The Caregiver's Perspective on Existential and Spiritual Distress in Palliative Care

Boston, Patricia; Mount, Balfour M.

doi:10.1016/j.jpainsymman.2006.01.009

Cited by 75 publications

(116 citation statements)

References 18 publications

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“…Numerous studies have shown strong associations between patients' and caregivers' emotional status (41). Finally, spiritual/existential distress in patients is also associated with similar distress in caregivers (42).…”

Section: Patient Suffering As a Stressormentioning

confidence: 98%

Improving Well-Being in Caregivers of Terminally Ill Patients. Making the Case for Patient Suffering as a Focus for Intervention Research

Hebert

Arnold

Schulz

2007

Journal of Pain and Symptom Management

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Family caregivers are integral to the care of patients with physical or mental impairments. Unfortunately, providing this care is often detrimental to the caregivers' health. As a result, in the last decade, there has been a proliferation of interventions designed to improve caregivers' wellbeing. Interventions for caregivers of persons at end-of-life, however, are relatively few in number and are often underdeveloped. They also are typically designed to help reduce the work of caregiving or to help caregivers cope with the physical and emotional demands of providing care. While useful, these interventions generally ignore a primary stressor for family caregivers-a loved one's suffering. Patient suffering, whether physical, psychosocial, or spiritual, has a major impact on family caregivers. However, interventions that focus on the relief of patient suffering as a way to improve caregiver well-being have rarely been tested. It is our view that more research in this area could lead to new and more effective interventions for family caregivers of seriously or terminally ill patients. In support of our view, we will define suffering and review the relationships between patient suffering and caregiver well-being. We will then discuss a conceptual framework for intervention design. Finally, we conclude with a discussion of implications and future directions for intervention research.

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Section: Patient Suffering As a Stressormentioning

confidence: 98%

Improving Well-Being in Caregivers of Terminally Ill Patients. Making the Case for Patient Suffering as a Focus for Intervention Research

Hebert

Arnold

Schulz

2007

Journal of Pain and Symptom Management

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“…[6][7][8][9][10][11][12][13][14][15] To address these gaps in the literature, this study explored the impact of death and dying on the lives of key leaders and frontline professionals in palliative and hospice care -individuals who arguably provide society and health care practitioners with the most authoritative discourse on end of life and its effect on life in general. This study was part of a larger ethnographic inquiry on the spirituality of palliative and hospice care professionals in Canada.…”

mentioning

confidence: 99%

Impact of death and dying on the personal lives and practices of palliative and hospice care professionals

Sinclair¹

2010

Canadian Medical Association Journal

107

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A lthough preserving life is a central goal of medicine, in the end, death is an unavoidable outcome. Professionals in palliative and hospice care, working within the landscape of death and dying, are able to provide insight into death-related experiences and have the opportunity to incorporate these ex periences into their personal and professional lives. The ability for death to foster meaning in life has been attested to by wisdom traditions and palliative care professionals alike. The latter usually provide rich accounts of the struggles of dying individuals, and in some instances, accounts of individuals who dis covered meaning and purpose within this landscape.Although an expansive body of literature has evolved exploring the spiritual and existential impact of death and dying, these studies focused predominately on the impact on patients and occasionally on family members.1-5 A small number of studies discussed the residual impact of end-of-life care within a localized group of health care providers; however, there is limited cross-sectional research explicitly investigating the long-term effect of death and dying on the personal and professional lives of individuals who are exposed to death and dying on a frequent basis. [6][7][8][9][10][11][12][13][14][15] To address these gaps in the literature, this study explored the impact of death and dying on the lives of key leaders and frontline professionals in palliative and hospice care -individuals who arguably provide society and health care practitioners with the most authoritative discourse on end of life and its effect on life in general. This study was part of a larger ethnographic inquiry on the spirituality of palliative and hospice care professionals in Canada. Methods Study populationData were collected in two phases. With the use of purposive sampling, six key leaders in palliative and hospice care at five centres across Canada were identified for the first phase of the study. The leaders were identified based on their Background: Working within the landscape of death and dying, professionals in pal liative and hospice care provide insight into the nature of mortality that may be of benefit to individuals facing the end of life. Much less is known about how these professionals incorporate these experiences into their personal lives and clinical practices.

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“…In fact, caring for dying patients has been linked to stress, burnout and professional grief [33] [42]. Caring for dying people or when coming in contact with loved ones of the deceased may actually have such a strong emotional and existential impact that it might force health care professionals to examine their own anxieties and concerns about death [1,5].…”

Section: Discussionmentioning

confidence: 99%

“…For example, Redinbaugh et al found that 36% of hospitals doctors coped with the loss of a patient by trying to "see the death in a different light to make it seem more positive" [43]. Meaning, a sense of purpose or comfort can be derived in different ways, for example from recognizing that one's work makes a difference in patients' lives [5]. There are actually research groups that have drawn on interventions to enhance staff members' sense of purpose and meaning as a way of addressing the stressors and burdens of oncology care [15].…”

Section: Discussionmentioning

confidence: 99%

“…questions raised by family members of dying patients [39,46]. In addition, there seems to be both a need among bereaved to talk with staff members about existential issues [35], and a relationship between stress among health care staff caring for dying patients and encounters with such issues [5,12]. Moreover, resilience and well-being in palliative care staff seem to be influenced by their awareness of their own spirituality and existential needs, and such an awareness also helps the nurses to address the needs of their patients and their families [1].…”

Section: How To Provide Support For Staff Members Performing Bereavemmentioning

confidence: 99%

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“A rewarding conclusion of the relationship”: staff members’ perspectives on providing bereavement follow-up

Milberg

Appelquist

Hagelin³

et al. 2009

Support Care Cancer

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rewarding conclusion of the relationship": staff members' perspectives on providing bereavement follow-up, 2011, Supportive Care in Cancer, (19) None of the respondents stated that bereavement follow-up was "most often difficult", 23%, "most often rather difficult", 52.5% "most often rather easy" and 12.5% "most often easy". Apart from a tendency for age to be linked to perceived difficulty, there were no apparent patterns. Bereavement follow-up was a positive opportunity to support the family member's coping with their bereavement and to get feedback on the palliative care provided.Critical aspects concerned the question of whose needs actually were being met at bereavement follow-up, i.e. the staff members' needs for getting feedback on the care provided vs. the risk of burdening the family members' by reminding them of the deceased's dying trajectory. Aspects that negatively influenced the staff members' experiences were complex and related e.g. to the family member's dissatisfaction with the care provided, to the staff member's perceived lack of competence and to the staff member's relationship to the family member. Conclusions: Bereavement follow-up was perceived as a rewarding conclusion to the relationship with the family member. The findings suggest that meaningbased coping might be an appropriate framework when understanding staff members' experiences with providing bereavement follow-up.

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The Caregiver's Perspective on Existential and Spiritual Distress in Palliative Care

Cited by 75 publications

References 18 publications

Improving Well-Being in Caregivers of Terminally Ill Patients. Making the Case for Patient Suffering as a Focus for Intervention Research

Improving Well-Being in Caregivers of Terminally Ill Patients. Making the Case for Patient Suffering as a Focus for Intervention Research

Impact of death and dying on the personal lives and practices of palliative and hospice care professionals

“A rewarding conclusion of the relationship”: staff members’ perspectives on providing bereavement follow-up

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