Measuring and understanding death anxiety in caregivers of patients with primary brain tumor

Willis, Kelcie; Ravyts, Scott G.; Lanoye, Autumn; Reid, Morgan; Aslanzadeh, Farah; Braun, Sarah; Svikis, Dace S.; Rodin, Gary; Loughan, Ashlee R.

doi:10.1017/s1478951522001110

Cited by 9 publications

(4 citation statements)

References 43 publications

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“…Such anxiety may include fear of not knowing what may happen at the end of life, fear of being alone after the death of the patient, fear that the patient may suffer as the disease progresses, or fear of not having enough shared time left. 61 Our results further indicate that high levels of death anxiety significantly affect family caregivers' quality of life; by interfering with caregivers' psychological adjustment, it can strain the relationship between the family caregiver and the patient, 62 and increase the challenge of providing the necessary support and care that is needed. Psychosocial support for caregivers may address emotional support and advice on caring and thus lead to better quality of life and increased ability of coping with the caring role.…”

Section: Study Locationmentioning

confidence: 58%

“…The latter study found anxiety regarding the patient's death as a central existential theme associated with the progression of the patient's disease. Such anxiety may include fear of not knowing what may happen at the end of life, fear of being alone after the death of the patient, fear that the patient may suffer as the disease progresses, or fear of not having enough shared time left 61 . Our results further indicate that high levels of death anxiety significantly affect family caregivers' quality of life; by interfering with caregivers' psychological adjustment, it can strain the relationship between the family caregiver and the patient, 62 and increase the challenge of providing the necessary support and care that is needed.…”

Section: Discussionmentioning

confidence: 99%

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Existential distress among family caregivers of patients with advanced cancer: A systematic review and meta‐analysis

Walbaum,

Philipp,

Oechsle

et al. 2023

Psycho-Oncology

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ObjectiveCaregiving for a loved one is challenging and requires significant resources. Existential distress in family caregivers may include hopelessness, demoralization, fear of death, pre‐loss grief, or a sense of not being emotionally prepared. The aim of this systematic review is to synthesize the quantitative literature on existential distress among family caregivers of patients with advanced cancer, focusing on its prevalence, association with mental disorders, as well as with sociodemographic, disease, and treatment‐related factors.MethodsWe systematically searched electronic databases for quantitative studies of the above‐described existential distress concepts in family caregivers of patients with advanced cancer. Two independent reviewers extracted data and evaluated study quality. Data were analyzed using random‐effects meta‐analysis.ResultsWe retrieved 17.587 records, of which 31 studies fulfilled inclusion criteria. 63% of the studies (n = 20) provided sufficient data for meta‐analysis for 5558 patients. We found an overall pooled prevalence of 30.6% for existential distress, 95% CI [24.2–37.0]. For existential distress subconcepts, prevalence rates were 57.0%, 95% CI [37.8–76.2], for death anxiety, 13.9%, 95% CI [10.8–17.0], for demoralization, 24.0%, 95% CI [18.0–30.0], for pre‐loss grief, 18.4%, 95% CI [4.0–32.7], for hopelessness, 35.2%, 95% CI [28.2–42.2], for loneliness, and 35.6%, 95% CI [13.0–58.3], for emotional unpreparedness.ConclusionsApproximately one third of the respondents were affected by high levels of existential distress. The review provides evidence for further development of support services that can reduce existential distress, focused on death anxiety, and improve the quality of life for family caregivers of patients with advanced cancer.

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Section: Study Locationmentioning

confidence: 58%

Section: Discussionmentioning

confidence: 99%

Existential distress among family caregivers of patients with advanced cancer: A systematic review and meta‐analysis

Walbaum,

Philipp,

Oechsle

et al. 2023

Psycho-Oncology

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“…Considering sociodemographic factors, only in two studies were higher levels of death anxiety found in women [28,61], indicating that it is not an exclusive risk variable (see Table 2). This could be due to the fact that this relationship only occurs in very specific areas or contexts and not universally across all settings [67,68].…”

Section: Discussionmentioning

confidence: 97%

“…Perceived social support is also identified as an explanatory factor for greater or lower levels of death anxiety in some studies [59]. It also varies depending on the illness, as exemplified in the study of Willis et al [61], where this anxiety was notably high in female caregivers of terminally ill patients. Lastly, the strong correlation found in one study [50], between this type of anxiety and post-traumatic growth cannot be ignored.…”

Section: Death Anxiety and Related Factorsmentioning

confidence: 96%

Death Anxiety in Caregivers of Chronic Patients

Quevedo-Blasco,

Díaz-Román,

Vega-García

2024

Healthcare

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This study aimed to determine the extent to which caregivers of patients with chronic illnesses experience death anxiety, and which variables from caregivers and patients might potentially be related to their death anxiety. It also aimed to compare the levels of death anxiety between patients and caregivers. Web of Science, Scopus, PubMed, Psychology Database, Cochrane, and Google Scholar were searched for original studies available until December 2022 that quantitatively addressed death anxiety in family and informal caregivers of individuals with chronic illnesses. The methodological quality of the included studies was assessed, and a meta-analysis was conducted using Hedges’ g as the effect size index and the DerSimonian–Laird method to analyze differences between patients and caregivers in death anxiety. The results of the 11 included studies showed moderate levels of death anxiety in caregivers, and the meta-analysis (k = 7; 614 patients and 586 caregivers) revealed non-significant differences between the death anxiety experienced by patients and caregivers (pooled Hedges’ g = −0.03, 95% CI = −0.29 to 0.25, p = 0.802). Some sociodemographic and psychological factors (e.g., gender, depression, and anxiety) might be related to the death anxiety experienced, but additional research is necessary to validate these findings.

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The impact of a primary brain tumor diagnosis on caregivers: Insights from the patients’ perspective

Willis,

Reid,

Fox

et al. 2024

Support Care Cancer

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Purpose The diagnosis of a primary brain tumor (PBT) causes significant distress for the caregiver-patient dyad, warranting increased supportive care intervention. Although researchers have previously assessed caregivers’ perceptions of their own supportive care needs, no study to date has identified how patients perceive the caregiving experience and/or patients’ recommendations for integrating supportive care of caregivers in neuro-oncology. This qualitative study examined caregiver distress as well as caregiver supportive care needs from the patients’ perspective to inform future intervention development. Methods Adults with PBT (N = 15; Mage = 45; 53% female; 93% White) were divided into four, 90-min focus groups moderated by a clinical neuropsychologist. Patients responded to semi-structured interview questions regarding various supportive care needs throughout the course of disease. Each discussion was transcribed and coded using thematic content analysis and NVivo software. Inter-rater reliability was excellent (MKappa = 0.92, range = 0.85–0.93). Results Seven distinct codes related to PBT caregivers emerged and were classified into two broader themes: Caregiver Impact (47% of coded content) and Caregiver Support (53% of coded content). Caregiver Impact refers to patients’ perspective of the practical and emotional demands of caregiving. Under Caregiver Support, patients cited a strong need for increased support of caregivers, including bereavement care, individual psychotherapy, and joint caregiver-patient dyad sessions. Conclusion Patients with PBT expressed profound concerns regarding the demands of caregiving and its impact on the well-being of their loved ones. Findings emphasize the need for comprehensive dyadic support in neuro-oncology throughout the disease trajectory to enhance the overall quality-of-life for both patients and their caregivers.

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Measuring and understanding death anxiety in caregivers of patients with primary brain tumor

Cited by 9 publications

References 43 publications

Existential distress among family caregivers of patients with advanced cancer: A systematic review and meta‐analysis

Existential distress among family caregivers of patients with advanced cancer: A systematic review and meta‐analysis

Death Anxiety in Caregivers of Chronic Patients

The impact of a primary brain tumor diagnosis on caregivers: Insights from the patients’ perspective

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