Palliative care clients' and caregivers' notion of fear and their strategies for overcoming it

Penman, Joy; Ellis, Bronwyn

doi:10.1017/s1478951514000571

Cited by 10 publications

(7 citation statements)

References 38 publications

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“…We know that the burden that patients in palliative care feel that they impose on their family caregivers and the duty that family caregivers feel towards the person they care for can make both prioritise each other’s needs over their own. 18 Indeed, studies in palliative care have shown how remaining positive for one another can help both patients and family caregivers adjust to advanced illness 19 and how remaining collectively steadfast in the face of illness is a dimension to caring. 20 However, reciprocal dimensions to support provision between patients and family caregivers are not routinely mapped out.…”

Section: Introductionmentioning

confidence: 99%

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

et al. 2021

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Background: Patients in palliative care are usually conceptualised as recipients of support from family caregivers. Family caregivers in palliative care are typically defined as providers of support to patients. Little is known about reciprocal dimensions of support provision between patients and family caregivers in palliative care. Aim: To identify processes of mutual support between patients and family caregivers in palliative care and factors that contribute to or obstruct mutual support between patients and family caregivers in palliative care. Design: Systematic review and narrative synthesis of original peer-reviewed research published between January 2000 and March 2020. Data sources: Medline, CINAHL, Embase, AMED, PsycINFO and PsycARTICLES. Results: After full-text screening, 10 studies were included. We identified that patients and family caregivers in palliative care can support one another by mutually acknowledging the challenges they face, by remaining positive for one another and by jointly adapting to their changing roles. However, patients and family caregivers may not routinely communicate their distress to each other or reciprocate in distress disclosure. A lack of mutual disclosure pertaining to distress can result in conflict between patients and family caregivers. Conclusions: Few studies have focused in whole or in part, on reciprocal dimensions of support provision between patients with advancing non-curable conditions, and their family caregivers in palliative care. Further research is required to identify key domains of mutual support between patients and family caregivers in palliative care.

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Section: Introductionmentioning

confidence: 99%

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

et al. 2021

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“…My spirituality makes me feel powerful as it gives me strength and courage to persevere in life. (Penman, 2012; Penman & Ellis, 2015). (Barbara)For when I am down and out, I do reiki.…”

Section: Resultsmentioning

confidence: 99%

“…Despite these improvements, however, attention is still needed to address the psychosocial, emotional, and spiritual needs of clients and caregivers (Penman & Ellis, 2015;Steinhauser et al, 2008). These clients and caregivers (referring to informal carers, who can be spouses, family members, and/or close friends) do experience sadness, a normal part of the dying experience, but it has been estimated that 25% of oncology patients will experience severe depressive symptoms, especially for those with advanced disease and greater pain and disability (Chochinov, 2006; K. G. Wilson, Lander, & Chochinov, 2000).…”

Section: Introductionmentioning

confidence: 99%

Finding Paradise Within: How Spirituality Protects Palliative Care Clients and Caregivers From Depression

Penman

2017

J Holist Nurs

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The aims of this article are to explore the experience of depression among palliative care clients and caregivers, describe the strategies they use in coping with depression, and clarify the role of spirituality in preventing and/or overcoming depression. This article discusses an aspect of the findings of a larger doctoral study that explored the nature of spirituality and spiritual engagement from the viewpoint of individuals with life-limiting conditions and their caregivers. van Manen's phenomenology was used in the study. The data generated from the doctoral study were subjected to secondary analysis to uncover the experience of depression. The methodology underpinning the secondary analysis was phenomenology also by van Manen. Fourteen clients and caregivers from across regional and rural South Australia informed the study. Data collection involved in-depth nonstructured home-based interviews that were audiotaped and transcribed verbatim. The findings highlighted relate to participants succumbing to depression, but having spiritual beliefs and practices helped them cope. One of the most insightful understanding was the role spirituality played in protecting individuals from depression, encapsulated in the theme "finding paradise within." Spirituality, understood from a religious or secular perspective, must be embedded in palliative care as it assisted in preventing and overcoming depression.

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“…Researchers found that religious support was one of the most common strategies used by parents when dealing with their fears and anxieties. 22,23 Parents could instill hope through a personal relationship with a higher power during times of crises. 24 Nonreligious theistic parents acquire psychological and spiritual comfort through religious explanations of death and religious rituals when faced with death and grieving.…”

Section: What This Study Addsmentioning

confidence: 99%

Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study

et al. 2020

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Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children’s Hospital. Participants in this study included 16 bereaved parents. Results: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents’ spiritual needs. Parents’ spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism. Conclusion: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient’s personal belief in death should be assessed before discussing death with them.

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Palliative care clients' and caregivers' notion of fear and their strategies for overcoming it

Cited by 10 publications

References 38 publications

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

Finding Paradise Within: How Spirituality Protects Palliative Care Clients and Caregivers From Depression

Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study

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