What makes grief difficult? Perspectives from bereaved family caregivers and healthcare providers of advanced cancer patients

AbstractObjective:Family members who take on the role of caregiving for someone who is dying begin bereavement after being emotionally and physically taxed by the caregiving experience. The course of bereavement is influenced by a number of factors, including health problems, financial concerns, social support, and family relationships. This paper reports on findings from a secondary analysis of qualitative data from a study examining family caregiver coping in end-of-life cancer care, to describe, from the perspectives of bereaved family caregivers, their perspectives on what made their grief difficult.Method:Qualitative data from three focus groups with family caregivers (n = 19) and two focus groups with health professionals (n = 14) were subjected to interpretive thematic analysis.Results:Our finding suggest three broad areas that make family caregivers' grief difficult: (1) dealing with occurrences in everyday life; (2) dealing with challenges specific to the caregiving situation; and (3) dealing with the healthcare system.Significance of results:The findings provide an important beginning point in understanding the types of issues that seem to make grief difficult for family caregivers of cancer patients at the end of life and can help professional groups to understand what is needed by family caregivers in terms of support and delivery of services.

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Impact of Culture and Religion on End-of-Life Decisions Among Advanced Cancer Patients in Developing Countries

Innovation in Aging ◽

10.1093/geroni/igaa057.787 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 244-244

Author(s):

Justina Yevu Johnson ◽

Lori Popejoy

Keyword(s):

Decision Making ◽

Developing Countries ◽

End Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Advanced Cancer ◽

Healthcare Providers ◽

Advanced Cancer Patients ◽

End Of Life Decisions ◽

Primary Family

Abstract Palliative care and end of life decisions are important components of quality care at the end-of-life. Individual’s perception of cancer diagnosis is affected by their customs and traditions, religious orientations and stigma. Culture and religion as a social determinant of health affects people’s interpretation of health and illness and is a major factor in deciding the type of care at end of life and death. The purpose of the review was to identify factors related to culture and/or religion that impact decision making at end of life among advanced cancer patients their primary family caregivers and healthcare providers. An extensive literature search was conducted in Psych Info, PubMed, Philosophy Index, Atlas Religion, and Academic Search Premier databases for primary studies on the topic. Primary studies conducted only in developing countries and among healthcare providers, advanced cancer patients and their primary family caregivers were included. Five studies met the inclusion criteria: two primary studies, one methodological paper, and two on perspectives. The studies reported economic status of the patient, family, culture, and religious beliefs as factors that affected decision making at the end of life. Improving cancer care in developing countries requires the accommodation of the culture, traditions, and religious beliefs of both healthcare providers, patients and family. Culturally appropriate care model is therefore needed to enhance palliative and end of life care in developing countries. Leininger’s Cultural Care Theory seem an appropriate path to take.

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Understanding the concept of a “good death” among bereaved family caregivers of cancer patients in Singapore

Palliative & Supportive Care ◽

10.1017/s1478951511000691 ◽

2012 ◽

Vol 11 (1) ◽

pp. 37-46 ◽

Cited By ~ 15

Author(s):

Geok Ling Lee ◽

Ivan Mun Hong Woo ◽

Cynthia Goh

Keyword(s):

End Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Family Caregiver ◽

Well Being ◽

Good Death ◽

Advanced Cancer Patients ◽

The Family ◽

Spiritual Well Being ◽

Bereaved Family

AbstractObjective:The aim of this study was to examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients.Method:The data were gathered from five focus group discussions and one face-to-face qualitative interview conducted over 8 months among 18 bereaved family caregivers recruited from a local hospice. The transcripts of the focus groups and the interview were entered into NVivo Version 8 and were analyzed using the thematic approach.Results:A good death may be understood as having the biopsychosocial and spiritual aspects of life handled well at the end of life. Five major themes were identified. These were preparation for death, family and social relationships, moments at or near death, comfort and physical care, and spiritual well-being. Differences were also noted in what is important at the end of life between the patients and caregivers. Having a quick death with little suffering was perceived to be good by the patient, but the family caregiver wanted to be able to say a final goodbye to the patient. Patients tend to prefer not to die in their children's presence but the children wished to be present for the final moment. In addition, family caregivers reported it was important for them to be able to give the patients permission to die, to feel recognized for the efforts made, and to have had a fulfilling caregiving experience.Significance of results:Whereas there are global attributes of a good death, our findings suggest that patients and family caregivers may define a good death differently. Therefore, there is a need to respect, address, and reconcile the differences, so that all parties may have a good experience at the end of a person's life.

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Depressive-symptom trajectories from end-of-life caregiving through the first 2 bereavement years for family caregivers of advanced cancer patients

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2021.03.018 ◽

2021 ◽

Author(s):

Fur-Hsing Wen ◽

Wen-Chi Chou ◽

Ming-Mo Hou ◽

Po-Jung Su ◽

Wen-Chi Shen ◽

...

Keyword(s):

Depressive Symptom ◽

End Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Advanced Cancer ◽

Advanced Cancer Patients ◽

Symptom Trajectories

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The extra burdens patients in denial impose on their family caregivers

Palliative & Supportive Care ◽

10.1017/s1478951512000491 ◽

2012 ◽

Vol 11 (2) ◽

pp. 91-99 ◽

Cited By ~ 4

Author(s):

Naomi R. Kogan ◽

Michelle Dumas ◽

S. Robin Cohen

Keyword(s):

Cancer Patients ◽

Family Caregivers ◽

Advanced Cancer ◽

Psychosocial Support ◽

Healthcare Providers ◽

Structured Interviews ◽

Advanced Cancer Patients ◽

Field Notes ◽

Coping Pattern ◽

The Impact

AbstractObjective:The purpose of this study was to explore the impact of advanced cancer patients' denial on their family caregivers and how they cope, in order to enable clinicians to better support them and their caregiving.Method:As the objective was to obtain clinically useful findings, an interpretive descriptive design was used. Data consisted of prospective semi-structured interviews with 16 family caregivers of advanced cancer patients in denial, field notes, reflexive journals, and memos during the analysis.Results:Caregivers experienced extra burdens with the patient's denial. Feeling bound to preserve the denial, which they perceived as immutable, they were prevented from seeking information to manage the patient's care. Additionally, those caring for noncompliant patients felt disenfranchised from their role, resulting in feelings of powerlessness and guilt, and felt burdened by managing medical situations that arose from noncompliance. Caregivers described the ambivalence of feeling frustrated and burdened by the denial while recognizing it as a long-standing coping pattern for the patient. The denial prevented them from acknowledging their own needs to the patients or seeking informal support. They therefore developed solitary coping strategies, sought professional psychosocial support, and/or employed denial themselves.Significance of results:Caregivers of patients in denial experience added burdens, which they must bear without most of the usual sources of support. The burden is accentuated when patients are noncompliant with care, placing themselves in dangerous situations. Healthcare providers should identify patients in denial and support their caregivers in meeting both their caregiving and their own needs. Evidence-based strategies to accomplish this should be developed and implemented.

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