs of the six largest faith groups in England and remains appropriate to the community setting in which they work.

Assisting the bereaved: A systematic review of the evidence for grief counselling

Waller, A. et al. Palliat Med February 2016 vol. 30 no. 2 132-148

Background: Supporting people after bereavement is a priority area for many health services. Investment in bereavement care must be supported by a rigorous evidence-base.

Aim: To examine the (1) relative proportion of descriptive, measurement and intervention research in grief counselling and (2) quality and effectiveness of intervention studies.

Design: Systematic review of studies published in the area of grief counselling.

Data sources: MEDLINE, Embase, Cochrane Library and PsycINFO databases were searched for studies published between 2000 and 2013. Eligible papers were categorised into descriptive, measurement, review, commentaries and intervention studies. Intervention studies were assessed against the Cochrane Effective Practice and Organisation of Care methodological criteria, and papers meeting criteria were assessed for quality. The impact of interventions on grief, psychological morbidity and quality of life was examined.

Results: A total of 126 data-based papers, including 47 descriptive, 3 measurement and 76 grief counselling intervention studies were included. Only 59% (n = 45) of intervention studies met Effective Practice and Organisation of Care design criteria. Overall, study quality was poor, with the majority of interventions showing a risk of bias in several key areas. The three studies that met all criteria showed mixed effectiveness.

Conclusion: Grief counselling interventions require a strong rationale for design, and a systematic approach to development and evaluation. Descriptive research efforts should inform this process, focusing on homogeneity in sample, identification of risk factors for complicated grief and the impact of extraneous factors on intervention effects. Interventions should include comparisons to usual care, as well as replication to confirm positive findings.

Read the abstract here

Dying at home more peaceful, but requires discussion

For terminally ill cancer patients and their loved ones, dying at home can be more peaceful with less grief among family members. But the option requires talking about preferences, access to a comprehensive home care package, and time off from work for family caregivers, according to a study in BMC Medicine. Barbara Gomes, BSc, MSc, PhD, of the Cicely Saunders Institute at King’s College London, and colleagues questioned 352 bereaved family members of patients who died in the hospital or at home. Wherever they passed away, patients experienced about the same amount of pain.

Full reference:  Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study.  BMC Medicine 2015, 13:235.