Pub Date : 2024-06-13DOI: 10.1186/s12904-024-01439-x
Xiulan Guo, Yue Long, Zhikai Qin, Yongtao Fan
Purpose: This study aimed to assess the therapeutic efficacy of Reiki therapy in alleviating anxiety.
Methods: In adherence to academic standards, a thorough search was conducted across esteemed databases such as PubMed, Web of Science, Science Direct, and the Cochrane Library. The primary objective of this search was to pinpoint peer-reviewed articles published in English that satisfied specific criteria: (1) employing an experimental or quasi-experimental study design, (2) incorporating Reiki therapy as the independent variable, (3) encompassing diverse patient populations along with healthy individuals, and (4) assessing anxiety as the measured outcome.
Results: The study involved 824 participants, all of whom were aged 18 years or older. Reiki therapy was found to have a significant effect on anxiety intervention(SMD=-0.82, 95CI -1.29∼-0.36, P = 0.001). Subgroup analysis indicated that the types of subjects (chronically ill individuals and the general adult population) and the dosage/frequency of the intervention (≤ 3 sessions and 6-8 sessions) were significant factors influencing the variability in anxiety reduction.
Conclusion: Short-term Reiki therapy interventions of ≤ 3 sessions and 6-8 sessions have demonstrated effectiveness in reducing health and procedural anxiety in patients with chronic conditions such as gastrointestinal endoscopy inflammation, fibromyalgia, and depression, as well as in the general population. It is important to note that the efficacy of Reiki therapy in decreasing preoperative anxiety and death-related anxiety in preoperative patients and cancer patients is somewhat less consistent. These discrepancies may be attributed to individual pathophysiological states, psychological conditions, and treatment expectations.
{"title":"Therapeutic effects of Reiki on interventions for anxiety: a meta-analysis.","authors":"Xiulan Guo, Yue Long, Zhikai Qin, Yongtao Fan","doi":"10.1186/s12904-024-01439-x","DOIUrl":"10.1186/s12904-024-01439-x","url":null,"abstract":"<p><strong>Purpose: </strong>This study aimed to assess the therapeutic efficacy of Reiki therapy in alleviating anxiety.</p><p><strong>Methods: </strong>In adherence to academic standards, a thorough search was conducted across esteemed databases such as PubMed, Web of Science, Science Direct, and the Cochrane Library. The primary objective of this search was to pinpoint peer-reviewed articles published in English that satisfied specific criteria: (1) employing an experimental or quasi-experimental study design, (2) incorporating Reiki therapy as the independent variable, (3) encompassing diverse patient populations along with healthy individuals, and (4) assessing anxiety as the measured outcome.</p><p><strong>Results: </strong>The study involved 824 participants, all of whom were aged 18 years or older. Reiki therapy was found to have a significant effect on anxiety intervention(SMD=-0.82, 95CI -1.29∼-0.36, P = 0.001). Subgroup analysis indicated that the types of subjects (chronically ill individuals and the general adult population) and the dosage/frequency of the intervention (≤ 3 sessions and 6-8 sessions) were significant factors influencing the variability in anxiety reduction.</p><p><strong>Conclusion: </strong>Short-term Reiki therapy interventions of ≤ 3 sessions and 6-8 sessions have demonstrated effectiveness in reducing health and procedural anxiety in patients with chronic conditions such as gastrointestinal endoscopy inflammation, fibromyalgia, and depression, as well as in the general population. It is important to note that the efficacy of Reiki therapy in decreasing preoperative anxiety and death-related anxiety in preoperative patients and cancer patients is somewhat less consistent. These discrepancies may be attributed to individual pathophysiological states, psychological conditions, and treatment expectations.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11170819/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141318693","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-13DOI: 10.1186/s12904-024-01482-8
Yifan Yan, Meiqi Li, Jitka Annen, Wangshan Huang, Tiantian Cai, Xueying Wang, Xiaohua Hu, Steven Laureys, Haibo Di
Objectives: Surrogate decision-making by family caregivers for patients with severe brain injury is influenced by the availability and understanding of relevant information and expectations for future rehabilitation. We aimed to compare the consistency of family caregivers' perceptions with clinical diagnoses and to inform their expectation of prognosis in the future.
Methods: The Coma Recovery Scale-Revised was used to assess the diagnosis of inpatients with severe brain injury between February 2019 and February 2020. A main family caregiver was included per patient. The family caregiver's perception of the patient's consciousness and expectations of future recovery were collected through questionnaires and compared consistently with the clinical diagnosis.
Results: The final sample included 101 main family caregivers of patients (57 UWS, unresponsive wakefulness syndrome, 37 MCS, minimally conscious state, 7 EMCS, emergence from MCS) with severe brain injury. Only 57 family caregivers correctly assessed the level of consciousness as indicated by the CRS-R, showing weak consistency (Kappa = 0.217, P = 0.002). Family caregivers' demographic characteristics and CRS-R diagnosis influenced the consistency between perception and clinical diagnosis. Family caregivers who provided hands-on care to patients showed higher levels of consistent perception (AOR = 12.24, 95% CI = 2.06-73.00, P = 0.006). Compared to UWS, the family caregivers of MCS patients were more likely to have a correct perception (OR = 7.68, 95% CI = 1.34-44.06). Family caregivers had positive expectations for patients' recovery in terms of both communication and returning to normal life.
Conclusion: Nearly half of family caregivers have inadequate understanding of their relative's level of consciousness, and most of them report overly optimistic expectations that do not align with clinical diagnosis. Providing more medical information to family caregivers to support their surrogate decision-making process is essential.
{"title":"Perception of diagnosis by family caregivers in severe brain injury patients in China.","authors":"Yifan Yan, Meiqi Li, Jitka Annen, Wangshan Huang, Tiantian Cai, Xueying Wang, Xiaohua Hu, Steven Laureys, Haibo Di","doi":"10.1186/s12904-024-01482-8","DOIUrl":"10.1186/s12904-024-01482-8","url":null,"abstract":"<p><strong>Objectives: </strong>Surrogate decision-making by family caregivers for patients with severe brain injury is influenced by the availability and understanding of relevant information and expectations for future rehabilitation. We aimed to compare the consistency of family caregivers' perceptions with clinical diagnoses and to inform their expectation of prognosis in the future.</p><p><strong>Methods: </strong>The Coma Recovery Scale-Revised was used to assess the diagnosis of inpatients with severe brain injury between February 2019 and February 2020. A main family caregiver was included per patient. The family caregiver's perception of the patient's consciousness and expectations of future recovery were collected through questionnaires and compared consistently with the clinical diagnosis.</p><p><strong>Results: </strong>The final sample included 101 main family caregivers of patients (57 UWS, unresponsive wakefulness syndrome, 37 MCS, minimally conscious state, 7 EMCS, emergence from MCS) with severe brain injury. Only 57 family caregivers correctly assessed the level of consciousness as indicated by the CRS-R, showing weak consistency (Kappa = 0.217, P = 0.002). Family caregivers' demographic characteristics and CRS-R diagnosis influenced the consistency between perception and clinical diagnosis. Family caregivers who provided hands-on care to patients showed higher levels of consistent perception (AOR = 12.24, 95% CI = 2.06-73.00, P = 0.006). Compared to UWS, the family caregivers of MCS patients were more likely to have a correct perception (OR = 7.68, 95% CI = 1.34-44.06). Family caregivers had positive expectations for patients' recovery in terms of both communication and returning to normal life.</p><p><strong>Conclusion: </strong>Nearly half of family caregivers have inadequate understanding of their relative's level of consciousness, and most of them report overly optimistic expectations that do not align with clinical diagnosis. Providing more medical information to family caregivers to support their surrogate decision-making process is essential.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11170822/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141318692","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-10DOI: 10.1186/s12904-024-01474-8
Emilie Allard, Sarah Dumaine, Martin Sasseville, Morgane Gabet, Arnaud Duhoux
Background: In 2021, the National Institute of Public Health (INSPQ) (Quebec, Canada), published an update of the palliative and end-of-life care (PEoLC) indicators. Using these updated indicators, this qualitative study aimed to explore the point of view of PEoLC experts on how to improve access and quality of care as well as policies surrounding end-of-life care.
Methods: Semi-directed interviews were conducted with palliative care and policy experts, who were asked to share their interpretations on the updated indicators and their recommendations to improve PEoLC. A thematic analysis method was used.
Results: The results highlight two categories of interpretations and recommendations pertaining to: (1) data and indicators and (2) clinical and organizational practice. Participants highlight the lack of reliability and quality of the data and indicators used by political and clinical stakeholders in evaluating PEoLC. To improve data and indicators, they recommend: improving the rigour and quality of collected data, assessing death percentages in all healthcare settings, promoting research on quality of care, comparing data to EOL care directives, assessing use of services in EOL, and creating an observatory on PEoLC. Participants also identified barriers and disparities in accessing PEoLC as well as inconsistency in quality of care. To improve PEoLC, they recommend: early identification of palliative care patients, improving training for all healthcare professionals, optimizing professional practice, integrating interdisciplinary teams, and developing awareness on access disparities.
Conclusions: Results show that PEoLC is an important aspect of public health. Recommendations issued are relevant to improve PEoLC in and outside Quebec.
{"title":"Quality of palliative and end-of-life care: a qualitative study of experts' recommendations to improve indicators in Quebec (Canada).","authors":"Emilie Allard, Sarah Dumaine, Martin Sasseville, Morgane Gabet, Arnaud Duhoux","doi":"10.1186/s12904-024-01474-8","DOIUrl":"10.1186/s12904-024-01474-8","url":null,"abstract":"<p><strong>Background: </strong>In 2021, the National Institute of Public Health (INSPQ) (Quebec, Canada), published an update of the palliative and end-of-life care (PEoLC) indicators. Using these updated indicators, this qualitative study aimed to explore the point of view of PEoLC experts on how to improve access and quality of care as well as policies surrounding end-of-life care.</p><p><strong>Methods: </strong>Semi-directed interviews were conducted with palliative care and policy experts, who were asked to share their interpretations on the updated indicators and their recommendations to improve PEoLC. A thematic analysis method was used.</p><p><strong>Results: </strong>The results highlight two categories of interpretations and recommendations pertaining to: (1) data and indicators and (2) clinical and organizational practice. Participants highlight the lack of reliability and quality of the data and indicators used by political and clinical stakeholders in evaluating PEoLC. To improve data and indicators, they recommend: improving the rigour and quality of collected data, assessing death percentages in all healthcare settings, promoting research on quality of care, comparing data to EOL care directives, assessing use of services in EOL, and creating an observatory on PEoLC. Participants also identified barriers and disparities in accessing PEoLC as well as inconsistency in quality of care. To improve PEoLC, they recommend: early identification of palliative care patients, improving training for all healthcare professionals, optimizing professional practice, integrating interdisciplinary teams, and developing awareness on access disparities.</p><p><strong>Conclusions: </strong>Results show that PEoLC is an important aspect of public health. Recommendations issued are relevant to improve PEoLC in and outside Quebec.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11163802/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141301944","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-10DOI: 10.1186/s12904-024-01465-9
Kavita Algu, Joshua Wales, Michael Anderson, Mariam Omilabu, Thandi Briggs, Allison M Kurahashi
Background: Racial and ethnic inequities in palliative care are well-established. The way researchers design and interpret studies investigating race- and ethnicity-based disparities has future implications on the interventions aimed to reduce these inequities. If racism is not discussed when contextualizing findings, it is less likely to be addressed and inequities will persist.
Objective: To summarize the characteristics of 12 years of academic literature that investigates race- or ethnicity-based disparities in palliative care access, outcomes and experiences, and determine the extent to which racism is discussed when interpreting findings.
Methods: Following Arksey & O'Malley's methodology for scoping reviews, we searched bibliographic databases for primary, peer reviewed studies globally, in all languages, that collected race or ethnicity variables in a palliative care context (January 1, 2011 to October 17, 2023). We recorded study characteristics and categorized citations based on their research focus-whether race or ethnicity were examined as a major focus (analyzed as a primary independent variable or population of interest) or minor focus (analyzed as a secondary variable) of the research purpose, and the interpretation of findings-whether authors directly or indirectly discussed racism when contextualizing the study results.
Results: We identified 3000 citations and included 181 in our review. Of these, most were from the United States (88.95%) and examined race or ethnicity as a major focus (71.27%). When interpreting findings, authors directly named racism in 7.18% of publications. They were more likely to use words closely associated with racism (20.44%) or describe systemic or individual factors (41.44%). Racism was directly named in 33.33% of articles published since 2021 versus 3.92% in the 10 years prior, suggesting it is becoming more common.
Conclusion: While the focus on race and ethnicity in palliative care research is increasing, there is room for improvement when acknowledging systemic factors - including racism - during data analysis. Researchers must be purposeful when investigating race and ethnicity, and identify how racism shapes palliative care access, outcomes and experiences of racially and ethnically minoritized patients.
{"title":"Naming racism as a root cause of inequities in palliative care research: a scoping review.","authors":"Kavita Algu, Joshua Wales, Michael Anderson, Mariam Omilabu, Thandi Briggs, Allison M Kurahashi","doi":"10.1186/s12904-024-01465-9","DOIUrl":"10.1186/s12904-024-01465-9","url":null,"abstract":"<p><strong>Background: </strong>Racial and ethnic inequities in palliative care are well-established. The way researchers design and interpret studies investigating race- and ethnicity-based disparities has future implications on the interventions aimed to reduce these inequities. If racism is not discussed when contextualizing findings, it is less likely to be addressed and inequities will persist.</p><p><strong>Objective: </strong>To summarize the characteristics of 12 years of academic literature that investigates race- or ethnicity-based disparities in palliative care access, outcomes and experiences, and determine the extent to which racism is discussed when interpreting findings.</p><p><strong>Methods: </strong>Following Arksey & O'Malley's methodology for scoping reviews, we searched bibliographic databases for primary, peer reviewed studies globally, in all languages, that collected race or ethnicity variables in a palliative care context (January 1, 2011 to October 17, 2023). We recorded study characteristics and categorized citations based on their research focus-whether race or ethnicity were examined as a major focus (analyzed as a primary independent variable or population of interest) or minor focus (analyzed as a secondary variable) of the research purpose, and the interpretation of findings-whether authors directly or indirectly discussed racism when contextualizing the study results.</p><p><strong>Results: </strong>We identified 3000 citations and included 181 in our review. Of these, most were from the United States (88.95%) and examined race or ethnicity as a major focus (71.27%). When interpreting findings, authors directly named racism in 7.18% of publications. They were more likely to use words closely associated with racism (20.44%) or describe systemic or individual factors (41.44%). Racism was directly named in 33.33% of articles published since 2021 versus 3.92% in the 10 years prior, suggesting it is becoming more common.</p><p><strong>Conclusion: </strong>While the focus on race and ethnicity in palliative care research is increasing, there is room for improvement when acknowledging systemic factors - including racism - during data analysis. Researchers must be purposeful when investigating race and ethnicity, and identify how racism shapes palliative care access, outcomes and experiences of racially and ethnically minoritized patients.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11163751/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141301943","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-10DOI: 10.1186/s12904-024-01479-3
C Bagchus, M S Zee, J T van der Steen, M S Klapwijk, N Lemos Dekker, B D Onwuteaka-Philipsen, H R W Pasman
Background: Most nursing home residents have complex care needs, require palliative care and eventually die in these facilities. Timely recognition of changes in a resident's condition is crucial for providing appropriate care. Observations by nursing staff play a significant role in identifying and interpreting these changes.
Methods: Focus group discussions were conducted with nursing staff from ten nursing homes in the Netherlands to explore their experiences and challenges in recognizing and discussing changes in a resident's condition. These discussions were analysed following the principles of thematic analysis.
Results: The analysis of the challenges nursing staff face in identifying and interpreting changes in a resident's condition, resulted in three themes. First, that recognizing changes is considered complex, because it requires specialized knowledge and skills that is generally not part of their education and must partly be learned in practice. This also depends on how familiar the nursing staff is with the resident. Furthermore, different people observe residents through different lenses, depending on their relation and experiences with residents. This could lead to disagreements about the resident's condition. Lastly, organizational structures such as the resources available to document and discuss a resident's condition and the hierarchy between nursing home professionals often hindered discussions and sharing observations.
Conclusion: Nursing staff's experiences highlight the complexity of recognizing and discussing changes in nursing home residents' conditions. While supporting the observational skills of nursing staff is important, it is not enough to improve the quality of care for nursing home residents with palliative care needs. As nursing staff experiences challenges at different, interrelated levels, improving the process of recognizing and discussing changes in nursing home residents requires an integrated approach in which the organization strengthens the position of nursing staff. It is important that their observations become a valued and integrated and part of nursing home care.
{"title":"Challenges in recognizing and discussing changes in a resident's condition in the palliative phase: focus group discussions with nursing staff working in nursing homes about their experiences.","authors":"C Bagchus, M S Zee, J T van der Steen, M S Klapwijk, N Lemos Dekker, B D Onwuteaka-Philipsen, H R W Pasman","doi":"10.1186/s12904-024-01479-3","DOIUrl":"10.1186/s12904-024-01479-3","url":null,"abstract":"<p><strong>Background: </strong>Most nursing home residents have complex care needs, require palliative care and eventually die in these facilities. Timely recognition of changes in a resident's condition is crucial for providing appropriate care. Observations by nursing staff play a significant role in identifying and interpreting these changes.</p><p><strong>Methods: </strong>Focus group discussions were conducted with nursing staff from ten nursing homes in the Netherlands to explore their experiences and challenges in recognizing and discussing changes in a resident's condition. These discussions were analysed following the principles of thematic analysis.</p><p><strong>Results: </strong>The analysis of the challenges nursing staff face in identifying and interpreting changes in a resident's condition, resulted in three themes. First, that recognizing changes is considered complex, because it requires specialized knowledge and skills that is generally not part of their education and must partly be learned in practice. This also depends on how familiar the nursing staff is with the resident. Furthermore, different people observe residents through different lenses, depending on their relation and experiences with residents. This could lead to disagreements about the resident's condition. Lastly, organizational structures such as the resources available to document and discuss a resident's condition and the hierarchy between nursing home professionals often hindered discussions and sharing observations.</p><p><strong>Conclusion: </strong>Nursing staff's experiences highlight the complexity of recognizing and discussing changes in nursing home residents' conditions. While supporting the observational skills of nursing staff is important, it is not enough to improve the quality of care for nursing home residents with palliative care needs. As nursing staff experiences challenges at different, interrelated levels, improving the process of recognizing and discussing changes in nursing home residents requires an integrated approach in which the organization strengthens the position of nursing staff. It is important that their observations become a valued and integrated and part of nursing home care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11163817/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141301942","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-10DOI: 10.1186/s12904-024-01461-z
B Schouten, S M van Schoten, F M Bijnsdorp, H Merten, P W B Nanayakkara, A K L Reyners, A L Francke, C Wagner
Background: Patient safety is crucial for quality of care. Preventable adverse events (AEs) occur in 1 of 20 patients in the hospital, but it is unknown whether this is different for patients with a condition relevant for palliative care. The majority of the limited available research on this topic is only focused on patients already receiving palliative care, and do not make comparisons with other patients at the end-of-life. We identified and compared the prevalence, preventability, nature and causes of AEs in patients with and without a condition relevant for palliative care.
Methods: A nationwide retrospective record review study was performed in 20 Dutch hospitals. A total of 2,998 records of patients who died in hospital in 2019 was included. Records were reviewed for AEs. We identified two subgroups: patients with (n = 2,370) or without (n = 248) a condition relevant for palliative care through the selection method of Etkind (2017). Descriptive analyses were performed to calculate prevalence, nature, causes and prevention strategies. T-tests were performed to calculate differences between subgroups.
Results: We found no significant differences between subgroups regarding AE prevalence, this was 15.3% in patients with a condition relevant for palliative care, versus 12.0% in patients without a condition relevant for palliative care (p = 0.148). Potentially preventable AE prevalence was 4.3% versus 4.4% (p = 0.975). Potentially preventable death prevalence in both groups was 3.2% (p = 0.938). There were differences in the nature of AEs: in patients with a condition relevant for palliative care this was mostly related to medication (33.1%), and in patients without a condition relevant for palliative care to surgery (50.8%). In both subgroups in the majority of AEs a patient related cause was identified. For the potentially preventable AEs in both subgroups the two most important prevention strategies as suggested by the medical reviewers were reflection and evaluation and quality assurance.
Discussion: Patient safety risks appeared to be equally prevalent in both subgroups. The nature of AEs does differ between subgroups: medication- versus surgery-related, indicating that tailored safety measures are needed. Recommendations for practice are to focus on reflecting on AEs, complemented with case evaluations.
{"title":"Adverse events at the end of life of hospital patients with or without a condition relevant for palliative care: a nationwide retrospective record review study in the Netherlands.","authors":"B Schouten, S M van Schoten, F M Bijnsdorp, H Merten, P W B Nanayakkara, A K L Reyners, A L Francke, C Wagner","doi":"10.1186/s12904-024-01461-z","DOIUrl":"10.1186/s12904-024-01461-z","url":null,"abstract":"<p><strong>Background: </strong>Patient safety is crucial for quality of care. Preventable adverse events (AEs) occur in 1 of 20 patients in the hospital, but it is unknown whether this is different for patients with a condition relevant for palliative care. The majority of the limited available research on this topic is only focused on patients already receiving palliative care, and do not make comparisons with other patients at the end-of-life. We identified and compared the prevalence, preventability, nature and causes of AEs in patients with and without a condition relevant for palliative care.</p><p><strong>Methods: </strong>A nationwide retrospective record review study was performed in 20 Dutch hospitals. A total of 2,998 records of patients who died in hospital in 2019 was included. Records were reviewed for AEs. We identified two subgroups: patients with (n = 2,370) or without (n = 248) a condition relevant for palliative care through the selection method of Etkind (2017). Descriptive analyses were performed to calculate prevalence, nature, causes and prevention strategies. T-tests were performed to calculate differences between subgroups.</p><p><strong>Results: </strong>We found no significant differences between subgroups regarding AE prevalence, this was 15.3% in patients with a condition relevant for palliative care, versus 12.0% in patients without a condition relevant for palliative care (p = 0.148). Potentially preventable AE prevalence was 4.3% versus 4.4% (p = 0.975). Potentially preventable death prevalence in both groups was 3.2% (p = 0.938). There were differences in the nature of AEs: in patients with a condition relevant for palliative care this was mostly related to medication (33.1%), and in patients without a condition relevant for palliative care to surgery (50.8%). In both subgroups in the majority of AEs a patient related cause was identified. For the potentially preventable AEs in both subgroups the two most important prevention strategies as suggested by the medical reviewers were reflection and evaluation and quality assurance.</p><p><strong>Discussion: </strong>Patient safety risks appeared to be equally prevalent in both subgroups. The nature of AEs does differ between subgroups: medication- versus surgery-related, indicating that tailored safety measures are needed. Recommendations for practice are to focus on reflecting on AEs, complemented with case evaluations.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11163706/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141301941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background: Dignity is integral to palliative care. Illness can diminish it, causing hopelessness and the wish to hasten death. Yet, dignity is a complex multidimensional phenomenon, influenced by values and context. Understanding its varying interpretations can inform practice and policy. The aim of the study is to explore the understanding of dignity in adult patients with palliative care needs from a Lebanese perspective and how it is preserved during illness and while receiving health services.
Design: Qualitative interview study underpinned with a social constructionist lens. Fourteen patients recruited from home-based hospice and outpatient clinics in Lebanon. Data analysed using reflexive thematic analysis.
Results: Four themes were developed across all the interviews: (a) Dignity anchored through faith in God and religious practices; (b) Family support in maintaining physical, psychological wellbeing, and social connectedness; (c) Physical fitness, mental acuity, and healthy appearance through which patients may escape the stigma of disease, (d) accessible, equitable, and compassionate healthcare.
Discussion: Dignity is elusive and difficult to define but faith and religious beliefs play a significant contribution in this study. For the participants, illness is seen as a natural part of life that does not necessarily diminish dignity, but it is the illness related changes that potentially affect dignity. Findings show the importance of family and children in preserving dignity during illness and how their active presence provide a sense of pride and identity. Participants aspired to restore physical, social, and mental well-being to reclaim their dignity and normalize their lives. Challenges related to physical appearance, memory loss, vitality, and social stigma associated with illness diminished dignity. Accessible, equitable and compassionate healthcare services are also crucial in preserving dignity. Participants valued clear communication, respect, and empathy from healthcare providers and identified affordability of care essential for maintaining dignity.
Conclusion: Faith in God, and strong family ties are dominant elements to maintaining dignity in the Lebanese context. Relational connectedness with family, children or God is also a need in maintaining dignity in other communal countries with variations in emphasis. The study indicates that religious and cultural context shapes the needs and perceptions of dignity during illness. These findings are likely to be transferable to many Middle Eastern countries but also countries with strong religious and family ties globally.
{"title":"Dignity enhanced through faith & family support in palliative care: a qualitative study.","authors":"Silva Dakessian Sailian, Yakubu Salifu, Nancy Preston","doi":"10.1186/s12904-024-01478-4","DOIUrl":"10.1186/s12904-024-01478-4","url":null,"abstract":"<p><strong>Background: </strong>Dignity is integral to palliative care. Illness can diminish it, causing hopelessness and the wish to hasten death. Yet, dignity is a complex multidimensional phenomenon, influenced by values and context. Understanding its varying interpretations can inform practice and policy. The aim of the study is to explore the understanding of dignity in adult patients with palliative care needs from a Lebanese perspective and how it is preserved during illness and while receiving health services.</p><p><strong>Design: </strong>Qualitative interview study underpinned with a social constructionist lens. Fourteen patients recruited from home-based hospice and outpatient clinics in Lebanon. Data analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>Four themes were developed across all the interviews: (a) Dignity anchored through faith in God and religious practices; (b) Family support in maintaining physical, psychological wellbeing, and social connectedness; (c) Physical fitness, mental acuity, and healthy appearance through which patients may escape the stigma of disease, (d) accessible, equitable, and compassionate healthcare.</p><p><strong>Discussion: </strong>Dignity is elusive and difficult to define but faith and religious beliefs play a significant contribution in this study. For the participants, illness is seen as a natural part of life that does not necessarily diminish dignity, but it is the illness related changes that potentially affect dignity. Findings show the importance of family and children in preserving dignity during illness and how their active presence provide a sense of pride and identity. Participants aspired to restore physical, social, and mental well-being to reclaim their dignity and normalize their lives. Challenges related to physical appearance, memory loss, vitality, and social stigma associated with illness diminished dignity. Accessible, equitable and compassionate healthcare services are also crucial in preserving dignity. Participants valued clear communication, respect, and empathy from healthcare providers and identified affordability of care essential for maintaining dignity.</p><p><strong>Conclusion: </strong>Faith in God, and strong family ties are dominant elements to maintaining dignity in the Lebanese context. Relational connectedness with family, children or God is also a need in maintaining dignity in other communal countries with variations in emphasis. The study indicates that religious and cultural context shapes the needs and perceptions of dignity during illness. These findings are likely to be transferable to many Middle Eastern countries but also countries with strong religious and family ties globally.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11157805/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141288719","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family’s burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults.
姑息关怀和医养结合已逐渐成为应对人口老龄化和老年人临终多病负担日益加重的重要发展方向。目的:探讨在医疗和社会护理一体化机构中为临终病人家属提供姑息关怀服务的可用性和稳定性的益处/有效性。这项前瞻性观察研究在一家综合医疗和社会护理机构进行。研究对象包括 230 名接受姑息治疗的临终病人及其家属。在姑息治疗过程中,对患者家属进行了问卷调查和量表测量,包括生活质量(SF-8)、家庭负担(FBSD、CBI)、焦虑(HAMA)和痛苦(DT)。我们使用配对 t 检验和相关分析来分析与研究问题相关的数据。在医养结合机构中,姑息关怀能有效改善临终患者的生活质量,减轻家庭负担,缓解临终患者家属的心理压力。姑息治疗是影响生活质量、家庭负担和社会心理状态的独立因素。研究结果与患者和家属相关因素无关,具有稳定性和广泛适用性。研究结果强调了姑息治疗的可用性和稳定性,以及为成年老人提供健康和社会关怀的综合服务模式的普及性。
{"title":"Availability and stability of palliative care for family members of terminally ill patients in an integrated model of health and social care","authors":"Chunyan Wang, Shaojie Bi, Yanxia Lu, Yuli Li, Bing Han, Min Xu, Guiyue Meng, Qingbo Zhou","doi":"10.1186/s12904-024-01475-7","DOIUrl":"https://doi.org/10.1186/s12904-024-01475-7","url":null,"abstract":"Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family’s burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults.","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141259690","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-05DOI: 10.1186/s12904-024-01472-w
Gui-Ru Xu, Wen-Ying Yu
This study investigates the mediating effect of meaning in life between death anxiety and attitude toward palliative care among nursing students. We enrolled 363 undergraduate nursing students using a convenience sampling method as the respondents and conducted a survey using general information about nursing students, the Chinese version of the FATCOD-B Scale, the Chinese version of the Death Anxiety Scale, and the Chinese version of the Meaning in Life Questionnaire. The SPSS25.0 statistical software was used to analyze the mediating effect. The mean total attitude score toward palliative care was (104.72 ± 10.62). Death anxiety had a significant negative predictive effect on the attitude toward palliative care (β = -0.520, P < 0.01). When the mediating variable of the presence of meaning in life was included, the negative predictive effect of death anxiety on attitude toward palliative care remained significant (β = -0.379, P = 0.036); the mediating effect (-0.141) accounted for 27.12% of the total impact (-0.520). The presence of meaning in life mediates the relationship between death anxiety and attitude toward palliative care. This implies that nursing educators, through their role in educating nursing students about the meaning of life, can significantly influence the development of a positive attitude toward palliative care.
{"title":"Mediating effect of meaning in life on death anxiety and attitude toward palliative care among undergraduate nursing students","authors":"Gui-Ru Xu, Wen-Ying Yu","doi":"10.1186/s12904-024-01472-w","DOIUrl":"https://doi.org/10.1186/s12904-024-01472-w","url":null,"abstract":"This study investigates the mediating effect of meaning in life between death anxiety and attitude toward palliative care among nursing students. We enrolled 363 undergraduate nursing students using a convenience sampling method as the respondents and conducted a survey using general information about nursing students, the Chinese version of the FATCOD-B Scale, the Chinese version of the Death Anxiety Scale, and the Chinese version of the Meaning in Life Questionnaire. The SPSS25.0 statistical software was used to analyze the mediating effect. The mean total attitude score toward palliative care was (104.72 ± 10.62). Death anxiety had a significant negative predictive effect on the attitude toward palliative care (β = -0.520, P < 0.01). When the mediating variable of the presence of meaning in life was included, the negative predictive effect of death anxiety on attitude toward palliative care remained significant (β = -0.379, P = 0.036); the mediating effect (-0.141) accounted for 27.12% of the total impact (-0.520). The presence of meaning in life mediates the relationship between death anxiety and attitude toward palliative care. This implies that nursing educators, through their role in educating nursing students about the meaning of life, can significantly influence the development of a positive attitude toward palliative care.","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141257123","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-05DOI: 10.1186/s12904-024-01473-9
Kouessi Anthelme Agbodande, Freddy Gnangnon, Mickael Assogba, Josué Avakoudjo, Angèle Azon Kouanou, Lisette Odoulamy, Jean Daho, Djimon Marcel Zannou, Sourakatou Salifou, Ali Imorou Bah Chabi, Raoul Saizonou, Issimouha Dille Mahamadou, Fernanda Bastos, Eduardo Garralda, Carlos Centeno Cortés, Vilma Adriana Tripodoro
Palliative care (PC) in most African countries remains under-assessed. Benin has piloted the implementation of a set of indicators proposed by the WHO to measure PC development. To examine the current status of PC in Benin. A workshop with stakeholders was organized to assess the WHO indicators in the Beninese context. Indicators were rated based on relevance and feasibility, data sources were agreed upon, and a survey was adapted. Data were collected between March and May 2023. There is emerging community involvement in PC through the presence of patients’ rights promoters, as well as a political commitment expressed in the National PC strategy, the inclusion of PC services in the list of basic health services, and an assigned national authority –within the Ministry of Health–responsible for PC. Although no PC-oriented research has been documented, the celebration of the National PC Conference represents the first step to ground PC delivery in evidence. The reported annual consumption of opioids is 0.18 (ME) milligrams per capita, 34% of healthcare establishments have essential medicines for pain and PC, and 16.5% of patients with palliative needs have access to oral morphine. To date, no medical or paramedical schools offer PC training, and there is no official specialization in palliative medicine for doctors. PC is provided by 11 specialist teams (0.08/100,000 inhabitants), none of which provides pediatric care. Despite growing political, professional, and community commitments to palliative care, there are challenges in education, research, essential medicines, and access to PC services. This article describes the first macro-level assessment of the status of palliative care development in Benin. A set of indicators adopted by the World Health Organization has enabled an understanding of the gaps in education, essential medicines, and specialized services for an adequate provision of palliative care.
大多数非洲国家对姑息关怀(PC)的评估仍然不足。贝宁试行了世界卫生组织提出的一套衡量姑息关怀发展的指标。为了研究贝宁姑息关怀的现状。组织了一次由利益相关者参加的研讨会,以评估世界卫生组织根据贝宁情况提出的指标。根据相关性和可行性对指标进行了评级,商定了数据来源,并对调查进行了调整。数据收集时间为 2023 年 3 月至 5 月。通过患者权利促进者的参与,以及国家 PC 战略中表达的政治承诺、将 PC 服务纳入基本医疗服务清单和指定卫生部内负责 PC 的国家机构,社区开始参与 PC 工作。尽管还没有以 PC 为导向的研究记录,但全国 PC 大会的庆祝活动代表了以证据为基础提供 PC 服务的第一步。据报告,阿片类药物的年人均消费量为 0.18( ME)毫克,34% 的医疗机构拥有治疗疼痛和 PC 的基本药物,16.5% 有姑息治疗需求的患者可以获得口服吗啡。迄今为止,还没有医学院或医疗辅助学校提供姑息治疗培训,医生也没有正式的姑息治疗专业。姑息治疗由 11 个专科小组提供(每 10 万居民中只有 0.08 个小组提供姑息治疗),其中没有一个小组提供儿科治疗。尽管对姑息关怀的政治、专业和社区承诺不断增加,但在教育、研究、基本药物和获取姑息关怀服务方面仍面临挑战。本文介绍了对贝宁姑息关怀发展现状的首次宏观评估。通过世界卫生组织采用的一套指标,我们得以了解在教育、基本药物和专业服务方面存在的差距,以便充分提供姑息关怀服务。
{"title":"Palliative care progress in Benin: a situation analysis using the WHO development indicators","authors":"Kouessi Anthelme Agbodande, Freddy Gnangnon, Mickael Assogba, Josué Avakoudjo, Angèle Azon Kouanou, Lisette Odoulamy, Jean Daho, Djimon Marcel Zannou, Sourakatou Salifou, Ali Imorou Bah Chabi, Raoul Saizonou, Issimouha Dille Mahamadou, Fernanda Bastos, Eduardo Garralda, Carlos Centeno Cortés, Vilma Adriana Tripodoro","doi":"10.1186/s12904-024-01473-9","DOIUrl":"https://doi.org/10.1186/s12904-024-01473-9","url":null,"abstract":"Palliative care (PC) in most African countries remains under-assessed. Benin has piloted the implementation of a set of indicators proposed by the WHO to measure PC development. To examine the current status of PC in Benin. A workshop with stakeholders was organized to assess the WHO indicators in the Beninese context. Indicators were rated based on relevance and feasibility, data sources were agreed upon, and a survey was adapted. Data were collected between March and May 2023. There is emerging community involvement in PC through the presence of patients’ rights promoters, as well as a political commitment expressed in the National PC strategy, the inclusion of PC services in the list of basic health services, and an assigned national authority –within the Ministry of Health–responsible for PC. Although no PC-oriented research has been documented, the celebration of the National PC Conference represents the first step to ground PC delivery in evidence. The reported annual consumption of opioids is 0.18 (ME) milligrams per capita, 34% of healthcare establishments have essential medicines for pain and PC, and 16.5% of patients with palliative needs have access to oral morphine. To date, no medical or paramedical schools offer PC training, and there is no official specialization in palliative medicine for doctors. PC is provided by 11 specialist teams (0.08/100,000 inhabitants), none of which provides pediatric care. Despite growing political, professional, and community commitments to palliative care, there are challenges in education, research, essential medicines, and access to PC services. This article describes the first macro-level assessment of the status of palliative care development in Benin. A set of indicators adopted by the World Health Organization has enabled an understanding of the gaps in education, essential medicines, and specialized services for an adequate provision of palliative care.","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141257120","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}