Pub Date : 2026-01-01Epub Date: 2023-09-06DOI: 10.1177/08258597231181040
Derya Biçak Ayik, Gülbeyaz Can
Objectives: This experimental randomized-controlled study was performed to define the efficacy of auricular acupressure (AA) in the management of constipation developing in palliative care patients. Methods: According to the pre-prepared randomization list, 44 patients were included in the experimental group and 46 patients were included in the control group. Routine clinical treatment and care implementation were maintained in the patients in both groups. AA was performed for 4 weeks in patients in the experimental group. During the study, to determine the complaints of the patients regarding constipation, the information in the daily patient chart was examined at least 5 times by interviewing with the patient/patient's relative in the clinic and/or via phone call, and the results were recorded in the patient chart and data collection forms. The independent variable of the study is AA application, and the dependent variables are constipation and quality of life. Results: It was determined that there was no statistically significant difference between the daily defecation frequency of the 2 groups during the first 11 days. However, after the 12th day, the daily stool frequency of the experimental group was higher compared to the control group and this difference obtained between the 2 groups was statistically significantly different. AA was effective in decreasing laxative use. Conclusion: This intervention increased stool frequency, reduced physical and psychosocial symptoms, anxieties, and improved stool satisfaction and it was an effective approach to improving the quality of life. It is recommended that the daily use of AA should be evaluated. The healthcare providers including nurses, patients, and patient relatives should be trained regarding AA.
{"title":"Effect of Auricular Acupressure in Management of Constipation in Palliative Care Patients.","authors":"Derya Biçak Ayik, Gülbeyaz Can","doi":"10.1177/08258597231181040","DOIUrl":"10.1177/08258597231181040","url":null,"abstract":"<p><p><b>Objectives:</b> This experimental randomized-controlled study was performed to define the efficacy of auricular acupressure (AA) in the management of constipation developing in palliative care patients. <b>Methods:</b> According to the pre-prepared randomization list, 44 patients were included in the experimental group and 46 patients were included in the control group. Routine clinical treatment and care implementation were maintained in the patients in both groups. AA was performed for 4 weeks in patients in the experimental group. During the study, to determine the complaints of the patients regarding constipation, the information in the daily patient chart was examined at least 5 times by interviewing with the patient/patient's relative in the clinic and/or via phone call, and the results were recorded in the patient chart and data collection forms. The independent variable of the study is AA application, and the dependent variables are constipation and quality of life. <b>Results:</b> It was determined that there was no statistically significant difference between the daily defecation frequency of the 2 groups during the first 11 days. However, after the 12th day, the daily stool frequency of the experimental group was higher compared to the control group and this difference obtained between the 2 groups was statistically significantly different. AA was effective in decreasing laxative use. <b>Conclusion:</b> This intervention increased stool frequency, reduced physical and psychosocial symptoms, anxieties, and improved stool satisfaction and it was an effective approach to improving the quality of life. It is recommended that the daily use of AA should be evaluated. The healthcare providers including nurses, patients, and patient relatives should be trained regarding AA.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"50-59"},"PeriodicalIF":1.7,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10534283","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Objective: South Asian communities represent one of the largest ethnic minority groups in the UK. Within this group the number of adults requiring palliative and end-of-life care is growing. However, there are often barriers to engagement and underutilization of palliative care services. We aimed to understand the experiences of South Asian patients and/or carers of palliative and end of life care services in the UK. Methods: We conducted a systematic literature review of qualitative data. The review was prospectively registered on PROSPERO (CRD42023442603). Three databases were searched to August 2023. Studies were included if they reported qualitative data on the experiences of South Asian patients, their carers or the perspective of health care staff involved in palliative or end of life care. Quality of studies was assessed using the Critical Appraisal Skills Programme Checklist. Data were analyzed using a thematic meta-synthesis framework. Results: Sixteen studies comprising 407 patients, carers, and healthcare staff were included. The themes identified were: barriers and facilitators to discussing and preparing for end of life; the impact of identity and culture on end-of-life practices and rituals; family roles and expectations regarding palliative care, and navigating challenges across care settings and healthcare interactions. Identified themes highlighted challenges, including language barriers, lack of awareness, and cultural insensitivity. Conclusions: Addressing these gaps through training and culturally appropriate services could significantly enhance the quality and inclusivity of palliative care services for South Asian communities.
{"title":"South Asian Experiences of Palliative and End-of-Life Care Provision in the UK: A Systematic Literature Review and Thematic Synthesis.","authors":"Jane Pardi, Eleanor Nuzum, Ugne Judickaite, Joshua Stott, Georgina Charlesworth, Roopal Desai","doi":"10.1177/08258597251343932","DOIUrl":"10.1177/08258597251343932","url":null,"abstract":"<p><p><b>Objective:</b> South Asian communities represent one of the largest ethnic minority groups in the UK. Within this group the number of adults requiring palliative and end-of-life care is growing. However, there are often barriers to engagement and underutilization of palliative care services. We aimed to understand the experiences of South Asian patients and/or carers of palliative and end of life care services in the UK. <b>Methods:</b> We conducted a systematic literature review of qualitative data. The review was prospectively registered on PROSPERO (CRD42023442603). Three databases were searched to August 2023. Studies were included if they reported qualitative data on the experiences of South Asian patients, their carers or the perspective of health care staff involved in palliative or end of life care. Quality of studies was assessed using the Critical Appraisal Skills Programme Checklist. Data were analyzed using a thematic meta-synthesis framework. <b>Results:</b> Sixteen studies comprising 407 patients, carers, and healthcare staff were included. The themes identified were: barriers and facilitators to discussing and preparing for end of life; the impact of identity and culture on end-of-life practices and rituals; family roles and expectations regarding palliative care, and navigating challenges across care settings and healthcare interactions. Identified themes highlighted challenges, including language barriers, lack of awareness, and cultural insensitivity. <b>Conclusions:</b> Addressing these gaps through training and culturally appropriate services could significantly enhance the quality and inclusivity of palliative care services for South Asian communities.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"105-120"},"PeriodicalIF":1.7,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12627243/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145226287","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2024-10-29DOI: 10.1177/08258597241291631
Özcan Ölbeci, Bişar Ergün, Mehmet Nuri Yakar, Volkan Hanci
Objective: Although the representation of women in palliative care has improved in recent years, gender inequality still exists in editorial leadership. This study aimed to characterize gender distribution in leadership positions on the editorial boards of palliative care journals. Methods: This cross-sectional study analyzed the gender composition of editorial boards for palliative care journals indexed in the Web of Science (WoS) and the factors that affect this composition. Information on the gender of editorial board members was obtained from each journal's website. Results: A total of 1388 editorial board members from 28 palliative care journals were included in the analysis. The data analysis showed that 540 (38.9%) of the editorial board members were women, while 848 (61.1%) were men. Of the 31 editors-in-chief, only 11 (35.5%) were women. Editorial boards of journals classified as social work (OR, 5.92, 95% CI, 2.29-15.30, p < 0.001) and nursing (OR, 4.20, 95% CI, 1.73-10.17, p = 0.001) in WoS coverage were independently associated with gender diversity. There were differences in gender representation between the editorial boards of palliative care journals published in New Zealand (OR, 0.49, 95% CI, 0.29-0.80, p = 0.005), Japan (OR, 0.17, 95% CI, 0.08-0.32, p < 0.001), and those categorized under oncology in WoS coverage (OR, 0.64, 95% CI, 0.05-0.89, p = 0.009). Conclusions: Our findings demonstrated that women are underrepresented among editorial board members of palliative care journals. Additional efforts are required to broaden diversity policies in palliative care.
{"title":"Gender Distribution of Editorial Board Members in Palliative Care Journals: Assessment of Gender Parity.","authors":"Özcan Ölbeci, Bişar Ergün, Mehmet Nuri Yakar, Volkan Hanci","doi":"10.1177/08258597241291631","DOIUrl":"10.1177/08258597241291631","url":null,"abstract":"<p><p><b>Objective:</b> Although the representation of women in palliative care has improved in recent years, gender inequality still exists in editorial leadership. This study aimed to characterize gender distribution in leadership positions on the editorial boards of palliative care journals. <b>Methods:</b> This cross-sectional study analyzed the gender composition of editorial boards for palliative care journals indexed in the Web of Science (WoS) and the factors that affect this composition. Information on the gender of editorial board members was obtained from each journal's website. <b>Results:</b> A total of 1388 editorial board members from 28 palliative care journals were included in the analysis. The data analysis showed that 540 (38.9%) of the editorial board members were women, while 848 (61.1%) were men. Of the 31 editors-in-chief, only 11 (35.5%) were women. Editorial boards of journals classified as social work (OR, 5.92, 95% CI, 2.29-15.30, <i>p </i>< 0.001) and nursing (OR, 4.20, 95% CI, 1.73-10.17, <i>p </i>= 0.001) in WoS coverage were independently associated with gender diversity. There were differences in gender representation between the editorial boards of palliative care journals published in New Zealand (OR, 0.49, 95% CI, 0.29-0.80, <i>p </i>= 0.005), Japan (OR, 0.17, 95% CI, 0.08-0.32, <i>p </i>< 0.001), and those categorized under oncology in WoS coverage (OR, 0.64, 95% CI, 0.05-0.89, <i>p </i>= 0.009). <b>Conclusions:</b> Our findings demonstrated that women are underrepresented among editorial board members of palliative care journals. Additional efforts are required to broaden diversity policies in palliative care.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"67-77"},"PeriodicalIF":1.7,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142523626","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-03-18DOI: 10.1177/08258597251326760
Hui-Ching Weng, Wei-Shu Lai, Duan-Rung Chen
ObjectivesPalliative care is emotionally demanding, yet extrinsic gratitude can improve job satisfaction. While intrinsic gratitude is effective in preventing burnout, the focus of existing research is mainly on extrinsic gratitude received by clinicians. This study aims to examine the role of intrinsic gratitude in clinicians within the emotionally demanding field of palliative care, assessing its impact on professional development and potential for broader community benefit.MethodsUtilizing purposive sampling, we recruited a diverse group of palliative care professionals from 10 hospitals, focusing on full-time staff with at least two years of experience in palliative care. Of the 23 clinicians, 12 (five physicians, six nurses, and one social worker) were recruited because they spontaneously expressed profound gratitude toward others.ResultsTwelve of twenty-three clinicians maintained a positive outlook despite the inherent challenges of their field. Intrinsic gratitude, especially toward team members like nurses, emerged as a pivotal support mechanism. Through its transformative dimensions of empathic engagement, self-elevation, and humility, this gratitude strengthened their professional resilience and trajectory and had a ripple effect on their personal lives, influencing familial relationships and broader societal interactions.ConclusionsThis is the first research focusing on clinicians' spontaneous expressions of gratitude. This study provides new insights into understanding the clinicians' intrinsic gratitude, its impact on their professional trajectory, and harnessing its potential benefits for broader community outreach. Through a reflective process incorporating gratitude, clinicians may be empowered to develop their self-coping mechanisms and nurture inner resilience while caring.
{"title":"Intrinsic Gratitude's Impact on Professional Trajectory: A Qualitative Interview Study With Palliative Care Team Members.","authors":"Hui-Ching Weng, Wei-Shu Lai, Duan-Rung Chen","doi":"10.1177/08258597251326760","DOIUrl":"10.1177/08258597251326760","url":null,"abstract":"<p><p>ObjectivesPalliative care is emotionally demanding, yet extrinsic gratitude can improve job satisfaction. While intrinsic gratitude is effective in preventing burnout, the focus of existing research is mainly on extrinsic gratitude received by clinicians. This study aims to examine the role of intrinsic gratitude in clinicians within the emotionally demanding field of palliative care, assessing its impact on professional development and potential for broader community benefit.MethodsUtilizing purposive sampling, we recruited a diverse group of palliative care professionals from 10 hospitals, focusing on full-time staff with at least two years of experience in palliative care. Of the 23 clinicians, 12 (five physicians, six nurses, and one social worker) were recruited because they spontaneously expressed profound gratitude toward others.ResultsTwelve of twenty-three clinicians maintained a positive outlook despite the inherent challenges of their field. Intrinsic gratitude, especially toward team members like nurses, emerged as a pivotal support mechanism. Through its transformative dimensions of empathic engagement, self-elevation, and humility, this gratitude strengthened their professional resilience and trajectory and had a ripple effect on their personal lives, influencing familial relationships and broader societal interactions.ConclusionsThis is the first research focusing on clinicians' spontaneous expressions of gratitude. This study provides new insights into understanding the clinicians' intrinsic gratitude, its impact on their professional trajectory, and harnessing its potential benefits for broader community outreach. Through a reflective process incorporating gratitude, clinicians may be empowered to develop their self-coping mechanisms and nurture inner resilience while caring.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"89-98"},"PeriodicalIF":1.7,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143659728","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-15DOI: 10.1177/08258597251406805
Aleyna Şahintürk, Cemile Savci
ObjectiveCaregivers have a key role in the palliative care process. However, they need to cope with the challenges brought about by caregiving. Psychological resilience is an important concept for caregivers in coping with challenges. This study examined the relationship between psychological resilience and care burden among caregivers in palliative care settings.MethodsThis cross-sectional study was conducted with 120 caregivers in the palliative care clinic between December 2023 and May 2024 in Turkey. Data were collected using a personal information form, the Resilience Scale for Adults (RSA), and the Zarit Caregiver Burden Scale (ZCBS). Data were analyzed using descriptive statistics, Pearson's correlation coefficient, and simple and multiple linear regression analyses.ResultsThe mean total RSA score was 123.93 ± 14.00, which was above average. The mean total ZCBS score was 40.08 ± 11.79, and 47.5% of the caregivers had moderate levels of care burden. A negative statistically significant correlation was found between mean RSA and ZCBS scores (P < .01). Psychological resilience alone was a significant predictor of care burden (R2 = 0.096, P < .001). Psychological resilience, income status, and family/work/social roles and responsibilities were all statistically significant predictors of care burden (R2 = 0.285, P = .000).ConclusionsThe results of this study revealed that psychological resilience is important in the care burden perceived by caregivers in palliative care settings. Therefore, it is important for health professionals to incorporate interventions aimed at enhancing caregivers' psychological resilience into their programs.
目的护理人员在姑息治疗过程中起着关键作用。然而,他们需要应对照顾带来的挑战。心理弹性是照顾者应对挑战的一个重要概念。本研究考察了姑息治疗环境中护理人员的心理弹性与护理负担之间的关系。方法本横断面研究于2023年12月至2024年5月在土耳其姑息治疗诊所对120名护理人员进行。使用个人信息表、成人弹性量表(RSA)和Zarit照顾者负担量表(ZCBS)收集数据。数据分析采用描述性统计、Pearson相关系数、简单和多元线性回归分析。结果RSA总分平均为123.93±14.00分,高于平均水平。平均ZCBS总分为40.08±11.79分,47.5%的照顾者有中等程度的照顾负担。RSA均值与ZCBS评分呈显著负相关(P R2 = 0.096, P R2 = 0.285, P = 0.000)。结论本研究结果表明,心理弹性在姑息治疗环境中照顾者感知的护理负担中起重要作用。因此,对于卫生专业人员来说,将旨在提高护理人员心理弹性的干预措施纳入其计划是很重要的。
{"title":"Psychological Resilience and Care Burden Among Caregivers in Palliative Care Settings: A Cross-Sectional Study.","authors":"Aleyna Şahintürk, Cemile Savci","doi":"10.1177/08258597251406805","DOIUrl":"https://doi.org/10.1177/08258597251406805","url":null,"abstract":"<p><p>ObjectiveCaregivers have a key role in the palliative care process. However, they need to cope with the challenges brought about by caregiving. Psychological resilience is an important concept for caregivers in coping with challenges. This study examined the relationship between psychological resilience and care burden among caregivers in palliative care settings.MethodsThis cross-sectional study was conducted with 120 caregivers in the palliative care clinic between December 2023 and May 2024 in Turkey. Data were collected using a personal information form, the Resilience Scale for Adults (RSA), and the Zarit Caregiver Burden Scale (ZCBS). Data were analyzed using descriptive statistics, Pearson's correlation coefficient, and simple and multiple linear regression analyses.ResultsThe mean total RSA score was 123.93 ± 14.00, which was above average. The mean total ZCBS score was 40.08 ± 11.79, and 47.5% of the caregivers had moderate levels of care burden. A negative statistically significant correlation was found between mean RSA and ZCBS scores (<i>P</i> < .01). Psychological resilience alone was a significant predictor of care burden (<i>R</i><sup>2</sup> = 0.096, <i>P</i> < .001). Psychological resilience, income status, and family/work/social roles and responsibilities were all statistically significant predictors of care burden (<i>R</i><sup>2</sup> = 0.285, <i>P</i> = .000).ConclusionsThe results of this study revealed that psychological resilience is important in the care burden perceived by caregivers in palliative care settings. Therefore, it is important for health professionals to incorporate interventions aimed at enhancing caregivers' psychological resilience into their programs.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251406805"},"PeriodicalIF":1.7,"publicationDate":"2025-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145758299","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Objectives: Palliative care aims to improve the quality of life of both patients and their families who are facing serious illness. Family members, as the primary caregivers, often encounter multiple challenges when providing intensive care. The aim of this study was to explore the perspectives of family members as primary caregivers of palliative care for stroke patients in Indonesia. Methods: We conducted a qualitative phenomenological study, involving ten family caregivers of stroke patients receiving home-based care. Data were collected through semi-structured interviews and unstructured observations until data saturation were reached. Data analysis was conducted using Colaizzi's method, and the study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist. Results: We identified two main themes from the analysis. The first theme, The multifaceted impact of families as caregivers, reflects the physical, emotional, spiritual, financial, and social consequences experienced by caregivers. The second theme, Family as the primary source of support in Javanese culture, highlights the role of extended family support and child support within caregiving practices. Conclusion: Our study identifies the complex impacts faced by family caregivers in providing palliative care at home. The findings suggest that interprofessional healthcare teams should focus not only on the needs of patients but also on those of family caregivers. Furthermore, policies are needed to address these challenges to enhance the quality of life of both patients and their families.
{"title":"\"As Caregivers, We Also Need Someone Who Listens\": Family Perspectives on Providing Palliative Care for Stroke Patients.","authors":"Raditya Bagus Septian, Heny Suseani Pangastuti, Wenny Artanty Nisman","doi":"10.1177/08258597251407761","DOIUrl":"https://doi.org/10.1177/08258597251407761","url":null,"abstract":"<p><p><b>Objectives:</b> Palliative care aims to improve the quality of life of both patients and their families who are facing serious illness. Family members, as the primary caregivers, often encounter multiple challenges when providing intensive care. The aim of this study was to explore the perspectives of family members as primary caregivers of palliative care for stroke patients in Indonesia. <b>Methods:</b> We conducted a qualitative phenomenological study, involving ten family caregivers of stroke patients receiving home-based care. Data were collected through semi-structured interviews and unstructured observations until data saturation were reached. Data analysis was conducted using Colaizzi's method, and the study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist. <b>Results:</b> We identified two main themes from the analysis. The first theme, <i>The multifaceted impact of families as caregivers</i>, reflects the physical, emotional, spiritual, financial, and social consequences experienced by caregivers. The second theme, <i>Family as the primary source of support in Javanese culture</i>, highlights the role of extended family support and child support within caregiving practices. <b>Conclusion:</b> Our study identifies the complex impacts faced by family caregivers in providing palliative care at home. The findings suggest that interprofessional healthcare teams should focus not only on the needs of patients but also on those of family caregivers. Furthermore, policies are needed to address these challenges to enhance the quality of life of both patients and their families.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251407761"},"PeriodicalIF":1.7,"publicationDate":"2025-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145758327","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-11DOI: 10.1177/08258597251399025
Mai-Britt Guldin, Anna Jedzini Ogstrup, Brita Jørgensen, Vibeke Graven, Henrik Larsen
Objective(s)Numerous studies have tested support for informal caregivers to palliative care patients to prevent the risk of poor psychosocial and physical outcomes during caregiving and in bereavement. However, a literature search revealed that no systematic official clinical records are set up for informal caregiver care. This study aimed to develop a national recommendation for utilizing official clinical records for informal caregiver care by carrying out a Delphi study.MethodsThis study was undertaken as a national study in Denmark in specialized palliative care in accordance with Guidance on Conducting and Reporting Delphi Studies in palliative care, a consensus-building 3-round Delphi technique. A systematic literature review was performed to inform the drafting of 41 explorative statements, and clinical professionals in specialized palliative care evaluated statements using a 5-point Likert scale. Statements with >75% agreement were considered endorsed.ResultsConsensus was reached regarding the need for palliative care teams to document care provided to family caregivers in official medical records under the caregiver's own name rather than in the patient's medical records. In total, n = 240 responded to the Delphi Round I (48%) and N = 174 (34%) in Delphi Round II and n = 9 (100%) in Delphi Round III of clinical experts. Of the initial 41 statements, n = 16 statements reached 78-100% endorsement and comprised the final recommendations agreeing for instance that documentation of informal caregiver interventions must be carried out in accordance with the general guidelines for record keeping applicable for all healthcare professionals.ConclusionsInitiating official clinical records for informal caregivers has the possibility of bringing clarity, focus and emphasis on identifying caregiver's needs, providing better caregiver care, and more cohesive follow up on interventions in the healthcare system.
{"title":"Developing a National Recommendation for Clinical Recording of the Support of Informal Caregivers in Specialized Palliative Care: A Delphi Study.","authors":"Mai-Britt Guldin, Anna Jedzini Ogstrup, Brita Jørgensen, Vibeke Graven, Henrik Larsen","doi":"10.1177/08258597251399025","DOIUrl":"https://doi.org/10.1177/08258597251399025","url":null,"abstract":"<p><p>Objective(s)Numerous studies have tested support for informal caregivers to palliative care patients to prevent the risk of poor psychosocial and physical outcomes during caregiving and in bereavement. However, a literature search revealed that no systematic official clinical records are set up for informal caregiver care. This study aimed to develop a national recommendation for utilizing official clinical records for informal caregiver care by carrying out a Delphi study.MethodsThis study was undertaken as a national study in Denmark in specialized palliative care in accordance with Guidance on Conducting and Reporting Delphi Studies in palliative care, a consensus-building 3-round Delphi technique. A systematic literature review was performed to inform the drafting of 41 explorative statements, and clinical professionals in specialized palliative care evaluated statements using a 5-point Likert scale. Statements with >75% agreement were considered endorsed.ResultsConsensus was reached regarding the need for palliative care teams to document care provided to family caregivers in official medical records under the caregiver's own name rather than in the patient's medical records. In total, <i>n</i> = 240 responded to the Delphi Round I (48%) and <i>N</i> = 174 (34%) in Delphi Round II and <i>n</i> = 9 (100%) in Delphi Round III of clinical experts. Of the initial 41 statements, <i>n</i> = 16 statements reached 78-100% endorsement and comprised the final recommendations agreeing for instance that documentation of informal caregiver interventions must be carried out in accordance with the general guidelines for record keeping applicable for all healthcare professionals.ConclusionsInitiating official clinical records for informal caregivers has the possibility of bringing clarity, focus and emphasis on identifying caregiver's needs, providing better caregiver care, and more cohesive follow up on interventions in the healthcare system.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251399025"},"PeriodicalIF":1.7,"publicationDate":"2025-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145745585","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-10DOI: 10.1177/08258597251404106
Pin Pin Sandy Choi, Ka Man Chan, Le Bing Yu
BackgroundPrior studies have outlined the roles and functions of palliative care nurses, yet a gap exists in understanding their lived experiences in delivering humanistic care. These nurses establish deep connections with patients and families, encountering emotional distress while witnessing their suffering. This emotional strain frequently leads to compassion fatigue and burnout. The purpose of this study was to explore humanistic nursing practices and the dilemmas faced by palliative care nurses in providing humanistic care.MethodsA descriptive phenomenological approach was employed. Individual semi-structured interviews were conducted with 17 palliative care nurses working in Hong Kong, selected through snowball sampling. They shared their lived experiences of providing humanistic care in palliative settings, and the findings were analyzed using van Kaam's control explication method.ResultsPalliative care nurses shared both positive and negative experiences in their humanistic interactions with patients and families. They emphasized the profound influence of their care on preserving dignity and easing suffering while encountering challenges in forming meaningful connections amidst constraints such as heavy workloads that impede compassionate engagement. Four themes emerged, showcasing dilemmas confronted by nurses: juggling between "creating bonds" versus "maintaining distance," choosing to "treasuring life more" versus "giving up life more easily," balancing "patients' interests" versus "families' interests," and weighing "patient rights" versus "public interest." The findings highlighted the emotional complexities and burdens associated with providing humanistic care.ConclusionsThe findings illuminated the existential dimensions of humanistic nurse-patient interactions within Paterson and Zderad's theory, revealing key elements such as genuine presence, authentic self-awareness, and realizing caregiving potential. They underscored the need for better support for palliative care nurses, emphasizing improved education and practice to navigate complexities and deepen understanding of humanistic nursing principles.
{"title":"The Dilemma of Palliative Care Nurses: A Phenomenological Inquiry Into Their Lived Experience With Humanistic Care.","authors":"Pin Pin Sandy Choi, Ka Man Chan, Le Bing Yu","doi":"10.1177/08258597251404106","DOIUrl":"https://doi.org/10.1177/08258597251404106","url":null,"abstract":"<p><p>BackgroundPrior studies have outlined the roles and functions of palliative care nurses, yet a gap exists in understanding their lived experiences in delivering humanistic care. These nurses establish deep connections with patients and families, encountering emotional distress while witnessing their suffering. This emotional strain frequently leads to compassion fatigue and burnout. The purpose of this study was to explore humanistic nursing practices and the dilemmas faced by palliative care nurses in providing humanistic care.MethodsA descriptive phenomenological approach was employed. Individual semi-structured interviews were conducted with 17 palliative care nurses working in Hong Kong, selected through snowball sampling. They shared their lived experiences of providing humanistic care in palliative settings, and the findings were analyzed using van Kaam's control explication method.ResultsPalliative care nurses shared both positive and negative experiences in their humanistic interactions with patients and families. They emphasized the profound influence of their care on preserving dignity and easing suffering while encountering challenges in forming meaningful connections amidst constraints such as heavy workloads that impede compassionate engagement. Four themes emerged, showcasing dilemmas confronted by nurses: juggling between \"creating bonds\" versus \"maintaining distance,\" choosing to \"treasuring life more\" versus \"giving up life more easily,\" balancing \"patients' interests\" versus \"families' interests,\" and weighing \"patient rights\" versus \"public interest.\" The findings highlighted the emotional complexities and burdens associated with providing humanistic care.ConclusionsThe findings illuminated the existential dimensions of humanistic nurse-patient interactions within Paterson and Zderad's theory, revealing key elements such as genuine presence, authentic self-awareness, and realizing caregiving potential. They underscored the need for better support for palliative care nurses, emphasizing improved education and practice to navigate complexities and deepen understanding of humanistic nursing principles.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251404106"},"PeriodicalIF":1.7,"publicationDate":"2025-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145716760","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-09DOI: 10.1177/08258597251389268
Thuy Hong Nguyen, Ming-Hsin Hsieh, Tsai-Hsiu Chang
ObjectivesTo assess undergraduate nursing students' knowledge, attitudes, and self-efficacy toward palliative care, and to identify key predictors of self-efficacy in Vietnam.MethodsThis cross-sectional study recruited 120 undergraduate nursing students from a university in southern Vietnam between June and July 2024. Vietnamese versions of 3 validated instruments were used to measure students' palliative knowledge (Palliative Care Knowledge Test), attitude (Frommelt Attitude Toward Care of the Dying Scale - Form B), and self-efficacy (Palliative Care Self - Efficacy Scale). Multiple regression analysis was conducted to identify key predictors of self-efficacy.ResultsThe mean scores among undergraduate nursing students were 11.86 ± 2.40 out of 22 for palliative care knowledge, 103.58 ± 7.21 out of 150 for attitude, and 22.86 ± 6.02 out of 48 for self-efficacy. These results indicated a good level of knowledge, a generally positive attitude, and a low level of self-efficacy toward palliative care. A positive correlation was found among knowledge, attitude, and self-efficacy toward palliative care. Knowledge was identified as a significant predictor of self-efficacy, explained 25.3% of the total variance.ConclusionsPalliative care knowledge significantly predicted self-efficacy among undergraduate nursing students. Enhancing knowledge may serve as an effective strategy to strengthen their confidence in providing palliative care. Future interventions should address area of limited knowledge to improve overall self-efficacy.
{"title":"Undergraduate Nursing Students' Knowledge, Attitudes, and Self-Efficacy Toward Palliative Care in Vietnam: A Cross-Sectional Study.","authors":"Thuy Hong Nguyen, Ming-Hsin Hsieh, Tsai-Hsiu Chang","doi":"10.1177/08258597251389268","DOIUrl":"https://doi.org/10.1177/08258597251389268","url":null,"abstract":"<p><p>ObjectivesTo assess undergraduate nursing students' knowledge, attitudes, and self-efficacy toward palliative care, and to identify key predictors of self-efficacy in Vietnam.MethodsThis cross-sectional study recruited 120 undergraduate nursing students from a university in southern Vietnam between June and July 2024. Vietnamese versions of 3 validated instruments were used to measure students' palliative knowledge (Palliative Care Knowledge Test), attitude (Frommelt Attitude Toward Care of the Dying Scale - Form B), and self-efficacy (Palliative Care Self - Efficacy Scale). Multiple regression analysis was conducted to identify key predictors of self-efficacy.ResultsThe mean scores among undergraduate nursing students were 11.86 ± 2.40 out of 22 for palliative care knowledge, 103.58 ± 7.21 out of 150 for attitude, and 22.86 ± 6.02 out of 48 for self-efficacy. These results indicated a good level of knowledge, a generally positive attitude, and a low level of self-efficacy toward palliative care. A positive correlation was found among knowledge, attitude, and self-efficacy toward palliative care. Knowledge was identified as a significant predictor of self-efficacy, explained 25.3% of the total variance.ConclusionsPalliative care knowledge significantly predicted self-efficacy among undergraduate nursing students. Enhancing knowledge may serve as an effective strategy to strengthen their confidence in providing palliative care. Future interventions should address area of limited knowledge to improve overall self-efficacy.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251389268"},"PeriodicalIF":1.7,"publicationDate":"2025-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145709908","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-24DOI: 10.1177/08258597251398132
Chan Shen, Mohammad Ikram, Shouhao Zhou, Roger Klein, James Douglas Thornton, Douglas Leslie
ObjectiveLung cancer is the leading cause of cancer mortality in the USA, and terminal patients endure severe pain. In October 2014, hydrocodone was rescheduled from Schedule III to Schedule II to curb misuse, yet its specific impact on end-of-life lung cancer pain management remains unclear. The objective of this study is to evaluate the impact of hydrocodone rescheduling on pharmaceutical pain management among end-of-life lung cancer patients in the USA.MethodsWe conducted a retrospective study using SEER-Medicare data including 24,804 patients aged ≥66 with stage IV lung cancer who died between 2011 and 2019. We examined hydrocodone, opioid, NSAID, and antidepressant use in the last three months of life and used multivariable logistic and OLS regression to assess the effects of hydrocodone rescheduling and time trends, adjusting for demographic and clinical factors.ResultsHydrocodone was used by 47.5% of patients and any opioids by 75.4%. Although the hydrocodone rescheduling showed a nonsignificant immediate reduction in use (AOR = 0.92, p = .0795) and dosages (estimate = -1.78 MME, p = .358), significant declining trends were observed over time for hydrocodone (AOR = 0.92 per 12 months, p < .001; -1.15 MME per 12 months, p = .003) and overall opioids (AOR = 0.94 per 12 months, p < .001; -2.44 MME per 12 months, p = .002). NSAIDs and antidepressants use remained stable.ConclusionOur study is the first to examine hydrocodone rescheduling's impact on pain management in end-of-life lung cancer care. While no immediate significant changes were observed, the overall decline in opioid use over time reflects broader clinical and regulatory shifts, highlighting the need for balanced, multimodal pain management strategies.
{"title":"Impact of Hydrocodone Rescheduling on Pharmaceutical Pain Management in End-of-Life Lung Cancer Patients.","authors":"Chan Shen, Mohammad Ikram, Shouhao Zhou, Roger Klein, James Douglas Thornton, Douglas Leslie","doi":"10.1177/08258597251398132","DOIUrl":"https://doi.org/10.1177/08258597251398132","url":null,"abstract":"<p><p>ObjectiveLung cancer is the leading cause of cancer mortality in the USA, and terminal patients endure severe pain. In October 2014, hydrocodone was rescheduled from Schedule III to Schedule II to curb misuse, yet its specific impact on end-of-life lung cancer pain management remains unclear. The objective of this study is to evaluate the impact of hydrocodone rescheduling on pharmaceutical pain management among end-of-life lung cancer patients in the USA.MethodsWe conducted a retrospective study using SEER-Medicare data including 24,804 patients aged ≥66 with stage IV lung cancer who died between 2011 and 2019. We examined hydrocodone, opioid, NSAID, and antidepressant use in the last three months of life and used multivariable logistic and OLS regression to assess the effects of hydrocodone rescheduling and time trends, adjusting for demographic and clinical factors.ResultsHydrocodone was used by 47.5% of patients and any opioids by 75.4%. Although the hydrocodone rescheduling showed a nonsignificant immediate reduction in use (AOR = 0.92, <i>p =</i> .0795) and dosages (estimate = -1.78 MME, <i>p =</i> .358), significant declining trends were observed over time for hydrocodone (AOR = 0.92 per 12 months, <i>p <</i> .001; -1.15 MME per 12 months, <i>p =</i> .003) and overall opioids (AOR = 0.94 per 12 months, <i>p <</i> .001; -2.44 MME per 12 months, <i>p =</i> .002). NSAIDs and antidepressants use remained stable.ConclusionOur study is the first to examine hydrocodone rescheduling's impact on pain management in end-of-life lung cancer care. While no immediate significant changes were observed, the overall decline in opioid use over time reflects broader clinical and regulatory shifts, highlighting the need for balanced, multimodal pain management strategies.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597251398132"},"PeriodicalIF":1.7,"publicationDate":"2025-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145597996","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}