Pub Date : 2024-04-01Epub Date: 2024-02-28DOI: 10.1080/15524256.2024.2321522
Cheryl-Anne Cait, Ginette Lafreniere
Volunteers are foundational in hospice programs. The purpose of this research was to address social, ethnic and demographic changes in Southwestern Ontario and understand how this may affect volunteer recruitment, and representation. Interviews and focus groups were conducted with hospice volunteers, key informants from leaders in ethnocultural communities, and hospice staff. Qualitative data from the interviews was analyzed using thematic analysis in five phases. Findings suggest ethnocultural interpretations of hospice can be very different than Westernized, Eurocentric ideas around end-of-life care. Systemic and structural barriers, information sharing, volunteer motivation and representation were found to influence and impact ethnocultural volunteer recruitment in hospice palliative care. Using a critical analysis allows us to identify the "imposition" of a Euro-ethnocentric hospice palliative care model that prevents recruitment of and impedes access of ethnocultural groups to hospice palliative care. To build bridges across predominantly White/Western models of care to ethnocultural racialized communities requires constant communication, relationship building, and determination in mutuality of learning on behalf of the dominant model. This research has implications for different regions of Canada providing hospice palliative care and hoping to increase ethnocultural accessibility and volunteer recruitment for hospice palliative care.
{"title":"\"Stop Imposing on Us\": A Critical Examination of Ethnocultural Considerations in the Canadian Volunteer Hospice Palliative Care Landscape.","authors":"Cheryl-Anne Cait, Ginette Lafreniere","doi":"10.1080/15524256.2024.2321522","DOIUrl":"10.1080/15524256.2024.2321522","url":null,"abstract":"<p><p>Volunteers are foundational in hospice programs. The purpose of this research was to address social, ethnic and demographic changes in Southwestern Ontario and understand how this may affect volunteer recruitment, and representation. Interviews and focus groups were conducted with hospice volunteers, key informants from leaders in ethnocultural communities, and hospice staff. Qualitative data from the interviews was analyzed using thematic analysis in five phases. Findings suggest ethnocultural interpretations of hospice can be very different than Westernized, Eurocentric ideas around end-of-life care. Systemic and structural barriers, information sharing, volunteer motivation and representation were found to influence and impact ethnocultural volunteer recruitment in hospice palliative care. Using a critical analysis allows us to identify the \"imposition\" of a Euro-ethnocentric hospice palliative care model that prevents recruitment of and impedes access of ethnocultural groups to hospice palliative care. To build bridges across predominantly White/Western models of care to ethnocultural racialized communities requires constant communication, relationship building, and determination in mutuality of learning on behalf of the dominant model. This research has implications for different regions of Canada providing hospice palliative care and hoping to increase ethnocultural accessibility and volunteer recruitment for hospice palliative care.</p>","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"185-200"},"PeriodicalIF":1.6,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139991413","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 : 2024-04-01Epub Date: 2024-02-12DOI: 10.1080/15524256.2024.2315430
Tarek Zieneldien
{"title":"Family History.","authors":"Tarek Zieneldien","doi":"10.1080/15524256.2024.2315430","DOIUrl":"10.1080/15524256.2024.2315430","url":null,"abstract":"","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"117"},"PeriodicalIF":1.6,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139724448","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}
This qualitative study was designed to describe the continuity of end-of-life care and identify barriers to continuity in urban Bangkok. Continuity of care is considered an essential part of palliative care to promote the quality of life of patients at the end of life. The majority of studies have been conducted exploring continuity of care in rural communities. However, few studies have focused on urban areas, particularly in big cities. Twelve healthcare providers were the participants, including nurses in inpatient units, and in the Health Community and Continuity of Care Unit, a palliative care physician, and social workers. The data collection consisted of individual interviews, field notes, and observations. Content analysis was used to analyze data and identify barriers. The continuity of end-of-life care in a selected setting was fragmented. Three main barriers to the continuity of end-of-life care consisted of misunderstandings about patients who required palliative care, staff workloads, and incomplete patient information. The development of a comprehensive patient information sheet for communication among a multidisciplinary team could promote continuity of end-of-life care from hospital to home. An interprofessional training course on continuity of end-of-life care is also recommended. Finally, the staff workload should be monitored and managed.
{"title":"Situational Analysis of Barriers to Continuity of End-of-Life Care in Urban Areas, Bangkok.","authors":"Nisa Wongchan, Kittikorn Nilmanat, Tippamas Chinnawong","doi":"10.1080/15524256.2023.2282354","DOIUrl":"10.1080/15524256.2023.2282354","url":null,"abstract":"<p><p>This qualitative study was designed to describe the continuity of end-of-life care and identify barriers to continuity in urban Bangkok. Continuity of care is considered an essential part of palliative care to promote the quality of life of patients at the end of life. The majority of studies have been conducted exploring continuity of care in rural communities. However, few studies have focused on urban areas, particularly in big cities. Twelve healthcare providers were the participants, including nurses in inpatient units, and in the Health Community and Continuity of Care Unit, a palliative care physician, and social workers. The data collection consisted of individual interviews, field notes, and observations. Content analysis was used to analyze data and identify barriers. The continuity of end-of-life care in a selected setting was fragmented. Three main barriers to the continuity of end-of-life care consisted of misunderstandings about patients who required palliative care, staff workloads, and incomplete patient information. The development of a comprehensive patient information sheet for communication among a multidisciplinary team could promote continuity of end-of-life care from hospital to home. An interprofessional training course on continuity of end-of-life care is also recommended. Finally, the staff workload should be monitored and managed.</p>","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"48-64"},"PeriodicalIF":1.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136399639","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 : 2024-01-01Epub Date: 2023-09-26DOI: 10.1080/15524256.2023.2262154
Jessica Curd, Michin Hong
Social workers often encounter health and resource disparities and caregiver challenges in support of hospice patients and families. Social workers also play a critical role in navigating systems and confronting systemic barriers. Their input regarding macro practice is invaluable, though there is not much literature pertaining to end-of-life disparities as experienced from the social worker point of view. There is also limited research from the hospice social worker perspective, with little pertaining to those providing care in rural areas. To address these gaps, this phenomenological study explored the lived experiences of rural hospice social workers to better understand their role in these matters. Data collection occurred through in-depth unstructured qualitative interviews. A total of 19 rural hospice workers participated in the study. There were four main themes identified: systemic issues in hospice settings, resource and geographic barriers, tensions and benefits of interprofessional collaboration, and hospice work environment. Based on these findings, recommendations for hospice social work practice, research, and policy include support of and elevation of the voice of hospice social workers on the interprofessional team, assessment of resource barriers to improve hospice social work interventions and improve quality of life for dying persons, education of hospice administrators to understand best ways to support hospice social, and implementation of policy change to expedite access to caregiver resources at end of life.
{"title":"Exploring the Lived Experiences of Rural Hospice Social Workers in Navigating \"Cracked\" Systems.","authors":"Jessica Curd, Michin Hong","doi":"10.1080/15524256.2023.2262154","DOIUrl":"10.1080/15524256.2023.2262154","url":null,"abstract":"<p><p>Social workers often encounter health and resource disparities and caregiver challenges in support of hospice patients and families. Social workers also play a critical role in navigating systems and confronting systemic barriers. Their input regarding macro practice is invaluable, though there is not much literature pertaining to end-of-life disparities as experienced from the social worker point of view. There is also limited research from the hospice social worker perspective, with little pertaining to those providing care in rural areas. To address these gaps, this phenomenological study explored the lived experiences of rural hospice social workers to better understand their role in these matters. Data collection occurred through in-depth unstructured qualitative interviews. A total of 19 rural hospice workers participated in the study. There were four main themes identified: systemic issues in hospice settings, resource and geographic barriers, tensions and benefits of interprofessional collaboration, and hospice work environment. Based on these findings, recommendations for hospice social work practice, research, and policy include support of and elevation of the voice of hospice social workers on the interprofessional team, assessment of resource barriers to improve hospice social work interventions and improve quality of life for dying persons, education of hospice administrators to understand best ways to support hospice social, and implementation of policy change to expedite access to caregiver resources at end of life.</p>","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"26-47"},"PeriodicalIF":1.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41153449","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 : 2024-01-01Epub Date: 2023-06-29DOI: 10.1080/15524256.2023.2229041
Raúl Hormazábal-Salgado, Abdi D Osman, Margarita Poblete-Troncoso, Dean Whitehead, Danny Hills
The aim of this review was to identify, assess, collate, and analyze existing research that has made a direct contribution to aiding understanding of the ethical and decision-making issues related to the use of advance care directives for people with dementia and/or other major neurocognitive disorders and/or their surrogate decision-makers on treatment. The Web of Science, Scopus, PubMed, CINAHL, Academic Search Ultimate, and MEDLINE databases were searched between August and September 2021 and July to November 2022 limited to primary studies written in English, Spanish, or Portuguese. Twenty-eight studies of varying quality that addressed related thematic areas were identified. These themes being support for autonomy in basic needs (16%), making decisions ahead/planning ahead and upholding these decisions (52%), and support in decision-making for carers (32%). Advance care directives are an important mechanism for documenting treatment preferences in patient care planning. However, the available literature on the topic is limited in both quantity and quality. Recommendations for practice include involving decision makers, promoting educational interventions, exploring how they are used and implemented, and promoting the active involvement of social workers within the healthcare team.
本综述的目的是识别、评估、整理和分析现有研究,这些研究对帮助理解与痴呆症和/或其他主要神经认知障碍患者和/或其治疗替代决策者使用预先护理指令有关的伦理和决策问题做出了直接贡献。在2021年8月至9月以及2022年7月至11月期间,对Web of Science、Scopus、PubMed、CINAHL、Academic Search Ultimate和MEDLINE数据库进行了搜索,仅限于用英语、西班牙语或葡萄牙语撰写的初级研究。确定了涉及相关主题领域的28项不同质量的研究。这些主题是支持基本需求的自主权(16%),提前做出决定/提前规划并坚持这些决定(52%),以及支持护理人员的决策(32%)。预先护理指令是记录患者护理计划中治疗偏好的重要机制。然而,关于这一主题的现有文献在数量和质量上都是有限的。实践建议包括让决策者参与进来,促进教育干预,探索如何使用和实施这些干预,以及促进社会工作者在医疗团队中的积极参与。
{"title":"Advanced Care Directives in Residential Aged Care for Residents with Major Neuro-Cognitive Disorders (Dementia): A Scoping Review.","authors":"Raúl Hormazábal-Salgado, Abdi D Osman, Margarita Poblete-Troncoso, Dean Whitehead, Danny Hills","doi":"10.1080/15524256.2023.2229041","DOIUrl":"10.1080/15524256.2023.2229041","url":null,"abstract":"<p><p>The aim of this review was to identify, assess, collate, and analyze existing research that has made a direct contribution to aiding understanding of the ethical and decision-making issues related to the use of advance care directives for people with dementia and/or other major neurocognitive disorders and/or their surrogate decision-makers on treatment. The Web of Science, Scopus, PubMed, CINAHL, Academic Search Ultimate, and MEDLINE databases were searched between August and September 2021 and July to November 2022 limited to primary studies written in English, Spanish, or Portuguese. Twenty-eight studies of varying quality that addressed related thematic areas were identified. These themes being support for autonomy in basic needs (16%), making decisions ahead/planning ahead and upholding these decisions (52%), and support in decision-making for carers (32%). Advance care directives are an important mechanism for documenting treatment preferences in patient care planning. However, the available literature on the topic is limited in both quantity and quality. Recommendations for practice include involving decision makers, promoting educational interventions, exploring how they are used and implemented, and promoting the active involvement of social workers within the healthcare team.</p>","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"83-114"},"PeriodicalIF":1.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9695690","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 : 2024-01-01Epub Date: 2023-07-09DOI: 10.1080/15524256.2023.2232120
Reid M Jacobs
{"title":"I Am a Hospice Social Worker.","authors":"Reid M Jacobs","doi":"10.1080/15524256.2023.2232120","DOIUrl":"10.1080/15524256.2023.2232120","url":null,"abstract":"","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"3"},"PeriodicalIF":1.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9767043","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 : 2024-01-01Epub Date: 2023-11-10DOI: 10.1080/15524256.2023.2272590
Maxxine Rattner, Cheryl-Anne Cait
This article highlights recent research findings that have significance for hospice and palliative care social work in Canada, and for the field of hospice and palliative care more broadly. A 2020 discourse analysis study examined the experiences of 24 interdisciplinary palliative care clinicians across Canada in their work with patients' nonphysical suffering. Nonphysical suffering is suffering that may be emotional, psychological, social, spiritual and/or existential in nature. The study found an absence of specialist social workers on hospice and palliative care teams or limited time for specialist social workers to address patients' nonphysical suffering due to high caseloads and complex practical needs. While the study recognizes social workers have expertise in supporting patients' nonphysical suffering, a competency and skill that has not been sufficiently captured in the existing literature, the systemic barriers they face in providing care may leave patients' needs unmet. The study also highlights the unique pressure social workers may feel to relieve patients' nonphysical suffering due to the psychosocial focus of their role. The need for specialist social workers to be included and adequately resourced on hospice and palliative care teams across diverse settings in Canada is evident.
{"title":"Nonphysical Suffering: An Under-Resourced and Key Role for Hospice and Palliative Care Social Workers.","authors":"Maxxine Rattner, Cheryl-Anne Cait","doi":"10.1080/15524256.2023.2272590","DOIUrl":"10.1080/15524256.2023.2272590","url":null,"abstract":"<p><p>This article highlights recent research findings that have significance for hospice and palliative care social work in Canada, and for the field of hospice and palliative care more broadly. A 2020 discourse analysis study examined the experiences of 24 interdisciplinary palliative care clinicians across Canada in their work with patients' nonphysical suffering. Nonphysical suffering is suffering that may be emotional, psychological, social, spiritual and/or existential in nature. The study found an absence of specialist social workers on hospice and palliative care teams or limited time for specialist social workers to address patients' nonphysical suffering due to high caseloads and complex practical needs. While the study recognizes social workers have expertise in supporting patients' nonphysical suffering, a competency and skill that has not been sufficiently captured in the existing literature, the systemic barriers they face in providing care may leave patients' needs unmet. The study also highlights the unique pressure social workers may feel to relieve patients' nonphysical suffering due to the psychosocial focus of their role. The need for specialist social workers to be included and adequately resourced on hospice and palliative care teams across diverse settings in Canada is evident.</p>","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"8-25"},"PeriodicalIF":1.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72211174","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 : 2024-01-01Epub Date: 2023-08-08DOI: 10.1080/15524256.2023.2241649
Viripun Gift Chowchuvech
{"title":"Dignity of Identity.","authors":"Viripun Gift Chowchuvech","doi":"10.1080/15524256.2023.2241649","DOIUrl":"10.1080/15524256.2023.2241649","url":null,"abstract":"","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"4-7"},"PeriodicalIF":1.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9962605","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}
Trust is a key factor in achieving a good death. However, few studies have focused on factors that help patients with terminal cancer establish trusting relationships with their palliative care doctors. This exploratory qualitative study, conducted in Japan, was designed to identify factors related to terminal cancer patients' trust in their doctors. Semi-structured interviews were conducted with 18 caregivers and grounded theory was the research approach chosen to guide this study. The data revealed seven factors related to the trust to palliative care doctors, including caring attitude, symptom management, courteous and specific explanations, long-term involvement in the patient's care, being faced with inevitable death, good impression of the institution, and referral by a trusted doctor. These factors were categorized into three main themes: [1] palliative care doctors, [2] patients with terminal cancer, and [3] professional reputation. There is potential for improving end-of-life experiences through understanding and implementing interventions to ensure trust identified by these caregivers.
{"title":"Bereaved Family Caregivers Perception of Trust in Palliative Care Doctors by Patients with Terminal Cancer.","authors":"Masaki Murahashi, Kaichiro Tamba, Tomoaki Takanashi","doi":"10.1080/15524256.2023.2284668","DOIUrl":"10.1080/15524256.2023.2284668","url":null,"abstract":"<p><p>Trust is a key factor in achieving a good death. However, few studies have focused on factors that help patients with terminal cancer establish trusting relationships with their palliative care doctors. This exploratory qualitative study, conducted in Japan, was designed to identify factors related to terminal cancer patients' trust in their doctors. Semi-structured interviews were conducted with 18 caregivers and grounded theory was the research approach chosen to guide this study. The data revealed seven factors related to the trust to palliative care doctors, including <i>caring attitude</i>, <i>symptom management</i>, <i>courteous and specific explanations</i>, <i>long-term involvement in the patient's care</i>, <i>being faced with inevitable death</i>, <i>good impression of the institution</i>, and <i>referral by a trusted doctor</i>. These factors were categorized into three main themes: [1] palliative care doctors, [2] patients with terminal cancer, and [3] professional reputation. There is potential for improving end-of-life experiences through understanding and implementing interventions to ensure trust identified by these caregivers.</p>","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"65-82"},"PeriodicalIF":1.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138499715","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 : 2024-01-01Epub Date: 2024-02-27DOI: 10.1080/15524256.2024.2323254
Ellen L Csikai
{"title":"Editor Introduction.","authors":"Ellen L Csikai","doi":"10.1080/15524256.2024.2323254","DOIUrl":"10.1080/15524256.2024.2323254","url":null,"abstract":"","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":"20 1","pages":"1-2"},"PeriodicalIF":1.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139973952","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}