scholarly journals Family perceptions of quality of end of life in LGBTQ+ individuals: a comparative study

2021 ◽  
Vol 15 ◽  
pp. 263235242199715
Author(s):  
S. Alexander Kemery

Background: Members of the lesbian, gay, bisexual, transgender, and queer community have encountered discrimination and stigmatization related to sexual orientation and/or gender identity both within healthcare establishments and in the larger community. Despite the literature describing inequities in healthcare, very little published research exists on the experiences of lesbian, gay, bisexual, transgender, and queer patients and family members in hospice care. Methods: A quantitative comparative descriptive design explored the difference in end-of-life experiences between a lesbian, gay, bisexual, transgender, and queer and non-lesbian, gay, bisexual, transgender, and queer cohort. One hundred and twenty-two family members of individuals who have died while under hospice care in the past 5 years completed the Quality of Dying and Death Version 3.2a Family Member/Friend After-Death Self-Administered Questionnaire. Results: Comparison of the experiences of the lesbian, gay, bisexual, transgender, and queer cohort ( n = 56) and non-LGBTQ cohort ( n = 66) yielded varying results, with the LGBTQ cohort experiencing lower quality end of life in some Quality of Dying and Death measures and no statistically significant difference from the non-LGBTQ cohort in others. Discussion: The findings from this study in combination with previously published works on lesbian, gay, bisexual, transgender, and queer health support the position that hospice providers must take concrete steps to ensure that professional caregivers and office staff are qualified to meet the needs of this marginalized population.

2017 ◽  
Vol 1 (2) ◽  
Author(s):  
Jillian A. Tullis ◽  
Lori A. Roscoe ◽  
Patrick J. Dillon

The overall hospice philosophy is to provide care that enhances a dying person’s quality of life. Most individual’s quality of life is improved when they embrace hospice eligibility and reimbursement requirements, such as stopping burdensome and ineffective curative treatment, addressing pain and other symptoms, and seeking avenues for closure. However, this institutionalized prescription for enhancing quality of life at the end of life does not work for all patients. This article considers what happens when patients’ personal definitions of quality of life at the end of life resist the prevailing narrative of appropriate hospice care. Using a series of examples from more than 600 hours of participant observation, our findings reveal narratives of resistance that fall into three themes: i) patients and/or family members who deny the imminence of death despite an admission to hospice; ii) patients who request treatments usually defined as curative; and iii) patients who resist the organizational constraints imposed by the institutionalization of the hospice model of care. Analysis of these themes illustrates the subjective nature of quality of life at the end of life and the pressures of standardization that may accompany the growth and maturity of the hospice industry in the United States.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Juanjuan Zhao ◽  
Liming You ◽  
Hongmei Tao ◽  
Frances Kam Yuet Wong

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.


2019 ◽  
Vol 2 (1) ◽  
pp. 53-56
Author(s):  
Gustavo Ferrer ◽  
Chi Chan Lee ◽  
Monica Egozcue ◽  
Hector Vazquez ◽  
Melissa Elizee ◽  
...  

Background: During the process of transition of care from the intensive care setting, clarity, and understanding are vital to a patient's outcome. A successful transition of care requires collaboration between health-care providers and the patient's family. The objective of this project was to assess the quality of continuity of care with regard to family perceptions, education provided, and psychological stress during the process. Methods: A prospective study conducted in a long-term acute care (LTAC) facility. On admission, family members of individuals admitted to the LTAC were asked to fill out a 15-item questionnaire with regard to their experiences from preceding intensive care unit (ICU) hospitalization. The setting was an LTAC facility. Patients were admitted to an LTAC after ICU admission. Results: Seventy-six participants completed the questionnaire: 38% expected a complete recovery, 61% expected improvement with disabilities, and 1.3% expected no recovery. With regard to the length of stay in the LTAC, 11% expected < 1 week, 26% expected 1 to 2 weeks, 21% expected 3 to 4 weeks, and 42% were not sure. Before ICU discharge, 33% of the participants expected the transfer to the LTAC. Also, 72% did not report a satisfactory level of knowledge regarding their family's clinical condition or medical services required; 21% did not receive help from family members; and 50% reported anxiety, 20% reported depression, and 29% reported insomnia. Conclusion: Families' perception of patients' prognosis and disposition can be different from what was communicated by the physician. Families' anxiety and emotional stress may precipitate this discrepancy. The establishment of optimal projects to eliminate communication barriers and educate family members will undoubtedly improve the quality of transition of care from the ICU.


2018 ◽  
Vol 21 (2) ◽  
pp. 62-71
Author(s):  
Henry O’Lawrence ◽  
Rohan Chowlkar

Purpose The purpose of this paper is to determine the cost effectiveness of palliative care on patients in a home health and hospice setting. Secondary data set was utilized to test the hypotheses of this study. Home health care and hospice care services have the potential to avert hospital admissions in patients requiring palliative care, which significantly affects medicare spending. With the aging population, it has become evident that demand of palliative care will increase four-fold. It was determined that current spending on end-of-life care is radically emptying medicare funds and fiscally weakening numerous families who have patients under palliative care during life-threatening illnesses. The study found that a majority of people registering for palliative and hospice care settings are above the age group of 55 years old. Design/methodology/approach Different variables like length of stay, mode of payment and disease diagnosis were used to filter the available data set. Secondary data were utilized to test the hypothesis of this study. There are very few studies on hospice and palliative care services and no study focuses on the cost associated with this care. Since a very large number of the USA, population is turning 65 and over, it is very important to analyze the cost of care for palliative and hospice care. For the purpose of this analysis, data were utilized from the National Home and Hospice Care Survey (NHHCS), which has been conducted periodically by the Centers for Disease Control and Prevention’s National Center for Health Statistics. Descriptive statistics, χ2 tests and t-tests were used to test for statistical significance at the p<0.05 level. Findings The Statistical Package for Social Sciences (SPSS) was utilized for this result. H1 predicted that patients in the age group of 65 years and up have the highest utilization of home and hospice care. This study examined various demographic variables in hospice and home health care which may help to evaluate the cost of care and the modes of payments. This section of the result presents the descriptive analysis of dependent, independent and covariate variables that provide the overall national estimates on differences in use of home and hospice care in various age groups and sex. Research limitations/implications The data set used was from the 2007 NHHCS survey, no data have been collected thereafter, and therefore, gap in data analysis may give inaccurate findings. To compensate for this gap in the data set, recent studies were reviewed which analyzed cost in palliative care in the USA. There has been a lack of evidence to prove the cost savings and improved quality of life in palliative/hospice care. There is a need for new research on the various cost factors affecting palliative care services as well as considering the quality of life. Although, it is evident that palliative care treatment is less expensive as compared to the regular care, since it eliminates the direct hospitalization cost, but there is inadequate research to prove that it improves the quality of life. A detailed research is required considering the additional cost incurred in palliative/hospice care services and a cost-benefit analysis of the same. Practical implications While various studies reporting information applicable to the expenses and effect of family caregiving toward the end-of-life were distinguished, none of the previous research discussed this issue as their central focus. Most studies addressed more extensive financial effect of palliative and end-of-life care, including expenses borne by the patients themselves, the medicinal services framework and safety net providers or beneficent/willful suppliers. This shows a significant hole in the current writing. Social implications With the aging population, it has become evident that demand of palliative/hospice care will increase four-fold. The NHHCS have stopped keeping track of the palliative care requirements after 2007, which has a negative impact on the growing needs. Cost analysis can only be performed by analyzing existing data. This review has recognized a huge niche in the evidence base with respect to the cost cares of giving care and supporting a relative inside a palliative/hospice care setting. Originality/value The study exhibited that cost diminishments in aggressive medications can take care of the expenses of palliative/hospice care services. The issue of evaluating result in such a physically measurable way is complicated by the impalpable nature of large portions of the individual components of outcome. Although physical and mental well-being can be evaluated to a certain degree, it is significantly more difficult to gauge in a quantifiable way, the social and profound measurements of care that help fundamentally to general quality of care.


2021 ◽  
Vol 7 (4) ◽  
pp. 469-473
Author(s):  
Ting Fang ◽  
Nian Wang ◽  
Meng Chen ◽  
Hongmei Ma

Objective Explore the impact of personalized nursing services and hospice care on the quality of life of elderly patients with advanced cancer. Method We selected 80 elderly cancer patients admitted to our hospital from September 2020 to May 2021, and divided these patients into a study group and a control group using a random number table method. The patients in the control group used conventional nursing methods to treat and care for the patients, and the patients in the study group used hospice care measures and combined personalized nursing measures. The quality of life and pain treatment effects of the two groups of patients before and after treatment were compared. Result Before treatment, the quality-of-life scores of the two groups of patients were low, and there was no statistical difference (P>0.05); After treatment, the quality of life of the two groups of patients improved, but compared with the control group, the improvement was more obvious in the study group, and the difference was statistically significant (P<0.05). In terms of pain treatment effect, the total effective rate of pain treatment in the study group was 87.5%, which was significantly better than the 62.5% in the control group. The difference was statistically significant (P<0.05). Conclusion Personalized nursing services and hospice care are conducive to improving the survival and treatment of elderly patients with advanced cancer, and can be used as a clinical application program for the care of advanced cancer patients.


2017 ◽  
Vol 15 (5) ◽  
pp. 652-666 ◽  
Author(s):  
Ayodeji Emmanuel Oke ◽  
Clinton Ohis Aigbavboa ◽  
Marcia M. Raphiri

Purpose There are several types of accommodation available to students of higher education institutions, and it is the responsibility of the institutions to focus on factors that can attract and retain students to their residences. This study aims to investigate satisfaction of higher institutions students with on-campus accommodation with an emphasis on the ethnicity of the students. Design/methodology/approach Using convenience sampling method, questionnaires were administered to students of selected residences in the study area. Mean item score was used to rank identified factors, whereas mean gap and Kruskal–Wallis K-test were adopted to examine the difference in opinion of students from various ethnic groups. Findings Overall, major features that make students dissatisfied with university-owned accommodations are enforcement of rule that compels all students to move out with their belongings during each recess, the effectiveness of the lift system, the size of wardrobe and closet, laundry service in the residence, numbers of electrical sockets and window quality. Considering dwelling unit features, neighbourhood, environmental, building quality and services provided by residence management, this study reveals that there is a significant difference in the satisfaction of students of diverse ethnic groups with their accommodation. Research limitations/implications The study was limited to on-campus residences owned by higher education institutions in South Africa. However, the findings of the study can be adopted for off-campus residences, and such owned by private individuals, agencies and other bodies provided are approved by the institutions. Originality/value The findings of this study will help management of higher education institutions to improve quality of services in their residences for the satisfaction of their students. Developers, contractors and other stakeholders involved in construction of these residences will also find the findings useful in designing and construction of the facilities.


2021 ◽  
Author(s):  
Snezana M Jovicic

Abstract Background: Understanding the effect of pre-analytical factors is important for data quality of bio-specimens and health status. The study examines the effect of 9-days fluid intake and 2-time sampling on concentration changes of 7-Urine and 17-Blood variables. Material and Method: SPSS software v23.0 applies to data processing. The group of 23 healthy subjects divide based on water intake and gender. Results: A statistically significant difference(p<0.01) between 1st/2nd sampling is confirmed for Freezing point depression, Sodium, Potassium, Creatinine Urea and Urate in Urine and Urea, Urate, Glucose, Hematocrit, Thrombocyte in Blood. The difference between water intake after 1st sampling is confirmed (p<0.01) for Freezing point depression, Sodium, Urate and(p<0.05) for Potassium(p<0.05), Chloride(p<0.05), Creatinine(p<0.05), Urate, Urea in Urine and Potassium(p<0.01) and Chloride(p<0.05) in Blood. Difference between gender exists for Urea(p<0.05) in Urine after 2nd sampling and Urate(P<0.01), Glucose(p<0.01/0.05), Ht(p<0.01/0.05) after 1st and 2nd sampling and MCHC(p<0.01) after 2nd sampling in Blood samples.Conclusion: Water intake increases blood and urine biomarker range after sampling.


2020 ◽  
Vol 4 (1) ◽  
pp. 59-67
Author(s):  
Eka Swarnadi Luh ◽  
Ketut Budi Susrusa ◽  
Ida Ayu Listia Dewi

LPDs are non-bank financial institutions that are regulated and approved by the Regional Regulations of the Province of Bali. The management of LPD is fully handed over to the relevant Pakraman village. In line with the rapid development of LPDs, it turns out that on the other hand it shows diverse performance, so that LPDs need to pay attention to the level of product quality and customer interest in the products offered.            The purpose of the study was to determine the comparison of product quality and interest in saving at the Tajun Traditional Village LPD with the Traditional Village of Tegal. The number of samples from Tajun Adat Village LPD was 98 people and the LPD of Tegal Traditional Village was 84 people. The research data were analyzed by the Mann-Whitney Test. The results showed that there was a significant difference between the quality of the products of the Adat Village of Tajun LPD and the Traditional Village of Tegal. This difference is indicated by indicators of physical evidence, reliability, responsiveness and empathy. The product quality of Tajun Adat Village's LPD is better than the traditional village of Tegal. There is a significant difference between the interest in saving the traditional village of Tajun LPD and the traditional village of Tegal. The difference is in the indicator of confidence. Interest in Saving Tajun Indigenous Village LPD is higher than the Traditional Village of Tegal.


2004 ◽  
Vol 28 (4) ◽  
pp. 306-315 ◽  
Author(s):  
Richard Mularski ◽  
J. Randall Curtis ◽  
Molly Osborne ◽  
Ruth A. Engelberg ◽  
Linda Ganzini

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