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.
{"title":"Developing a Sitting Simple Baduanjin program for advanced cancer patients with the fatigue-sleep disturbance symptom cluster: A feasibility study.","authors":"Huina Zou, Liangying Chen, Tingjin Duan, Xiaoyan Lin, Jianwei Zheng, Huimin Xiao","doi":"10.1017/S1478951524001482","DOIUrl":"https://doi.org/10.1017/S1478951524001482","url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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 12<sup>th</sup> weeks of the intervention. Qualitative interviews were also conducted after the program.</p><p><strong>Results: </strong>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.</p><p><strong>Significance of results: </strong>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.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-7"},"PeriodicalIF":1.9,"publicationDate":"2024-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142477805","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-14DOI: 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。
{"title":"Depression, anxiety, psychological distress, and perceived social support among Ugandan palliative care providers during the COVID-19 pandemic.","authors":"Mariah Horvath, Simon Kizito, Roya Ghiaseddin, Lisa Christine Irumba, Mark Donald Mwesiga, Lacey N Ahern","doi":"10.1017/S1478951524000889","DOIUrl":"https://doi.org/10.1017/S1478951524000889","url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Significance of results: </strong>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.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-8"},"PeriodicalIF":1.9,"publicationDate":"2024-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142477804","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-14DOI: 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.
{"title":"Bereavement coping strategies among healthcare professionals: A qualitative systematic review and meta-synthesis.","authors":"Hanbo Feng, Yang Shen, Xiaohan Li","doi":"10.1017/S1478951524001147","DOIUrl":"https://doi.org/10.1017/S1478951524001147","url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Significance of the results: </strong>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.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-13"},"PeriodicalIF":1.9,"publicationDate":"2024-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142477803","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-11DOI: 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.
{"title":"Illness-related communication between siblings and parents of children with chronic illness and life-limiting conditions: A qualitative analysis.","authors":"Lauren Kelada, Tiina Jaaniste, Anjali Cuganesan, Wei Ling Audrey Chin, Sarah Caellainn Tan, Joanna Wu, Robert Ilin, Eden Robertson, Donna Drew, Claire E Wakefield","doi":"10.1017/S1478951524001056","DOIUrl":"https://doi.org/10.1017/S1478951524001056","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objectives: </strong>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).</p><p><strong>Methods: </strong>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 (<i>n</i> = 86) or LLC (<i>n</i> = 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.</p><p><strong>Results: </strong>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.</p><p><strong>Significance of results: </strong>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.</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":"142401618","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-11DOI: 10.1017/S1478951524001573
Palasara Brahmani Laras
{"title":"A journey through psychosocial and spiritual: Hurry up and be steadfast in accepting the realities of life.","authors":"Palasara Brahmani Laras","doi":"10.1017/S1478951524001573","DOIUrl":"https://doi.org/10.1017/S1478951524001573","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-2"},"PeriodicalIF":1.9,"publicationDate":"2024-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142401527","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-11DOI: 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}
Pub Date : 2024-10-11DOI: 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.
{"title":"Barriers and facilitators for place of death: A scoping review.","authors":"Tina Pedersen, Mette Raunkiær, Vibeke Graven","doi":"10.1017/S1478951524001500","DOIUrl":"https://doi.org/10.1017/S1478951524001500","url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Significance of results: </strong>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.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-14"},"PeriodicalIF":1.9,"publicationDate":"2024-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142401616","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-09DOI: 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.
{"title":"What do health professionals think about implementing psilocybin-assisted therapy in palliative care for existential distress? A World Café qualitative study.","authors":"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","doi":"10.1017/S1478951524001494","DOIUrl":"https://doi.org/10.1017/S1478951524001494","url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Significance of results: </strong>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.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-11"},"PeriodicalIF":1.9,"publicationDate":"2024-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142394290","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-09DOI: 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.
{"title":"A qualitative study of specialist multidisciplinary clinician perspectives on barriers/facilitators to care for children with brain cancer and their families: \"<i>We're a little bit different to our adult counterparts</i>\".","authors":"Tim Luckett, Michelle DiGiacomo, Nicole Heneka, Domenica Disalvo, Maja Garcia, Isabelle Schaeffer, Robyn Attwood, Jane Phillips","doi":"10.1017/S1478951524001421","DOIUrl":"https://doi.org/10.1017/S1478951524001421","url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Significance of results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-6"},"PeriodicalIF":1.9,"publicationDate":"2024-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142394289","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-10-07DOI: 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.
{"title":"An exploratory qualitative study on factors influencing the level of agreement in symptom reports in child-caregiver dyads.","authors":"Kathleen E Montgomery, Nadeen Alshakhshir, Mays Basha, Elizabeth Geenen, Leah Nyholm, Micah A Skeens","doi":"10.1017/S1478951524001172","DOIUrl":"https://doi.org/10.1017/S1478951524001172","url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>Nearly half of child-caregiver dyads exhibited a moderate (37.5%, <i>n</i> = 6) or low (18.75%, <i>n</i> = 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.</p><p><strong>Significance of results: </strong>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.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":" ","pages":"1-11"},"PeriodicalIF":1.9,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142381988","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}