Pub Date : 2021-10-03DOI: 10.1080/09699260.2021.1980649
Anica Pless Kaiser, Kelly O'Malley, Jennifer Moye, Anna G Etchin, Lynn Korsun, Rachel Weiskittle, Hannah Bashian, Katherine Kemp, Zachary S Sager
At the end of life, individuals may re-engage with earlier life trauma as they reflect on life experiences and confront their mortality. As such, posttraumatic stress disorder (PTSD) symptoms at the end of life may worsen the quality of death experience. This is a concern for military veterans, who tend to have more trauma exposures and higher rates of PTSD, and particularly for veterans receiving care in rural areas where access to PTSD specialty services is limited. To better understand this issue, we conducted 10 focus groups with clinicians serving veterans in rural communities across five U.S. states. The aims of this project were to evaluate: (1) do hospice and palliative care providers/staff observe PTSD symptoms in veterans at the end of life? (2) if so, how are symptoms similar to and different from existing DSM-5 criteria for PTSD? We used qualitative content analysis with mixed deductive and inductive approaches to code 151 anonymized statements. Analyses found descriptions of PTSD symptoms aligned broadly with existing diagnostic nomenclature, but descriptions revealed specific presentations relevant to the end of life setting such as resistance to care, agitation, restlessness, and effects of delirium. In addition, some veterans expressed pride in service and openness to discussing military experiences. Further, clinicians noted that PTSD symptoms were relevant to family dynamics. Future research should further characterize these symptom differences through direct patient assessment and develop resources to improve quality of death experience for veterans with PTSD symptoms.
{"title":"Hospice and palliative care clinicians' perceptions of posttraumatic stress disorder at end-of-life in military veterans.","authors":"Anica Pless Kaiser, Kelly O'Malley, Jennifer Moye, Anna G Etchin, Lynn Korsun, Rachel Weiskittle, Hannah Bashian, Katherine Kemp, Zachary S Sager","doi":"10.1080/09699260.2021.1980649","DOIUrl":"10.1080/09699260.2021.1980649","url":null,"abstract":"<p><p>At the end of life, individuals may re-engage with earlier life trauma as they reflect on life experiences and confront their mortality. As such, posttraumatic stress disorder (PTSD) symptoms at the end of life may worsen the quality of death experience. This is a concern for military veterans, who tend to have more trauma exposures and higher rates of PTSD, and particularly for veterans receiving care in rural areas where access to PTSD specialty services is limited. To better understand this issue, we conducted 10 focus groups with clinicians serving veterans in rural communities across five U.S. states. The aims of this project were to evaluate: (1) do hospice and palliative care providers/staff observe PTSD symptoms in veterans at the end of life? (2) if so, how are symptoms similar to and different from existing DSM-5 criteria for PTSD? We used qualitative content analysis with mixed deductive and inductive approaches to code 151 anonymized statements. Analyses found descriptions of PTSD symptoms aligned broadly with existing diagnostic nomenclature, but descriptions revealed specific presentations relevant to the end of life setting such as resistance to care, agitation, restlessness, and effects of delirium. In addition, some veterans expressed pride in service and openness to discussing military experiences. Further, clinicians noted that PTSD symptoms were relevant to family dynamics. Future research should further characterize these symptom differences through direct patient assessment and develop resources to improve quality of death experience for veterans with PTSD symptoms.</p>","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"1-7"},"PeriodicalIF":1.7,"publicationDate":"2021-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9047186/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48627008","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-03DOI: 10.1080/09699260.2021.1981566
Mu'taz Dreidi, Intima Alrimawi, Maha Atout
Background Cancer is the second most fatal disease in the world, following cardiac diseases. Throughout the cancer trajectory, patients experience symptom clusters and malnutrition. Both affect the quality of life for these patients. Limited studies had focused on these issues in Palestine. Purpose This study aims to assess and evaluate the relationships between multiple symptoms, altered nutritional status, and their effects on the quality of life of patients diagnosed with cancer in Palestine. Methods An explorative cross-sectional study was conducted to collect data from 120 patients with cancer. Results Fatigue, dry mouth, and pain were the most prevalent symptoms experienced by participants with mean scores of 5.5, 4.9, and 4.5 respectively. For the quality of life, general activity and work were the worst variables experienced by patients. More than half of the patients were malnourished (53%). Nutritional status was significantly correlated and predicted most of the symptoms and quality of life dimensions (P < 0.05). Conclusion The current study highlighted the importance of symptom clusters in cancer, quality of life, and nutritional status. It also focused on nutritional status as an essential factor and critical predictor that may affect and correlate with the worst symptom clusters and low quality of life. Implication Symptom clusters and malnutrition predict the poor quality of life among Palestinian oncology patients. Therefore, symptom clusters and nutritional status should be taken into consideration at an earlier stage in the nursing care plan, and in the oncology assessment guidelines in Palestine.
{"title":"Evaluating the relationships between multiple symptoms; altered nutritional status, and their effects on the quality of life of patients diagnosed with cancer in Palestine: an explorative study","authors":"Mu'taz Dreidi, Intima Alrimawi, Maha Atout","doi":"10.1080/09699260.2021.1981566","DOIUrl":"https://doi.org/10.1080/09699260.2021.1981566","url":null,"abstract":"Background Cancer is the second most fatal disease in the world, following cardiac diseases. Throughout the cancer trajectory, patients experience symptom clusters and malnutrition. Both affect the quality of life for these patients. Limited studies had focused on these issues in Palestine. Purpose This study aims to assess and evaluate the relationships between multiple symptoms, altered nutritional status, and their effects on the quality of life of patients diagnosed with cancer in Palestine. Methods An explorative cross-sectional study was conducted to collect data from 120 patients with cancer. Results Fatigue, dry mouth, and pain were the most prevalent symptoms experienced by participants with mean scores of 5.5, 4.9, and 4.5 respectively. For the quality of life, general activity and work were the worst variables experienced by patients. More than half of the patients were malnourished (53%). Nutritional status was significantly correlated and predicted most of the symptoms and quality of life dimensions (P < 0.05). Conclusion The current study highlighted the importance of symptom clusters in cancer, quality of life, and nutritional status. It also focused on nutritional status as an essential factor and critical predictor that may affect and correlate with the worst symptom clusters and low quality of life. Implication Symptom clusters and malnutrition predict the poor quality of life among Palestinian oncology patients. Therefore, symptom clusters and nutritional status should be taken into consideration at an earlier stage in the nursing care plan, and in the oncology assessment guidelines in Palestine.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"221 - 228"},"PeriodicalIF":1.7,"publicationDate":"2021-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46133953","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-09-24DOI: 10.1080/09699260.2021.1961985
Rana Yamout, Janane Hanna, R. El Asmar, Hanadi Beydoun, Mira Rahm, H. Osman
The preferred place of death of patients with terminal illness is a universal topic. Numerous international studies exist. The present narrative literature review aims to examine the preferred place of death for patients with terminal illness and to highlight the factors that play a role in their decision. The search for studies was conducted through PubMed, EBSCO, Ovid, and Cochrane Library databases. Results revealed the home as the preferred place of death of most patients, followed by the hospital and the hospice or nursing homes or the palliative care units. Among the factors affecting the preference for place of death were the support of the family caregiver, the feeling of being a burden to others, and the quality of the relationship with healthcare providers. Discrepancies emerged between the preferred place of death and the actual place of death. Further research is needed to explain this discrepancy.
{"title":"Preferred place of death for patients with terminal illness: A literature review","authors":"Rana Yamout, Janane Hanna, R. El Asmar, Hanadi Beydoun, Mira Rahm, H. Osman","doi":"10.1080/09699260.2021.1961985","DOIUrl":"https://doi.org/10.1080/09699260.2021.1961985","url":null,"abstract":"The preferred place of death of patients with terminal illness is a universal topic. Numerous international studies exist. The present narrative literature review aims to examine the preferred place of death for patients with terminal illness and to highlight the factors that play a role in their decision. The search for studies was conducted through PubMed, EBSCO, Ovid, and Cochrane Library databases. Results revealed the home as the preferred place of death of most patients, followed by the hospital and the hospice or nursing homes or the palliative care units. Among the factors affecting the preference for place of death were the support of the family caregiver, the feeling of being a burden to others, and the quality of the relationship with healthcare providers. Discrepancies emerged between the preferred place of death and the actual place of death. Further research is needed to explain this discrepancy.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"101 - 110"},"PeriodicalIF":1.7,"publicationDate":"2021-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44936966","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-09-19DOI: 10.1080/09699260.2021.1972722
Kate Diggory, A. Reeves
Background Informal carers of someone with a life-limiting or terminal illness often experience marked levels of depression, anxiety and stress. Carers have limited free time to devote to lengthy, well-being interventions. Carers also struggle to prioritize their self-care, a factor which may help buffer some of the negative impacts of being a carer. The aim of this study was to gain insight into carers’ views and perceptions of a brief, four session face to face self-compassion intervention for carers (iCare) which was created to improve well-being, increase self-compassion and develop self-care among carers. In so doing, this qualitative research addresses gaps in the literature relating to self-compassion interventions for carers and targeted self-care initiatives for carers. Method Semi-structured interviews with nine participants of iCare were conducted and data subjected to a reflexive thematic analysis within a critical realist framework. Findings A number of themes and sub-themes were identified. Carers discovered a kinder, less judgemental way of seeing themselves allowing themselves to recognize that they had their own individual needs. In turn this led to an intentional practise of self-care activities. Benefits from conscious self-care and self-kindness included experiencing a greater sense of calm or relaxation and the development of a more positive outlook. Conclusion The findings highlight that a brief self-compassion intervention can have a positive impact on carers reported well-being through developing a kindlier internal orientation and locating a permission to allow themselves to practise an intentional self-care.
{"title":"‘Permission to be kind to myself’. The experiences of informal carers of those with a life-limiting or terminal illness of a brief self-compassion-based self-care intervention","authors":"Kate Diggory, A. Reeves","doi":"10.1080/09699260.2021.1972722","DOIUrl":"https://doi.org/10.1080/09699260.2021.1972722","url":null,"abstract":"Background Informal carers of someone with a life-limiting or terminal illness often experience marked levels of depression, anxiety and stress. Carers have limited free time to devote to lengthy, well-being interventions. Carers also struggle to prioritize their self-care, a factor which may help buffer some of the negative impacts of being a carer. The aim of this study was to gain insight into carers’ views and perceptions of a brief, four session face to face self-compassion intervention for carers (iCare) which was created to improve well-being, increase self-compassion and develop self-care among carers. In so doing, this qualitative research addresses gaps in the literature relating to self-compassion interventions for carers and targeted self-care initiatives for carers. Method Semi-structured interviews with nine participants of iCare were conducted and data subjected to a reflexive thematic analysis within a critical realist framework. Findings A number of themes and sub-themes were identified. Carers discovered a kinder, less judgemental way of seeing themselves allowing themselves to recognize that they had their own individual needs. In turn this led to an intentional practise of self-care activities. Benefits from conscious self-care and self-kindness included experiencing a greater sense of calm or relaxation and the development of a more positive outlook. Conclusion The findings highlight that a brief self-compassion intervention can have a positive impact on carers reported well-being through developing a kindlier internal orientation and locating a permission to allow themselves to practise an intentional self-care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"149 - 157"},"PeriodicalIF":1.7,"publicationDate":"2021-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42886640","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-09-03DOI: 10.1080/09699260.2021.1976951
Jason Mills, Sun-Hyun Kim, H. Chan, Mu-Hsing Ho, J. Montayre, Megan F. Liu, Chia-chin Lin
While access to palliative care is recognized internationally as a human right, from a global health perspective, there are many gaps within the professional services that provide palliative care together with corresponding health inequities for people needing to access palliative care. Palliative care development, or the building and expansion of palliative care services, represents a key strategy in addressing those gaps and health inequities. The development of palliative care depends on various factors including healthcare services and their provision of clinical care, as well as education, research and ongoing professional development activities in accordance with guidelines and policies across different countries and regions. As is the case with many regions across the globe, there is a need to further develop and promote access to quality hospice and palliative care in the Asia Pacific – reaching out to work in partnership together with communities and ensuring that their needs are met in a way that is equitable. One of the key components of palliative care development is the education of healthcare professionals, policymakers, and the public. A past survey of member countries from the Asia Pacific Hospice Network found that although care services were generally well developed in Australia, New Zealand, Singapore, Malaysia, Hong Kong, Japan, South Korea, and Taiwan, there was a need to strengthen palliative care education for healthcare providers. In this context and following the publication of the second Global Atlas of Palliative Care, the University of Hong Kong together with the Health Promotion Administration, Ministry of Health and Welfare in Taiwan and Taipei Medical University, collaborated to host an online symposium with a broad focus on the Transition of Palliative Care Development in the Asia Pacific Region. In May 2021, a virtual gathering of international palliative care experts from the Asia Pacific came together via webinar to discuss, more specifically, palliative care education as an important component of palliative care development in the Asia Pacific Region. After a formal introduction from Prof. Chia-Chin Lin at the University of Hong Kong, expert contributions and interactive discussion with other participants were facilitated by Assoc. Prof. Megan F. Liu. from Taipei Medical University. Experiences of and perspectives on palliative care education were shared by contributors from Australia, Hong Kong, South Korea and Japan. In Australia, the National Palliative Care Strategy has, since its inception as a policy framework in 2000, delivered significant funding for national projects such as the Palliative Care Curriculum for Undergraduates that has provided an online palliative care education resource for multidisciplinary healthcare students and educators. However, the extent to which its palliative care content is integrated within curricula is largely unknown and likely to be inconsistent across the higher educatio
虽然获得姑息治疗在国际上被公认为一项人权，但从全球健康的角度来看，提供姑息治疗的专业服务存在许多差距，同时也存在着对需要获得姑息治疗的人的相应健康不平等。姑息治疗发展，或建立和扩大姑息治疗服务，是解决这些差距和健康不平等问题的一项关键战略。姑息治疗的发展取决于各种因素，包括医疗服务及其临床护理的提供，以及根据不同国家和地区的指导方针和政策进行的教育、研究和持续的专业发展活动。与全球许多地区的情况一样，有必要在亚太地区进一步发展和促进获得优质临终关怀和姑息治疗的机会——与社区合作，确保以公平的方式满足他们的需求。姑息治疗发展的关键组成部分之一是对医疗专业人员、政策制定者和公众的教育。亚太临终关怀网络过去对成员国进行的一项调查发现，尽管澳大利亚、新西兰、新加坡、马来西亚、香港、日本、韩国和台湾的护理服务普遍发展良好，但仍有必要加强医疗保健提供者的姑息治疗教育。在这方面，在第二本全球姑息治疗地图集出版后，香港大学与台湾卫生福利部和台北医科大学合作举办了一次网上研讨会，广泛关注亚太地区姑息治疗发展的转型。2021年5月，来自亚太地区的国际姑息治疗专家通过网络研讨会举行了一次虚拟聚会，更具体地讨论了姑息治疗教育作为亚太地区姑息治疗发展的重要组成部分。在香港大学林嘉钦教授的正式介绍下，刘副教授促成了专家的贡献和与其他参与者的互动讨论。来自台北医科大学。来自澳大利亚、香港、韩国和日本的贡献者分享了姑息治疗教育的经验和观点。在澳大利亚，国家姑息治疗战略自2000年作为一个政策框架成立以来，为国家项目提供了大量资金，如本科生姑息治疗课程，该课程为多学科医疗保健学生和教育工作者提供了在线姑息治疗教育资源。然而，它的姑息治疗内容在多大程度上被纳入课程中，这在很大程度上是未知的，而且可能在选择实施它的高等教育提供者中不一致。虽然一些大学在护理学士课程中提供姑息治疗教育作为选修科目，大多数都不提供任何离散的研究单位和专注于姑息治疗的正式评估。其他大学，如澳大利亚托伦斯大学，通过合作创新率先开发了一门为期12周的强制性姑息治疗和生命限制条件课程；阳光海岸大学（University of the Sunshine Coast）也走上了类似的道路，为护理专业的学生开设了为期8周的临终关怀必修课程。随着时间的推移，本科医学教育的姑息治疗内容不断发展和加强，澳大利亚皇家医学院澳大利亚姑息医学分会通过其姑息医学高级培训课程或姑息医学临床文凭课程提供了全面的研究生专业培训选项。姑息治疗研究生奖学金
{"title":"Palliative care education in the Asia Pacific: Challenges and progress towards palliative care development","authors":"Jason Mills, Sun-Hyun Kim, H. Chan, Mu-Hsing Ho, J. Montayre, Megan F. Liu, Chia-chin Lin","doi":"10.1080/09699260.2021.1976951","DOIUrl":"https://doi.org/10.1080/09699260.2021.1976951","url":null,"abstract":"While access to palliative care is recognized internationally as a human right, from a global health perspective, there are many gaps within the professional services that provide palliative care together with corresponding health inequities for people needing to access palliative care. Palliative care development, or the building and expansion of palliative care services, represents a key strategy in addressing those gaps and health inequities. The development of palliative care depends on various factors including healthcare services and their provision of clinical care, as well as education, research and ongoing professional development activities in accordance with guidelines and policies across different countries and regions. As is the case with many regions across the globe, there is a need to further develop and promote access to quality hospice and palliative care in the Asia Pacific – reaching out to work in partnership together with communities and ensuring that their needs are met in a way that is equitable. One of the key components of palliative care development is the education of healthcare professionals, policymakers, and the public. A past survey of member countries from the Asia Pacific Hospice Network found that although care services were generally well developed in Australia, New Zealand, Singapore, Malaysia, Hong Kong, Japan, South Korea, and Taiwan, there was a need to strengthen palliative care education for healthcare providers. In this context and following the publication of the second Global Atlas of Palliative Care, the University of Hong Kong together with the Health Promotion Administration, Ministry of Health and Welfare in Taiwan and Taipei Medical University, collaborated to host an online symposium with a broad focus on the Transition of Palliative Care Development in the Asia Pacific Region. In May 2021, a virtual gathering of international palliative care experts from the Asia Pacific came together via webinar to discuss, more specifically, palliative care education as an important component of palliative care development in the Asia Pacific Region. After a formal introduction from Prof. Chia-Chin Lin at the University of Hong Kong, expert contributions and interactive discussion with other participants were facilitated by Assoc. Prof. Megan F. Liu. from Taipei Medical University. Experiences of and perspectives on palliative care education were shared by contributors from Australia, Hong Kong, South Korea and Japan. In Australia, the National Palliative Care Strategy has, since its inception as a policy framework in 2000, delivered significant funding for national projects such as the Palliative Care Curriculum for Undergraduates that has provided an online palliative care education resource for multidisciplinary healthcare students and educators. However, the extent to which its palliative care content is integrated within curricula is largely unknown and likely to be inconsistent across the higher educatio","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"251 - 254"},"PeriodicalIF":1.7,"publicationDate":"2021-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48985906","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-08-27DOI: 10.1080/09699260.2021.1965776
Alicia Callisto, L. Leong, G. Crawford
Background: In Australia, an aging population has intensified demand on residential aged care facilities, hospitals and palliative care services for end-of-life care. The likelihood of home death for cancer patients in South Australia has remained below 14%. Objectives: This research aims to investigate predictors for community death and preferred place of death of patients registered with an Australian community adult specialist palliative care service (SPCS). Methods: A consecutive cohort retrospective medical records and electronic database review of all referred patients who died between 1st January and 30th June 2017 was undertaken. Results: There were 456 registered patients who died in this period. The 62 rural patients and 32 patients with missing medical records were excluded. Of the remaining 362 patients, 62 did not have community face-to-face contact and were excluded. Of the 300 patients eligible, there were 143 females and mean age was 71 years. This study revealed an overall community death rate (private home and residential aged care facility) of 31.3% compared with private home death rate of 17%. There were two important predictors of community death. Firstly, family/caregiver preferred place of death had a far greater impact on likelihood of community death than patient preferred place of death. Secondly, the intensity of input from the whole palliative care team, in particular, community face-to-face visits and more specifically by nurses, were major predictors. Conclusion: Investing in community-based SPCSs may not only better support patient and family/caregiver preferences, and increase rates of community death but also reduces hospitalisation costs.
{"title":"Predictors of community death in an Australian specialist palliative care service","authors":"Alicia Callisto, L. Leong, G. Crawford","doi":"10.1080/09699260.2021.1965776","DOIUrl":"https://doi.org/10.1080/09699260.2021.1965776","url":null,"abstract":"Background: In Australia, an aging population has intensified demand on residential aged care facilities, hospitals and palliative care services for end-of-life care. The likelihood of home death for cancer patients in South Australia has remained below 14%. Objectives: This research aims to investigate predictors for community death and preferred place of death of patients registered with an Australian community adult specialist palliative care service (SPCS). Methods: A consecutive cohort retrospective medical records and electronic database review of all referred patients who died between 1st January and 30th June 2017 was undertaken. Results: There were 456 registered patients who died in this period. The 62 rural patients and 32 patients with missing medical records were excluded. Of the remaining 362 patients, 62 did not have community face-to-face contact and were excluded. Of the 300 patients eligible, there were 143 females and mean age was 71 years. This study revealed an overall community death rate (private home and residential aged care facility) of 31.3% compared with private home death rate of 17%. There were two important predictors of community death. Firstly, family/caregiver preferred place of death had a far greater impact on likelihood of community death than patient preferred place of death. Secondly, the intensity of input from the whole palliative care team, in particular, community face-to-face visits and more specifically by nurses, were major predictors. Conclusion: Investing in community-based SPCSs may not only better support patient and family/caregiver preferences, and increase rates of community death but also reduces hospitalisation costs.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"163 - 170"},"PeriodicalIF":1.7,"publicationDate":"2021-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44411405","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-08-22DOI: 10.1080/09699260.2021.1964678
S. Vanderstichelen, L. Pelttari, R. Scott
The European Association for Palliative Care (EAPC) Madrid Charter on volunteering in hospice and palliative care (HPC) was launched in 2017 to advocate for the support, recognition, promotion and development of volunteering in HPC. However, charters are rarely evaluated, and impact often assumed a priori. To evaluate whether such declarations influence change, we must understand their reach and use. We aimed to assess the awareness, reach and impact of the EAPC Madrid Charter on HPC Volunteering in Europe and evaluate its potential as an advocacy tool in HPC. An online survey questionnaire including open and closed questions, was sent to a convenience sample of all 55 EAPC member organizations, other regional and national European HPC and HPC volunteering organizations. Forty-six responses were received from 11 countries. The Charter mainly spread through word of mouth (72%). Sixty-four per cent of respondents had heard of the Charter; of these 80% had signed it but only 30% had used it. Directors used the Charter in policy documents (70%). Volunteer coordinators had used it in various ways (57%). Most general coordinators (83%) found no use for the Charter. Feedback from participants indicated a lack of practical applications. The Charter was considered useful for policy negotiation but lacking practical applications to support HPC volunteering in the short term. Charters may be tools for long-term change, rather than immediate change in practice. A multipronged approach may be required where Charters are complemented by practical instruments.
{"title":"Evaluating the EAPC Madrid Charter on volunteering in hospice and palliative care: Reflections on impact","authors":"S. Vanderstichelen, L. Pelttari, R. Scott","doi":"10.1080/09699260.2021.1964678","DOIUrl":"https://doi.org/10.1080/09699260.2021.1964678","url":null,"abstract":"The European Association for Palliative Care (EAPC) Madrid Charter on volunteering in hospice and palliative care (HPC) was launched in 2017 to advocate for the support, recognition, promotion and development of volunteering in HPC. However, charters are rarely evaluated, and impact often assumed a priori. To evaluate whether such declarations influence change, we must understand their reach and use. We aimed to assess the awareness, reach and impact of the EAPC Madrid Charter on HPC Volunteering in Europe and evaluate its potential as an advocacy tool in HPC. An online survey questionnaire including open and closed questions, was sent to a convenience sample of all 55 EAPC member organizations, other regional and national European HPC and HPC volunteering organizations. Forty-six responses were received from 11 countries. The Charter mainly spread through word of mouth (72%). Sixty-four per cent of respondents had heard of the Charter; of these 80% had signed it but only 30% had used it. Directors used the Charter in policy documents (70%). Volunteer coordinators had used it in various ways (57%). Most general coordinators (83%) found no use for the Charter. Feedback from participants indicated a lack of practical applications. The Charter was considered useful for policy negotiation but lacking practical applications to support HPC volunteering in the short term. Charters may be tools for long-term change, rather than immediate change in practice. A multipronged approach may be required where Charters are complemented by practical instruments.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"141 - 148"},"PeriodicalIF":1.7,"publicationDate":"2021-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41783688","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-08-17DOI: 10.1080/09699260.2021.1963175
Yen Ching Siow, M. Cheong, Kai Siang Lim, Santelaksmii Mahalinggam, Cindy Cy Oun Teoh
Background Governments have an obligation to provide palliative care as a part of achieving Universal Health Coverage. This obligation to provide palliative care has grown significantly due to the immense suffering caused by the COVID-19 pandemic to patients and their carers. The successful delivery of palliative care, however, requires a healthcare workforce that is trained to provide palliative care at all levels. It is especially important to be able to train healthcare workers in basic-level palliative care to expand the health system’s capacity to provide palliative care. Objectives The aim of this study is to evaluate the effectiveness of this training programme on the participants’ interest and knowledge in palliative care, and their preparedness to deliver basic-level palliative care. Methods We developed a novel training programme for basic palliative care using didactic and participatory learning methods, along with a mentoring system. The programme was delivered over 6 months. 38 physicians were trained. A survey to evaluate the participants’ interest and knowledge of palliative care, as well as their preparedness to provide palliative care was conducted at 3 timepoints – pre-training, post-training, and 3 months post-training. Results Improvements in the interest (4.05 vs 4.24, p<0.05) and knowledge of palliative care (83.05 vs 93.10, p<0.001), and the preparedness to provide various aspects of palliative care were observed post-training. These improvements were sustained after 3 months post-training. Conclusions A training programme using didactic and participatory learning methods, along with a mentor-mentee system can be effective in training physicians to provide basic-level palliative care.
作为实现全民健康覆盖的一部分，各国政府有义务提供姑息治疗。由于COVID-19大流行给患者及其护理人员造成巨大痛苦，提供姑息治疗的义务大大增加。然而，要成功地提供姑息治疗，就需要一支受过培训、能够在各级提供姑息治疗的医疗保健队伍。尤其重要的是，能够对卫生保健工作者进行基层姑息治疗方面的培训，以扩大卫生系统提供姑息治疗的能力。本研究的目的是评估该培训计划对参与者对姑息治疗的兴趣和知识的有效性，以及他们提供基本水平姑息治疗的准备。方法:我们开发了一种新的基本姑息治疗培训计划，使用说教式和参与式学习方法，以及指导系统。该项目历时6个月。培训了38名医生。在三个时间点(训练前、训练后和训练后3个月)进行了一项调查，以评估参与者对姑息治疗的兴趣和知识，以及他们提供姑息治疗的准备情况。结果培训后患者对姑息治疗的兴趣(4.05 vs 4.24, p<0.05)和知识(83.05 vs 93.10, p<0.001)以及提供姑息治疗各方面的准备均有改善。这些改善在训练后3个月后持续。结论:采用说教式和参与式学习方法的培训计划，以及导师-被指导者系统，可以有效地培训医生提供基础水平的姑息治疗。
{"title":"Training physicians to provide basic-level palliative care: an evaluation of a novel training programme","authors":"Yen Ching Siow, M. Cheong, Kai Siang Lim, Santelaksmii Mahalinggam, Cindy Cy Oun Teoh","doi":"10.1080/09699260.2021.1963175","DOIUrl":"https://doi.org/10.1080/09699260.2021.1963175","url":null,"abstract":"Background Governments have an obligation to provide palliative care as a part of achieving Universal Health Coverage. This obligation to provide palliative care has grown significantly due to the immense suffering caused by the COVID-19 pandemic to patients and their carers. The successful delivery of palliative care, however, requires a healthcare workforce that is trained to provide palliative care at all levels. It is especially important to be able to train healthcare workers in basic-level palliative care to expand the health system’s capacity to provide palliative care. Objectives The aim of this study is to evaluate the effectiveness of this training programme on the participants’ interest and knowledge in palliative care, and their preparedness to deliver basic-level palliative care. Methods We developed a novel training programme for basic palliative care using didactic and participatory learning methods, along with a mentoring system. The programme was delivered over 6 months. 38 physicians were trained. A survey to evaluate the participants’ interest and knowledge of palliative care, as well as their preparedness to provide palliative care was conducted at 3 timepoints – pre-training, post-training, and 3 months post-training. Results Improvements in the interest (4.05 vs 4.24, p<0.05) and knowledge of palliative care (83.05 vs 93.10, p<0.001), and the preparedness to provide various aspects of palliative care were observed post-training. These improvements were sustained after 3 months post-training. Conclusions A training programme using didactic and participatory learning methods, along with a mentor-mentee system can be effective in training physicians to provide basic-level palliative care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"69 - 74"},"PeriodicalIF":1.7,"publicationDate":"2021-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43217302","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-08-17DOI: 10.1080/09699260.2021.1962669
Amanda Roberts
This article charts the learning from an online, artmaking programme supporting individuals with a life-limiting illness. The programme sought to fill a gap caused by the temporary closure of face-to-face UK hospice-based day therapy programmes during the COVID-19 pandemic. Participants’ comments on this arts-based programme illustrated the sense of disrupted and diminished identity, linked to a deceased sense of agency, which terminal illness can bring. Responding to this need for increased agency led to the development of the PATCH (Palliative care patient-led change) programme. Individuals with a terminal illness will be invited to join an online collaborative group, to identify a specific issue they wish to address and to lead the change they wish to see. The PATCH group will be supported by a facilitator and a team of volunteers, whose roles will include supporting participants in planning and executing their change strategy. This article presents the conceptual underpinning for the PATCH programme, offering a tentative theory of the relationship between identity, moral purpose, agency, illness and the leadership of change for those living with a life-limiting illness. Challenging stereotypical views of palliative care patients, it explores a new community and asset-based approach to end-of-life care which supports individuals at the end of life in developing a positive self-view.
{"title":"From artmaking to changemaking: Conceptualizing the PATCH (Palliative care patient-led change) programme","authors":"Amanda Roberts","doi":"10.1080/09699260.2021.1962669","DOIUrl":"https://doi.org/10.1080/09699260.2021.1962669","url":null,"abstract":"This article charts the learning from an online, artmaking programme supporting individuals with a life-limiting illness. The programme sought to fill a gap caused by the temporary closure of face-to-face UK hospice-based day therapy programmes during the COVID-19 pandemic. Participants’ comments on this arts-based programme illustrated the sense of disrupted and diminished identity, linked to a deceased sense of agency, which terminal illness can bring. Responding to this need for increased agency led to the development of the PATCH (Palliative care patient-led change) programme. Individuals with a terminal illness will be invited to join an online collaborative group, to identify a specific issue they wish to address and to lead the change they wish to see. The PATCH group will be supported by a facilitator and a team of volunteers, whose roles will include supporting participants in planning and executing their change strategy. This article presents the conceptual underpinning for the PATCH programme, offering a tentative theory of the relationship between identity, moral purpose, agency, illness and the leadership of change for those living with a life-limiting illness. Challenging stereotypical views of palliative care patients, it explores a new community and asset-based approach to end-of-life care which supports individuals at the end of life in developing a positive self-view.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"158 - 162"},"PeriodicalIF":1.7,"publicationDate":"2021-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45888694","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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