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Journal of Social Work in End-of-Life & Palliative Care最新文献

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Awaiting. 等待。
IF 1.6 Q3 Social Sciences Pub Date : 2023-04-01 DOI: 10.1080/15524256.2023.2198671
Dalvani Marques

The poem portrays the wait and expectations of the family member about the outcome of hospitalizations of a patient in palliative care.

这首诗描绘了家属对姑息治疗病人住院治疗结果的等待和期望。
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引用次数: 0
Perspectives on Social Justice among Hospice and Palliative Care Social Workers: Voices from the Field. 安宁疗护与缓和疗护社工的社会正义观:来自现场的声音。
IF 1.6 Q3 Social Sciences Pub Date : 2023-04-01 DOI: 10.1080/15524256.2023.2219408
John G Cagle, Rachel Brandon

Hospice and palliative care are burgeoning fields of social work practice. Within the social work profession, the pursuit of social justice is a defining ethical value. While some research exists on social justice within palliative and hospice care, no studies have examined its meaning within the context of this highly specialized field. To date, there is an absence of empirical research examining the meaning of social justice within a sample of hospice and palliative social workers. This study attempts to fill this gap. We used qualitative and quantitative survey items to ask hospice and palliative care social workers about the meaning of social justice within their unique practice setting, as well as to identify prominent social injustices and opportunities for action. Using responses from 51 seasoned practitioners, we found that social workers generally defined social justice as equitable access to three core areas-basic needs, high quality care, and education (for both patients, families, and providers)-regardless of a person's group membership (e.g., race, class, sexual orientation). Participants also made recommendations for improving social justice in clinical practice through advocacy and other initiatives.

临终关怀和姑息治疗是社会工作实践的新兴领域。在社会工作行业中,追求社会正义是一种明确的道德价值。虽然有一些研究存在于姑息治疗和临终关怀中的社会正义,但没有研究在这个高度专业化领域的背景下检查其意义。到目前为止,还没有实证研究检验社会正义的意义在一个样本的安宁疗护和姑息社会工作者。本研究试图填补这一空白。我们使用定性和定量的调查项目来询问安宁疗护和缓和疗护社工在他们独特的实践环境中社会正义的意义,以及识别突出的社会不公正和行动机会。通过对51位经验丰富的从业人员的反馈,我们发现社会工作者通常将社会公正定义为公平地获得三个核心领域——基本需求、高质量的护理和教育(对患者、家庭和提供者)——而不考虑个人的群体成员(如种族、阶级、性取向)。与会者还就通过宣传和其他举措改善临床实践中的社会公正提出了建议。
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引用次数: 0
Suicide and Hospice Caregivers: A Case Study. 自杀与临终关怀照护者:个案研究。
IF 1.6 Q3 Social Sciences Pub Date : 2023-04-01 DOI: 10.1080/15524256.2023.2198157
Rebecca G Mirick, Stephanie P Wladkowski

In 2020, hospices supported 1.72 million Medicare patients and their caregivers. The end-of-life experience can be difficult for caregivers and many experience anxiety, depression, and suicidality. Little literature has explored the role of hospice social workers in addressing and treating caregivers' suicidal thoughts and behaviors. This paper will explore the topic of hospice caregiver suicide, using a case study to illustrate relevant issues, practices, and needs. Implications for hospice social work practice are included.

2020年,临终关怀为172万名医疗保险患者及其护理人员提供了支持。临终的经历对照顾者来说可能很困难,许多人会感到焦虑、抑郁和自杀。很少有文献探讨安宁疗护社工在处理和治疗照护者的自杀想法和行为方面的角色。本文将探讨安宁疗护者自杀的议题,并以个案研究来说明相关议题、实务及需求。本文亦包括对安宁疗护社会工作实务的启示。
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引用次数: 0
Cardiac Related Psychosocial Distress and Traumatic Distress in Individuals with Advanced Heart Failure. 晚期心力衰竭患者的心脏相关心理社会困扰和创伤性困扰。
IF 1.6 Q3 Social Sciences Pub Date : 2023-04-01 DOI: 10.1080/15524256.2023.2198158
Schuyler C Cunningham, Anne Keleman, Rachel Brandon, Hunter Groninger, Karlynn BrintzenhofeSzoc

Guided by the Transactional Model of Stress and Coping, this study explored relationships between cardiac related psychosocial distress, traumatic distress, and the number of lifetime traumas in people with advanced heart failure. Utilizing a cross-sectional survey design, a convenience sample of participants with advanced heart failure who received treatment in Washington, DC, completed standardized measures. Bivariate analysis showed a statistically significant difference in mean number of exposures and distress associated with advanced heart failure therapies and linear relationships between exposures and traumatic distress, distress and traumatic distress, and exposures and distress, as well as between the number of exposures and distress and traumatic distress and between the distress and traumatic distress. Multivariate analysis suggested that the higher the number of reported traumatic events, the higher the distress, and the higher the distress, the higher the traumatic distress. Social workers and allied team members should consider how a patient's distress relates to traumatic distress in the advanced stage heart failure population.

在压力与应对的交易模型的指导下,本研究探讨了晚期心力衰竭患者与心脏相关的心理社会困扰、创伤性困扰和终生创伤次数之间的关系。利用横断面调查设计,在华盛顿特区接受治疗的晚期心力衰竭患者的方便样本完成了标准化测量。双变量分析显示,与高级心力衰竭治疗相关的平均暴露次数和痛苦,暴露与创伤性痛苦、痛苦与创伤性痛苦、暴露与痛苦、暴露次数与痛苦与创伤性痛苦、痛苦与创伤性痛苦之间,以及暴露次数与痛苦与创伤性痛苦之间,以及痛苦与创伤性痛苦之间,存在统计学上的显著差异。多因素分析表明,报告创伤事件次数越多,痛苦程度越高,痛苦程度越高,创伤痛苦程度越高。社会工作者和相关团队成员应该考虑患者的痛苦与晚期心力衰竭人群的创伤性痛苦之间的关系。
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引用次数: 0
Editor Introduction. 编辑器的介绍。
IF 1.6 Q3 Social Sciences Pub Date : 2023-04-01 DOI: 10.1080/15524256.2023.2222963
Ellen L Csikai
Welcome to another issue! Each in a different way, the authors in this issue together present a focus on difficult medical/social situations that may cause distress in the individual or caregivers and thus lead toward a lessening of quality of life at the end of life. These articles show the value of taking into consideration that traumatic experiences happen in everyday lives While suicide among hospice recipients has received some attention in the literature, suicide and suicidal thoughts among hospice caregivers has not. Primary among the difficulties with focusing on this topic is the fact that most receive hospice care for a very short time. The first article, by Mirick and Wladkowski, takes us through a case study presenting a step-by-step recognition of the issues involved and recommendations for how social workers can best utilize prevention techniques and intervene as necessary. The first among these is universal screening for suicidality. Social workers may also engage in providing resources, safety planning, supportive contacts, including following death of the care recipient and continue their own training and awareness of suicidality. Cunningham et al. explored psychosocial distress as it related to cardiac distress in individuals with advanced heart failure and then further linked this to traumatic distress. Of course this is important as it has been well-established that psychosocial distress and traumatic distress can lead to negative health outcomes. Through a survey of individuals with advanced heart failure, multiple measures were utilized to understand distress on multiple levels and included measures of depression and anxiety. Explore the usefulness of the current measures in assessing distress in this population. They found that the number of exposures to potentially traumatic incidents, the higher the distress and then likely higher level of traumatic distress, but no predictors of it in this particular group of respondents. The authors suggest that further study is needed with this population and also examination of the usefulness of the measures for populations with advance heart disease. Next, Cagle and Brandon address the issue of social justice in palliative care. They conducted a survey of hospice and palliative care social workers’ perceptions on the meaning of social justice and how these social workers see the issue played out in their work. These social workers reported encountering many people who are disadvantaged in some way, economically, physically or intellectually, and non-English speaking as well as those who abuse substances or are homeless. All of these individuals may be at a higher risk to experience social injustices and in turn, traumatic experiences. The respondents’ defined social justice as access to basic needs, high-quality care, and education without regard to group membership. Also identified were ways to overcome barriers to access, some of which included the recognition that something active
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引用次数: 0
Revisiting a Time of Study: Older Adults Learning Through Grieving. 重温学习时光:老年人在悲伤中学习。
IF 1.6 Q3 Social Sciences Pub Date : 2023-04-01 DOI: 10.1080/15524256.2023.2198674
Paul J Moon

A brief reflection of encountering four older adult women who claimed self-transformation through learning in late life grief.

四名老年妇女在晚年悲伤中声称通过学习实现自我转变的简短反思。
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引用次数: 0
Support and Informational Needs of Ultra-Orthodox Jewish Women Coping with Advanced Cancer: A Pilot Observational Study. 极端正统犹太妇女应对晚期癌症的支持和信息需求:一项试点观察研究。
IF 1.6 Q3 Social Sciences Pub Date : 2023-04-01 DOI: 10.1080/15524256.2023.2220080
Meital Simhi, Aviva Yoselis

In Israel, as in other countries, the emotional and physical needs of minority populations receiving palliative care, are largely unknown. The ultra-Orthodox Jewish sector is one such minority population. This study's goal was to identify perceived social support, desire to receive information about illness and prognosis, and willingness to disclose information to others. Various measures assessing perception of social support, psychological symptoms and information disclosure were completed. Fifty-one women consented to participate; approximately 50% of participants had disclosed the diagnosis to their rabbi or a friend, in addition to their spouse. Almost all of the participants would want to be told if their condition were worsening (86.3%), yet only 17.6% reported that their doctor had discussed future care options if their health situation were to worsen. Overall, participants felt that the level of support they received was high and reported low levels of mental distress. This is the first known study regarding perceptions and needs of ultra-Orthodox Jewish women with advanced-stage cancer. Both diagnosis disclosure and palliative care options should be addressed and discussed with these patients so they may make important end-of-life decisions.

与其他国家一样,在以色列,接受姑息治疗的少数民族的情感和身体需求在很大程度上是未知的。极端正统派犹太人就是这样的少数民族。本研究的目的是确定感知到的社会支持,接受疾病和预后信息的愿望,以及向他人透露信息的意愿。完成了评估社会支持感知、心理症状和信息披露的各种措施。51名女性同意参与;除配偶外,大约50%的参与者还向他们的拉比或朋友透露了诊断结果。几乎所有的参与者都希望被告知他们的病情是否恶化(86.3%),但只有17.6%的人报告说,如果他们的健康状况恶化,他们的医生已经讨论过未来的护理选择。总的来说,参与者觉得他们得到的支持水平很高,报告的精神痛苦水平很低。这是已知的第一项关于极端正统犹太晚期癌症妇女的看法和需求的研究。诊断披露和姑息治疗选择都应该与这些患者讨论,以便他们做出重要的临终决定。
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引用次数: 0
"The Health Caregivers Did Not Care about Me after the Loss": Maternal Experiences of Perinatal Loss in the Kumasi Metropolitan Area, Ghana. “保健护理人员在失去后不关心我”:加纳库马西大都市区围产期损失的母亲经历。
IF 1.6 Q3 Social Sciences Pub Date : 2023-04-01 DOI: 10.1080/15524256.2023.2220078
Bridget Amankwah, Mary Ani-Amponsah, Mustapha Mahama, Alberta Gyepi-Garbrah, Doris Richardson, Olivia Nyarko Mensah, Hannah Acquah, Dzigbordi Kpikpitse, Rasheed Ofosu-Poku

One of the common undesirable outcomes of pregnancy is perinatal loss. Healthcare systems strive to reduce the incidence of perinatal loss but typically little attention is on the experiences of bereaved mothers following perinatal loss, particularly in low and middle-income countries where such deaths are common. This research explored the lived experiences of mothers with perinatal loss in the Kumasi metropolis, Ghana. A qualitative design was used to explore the experiences of nine (9) bereaved mothers from the Komfo Anokye Teaching Hospital's postnatal ward and the Mother and Baby Unit. Data were collected through face-to-face interviews using a semi-structured interview guide, audio-recorded, and thematically analyzed. One major finding was that mothers restricted mourning their dead babies based on fear of recurrent perinatal loss and traditional beliefs on delayed return to fertility. Mothers blamed healthcare providers for their loss due to their concerns about care received. Gaps in communication flow from healthcare professionals to bereaved mothers were commonly identified as mothers struggled to make meaning of their loss and coped with cultural restrictions and beliefs. Healthcare professionals must explore mothers' concerns and "gut-feelings," and pay attention to their communication needs following perinatal loss.

一个常见的不良后果的怀孕是围产期损失。卫生保健系统努力减少围产期损失的发生率,但通常很少关注在围产期损失后失去亲人的母亲的经历,特别是在这种死亡很常见的低收入和中等收入国家。本研究探讨了围产期损失母亲的生活经历在库马西大都市,加纳。本研究采用定性设计来探讨来自Komfo Anokye教学医院产后病房和母婴病房的9名丧亲母亲的经历。数据通过面对面访谈收集,使用半结构化访谈指南,录音,并进行主题分析。一个重要的发现是,母亲们出于对围产期复发性损失的恐惧,以及对生育能力延迟恢复的传统信念,限制了对死去婴儿的哀悼。母亲们将她们的损失归咎于医疗服务提供者,因为她们担心得到的护理。从医疗保健专业人员到失去亲人的母亲之间的沟通差距通常被认为是母亲们努力理解自己失去亲人的意义,并应对文化限制和信仰。医疗保健专业人员必须探索母亲的担忧和“内心感受”,并注意围产期流产后她们的沟通需求。
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引用次数: 0
Problem-Solving Dimensions among Caregivers of People with Cancer Receiving Outpatient Palliative Care. 接受门诊姑息治疗的癌症患者的照顾者解决问题的维度。
IF 1.6 Q3 Social Sciences Pub Date : 2023-01-01 Epub Date: 2022-10-27 DOI: 10.1080/15524256.2022.2139333
Adrian E Bruton, Lindsey R Debosik, Kyle A Pitzer, Ellen L Csikai, Karla T Washington

Family caregivers of people with cancer encounter a wide range of problems including challenges managing patients' symptoms, difficulties navigating complex healthcare systems, and financial stressors associated with caregiving. Outpatient palliative care teams are ideally positioned to help caregivers respond to these challenges; however, little evidence is available to inform problem-solving support for caregivers in this setting. This article presents results from a secondary analysis of data obtained as part of a randomized clinical trial of a problem-solving intervention for family caregivers of people with cancer receiving outpatient palliative care. It describes the extent to which caregivers report adoption of positive and negative problem orientations and use of rational, impulsive, and avoidant problem-solving styles, and examines whether these problem-solving dimensions differ by age and gender. Results reveal statistically significant negative correlations between caregiver age and positive and negative problem orientations and use of a rational problem-solving style, and statistically significant gender differences with regard to negative problem orientation and use of an impulsive problem-solving style. Findings from this exploratory study highlight unique potential strengths and needs of caregivers, and set the stage for future research on problem-solving among cancer caregivers in the growing field of outpatient palliative care.

癌症患者的家庭照护者会遇到各种各样的问题,包括控制患者症状的挑战、驾驭复杂医疗系统的困难以及与照护相关的经济压力。门诊姑息关怀团队处于帮助照护者应对这些挑战的理想位置;然而,目前几乎没有证据表明在这种情况下可以为照护者提供解决问题的支持。本文介绍了一项随机临床试验的数据二次分析结果,该试验针对接受门诊姑息关怀的癌症患者的家庭照护者采取了解决问题的干预措施。文章描述了照护者在多大程度上采用了积极和消极的问题导向,使用了理性、冲动和回避的问题解决方式,并研究了这些问题解决方式是否因年龄和性别而有所不同。研究结果表明,照顾者的年龄与积极和消极问题取向以及使用理性问题解决方式之间存在统计学意义上的明显负相关,而在消极问题取向和使用冲动问题解决方式方面存在统计学意义上的明显性别差异。这项探索性研究的结果凸显了护理人员独特的潜在优势和需求,为今后在不断发展的门诊姑息治疗领域开展有关癌症护理人员解决问题的研究奠定了基础。
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引用次数: 0
A Separate Peace. 一个单独的和平。
IF 1.6 Q3 Social Sciences Pub Date : 2023-01-01 DOI: 10.1080/15524256.2023.2165598
Aysha Jawed
This past summer, a 4-month-old baby named Heidi with microcephaly and subsequent autonomic instability was hospitalized for 1 month in an intermediate care unit at a hospital on the eastern seaboard. She was diagnosed with microcephaly at 2 months of age at the same hospital. During her most recent hospitalization, Heidi presented with significant neuroirritability. Her parents felt uncomfortable having her return home unless she was sleeping through the night without needing any pain medications. The family and the medical team had different perspectives on the management of Heidi’s care. Both recognized that Heidi had a progressive, degenerative illness; however, her parents felt that her illness would progress to death a lot sooner than the medical team’s prediction that she could potentially live for longer than 6 months. The medical team and nursing staff involved in her care were emotionally impacted by this hospitalization in several different ways. This was evident in behavioral responses such as distress, anger, fear, and defensiveness. As the social worker supporting Heidi’s family, I found myself as a gatekeeper and holder of information as well as an advocate and educator. The rest of the care team, especially our nursing staff, felt a sense of protection over the child which affected their objectivity in approaching the child’s case. This was a unique situation where the family’s peace about their child’s limited life span clashed with the care team’s expectation that the family would still be coming to terms with her illness.
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引用次数: 1
期刊
Journal of Social Work in End-of-Life & Palliative Care
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