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Developing a Sitting Simple Baduanjin program for advanced cancer patients with the fatigue-sleep disturbance symptom cluster: A feasibility study. 为有疲劳-睡眠障碍症状群的晚期癌症患者开发 "简单八段锦坐姿 "计划:可行性研究
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-14 DOI: 10.1017/S1478951524001482
Huina Zou, Liangying Chen, Tingjin Duan, Xiaoyan Lin, Jianwei Zheng, Huimin Xiao

Objectives: We describe a development and feasibility study of a Sitting Simple Baduanjin program for advanced cancer patients suffering from the fatigue-sleep disturbance symptom cluster. This study was to evaluate the practicality and safety of the Sitting Simple Baduanjin intervention and determine its preliminary efficacy.

Methods: This work employed a single-arm mixed-methods approach. The primary outcome measures were feasibility (i.e., recruitment, adherence, and satisfaction) and safety. Validated self-report questionnaires were used to evaluate the preliminary effects of the program, including fatigue, sleep quality, and quality of life at the 4th, 8th, and 12th weeks of the intervention. Qualitative interviews were also conducted after the program.

Results: A total of 30 participants were enrolled, of which 23 (77%) completed the 12-week Sitting Simple Baduanjin program. The mean adherence rate was 88% and no adverse events were reported. Statistically significant improvements were observed in terms of fatigue, sleep quality, and quality of life after program completion. Four themes emerged from the qualitative interview data: (a) acceptability of the Sitting Simple Baduanjin technique, (b) perceived benefits of exercise, (c) barriers, and (d) facilitators.

Significance of results: The findings support the feasibility of the Sitting Simple Baduanjin program for advanced cancer patients and show promise in improving patients' levels of the fatigue-sleep disturbance symptom cluster and quality of life.

目的:我们描述了一项针对晚期癌症患者疲劳-睡眠障碍症状群的 "简易八段锦坐姿 "项目的开发和可行性研究。本研究旨在评估 "简易八段锦坐姿 "干预的实用性和安全性,并确定其初步疗效:本研究采用了单臂混合方法。主要结果指标为可行性(即招募、依从性和满意度)和安全性。采用经过验证的自我报告问卷来评估该计划的初步效果,包括干预第 4、8 和 12 周的疲劳程度、睡眠质量和生活质量。项目结束后还进行了定性访谈:共有 30 人报名参加,其中 23 人(77%)完成了为期 12 周的 "简易八段锦坐姿 "计划。平均坚持率为 88%,无不良反应报告。计划完成后,在疲劳、睡眠质量和生活质量方面均有明显改善。从定性访谈数据中得出了四个主题:(a)"简易八段锦坐姿 "技术的可接受性;(b)运动带来的益处;(c)障碍;以及(d)促进因素:研究结果表明,"简易八段锦坐姿 "计划对晚期癌症患者是可行的,并有望改善患者的疲劳-睡眠障碍症状群水平和生活质量。
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引用次数: 0
Depression, anxiety, psychological distress, and perceived social support among Ugandan palliative care providers during the COVID-19 pandemic. 在 COVID-19 大流行期间,乌干达姑息治疗提供者的抑郁、焦虑、心理困扰和感知到的社会支持。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-14 DOI: 10.1017/S1478951524000889
Mariah Horvath, Simon Kizito, Roya Ghiaseddin, Lisa Christine Irumba, Mark Donald Mwesiga, Lacey N Ahern

Objectives: To identify the prevalence of depression, anxiety, and psychosocial distress among Ugandan palliative care providers during the COVID-19 pandemic, measure providers' perceived levels of social support, and identify factors affecting a provider's likelihood of being depressed, anxious, distressed, or perceiving various levels of social support.

Methods: Data was collected from 123 palliative care providers using an online survey. Depression, anxiety, and psychological distress were measured using the Patient Health Questionnaire-9, the Generalized Anxiety Disorder-7, and the Self-Reporting Questionnaire, respectively. Information on perceived level of social support was gathered through the Multidimensional Scale of Perceived Social Support. The survey also asked about mental health resources available to providers at their place of work and what resources are still needed.

Results: Participants ranged in age, gender, religion, marital status, clinical position, and years of experience in palliative care. Results indicate that 20% of respondents show signs of moderate to severe depression, 14% show signs of moderate to severe anxiety, and 33% show signs of psychological distress. Additionally, 50% of respondents reported a low total level of social support. Depression, anxiety, and psychological distress scores were all negatively correlated with perceived social support scores. Over 50% expressed a desire for additional mental health resources at their place of work.

Significance of results: In 2021-2022, the severity of depression, anxiety, and psychological distress varied among palliative care providers in Uganda, with some experiencing moderate to severe mental health effects. Higher degrees of depression, anxiety, and psychological distress were correlated with lower levels of perceived social support, highlighting the importance of social support during times of crisis. The results highlight a desire for improved access to mental health resources and will help providers and organizations provide better support and better prepare for future crises.

目的确定在 COVID-19 大流行期间乌干达姑息关怀服务提供者中抑郁、焦虑和社会心理困扰的发生率,测量服务提供者感知的社会支持水平,并确定影响服务提供者抑郁、焦虑、困扰或感知各种社会支持水平的因素:通过在线调查收集了 123 名姑息关怀服务提供者的数据。抑郁、焦虑和心理困扰分别使用患者健康问卷-9、广泛性焦虑症-7 和自我报告问卷进行测量。通过 "感知社会支持多维量表"(Multidimensional Scale of Perceived Social Support)收集了有关感知社会支持水平的信息。调查还询问了服务提供者在工作场所可获得的心理健康资源,以及还需要哪些资源:参与者的年龄、性别、宗教信仰、婚姻状况、临床职位和从事姑息关怀的年限各不相同。结果显示,20% 的受访者表现出中度至重度抑郁,14% 表现出中度至重度焦虑,33% 表现出心理困扰。此外,50% 的受访者表示社会支持的总体水平较低。抑郁、焦虑和心理困扰得分均与感知到的社会支持得分呈负相关。超过 50%的受访者表示希望在工作场所获得更多的心理健康资源:2021-2022年,乌干达姑息关怀服务提供者的抑郁、焦虑和心理困扰的严重程度各不相同,有些人的心理健康受到了中度到重度的影响。抑郁、焦虑和心理困扰程度较高与感知到的社会支持水平较低相关,这凸显了危机时期社会支持的重要性。研究结果凸显了人们对改善心理健康资源获取途径的渴望,将有助于提供者和组织提供更好的支持,并为未来的危机做好更充分的准备。
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引用次数: 0
Bereavement coping strategies among healthcare professionals: A qualitative systematic review and meta-synthesis. 医护人员的丧亲之痛应对策略:定性系统综述和元综合。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-14 DOI: 10.1017/S1478951524001147
Hanbo Feng, Yang Shen, Xiaohan Li

Objectives: Coping with a patient's death is one of the most challenging events faced by healthcare professionals in clinical practice. A broad understanding of the coping strategies used by healthcare professionals is fundamental to the development of effective interventions and the provision of good bereavement care. This review aims to systematically synthesize the coping experience of healthcare professionals in the course of their work when they are confronted with patient deaths.

Methods: PubMed, Embase, ScienceDirect, CINAHL, PsycINFO, Web of Science, Cochrane Library, Scopus, and Wiley online library were searched in April 2023 with no restriction on publication date. A 3-stage thematic synthesis method was applied for data integration and analysis.

Results: Thirty studies involving 545 participants met the inclusion criteria and scored a high level on quality assessment ranging from 9.0 to 10.0. Six themes were identified: emotional coping, cognitive coping, behavioral coping, relational coping, spiritual coping, and occupational coping.

Significance of the results: Overall, the coping strategies used by healthcare professionals in response to bereavement were found to be unique and multidimensional. Understanding how healthcare practitioners use emotional, cognitive, behavioral, relational, spiritual, and professional strategies to cope with bereavement will prove extremely beneficial in helping them to manage their grief, and can furthermore promote their professional growth and ensure the provision of excellent bereavement care for patients.

目的:应对病人死亡是医护人员在临床实践中面临的最具挑战性的事件之一。广泛了解医护人员所使用的应对策略对于制定有效的干预措施和提供良好的丧亲关怀至关重要。本综述旨在系统地总结医护人员在工作过程中面对患者死亡时的应对经验:方法:在 2023 年 4 月对 PubMed、Embase、ScienceDirect、CINAHL、PsycINFO、Web of Science、Cochrane Library、Scopus 和 Wiley 在线图书馆进行检索,不限制出版日期。采用三阶段主题综合法进行数据整合与分析:有 30 项研究(涉及 545 名参与者)符合纳入标准,并在质量评估中获得了 9.0 到 10.0 的高分。研究确定了六个主题:情绪应对、认知应对、行为应对、关系应对、精神应对和职业应对:总体而言,医护人员在应对丧亲之痛时所使用的应对策略是独特的、多维的。了解医护人员如何使用情感、认知、行为、关系、精神和职业策略来应对丧亲之痛,将证明对帮助医护人员处理悲伤极为有益,并能进一步促进医护人员的职业成长,确保为患者提供优质的丧亲护理。
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引用次数: 0
Illness-related communication between siblings and parents of children with chronic illness and life-limiting conditions: A qualitative analysis. 患有慢性病和生命垂危疾病儿童的兄弟姐妹与父母之间与疾病相关的沟通:定性分析。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-11 DOI: 10.1017/S1478951524001056
Lauren Kelada, Tiina Jaaniste, Anjali Cuganesan, Wei Ling Audrey Chin, Sarah Caellainn Tan, Joanna Wu, Robert Ilin, Eden Robertson, Donna Drew, Claire E Wakefield

Background: Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent-sibling illness-related communication may contribute to siblings' capacity to cope.

Objectives: In this study, we aimed to explore parent-sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants' responses according to illness group (chronic illness vs. LLCs).

Methods: We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness (n = 86) or LLC (n = 38) using purpose-designed, open-ended survey questions regarding illness-related communication. We used an inductive qualitative content analysis and matrix coding to explore themes and compare across illness groups.

Results: Two-thirds of siblings expressed satisfaction with their family's illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents of children with an LLC than chronic illness.

Significance of results: Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child's maturity level, distress, and age.

背景:哥哥或姐姐患有慢性疾病(持续时间超过 6 个月,需要长期护理)或局限性疾病(LLC;治愈的可能性极小,预计患儿将会死亡),会对兄弟姐妹产生重大影响。父母与兄弟姐妹之间与疾病相关的沟通可能有助于提高兄弟姐妹的应对能力:本研究旨在从父母和兄弟姐妹的角度探讨父母与兄弟姐妹之间与疾病相关的沟通。我们还旨在根据疾病组别(慢性病与有限责任公司)对参与者的反应进行定性比较:我们通过有目的、开放式的调查问题,收集了患有慢性病(86 人)或有限责任公司(38 人)儿童的兄弟姐妹(32 人的兄弟姐妹患有慢性病,37 人的兄弟姐妹患有有限责任公司)和父母在疾病相关沟通方面的定性数据。我们使用归纳式定性内容分析和矩阵编码来探索主题,并对不同疾病群体进行比较:三分之二的兄弟姐妹对家人与疾病相关的沟通表示满意。兄弟姐妹们通常对开放式和与年龄相适应的沟通方式表示满意,而对隐瞒信息或信息过多感到不知所措的沟通方式表示不满。父母一般倾向于与兄弟姐妹进行开放式沟通,尽管这种情况在患有有限责任公司而非慢性疾病的儿童的父母中更为常见:我们的研究结果表明,虽然许多兄弟姐妹都对与疾病相关的家庭沟通感到满意,但父母应向兄弟姐妹询问他们的沟通偏好,以便根据儿童的成熟程度、痛苦程度和年龄调整与疾病相关的信息。
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引用次数: 0
A journey through psychosocial and spiritual: Hurry up and be steadfast in accepting the realities of life. 社会心理和精神之旅:快点,坚定地接受现实生活。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-11 DOI: 10.1017/S1478951524001573
Palasara Brahmani Laras
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引用次数: 0
Experiences and attitudes of nurses with the legislation on assisted suicide in Austria. 奥地利护士对协助自杀立法的经验和态度。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-11 DOI: 10.1017/S147895152400107X
Elisabeth Lucia Zeilinger, Arzu Petersen, Nadine Brunevskaya, Amelie Fuchs, Theresa Wagner, Jakob Pietschnig, Anna Kitta, Franziska Ecker, Lea Kum, Feroniki Adamidis, Joachim Bär, Connie Sifuentes Caccire, Matthias Unseld, Eva Katharina Masel

Objectives: In 2022, assisted suicide (AS) was legalized in Austria. We aimed to investigate the experiences and attitudes of palliative care (PC) and hospice nurses toward AS in Austria after the first year of implementation of the new law.

Methods: A cross-sectional survey was distributed online to nurses in every known specialized and general hospice and PC units in Austria (n = 255 units). The questionnaire included sociodemographic characteristics, the Assisted Suicide Attitude Scale, the Comfort Discussing Assisted Suicide Scale, and questions on recent experiences with AS requests. We used Spearman's correlation coefficient for determining associations between sociodemographic characteristics and attitudes toward AS, as well as comfort discussing AS. For comparison of frequencies, we applied ꭓ2 tests. We computed a linear regression model to examine predictors for attitudes toward AS.

Results: The total sample were N = 280 nurses. More than half (61.2%) indicated that they had cared for a patient who expressed a wish for AS within the first year of implementation. Though responses varied widely, more nurses expressed support for AS than those were opposed (50.36% and 31.75%, respectively). Factors that statistically contributed to more reluctance toward AS in the regression model were older age, religiousness, and experience of working with patients expressing a wish for AS.

Significance of results: This work provides valuable insight into nurses' perceptions toward the legislation of AS in the first year since the new law was passed. The results can inform the future development of the AS system and support for nurses in end-of-life care, and critically contribute to international discussions on this controversial topic.

目标:2022 年,协助自杀(AS)在奥地利合法化。我们旨在调查奥地利姑息治疗(PC)和临终关怀护士在新法实施一年后对协助自杀的经验和态度:我们通过网络向奥地利所有已知的专科和普通临终关怀及姑息治疗机构(n = 255 家)的护士发放了一份横断面调查问卷。问卷内容包括社会人口学特征、辅助自杀态度量表、讨论辅助自杀舒适度量表,以及有关最近处理辅助自杀请求的经验的问题。我们使用斯皮尔曼相关系数来确定社会人口学特征与对辅助自杀的态度以及讨论辅助自杀的舒适度之间的关联。对于频率的比较,我们采用了ꭓ2 检验。我们计算了一个线性回归模型来研究对强直性脊柱炎态度的预测因素:样本总数为 N = 280 名护士。半数以上(61.2%)的人表示,在 AS 实施的第一年内,他们曾护理过一名表达过 AS 意愿的患者。尽管护士们的回答差异很大,但表示支持 AS 的护士多于反对 AS 的护士(分别为 50.36% 和 31.75%)。据统计,在回归模型中导致更多护士不愿意接受人工器官移植的因素包括年龄偏大、宗教信仰以及与表达人工器官移植愿望的患者打交道的经验:这项研究为了解护士在新法通过后的第一年对人工流产立法的看法提供了宝贵的资料。研究结果可为未来 "临终关怀 "系统的发展和对护士在临终关怀方面的支持提供参考,并对国际上有关这一争议性话题的讨论做出重要贡献。
{"title":"Experiences and attitudes of nurses with the legislation on assisted suicide in Austria.","authors":"Elisabeth Lucia Zeilinger, Arzu Petersen, Nadine Brunevskaya, Amelie Fuchs, Theresa Wagner, Jakob Pietschnig, Anna Kitta, Franziska Ecker, Lea Kum, Feroniki Adamidis, Joachim Bär, Connie Sifuentes Caccire, Matthias Unseld, Eva Katharina Masel","doi":"10.1017/S147895152400107X","DOIUrl":"https://doi.org/10.1017/S147895152400107X","url":null,"abstract":"<p><strong>Objectives: </strong>In 2022, assisted suicide (AS) was legalized in Austria. We aimed to investigate the experiences and attitudes of palliative care (PC) and hospice nurses toward AS in Austria after the first year of implementation of the new law.</p><p><strong>Methods: </strong>A cross-sectional survey was distributed online to nurses in every known specialized and general hospice and PC units in Austria (<i>n</i> = 255 units). The questionnaire included sociodemographic characteristics, the Assisted Suicide Attitude Scale, the Comfort Discussing Assisted Suicide Scale, and questions on recent experiences with AS requests. We used Spearman's correlation coefficient for determining associations between sociodemographic characteristics and attitudes toward AS, as well as comfort discussing AS. For comparison of frequencies, we applied ꭓ<sup>2</sup> tests. We computed a linear regression model to examine predictors for attitudes toward AS.</p><p><strong>Results: </strong>The total sample were <i>N</i> = 280 nurses. More than half (61.2%) indicated that they had cared for a patient who expressed a wish for AS within the first year of implementation. Though responses varied widely, more nurses expressed support for AS than those were opposed (50.36% and 31.75%, respectively). Factors that statistically contributed to more reluctance toward AS in the regression model were older age, religiousness, and experience of working with patients expressing a wish for AS.</p><p><strong>Significance of results: </strong>This work provides valuable insight into nurses' perceptions toward the legislation of AS in the first year since the new law was passed. The results can inform the future development of the AS system and support for nurses in end-of-life care, and critically contribute to international discussions on this controversial topic.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-7"},"PeriodicalIF":1.9,"publicationDate":"2024-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142401617","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}
引用次数: 0
Barriers and facilitators for place of death: A scoping review. 死亡地点的障碍和促进因素:范围审查。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-11 DOI: 10.1017/S1478951524001500
Tina Pedersen, Mette Raunkiær, Vibeke Graven

Objectives: Many factors influence where people die, but most people prefer to die at home. Investigating the factors affecting death at different locations can enhance end-of-life care and enable more people to die at their preferred place. The aim was to investigate barriers and facilitators affecting place of death and compare facilitators and barriers across different places of death.

Methods: A scoping review registered on Open Science Framework was conducted in accordance with the guidelines for Scoping Reviews (PRISMA-ScR). An electronic search of literature was undertaken in MEDLINE, EMBASE, PUBMED, PsycINFO, and CINAHL covering the years January 2013-December 2023. Studies were included if they described barriers and/or facilitators for place of death among adults.

Results: This review identified 517 studies, and 95 of these were included in the review. The review identified the following themes. Illness factors: disease type, dying trajectory, treatment, symptoms, and safe environment. Individual factors: sex, age, ethnicity, preferences, and for environmental factors the following were identified: healthcare inputs, education and employment, social support, economy, and place of residence.

Significance of results: The factors influencing place of death are complex and some have a cumulative impact affecting where people die. These factors are mostly rooted in structural aspects and make hospital death more likely for vulnerable groups, who are also less likely to receive palliative care and advanced care planning. Disease type and social support further impact the location of death. Future research is needed regarding vulnerable groups and their preferences for place of death.

目的:影响人们死亡地点的因素很多,但大多数人更愿意在家中去世。调查影响在不同地点死亡的因素可以加强临终关怀,让更多的人在自己喜欢的地方死去。该研究旨在调查影响死亡地点的障碍和促进因素,并比较不同死亡地点的促进因素和障碍:根据范围界定综述指南(PRISMA-ScR),在开放科学框架下进行了范围界定综述注册。在 MEDLINE、EMBASE、PUBMED、PsycINFO 和 CINAHL 中对 2013 年 1 月至 2023 年 12 月期间的文献进行了电子检索。只要是描述成人死亡地点的障碍和/或促进因素的研究均被纳入:本综述确定了 517 项研究,其中 95 项被纳入综述。综述确定了以下主题。疾病因素:疾病类型、死亡轨迹、治疗、症状和安全环境。个人因素:性别、年龄、种族、偏好;环境因素:医疗投入、教育和就业、社会支持、经济和居住地:影响死亡地点的因素很复杂,有些因素会累积影响人们的死亡地点。这些因素主要源于结构方面,使弱势群体更有可能在医院死亡,他们也更不可能接受姑息治疗和晚期护理规划。疾病类型和社会支持会进一步影响死亡地点。未来需要对弱势群体及其对死亡地点的偏好进行研究。
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引用次数: 0
What do health professionals think about implementing psilocybin-assisted therapy in palliative care for existential distress? A World Café qualitative study. 医护专业人员如何看待在姑息关怀中实施迷幻剂辅助疗法以治疗存在性苦恼?世界咖啡馆定性研究。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-09 DOI: 10.1017/S1478951524001494
Marianne Masse-Grenier, Sue-Ling Chang, Ariane Bélanger, Jean-François Stephan, Johanne Hébert, Pierre Deschamps, Louis Plourde, François Provost, Houman Farzin, Jean-Sébastien Fallu, Michel Dorval

Objectives: Promising studies show that psilocybin-assisted therapy relieves existential distress in patients with serious illnesses, a difficult condition to treat with current treatment options. There is growing interest in this therapy in palliative care. Canada recently amended its laws to allow physicians to request psilocybin for end-of-life distress. However, barriers to access remain. Since implementing psilocybin-assisted therapy within palliative care depends on the attitudes of healthcare providers willing to recommend it, they should be actively engaged in the broader discussion about this treatment option. We aimed (1) to identify issues and concerns regarding the acceptability of this therapy among palliative care professionals and to discuss ways of remedying them and (2) to identify factors that may facilitate access.

Methods: A qualitative study design and World Café methodology were adopted to collect data. The event was held on April 24, 2023, with 16 palliative care professionals. The data was analyzed following an inductive approach.

Results: Although participants were interested in psilocybin-assisted therapy, several concerns and needs were identified. Educational and certified training needs, medical legalization of psilocybin, more research, refinement of therapy protocols, reflections on the type of professionals dispensing the therapy, the treatment venue, and eligibility criteria for treatment were discussed.

Significance of results: Palliative care professionals consider psilocybin-assisted therapy a treatment of interest, but it generates several concerns. According to our results, the acceptability of the therapy and the expansion of its access seem interrelated. The development of guidelines will be essential to encourage wider therapy deployment.

目的:有研究表明,迷幻药辅助疗法可以缓解重病患者的生存压力,而目前的治疗方法很难缓解这种压力。人们对姑息治疗中的这种疗法越来越感兴趣。加拿大最近修订了法律,允许医生申请使用迷幻剂治疗临终痛苦。然而,获得治疗的障碍依然存在。由于在姑息治疗中实施迷幻剂辅助疗法取决于愿意推荐这种疗法的医疗服务提供者的态度,因此他们应该积极参与有关这种治疗方案的广泛讨论。我们的目标是:(1) 找出姑息关怀专业人员在接受这种疗法方面存在的问题和顾虑,并讨论纠正这些问题和顾虑的方法;(2) 找出可能促进接受这种疗法的因素:采用定性研究设计和世界咖啡馆方法收集数据。该活动于 2023 年 4 月 24 日举行,共有 16 名姑息关怀专业人士参加。采用归纳法对数据进行分析:尽管参与者对迷幻剂辅助疗法很感兴趣,但也发现了一些问题和需求。讨论了教育和认证培训需求、迷幻剂的医疗合法化、更多研究、治疗方案的完善、对提供治疗的专业人员类型、治疗场所和治疗资格标准的反思:结果的意义:姑息治疗专业人员认为迷幻剂辅助疗法是一种值得关注的治疗方法,但它也引发了一些问题。根据我们的研究结果,该疗法的可接受性和扩大其使用范围似乎是相互关联的。制定指导方针对于鼓励更广泛地使用该疗法至关重要。
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引用次数: 0
A qualitative study of specialist multidisciplinary clinician perspectives on barriers/facilitators to care for children with brain cancer and their families: "We're a little bit different to our adult counterparts". 一项关于多学科临床专科医生对护理脑癌儿童及其家人的障碍/促进因素的定性研究:"我们与成人患者有些不同"。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-09 DOI: 10.1017/S1478951524001421
Tim Luckett, Michelle DiGiacomo, Nicole Heneka, Domenica Disalvo, Maja Garcia, Isabelle Schaeffer, Robyn Attwood, Jane Phillips

Objectives: Children with brain cancer and their families have complex care needs throughout diagnosis, active treatment, long-term survivorship, and the palliative phase of illness. This study aimed to explore the perspectives of Australian specialist clinicians on barriers and facilitators to health care for children with brain cancer and their families.

Methods: A qualitative approach was taken using semi-structured interviews. Eligible participants were clinicians of any discipline providing care to children with brain cancer and their families in Australia. Interviews were conducted by telephone and asked about perceived strengths and weaknesses in health care and available resources for this population. Qualitative content analysis used a directed approach with inductive refinement.

Results: Eleven clinicians participated, 5 of whom were medical, 3 nursing, and 3 allied health. The overarching theme was that the rarity and diversity of brain tumors in children confers challenges to care that lead to variation in practice. Participants reported having to adapt care from guidelines and patient/family resources designed for adults with brain cancer and children with other cancers, and rely on clinical and research networks. Specialist comprehensive cancer care was generally perceived to offer the best model for accommodating the unique needs of each child/family, but barriers to access were highlighted for children in remote Australia, and long-term follow-up was perceived to be inadequate regardless of where children lived.

Significance of results: Until further brain cancer-specific paediatric guidelines become available, our findings highlight the need for communities of practice to share resources and reduce unwarranted variation.

Conclusion: Future research should focus on developing and evaluating guidelines and other resources specific to children with brain cancer, as well as informing suitable models for long-term follow-up care for survivors.

目标:患有脑癌的儿童及其家人在诊断、积极治疗、长期存活以及疾病缓解阶段都需要复杂的护理。本研究旨在从澳大利亚专科临床医生的角度,探讨脑癌儿童及其家人获得医疗保健的障碍和促进因素:方法:采用半结构化访谈的定性方法。符合条件的参与者是为澳大利亚脑癌儿童及其家人提供医疗服务的任何学科的临床医生。访谈是通过电话进行的,内容涉及该人群在医疗保健和可用资源方面的优势和劣势。定性内容分析采用定向方法,并进行归纳提炼:结果:11 名临床医生参与了访谈,其中 5 名是医疗人员,3 名是护理人员,3 名是联合医疗人员。总的主题是儿童脑肿瘤的罕见性和多样性给护理工作带来了挑战,导致实践中的差异。参与者报告说,他们必须根据为成年脑癌患者和其他癌症儿童患者设计的指南和患者/家庭资源调整护理方法,并依靠临床和研究网络。人们普遍认为,专科综合癌症护理为满足每个儿童/家庭的独特需求提供了最佳模式,但偏远地区的澳大利亚儿童在获得护理方面遇到的障碍也很突出,而且无论儿童住在哪里,长期随访都被认为是不够的:结果的意义:在制定出更多针对脑癌的儿科指南之前,我们的研究结果凸显了实践社区共享资源和减少不必要差异的必要性:未来的研究应侧重于开发和评估针对脑癌儿童的指南和其他资源,并为幸存者的长期后续护理提供合适的模式。
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引用次数: 0
An exploratory qualitative study on factors influencing the level of agreement in symptom reports in child-caregiver dyads. 关于影响儿童看护者二人症状报告一致程度的因素的探索性定性研究。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-10-07 DOI: 10.1017/S1478951524001172
Kathleen E Montgomery, Nadeen Alshakhshir, Mays Basha, Elizabeth Geenen, Leah Nyholm, Micah A Skeens

Objectives: Clinicians often rely on caregiver proxy symptom reports to treat cancer-related symptoms in children. Research has described disagreement between children's and caregivers' symptom reports. Factors influencing the level of agreement is an understudied area. Thus, this study aimed to examine potential factors contributing to the level of agreement between symptom reports provided by children and their caregivers.

Methods: Sixteen child-caregiver dyads participated separately in semi-structured interviews after completing a brief symptom measure independently using an electronic device. Child and caregiver quantitative symptom responses were reviewed in real-time and incorporated into the semi-structured interview. Sample characteristics and the level of agreement between symptom reports were calculated using descriptive statistics. Transcribed participant interviews were analyzed using content analysis.

Results: Nearly half of child-caregiver dyads exhibited a moderate (37.5%, n = 6) or low (18.75%, n = 3) level of agreement on the abbreviated symptom measure. Qualitative analysis identified 5 themes: recognizing symptoms, experiencing symptoms, communicating symptoms, re-assessing and treating symptoms, and influencing individual and relationship factors. Influencing individual, including a child's tendencies or personality traits, and relationship factors intersected the other themes, partially explained their symptom perceptions, and served to facilitate or hinder symptom communication.

Significance of results: Symptom communication is an important part of the symptom cycle, comprised of symptom recognition, experience, and management. Individual and relational factors may influence discrepancies in symptom perceptions between the child and caregiver. Clinicians and researchers should consider developing interventions to enhance symptom communication and promote collaboration between children and their caregivers to address symptom suffering during cancer treatment.

目的:临床医生通常依靠护理人员的代理症状报告来治疗儿童的癌症相关症状。研究表明,儿童和护理人员的症状报告之间存在分歧。影响意见一致程度的因素尚未得到充分研究。因此,本研究旨在探讨导致儿童及其照顾者提供的症状报告之间的一致程度的潜在因素:16 个儿童-看护者二人组在使用电子设备独立完成简短的症状测量后,分别参加了半结构化访谈。对儿童和照顾者的定量症状反应进行实时审查,并将其纳入半结构化访谈。采用描述性统计方法计算样本特征和症状报告之间的一致程度。采用内容分析法对转录的参与者访谈进行分析:近一半的儿童照护者二人组在症状简略测量上表现出中等(37.5%,n = 6)或低(18.75%,n = 3)的一致程度。定性分析确定了 5 个主题:认识症状、体验症状、交流症状、重新评估和治疗症状,以及影响个人和关系的因素。影响个体(包括儿童的倾向或个性特征)和关系因素与其他主题相互交叉,部分解释了他们对症状的看法,并促进或阻碍了症状沟通:症状交流是症状周期的重要组成部分,由症状识别、体验和管理组成。个体因素和关系因素可能会影响儿童和照顾者之间对症状认知的差异。临床医生和研究人员应考虑制定干预措施,加强症状交流,促进儿童与其照顾者之间的合作,以解决癌症治疗期间的症状痛苦。
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Palliative & Supportive Care
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