“Caregrieving” in palliative care: Opportunities to improve bereavement services

She, Wan Jou; Prigerson, Holly G.

doi:10.1177/0269216318780587

Cited by 7 publications

(6 citation statements)

References 13 publications

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“…Yet, none of the interviewees were referred to or received structural bereavement care services from a healthcare professional, which is not exclusive to bereaved caregivers from patients with PD. Notwithstanding that bereavement support is an integral part of PC, it needs improvement in general [39][40][41][42][43][44]. Several spouses mentioned issues related to their caregiver's senses of self and identity.…”

Section: Discussionmentioning

confidence: 99%

“How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

Lennaerts‐Kats

Ebenau

Steppe

et al. 2020

JPD

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Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

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Section: Discussionmentioning

confidence: 99%

“How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

Lennaerts‐Kats

Ebenau

Steppe

et al. 2020

JPD

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“…Adoption of needs assessment as well as structured follow-up care has been notoriously low despite an agreed-upon mandate to engage with and care for family members at the end-of-life and into bereavement. [26][27][28] As such, health professionals, in particular nurses and physicians, should be enabled to offer evidence-based bereavement care. 9,28,29 About half of participants stated that they lack the time and organizational support to provide such services.…”

Section: Discussionmentioning

confidence: 99%

Hospital-based bereavement care provision: A cross-sectional survey with health professionals

et al. 2019

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Background: An in-hospital death is a profound experience for those left behind and has been associated with family members’ psychological morbidity. Supporting bereaved family members is an essential part of end-of-life care and includes attentive presence, information-giving, and emotional and practical support. The actual adoption of hospital-based bereavement care, however, remains little understood. Aim: To investigate hospital-based bereavement care provision and associated barriers. Design: Cross-sectional survey using an online questionnaire. Setting/participants: Health professionals ( n = 196) from two University-affiliated acute and psychiatric hospitals in Switzerland. Results: The most frequent bereavement services (⩾40%) were viewing the deceased, giving information on available support, and making referrals; the most often named barriers were lack of time and organizational support. Acute care health professionals faced statistically significant more structural barriers (55.1% vs 21.4% lack of time, 47.8% vs 25.9% lack of organizational support) and felt insufficiently trained (38.4% vs 20.7%) compared to mental health professionals ( p ⩽ 0.05). Nurses provided more immediate services compared to physicians, such as viewing the deceased (71.3% vs 49.0%) and sending sympathy cards (37.4% vs 16.3%) ( p ⩽ 0.01). In contrast, physicians screened more often for complex bereavement disorders (10.2% vs 2.6%) and appraised bereavement care as beyond their role (26.5% vs 7.8%) ( p ⩽ 0.05). Conclusion: The study indicates that many barriers to bereavement care exist in hospitals. More research is required to better understand enabling and limiting factors to bereavement care provision. A guideline-driven approach to hospital-based bereavement care that defines best practice and required organizational support seems necessary to ensure needs-based bereavement care.

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“…Although a common, nearly universal experience among advanced cancer patients and their family caregivers, grief prior to a loved one’s death remains an understudied topic. Grief in this context has been described as the anticipation of one’s own or a loved one’s future death, coupled with the navigation of prior and ongoing losses as a result of a terminal illness [ 1 , 2 , 3 ]. It is often unrecognized or mistaken for mental disorders such as anxiety, posttraumatic stress, or depression [ 1 , 2 , 4 , 5 , 6 ].…”

Section: Introductionmentioning

confidence: 99%

The Role of Advance Care Planning in Cancer Patient and Caregiver Grief Resolution: Helpful or Harmful?

Falzarano

Prigerson

Maciejewski

2021

Cancers

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Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.

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“Caregrieving” in palliative care: Opportunities to improve bereavement services

Cited by 7 publications

References 13 publications

“How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

“How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

Hospital-based bereavement care provision: A cross-sectional survey with health professionals

The Role of Advance Care Planning in Cancer Patient and Caregiver Grief Resolution: Helpful or Harmful?

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