scholarly journals Validation of the Chinese version of the Care Evaluation Scale for measuring the quality of structure and process of end-of-life care from the perspective of bereaved family

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Juanjuan Zhao ◽  
Liming You ◽  
Hongmei Tao ◽  
Frances Kam Yuet Wong
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Mainland China ◽  
Chinese Version ◽  
Life Care ◽  
Quality Of Dying ◽  
Bereaved Family ◽  
Quality Of Structure ◽  
Care Evaluation

Abstract Background Assessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in Mainland China. The aim of this study is to validate the Chinese version of the Care Evaluation Scale (CES). Methods From January to December 2017, a cross-sectional online survey was conducted among bereaved family members of cancer patients from 10 medical institutes. The reliability of the CES was assessed with Cronbach’s α, and structural validity was evaluated by confirmatory factor analysis. Concurrent validity was tested by examining the correlation between the CES total score and overall satisfaction with end-of-life care, quality of dying and death, and quality of life. Results A total of 305 valid responses were analyzed. The average CES score was 70.7 ± 16.4, and the Cronbach’s α of the CES was 0.967 (range: 0.802–0.927 for the 10 domains). The fit indices for the 10-factor model of CES were good(root-mean-square error of approximation, 0.047; comparative fit index, 0.952; Tucker–Lewis index, 0.946; standardized root mean square residual, 0.053). The CES total score was highly correlated with overall satisfaction with medical care (r = 0.775, P < 0.01), and moderately correlated with patients’ quality of life (r = 0.579, P < 0.01) and quality of dying and death (r = 0.570, P < 0.01). In addition, few associations between CES total score and demographic characteristics, except for the family members’ age. Conclusions The Chinese version of the CES is a reliable and valid tool to evaluate the quality of structure and process of end-of-life care for patients with cancer from the perspective of bereaved family in Mainland China.

scholarly journals Validation of the Chinese Version of the Care Evaluation Scale for Measuring the Quality of Structure and Process of End-Of-Life Care From the Perspective of Bereaved Family

2020 ◽  
Author(s):  
Juanjuan Zhao ◽  
Liming You ◽  
Hongmei Tao ◽  
Frances Kam Yuet Wong
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Mainland China ◽  
Chinese Version ◽  
Life Care ◽  
Quality Of Dying ◽  
Bereaved Family ◽  
Quality Of Structure ◽  
Care Evaluation

Abstract Background: Assessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in mainland China. The aim of this study is to validate the Chinese version of the Care Evaluation Scale (CES).Methods: From January to December 2017, a cross-sectional online survey was conducted among bereaved family members of cancer patients from 10 medical institutes. The reliability of the CES was assessed with Cronbach’s α, and structural validity was evaluated by confirmatory factor analysis. Concurrent validity was tested by examining the correlation between the CES total score and overall satisfaction with end-of-life care, quality of dying and death, and quality of life.Results: A total of 305 valid responses were analyzed. The average CES score was 70.67±16.42, and the Cronbach’s α of the CES was 0.967 (range: 0.802–0.927 for the 10 domains). The fit indices for the 10-factor model of CES were good (root-mean-square error of approximation, 0.047; comparative fit index, 0.952; Tucker–Lewis index, 0.946; standardized root mean square residual, 0.053). The CES total score was highly correlated with overall satisfaction with medical care (r=0.775, P<0.01), and moderately correlated with patients’ quality of life (r=0.579, P<0.01) and quality of dying and death (r=0.570, P<0.01). In addition, few associations between CES total score and demographic characteristics, except for the family members’ age.Conclusions: The Chinese version of the CES is a reliable and valid tool to evaluate the quality of structure and process of end-of-life care for patients with cancer from the perspective of bereaved family in mainland China.

J-HOPE study: Evaluation of end-of-life cancer care in Japan from the perspective of bereaved family members

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9577-9577
Author(s):  
M. Miyashita ◽  
T. Morita ◽  
K. Sato ◽  
S. Tsuneto ◽  
Y. Shima
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Institutional Review Boards ◽  
Life Care ◽  
Knowledge And Skills ◽  
Bereaved Family ◽  
Care Evaluation

9577 Background: The Japan Hospice and Palliative Care Evaluation (J-HOPE) study was conducted in 2007 and 2008. The aim of the study was to evaluate the quality of end-of-life care at regional cancer centers (CCs), inpatient palliative care units (PCUs), and home hospices (HHs) in Japan from the perspective of bereaved family members. Methods: A nationwide cross-sectional mail survey was conducted in 2007 and 2008. The survey was sent to bereaved families 6–18 months after the death of a patient at 56 CCs, 100 PCUs, or 14 HHs. Outcome measures were the good death inventory, the care evaluation scale, and overall satisfaction with care. The protocol of this study was approved by the institutional review boards of each participating institution. Results: Of the 13,181 bereaved family members that received the survey, 8,163 (62%) participants returned their responses. Among bereaved family members, significantly fewer responded that patients were free from physical distress at CCs (50%) than PCUs (80%) and HHs (73%) (P<0.0001). Significantly fewer patients trusted the physicians at CCs (79%) when compared with PCUs (83%) and HHs (88%) (P<0.0001). Significantly fewer patients were valued as people at CCs (83%) than PCUs (93%) and HHs (95%) (P<0.0001). In addition, significantly fewer participants felt physicians should have worked to improve the patients' symptoms more quickly at CCs (55%) when compared with PCUs (78%) and HHs (77%) (P<0.0001). Significantly fewer participants felt nurse should improve their knowledge and skills regarding end-of-life care at CCs (51%) when compared with PCUs (76%) and HHs (78%) (P<0.0001). A total of 51% of participants reported that nurses should improve their knowledge and skills regarding end-of-life care. Finally, significantly fewer participants were satisfied with the end-of-life care provided by CCs (80%) when compared with PCUs (93%) and HHs (94%) (P<0.0001). Conclusions: Overall, the bereaved family members appreciated the end-of-life care provided by CCs, PCUs, and HHs in Japan. However, in some situations, the quality of end-of-life care provided by CCs was lower than that provided by PCUs and HHs. No significant financial relationships to disclose.

scholarly journals Measuring the quality of structure and process in end-of-life care from the bereaved family perspective

2004 ◽  
Vol 27 (6) ◽  
pp. 492-501 ◽  
Author(s):  
Tatsuya Morita ◽  
Kei Hirai ◽  
Yukihiro Sakaguchi ◽  
Etsuko Maeyama ◽  
Satoru Tsuneto ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Perspective ◽  
Bereaved Family ◽  
Quality Of Structure

2206Prevalence and determinants of complicated grief in bereaved caregivers of patients admitted for cardiovascular diseases

2019 ◽  
Vol 40 (Supplement_1) ◽  
Author(s):  
K Shinada ◽  
T Kohno ◽  
K Fukuda ◽  
M Higashitani ◽  
N Kawamatsu ◽  
...  
Keyword(s):  
Cardiovascular Diseases ◽  
End Of Life ◽  
Psychological Health ◽  
End Of Life Care ◽  
Cardiopulmonary Arrest ◽  
Tertiary Care ◽  
Complicated Grief ◽  
Life Care ◽  
Bereaved Family

Abstract Introduction Few studies have examined complicated grief in bereaved caregivers of patients with cardiovascular diseases (CVD), in contrast with studies in caregivers of patients with cancers. We examined the prevalence and determinants of complicated grief among bereaved caregivers of patients with CVD. Methods We conducted a cross-sectional survey using a self-administered questionnaire for bereaved family members of CVD patients who had died in the cardiology departments of 9 tertiary care centers in Japan. We assessed bereaved caregiver grief status using the Brief Grief Questionnaire (BGQ), and its association with their depression (Patient Health Questionnaire-9 [PHQ-9]). Questionnaire also covered following associated factors: bereaved family member and patient characteristics, end-of-life care (Care Evaluation Scale [CES], a scale for assessment of the structure and process of care); and the quality of the deceased patients' death (Good Death Inventory [GDI]). Results A total of 269 bereaved caregivers (mean age, 64±12 years; 35% male) of patients with CVD (heart failure n=155 myocardial infarction n=32, cardiopulmonary arrest n=15, arrhythmia n=8, and others n=59) were enrolled in the study. Overall, 14.1% of the bereaved caregivers had complicated grief (BGQ≥8), 32.3% had subthreshold complicated grief (BGQ=5–7), and 13.3% had depression (PHQ-9≥10). Bereaved caregivers with complicated grief frequently developed depression (58% vs. 6%, p<0.001). Among the bereaved caregivers with complicated grief, the assessment of end-of-life care was worse (CES score: 28 [21–40] vs. 23 [19–39], p=0.04), and the assessment of the deceased patients' quality of death tended to be worse (GDI score: 4.0 [3.0–4.8] vs. 4.3 [3.7–4.9], p=0.05). The cause of admission as well as preferences of the patient and family (e.g., treatment [focusing on extending life vs. relieving discomfort], desire for information, place of end-of-life) were not associated with the prevalence of complicated grief. The prevalence of complicated grief was associated with loss of a spouse, poor psychological health during the deceased patients' admission, and poor preparation for the patient's imminent death (all p<0.05). Bereaved caregivers with complicated grief had experienced more decisional burdens regarding the deceased patients' treatment (55% vs. 25%, p=0.001). Notably, 64% of bereaved caregivers with complicated grief were not treated (i.e., neither routine follow-up by psychiatrists/psychotherapist nor prescription for anti-depressants/tranquilizers). Conclusions The prevalence of complicated grief of bereavement was 14.0%. When subthreshold complicated grief was included, the prevalence of complicated grief increased to include half of the caregivers; therefore, routine screening of the bereaved could be recommended. Clinicians should pay particular attention to bereaved families with high risk factors to identify those at risk for future development of complicated grief.

Association between Quality of End-of-Life Care and Possible Complicated Grief among Bereaved Family Members

2014 ◽  
Vol 17 (9) ◽  
pp. 1025-1031 ◽  
Author(s):  
Kaya Miyajima ◽  
Daisuke Fujisawa ◽  
Kimio Yoshimura ◽  
Masaya Ito ◽  
Satomi Nakajima ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Complicated Grief ◽  
Life Care ◽  
Bereaved Family

scholarly journals Quality of dying and quality of end-of-life care of nursing home residents in six countries: An epidemiological study

2018 ◽  
Vol 32 (10) ◽  
pp. 1584-1595 ◽  
Author(s):  
Lara Pivodic ◽  
Tinne Smets ◽  
Nele Van den Noortgate ◽  
Bregje D Onwuteaka-Philipsen ◽  
Yvonne Engels ◽  
...  
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
Epidemiological Study ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Life Care ◽  
Quality Of Dying

Quality of end-of-life care for veterans with metastatic cancer and advanced chronic kidney disease.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e18281-e18281
Author(s):  
Shakira Jeanene Grant ◽  
Claire A Richards ◽  
Nicholas Burwick ◽  
Paul L Hebert ◽  
Ann A O'Hare
Keyword(s):  
Chronic Kidney Disease ◽  
End Of Life ◽  
End Of Life Care ◽  
Metastatic Cancer ◽  
Veterans Affairs ◽  
Life Care ◽  
Advanced Chronic Kidney Disease ◽  
Bereaved Family ◽  
To Receive

e18281 Background: Patients with cancer receive less aggressive interventions and higher quality end-of-life care than those with advanced chronic kidney disease (ACKD). However, the relationship between ACKD and cancer and patterns and quality of end-of-life care is poorly understood. Methods: Among a retrospective cohort of all patients with ACKD (estimated glomerular filtration rate < 20 mL/min/1.73m2) who died in Veterans Affairs facilities between 2009-2015 ( N = 9993), we compared dialysis treatment patterns, end-of-life care and family rated quality of care among those who did and did not have a diagnosis of metastatic cancer during the year before death. Data sources included Veterans Affairs clinical and administrative data, Medicare claims, and the United States Renal Data System registry. Family ratings of end-of-life care were based on responses to the Bereaved Family Survey (BFS). We fit logistic regression models and converted the coefficients to predicted probabilities Results: Overall, 1,237(12.4%) patients had a diagnostic code for metastatic cancer during the year before death. These patients were less likely than other patients to have been treated with dialysis before death. In analyses adjusted for patient characteristics and dialysis receipt, patients with metastatic cancer were less likely than other patients to receive intensive procedures (predicted probability: 18.2% vs. 36.2%) and to be admitted to the intensive care unit (ICU) within 30 days of death (30.7% vs. 50.1 %), or die in the ICU (16.2% vs. 33%). These patients were also more likely to receive a palliative care consultation within 90 days of death (46.6% vs. 37%) and to have hospice services at the time of death (55.3% vs. 33.4 %). Family-rated overall quality of care was higher for those with metastatic cancer (59.6% vs. 54.1%). Family members of patients with metastatic cancer also provided more favorable ratings for five individual BFS items including provider listening, informational, emotional support before death and pain control. All comparisons were statistically significant (i.e., P < 0.05). Conclusions: Within a national cohort of US Veterans with ACKD, the presence of metastatic cancer was associated with less dialysis utilization, less intensive medical care, and significantly higher bereaved family ratings of end-of-life care.

scholarly journals Cultural Adaptation and Validation of the Portuguese Version of the CANHELP Lite Bereavement Questionnaire

Healthcare ◽  
2020 ◽  
Vol 8 (1) ◽  
pp. 27
Author(s):  
Alexandra Pereira ◽  
Amélia Ferreira ◽  
Ana Rita Abrantes ◽  
Cristiana Gomes ◽  
Joana Saraiva ◽  
...  
Keyword(s):  
End Of Life ◽  
Cultural Adaptation ◽  
End Of Life Care ◽  
Northern Region ◽  
Satisfaction With Care ◽  
Global Rating ◽  
Life Care ◽  
Portuguese Version ◽  
Bereaved Family

Background: Satisfaction with care is an important outcome measure in end-of-life care. Validated instruments are necessary to evaluate and disseminate interventions that improve satisfaction with care at the end of life, contributing to improving the quality of care offered at the end of life to the Portuguese population. The purpose of this study was to perform a cross-cultural adaptation and psychometric analysis of the Portuguese version of the CANHELP Lite Bereavement Questionnaire. Methods: Methodological research with an analytical approach that includes translation, semantic, and cultural adaptation. Results: The Portuguese version comprised 24 items. A panel of experts and bereaved family members found it acceptable and that it had face and content validity. A total of 269 caregivers across several care settings in the northern region of Portugal were recruited for further testing. The internal consistency analysis of the adapted instrument resulted in a global alpha value of 0.950. The correlation between the adapted CANHELP questionnaire and a global rating of satisfaction was of 0.886 (p < 0.001). Conclusions: The instrument has good psychometric properties. It was reliable and valid in assessing caregivers’ satisfaction with end-of-life care and can be used in both clinical and research settings.

Patients' perspectives on participation in clinical trials and palliative end-of-life care for management of advanced cancers in Nigeria.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 78-78
Author(s):  
Jideuma Ikenna Egwim ◽  
Smita Palejwala
Keyword(s):  
Clinical Trials ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
End Of Life Care ◽  
Life Care ◽  
Advanced Cancer Patients ◽  
Incurable Cancer ◽  
Quality Of Dying

78 Background: Advanced cancers remain a major cause of mortality in Nigeria. Participation in clinical trials (PCTs) and palliative end-of-life care (PEOLC) are two approaches to incurable cancer management in the developed nations but these have been less adopted in Nigeria. This study set out to determine patients’ preferred approach between PCTs and PEOLC for management of advanced cancers in Nigeria. Methods: A survey of 120 advanced cancer patients was conducted using a questionnaire with 5-point Likert scale, variables of interest included demographic information, knowledge and perception about PCTs and PEOLC. Results: Majority of the patients (84%) agree PCTs is an option in management of incurable cancer but just about half accept it is beneficial and will improve their QOL, as against PEOLC, where all the patients considered it an option and deem it beneficial; with 99% and 98% respectively agreeing it will enhance their QOL and that of family members. About 56% believe PCTs carries a risk of burdensome interventions and 52% increased hospital stay at EOL while 47% are of the opinion it will increase cost of care with 45% stating it will lead to increased ICU death. Sixty-nine percent (69%) and 63% respectively agree PCTs increases the suffering of patients and family members while 43% believe it carries a net negative risk-benefit profile, nevertheless, 83% are ready to overlook the risk of PCTs for possible therapeutic benefit while for 87%, the primary motivation for PCTs is personal cure. Majority (58%) believe PCTs does not improve quality of dying/death contrary to PEOLC where 88% believe it would improve the quality of dying/death. Overall, by direct comparison 78%:13% prefer PEOL to PCTs; {X2(p-value), 40.26(0.001)}. Conclusions: Both modalities are acceptable to advanced cancer patients but the study reveals several ethical issues with PCTs including risk of burdensome interventions, suffering of patients, therapeutic misconception and misperception of curability. A major determinant to accepting PEOL is its positive impact on patients’ QOL. Concerted efforts are needed to significantly enhance access of PEOLC to cancer patients.

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