Intensity of Predeath Grief and Postdeath Grief of Family Caregivers in Palliative Care in Relation to Preparedness for Caregiving, Caregiver Burden, and Social Support

ObjectivesLittle is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers.MethodsA longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys.ResultsIn total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016–2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients’ death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: −44.04% and 95% CIs −75.65 to −12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: −0.35% and 95% CI −0.58 to −0.11 on IES and coefficient: −0.22% and 95% CI −0.40 to −0.05 on CES-D) among caregivers following the patients’ death. Caregivers’ who accepted the concept of palliative care had fewer psychological symptoms after patients’ death (coefficient: −3.29% and 95% CI −6.32 to −0.25 on IES and coefficient: −3.22% and 95% CI −5.24 to −1.20 on CES-D).ConclusionsPalliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.

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Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home

Palliative & Supportive Care ◽

10.1017/s1478951517000232 ◽

2017 ◽

Vol 16 (3) ◽

pp. 260-268 ◽

Cited By ~ 11

Author(s):

Yoko Naoki ◽

Yoshinobu Matsuda ◽

Isseki Maeda ◽

Hideka Kamino ◽

Yoko Kozaki ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Family Caregivers ◽

Caregiver Burden ◽

End Of Life Care ◽

Care Service ◽

Palliative Care Service ◽

Family Satisfaction ◽

Life Care ◽

Care At Home

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

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Societal perceptions of caregivers linked to culture across 20 countries: Evidence from a 10-billion-word database

PLoS ONE ◽

10.1371/journal.pone.0251161 ◽

2021 ◽

Vol 16 (7) ◽

pp. e0251161

Author(s):

Reuben Ng ◽

Nicole Indran

Keyword(s):

Social Support ◽

Family Caregivers ◽

Caregiver Burden ◽

Economic Value ◽

The United States ◽

Online Media ◽

Aging Parents ◽

Culturally Sensitive Interventions ◽

Negative Perceptions ◽

Care Deficit

Caregivers play an indispensable role in society. In 2017, 41 million family caregivers in the United States provided approximately 34 billion hours of care to their aging parents, spouses, partners and friends. The estimated economic value of their unpaid contributions amounted to $470 billion. Despite their invaluable contributions, caregivers often operate in a reality of inadequate social support. Little is known about the factors linked to the societal perceptions of caregivers, and our study seeks to contribute by filling this gap. Importantly, whether society honors or stigmatizes caregivers is critical as it could impact caregiving decisions and either exacerbate or ameliorate caregiver burden. We leveraged an online media database of 10 billion words collated from over 28 million articles, across 20 countries, to analyze societal perceptions of caregivers. Of the 20 countries, 18 evidenced neutral to positive perceptions of caregivers. Bangladesh and Ghana had the most positive perceptions, while Sri Lanka and Tanzania had the most negative perceptions. Aging demographics and culture (individualism, masculinity and uncertainty avoidance) were significantly associated with perceptions of caregivers. Findings suggest that positive perceptions of caregivers can be better cultivated when caring is lauded as a virtuous act that aids in reducing the care deficit. This study is among the first to analyze the societal perceptions of caregivers globally, and lays the groundwork to design culturally sensitive interventions that increase society’s appreciation for caregivers.

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Factors Related to the Burden of Family Caregivers of Elderly Patients with Spinal Tumours in Northwest China

10.21203/rs.2.11622/v2 ◽

2020 ◽

Author(s):

Jing Luo ◽

yongchun Zhou ◽

Haiping Liu ◽

Jing Hu

Keyword(s):

Social Support ◽

Elderly Patients ◽

Family Caregivers ◽

Caregiver Burden ◽

Self Efficacy ◽

Rating Scale ◽

Care Process ◽

Cancer Site ◽

Spinal Tumours ◽

Cross Sectional

Abstract Background: Family caregivers of elderly patients with spinal tumours experience considerable pain and burden during the care process. This study aims to investigate the factors associated with caregiver burden in family caregivers of elderly patients with spinal tumours. Methods: A total of 220 elderly patients with spinal tumours (age ≥ 65 years) hospitalized at the spine centre of our hospital from January 2015 to December 2017 and their family caregivers were recruited for this cross-sectional study. All participants completed a sociodemographic questionnaire. Caregiver burden, social support and self-efficacy were assessed by the Chinese version of the Zarit Burden Interview (ZBI), the Social Support Rating Scale (SSRS) and the General Self-Efficacy Scale (GSE), respectively. The factors related to caregiver burden were analysed by multivariate analysis. P < 0.05 was considered statistically significant. Results: The 216 elderly patients with spinal tumours were 71.59 ± 8.49 years old, and their caregivers were 70.46 ± 9.13 years old. A total of 170 patients were cared for by their spouses, who accounted for 78.7% of all caregivers. The ZBI score for the family caregivers was 35.5 ± 7.5, and most caregivers (84.5%) reported a moderate or heavy burden. The factors related to caregiver burden included patient paralysis, the primary cancer site, chemotherapy and/or radiation, cognitive dysfunction, functional status, monthly income, pain score, caregivers’ SSRS score, and GSE score. Conclusions: Most family caregivers of elderly patients with spinal tumours have a considerable caregiver burden. Interventions based on social support and self-efficacy can help reduce caregiver burden.

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Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal

Transcultural Psychiatry ◽

10.1177/1363461520909596 ◽

2020 ◽

Vol 57 (3) ◽

pp. 445-454 ◽

Cited By ~ 1

Author(s):

Mayra Delalibera ◽

Alexandra Coelho ◽

Pedro Frade ◽

António Barbosa ◽

Isabel Leal

Keyword(s):

Palliative Care ◽

Family Caregivers ◽

Caregiver Burden ◽

Cultural Context ◽

Past Research ◽

Psychological Morbidity ◽

Future Research ◽

Brazilian Sample ◽

Process Understanding ◽

Practical Support

Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.

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Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient’s Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17155457 ◽

2020 ◽

Vol 17 (15) ◽

pp. 5457 ◽

Cited By ~ 1

Author(s):

Doris Y. P. Leung ◽

Helen Y. L. Chan ◽

Patrick K. C. Chiu ◽

Raymond S. K. Lo ◽

Larry L. Y. Lee

Keyword(s):

Quality Of Life ◽

Social Support ◽

Palliative Care ◽

Caregiver Burden ◽

Indirect Effect ◽

Self Efficacy ◽

Care Needs ◽

Positive Direct ◽

Palliative Care Needs

Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient’s quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient’s quality of life. A convenience sample of 225 patient–caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did (p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient’s quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient’s quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient’s quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient’s quality of life.

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Social support and depressive symptoms among family caregivers of older people with disabilities in four provinces of urban China: the mediating role of caregiver burden

BMC Geriatrics ◽

10.1186/s12877-019-1403-9 ◽

2020 ◽

Vol 20 (1) ◽

Cited By ~ 6

Author(s):

Yaqin Zhong ◽

Jian Wang ◽

Stephen Nicholas

Keyword(s):

Social Support ◽

Depressive Symptoms ◽

Older People ◽

Family Caregivers ◽

Caregiver Burden ◽

People With Disabilities ◽

Cognitive Capacity ◽

Chinese Family ◽

Negatively Associated

Abstract Background To examine the relationship between social support and depressive symptoms of Chinese family caregivers of older people with disabilities, and to evaluate the role of caregiver burden as a potential mediator of that relationship. Methods A survey questionnaire was completed face-to-face by 567 primary family caregivers of older people with disabilities in four provinces in China. Covariates that may affect depressive symptoms, such as the characteristics of disabled people (socio-economic factors, functional and cognitive capacity) and caregivers (caregiver duration and self-rated health of caregivers) were collected. Social support was measured by the Multidimensional Scale of Perceived Social Support (MSPSS); depressive symptoms were assessed by the shortened 10 item version of Center for Epidemiological Studies Depression scale (CES-D); and the caregiver burden was assessed by the Zarit Burden Interview (ZBI). Results The prevalence of depressive symptoms among caregivers was 37.7%. Higher levels of social support was negatively associated with lower depressive symptoms. This relationship was partially mediated by the caregiver burden, where higher levels of the caregiver burden were negatively associated with depressive symptoms. Furthermore, caregivers who were women, spent extended time in caregiving and were in poor health, reported significantly higher depressive symptoms. Conclusions Our results indicated that social support was negatively associated with depressive symptoms in family caregivers and in the caregiver burden. The caregiver burden partially mediated the social support-depressive symptoms association. Interventions for family caregivers should include increasing social support, health monitoring and structured interventions to reduce the caregiver burden and attenuate family caregivers’ depressive symptoms.

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Caregiver Burden of Family Caregivers of Patients With Dementia in a Shanghai Community

Innovation in Aging ◽

10.1093/geroni/igaa057.2707 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 751-751

Author(s):

Juan Li ◽

Zhijian Liu ◽

You Yin

Keyword(s):

Social Support ◽

Cognitive Function ◽

Family Caregivers ◽

Community Service ◽

Service Utilization ◽

Caregiver Burden ◽

Neuropsychiatric Symptoms ◽

Demographic Information ◽

Factors Associated ◽

Family Caregiver Burden

Abstract This study explored the level of and factors related to Chinese dementia family caregiver burden. We recruited 109 dyads of patients with dementia and their family caregivers from communities in Shanghai, China. Caregiver burden was assessed by Caregiver Burden Inventory. We used multivariate linear regression model to investigate factors associated with caregiver burden, including patients’ socio-demographic information, cognitive function, ADL, neuropsychiatric symptoms, caregivers’ depression, coping strategy, social support and community service utilization. The level of caregiver burden was moderate (65.92±16.74). The patients’ cognitive function and social support were negatively associated with caregiver burden (β=﹣0.850, p＜0.01, β=﹣1.787, p=0.044, respectively). Caregivers’ depression and community service utilization were positively associated with caregiver burden (β=2.109, p＜0.01,β=1.215, p＜0.01, respectively). These findings suggest enhancing social support and reducing depression of caregivers may have the potential of decreasing caregiver burden.

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