PROGRESS IN PALLIATIVE CARE最新文献

{"title":"Initial screening of compassion fatigue in a hospice palliative care team: validation of the silencing response scale","authors":"Jiyoung Chun, Ye-Jean Kim, Kyung-Ah Kang","doi":"10.1080/09699260.2022.2122316","DOIUrl":"https://doi.org/10.1080/09699260.2022.2122316","url":null,"abstract":"Aims and Objectives: This study aimed to validate a silencing response scale (SRS) for the initial screening of compassion fatigue in hospice palliative care teams (HPCT) members. Background: The silencing response is a defense mechanism that diverts caregivers’ attention from painful and difficult situations. This is an early stage of compassion fatigue. During the silencing response stage, the ability of HPCTs to listen to patients’ requests for assistance decreases, and their professional performance related to tasks and care provision weakens. Design: This study with psychometric evaluation was designed to validate the SRS for the initial screening of compassion fatigue among HPCTs. Methods: After translation-back translation and content validity indexing, 236 HPCT members working in hospice agencies designated by the Korean Ministry of Health and Welfare participated in this survey. The data were analyzed using SPSS and AMOS software. Results: The SRS developed in this study is a self-evaluation tool that employs a five-point Likert scale with 16 items: eight for disinterest, four for situation avoidance, and four for fear. The SRS met the criteria for construct, convergent, and criterion validity. The Cronbach's α for the full SRS was .87. Conclusions: To ensure HPCT well-being, prevention rather than burnout recovery should be prioritized. The SRS developed in this study can be used to screen for compassion fatigue at an early stage to prevent burnout and severe compassion fatigue among HPCT members.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42322106","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}

{"title":"The coping in heart failure (COPE-HF) partnership intervention for heart failure symptoms: Implications for palliative care","authors":"L. Graven, L. Abbott, G. Schluck","doi":"10.1080/09699260.2022.2124144","DOIUrl":"https://doi.org/10.1080/09699260.2022.2124144","url":null,"abstract":"Background A major focus of HF palliative care is to reduce symptom burden, yet managing HF symptoms is complex and requires adequate problem-solving skills. Telehealth interventions that provide support and problem-solving training may enhance symptom management and reduce symptom distress. Purpose The purpose of this study was to examine the preliminary effectiveness of the Coping in Heart Failure (COPE-HF) Partnership telehealth intervention (ClinicalTrials.gov Identifier: NCT05337293) on HF symptom frequency, severity, and symptom-related degree of interference with physical activity and enjoyment of life. Methods This was a three-group randomized controlled pilot study. The intervention group received one home visit and weekly (first month), then biweekly (months 2, 3) telephone calls. The attention group received a sham intervention on a similar schedule. The control group received usual care. The Heart Failure Symptom Survey was administered at baseline, 5, 9, and 13 weeks. Linear mixed modeling with restricted maximum likelihood estimation examined intervention effects on study outcomes. Results Of 107 enrolled participants, 66 completed the study. Participants were 61 years old; 56% non-Caucasian; and 54.2% male. Significant improvement in total HF symptoms and all sub-scales from baseline to 13 weeks were noted in the intervention group, with the largest improvement seen in HF symptom severity (md  = −2.59, <0.001, 95% CI [−3.65, −1.53]). Conclusion Providing support and tailored problem-solving training as a component of palliative care may empower patients to develop strategies to manage bothersome symptoms, thereby decreasing symptom severity. However, more research is needed to examine this intervention in a larger sample. Trial registration: ClinicalTrials.gov identifier: NCT05337293.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47554181","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}

{"title":"Examining the value and roles of palliative care nurse practitioners: A scoping review","authors":"Siu-Wai Chan, D. Wilson, A. Santos Salas","doi":"10.1080/09699260.2022.2120725","DOIUrl":"https://doi.org/10.1080/09699260.2022.2120725","url":null,"abstract":"Palliative care (PC) focuses on optimizing the quality of life for people of all ages with life-limiting illnesses. To date, Nurse Practitioner (NP)-led PC services are not common in Canada and other countries. This scoping review examined published research literature to determine the potential value and roles of NPs in relation to planning and providing PC. Medline, Embase, PsychINFO, CINAHL, and SCOPUS databases were searched (all years, to an end date of January 2022) to reveal peer-reviewed, English-language research and review articles. A total of 18 published research and review articles were identified. These described the PC NP role as unique with high-level, advanced assessment and diagnostic skills, and with PC NPs having the potential to optimize PC provision in numerous settings. These articles also revealed NPs can enhance the quality of PC and improve access to PC services at a reduced cost. Moreover, NPs were more likely and able to address PC psychosocial needs and improve care coordination. The review findings indicate PC education for all NPs and education about NP roles for other health disciplines should be explored to expand PC NP positions as NP-led PC services could potentially improve access to PC services and also raise the quality of PC services.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48779262","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}

{"title":"Does advance care planning affect relatives’ healthcare-seeking behaviour?","authors":"Elisabeth S. Noerup, M. H. Skorstengaard, A. Jensen, Mai-Britt Guldin, M. Neergaard","doi":"10.1080/09699260.2022.2119326","DOIUrl":"https://doi.org/10.1080/09699260.2022.2119326","url":null,"abstract":"Background Relatives of terminally ill patients most often experience distress. Advance Care Planning (ACP) has been developed to plan end-of-life care and support patients and relatives. ACP has been shown to have a positive impact on relatives of terminally ill patients and may affect their healthcare-seeking behaviour. The aim of the study was to investigate associations between ACP and relatives’ contacts with general practitioners (GPs) and hospital admissions. Methods Based on a prior randomized controlled trial we conducted a prospective longitudinal study. Relatives of patients formerly randomized into one ACP conversation or control group were included. Information regarding relatives’ GP and hospital contacts was achieved through healthcare registries using personal Civil Registration numbers. The content, distribution, and median number of GP and hospital contacts were analyzed in two time windows: the caregiving period (from randomization until loss) and the bereavement period (from loss until six months after). Results No significant difference in the median number of GP or hospital contacts between the two groups was found. However, in the caregiving period, we found a significant difference in the distribution of GP contacts (p = 0.022); More relatives in the control group had no contact with their GP. Conclusion The prior ACP conversation did not affect the median number of GP or hospital contacts among relatives, but statistically significantly more relatives in the ACP group had a least one GP contact in the caregiving period. The study emphasizes the importance of performing ACP trials with outcomes in relation to relatives and patients.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47236783","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}

{"title":"Spiritual distress in dialysis: A case report","authors":"Hannah Douglass-Molloy, Mandy M. Law, B. Le, Naomi T Katz","doi":"10.1080/09699260.2022.2090052","DOIUrl":"https://doi.org/10.1080/09699260.2022.2090052","url":null,"abstract":"The dialysis cohort in Australia, as in other parts of the world, is becoming increasingly elderly and frail. The incidence of dialysis withdrawal prior to death is also increasing, often driven by clinical deterioration and/or psychosocial factors. Despite expertise in the biomedical aspects of dialysis, nephrologists may feel less equipped to explore the existential and spiritual aspects influencing a patient’s decision-making. We present the case of an elderly woman for whom dialysis became increasingly challenging and burdensome as her global condition deteriorated. Despite multiple discussions being held regarding elective cessation of dialysis the treating team was unable to progress to a decision to withdraw. Shortly before her death the patient revealed, for the first time, the key influences of her religious beliefs to the community-based palliative care team. She described a strong Catholic faith and although unafraid of death itself, she was fearful that her decision to stop dialysis would be akin to suicide and therefore a mortal sin. Her condition deteriorated before these concerns could be further explored and she died in the intensive care setting with a high level of intervention. All people have a spiritual dimension that may influence their attitudes towards death and medical decision-making. If not elucidated, it can create barriers to appropriate care, as in this patient. There are many approaches to exploring these domains including validated tools to support clinicians who have not received dedicated training.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-07-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44738294","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}

{"title":"Compassionate community connectors: a distinct form of end-of-life volunteering","authors":"Kerrie Noonan, Bruce Rumbold, S. Aoun","doi":"10.1080/09699260.2022.2090051","DOIUrl":"https://doi.org/10.1080/09699260.2022.2090051","url":null,"abstract":"Public health approaches to palliative care have long promoted the contribution of formal and informal volunteering to providing effective end-of-life care in neighbourhoods and communities. A central strategy for this is a ‘compassionate communities’ approach that focuses on building care networks and developing community members’ capacities in end-of-life care. There is anecdotal evidence of differences in the motivations and life experiences of traditional palliative care volunteers and volunteers in compassionate community programs. There is however very little research into volunteers seeking a compassionate communities orientated role. This study describes the motivations, experiences and characteristics of volunteers participating in a program called compassionate connectors in Western Australia. Twenty volunteers with a variety of caregiving experiences participated in the pilot study through submitting an expression of interest for recruitment. Analysis indicated that the compassionate community connector role attracted experienced community volunteers who were already familiar with community services and end-of-life supports in their community, demonstrating a pre-existing understanding of the practical and emotional supports families may need for end-of-life care. They articulated some key differences with the hospice/palliative care volunteers and how they wish to engage in fresh ways with their community and move beyond traditional volunteering to exercise more autonomy in providing care. This article argues that clarifying these characteristics will benefit new compassionate community initiatives and provide important information for hospice and palliative care services that may be considering undertaking compassionate community projects. Conceptual clarity about these differing roles will be helpful for all collaborations and partnerships that involve volunteer recruitment and management.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44479196","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}

{"title":"Palliative Care and Thanatechnology","authors":"Jason Mills","doi":"10.1080/09699260.2022.2087270","DOIUrl":"https://doi.org/10.1080/09699260.2022.2087270","url":null,"abstract":"The field of palliative care continues to grow and evolve over time, according to various societal and technological contexts. The recent publication of the Oxford Textbook of Public Health Palliative Care represents a pivotal step in the evolution of the field, shining a light on more inclusive and populationbased public health approaches to reframe death, dying, loss and caregiving. It also introduces preliminary conceptual work intended to bridge often perceived divides between increasing technological advances and the social model of public health palliative care. This points to the need for further consideration of the nexus between palliative care and thanatechnology. The term thanatechnology was coined by Sofka in the 1990s with reference to then current and emerging communication technologies that could be used to facilitate death education, grief counselling and thanatology research. Sofka and colleagues later described it as ‘a conduit for living, dying, and grieving in contemporary society’. Over the following decade, the use of various digital technologies spread widely to influence nearly all aspects of modern life, including a variety of social media platforms used in both professional and non-professional contexts. However, implications of this growing use, from a thanatological perspective, may not be obvious to users. Mortal as human existence is, digital footprints are not necessarily washed away in the sands of time. Indeed, it has been highlighted that social media platforms are ‘full of dead people’., It is these types of digital death and digital afterlife that characterize thanatechnologies in their capacity to maintain humanity through, for example, memorialization and the conscious cultivation of digital legacies to be left behind. For the bereaved, some may find a perpetual online presence comforting whilst for others this may cause distress; importantly, instructions can be issued in advance to accommodate individual preferences but users need to be aware of how to do this. Recognition of the need to support people in making informed choices about options available can be found in guides developed for the general population by national palliative care organizations. See for example, Palliative Care Australia’s ‘Guide to a social media afterlife’ (https://palliativecare.org. au/wp-content/uploads/2015/08/PCA001_Social-Media -Guide_ONLINE.pdf). Apart from social media presence, other key examples of using thanatechnology include the consideration of digital assets and use of end-of-life planning software (see for example, https://www.mywishes.co.uk). The remit of palliative care includes the promotion of holistic health and wellbeing, during periods both before and after death, for everyone living with dying, loss and bereavement. It is not surprising, then, that both professional and informal caregivers have adopted the use of digital technologies to enable care and achieve personalized goals of care. Although not labell","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43640270","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}

{"title":"A novel nurse-coordinated home care model for palliative care in advanced cancer: A pilot interventional study from suburban Mumbai","authors":"A. Ghoshal, A. Damani, J. Deodhar, L. Quadros, K. Ganpathy, M. Muckaden","doi":"10.1080/09699260.2022.2081440","DOIUrl":"https://doi.org/10.1080/09699260.2022.2081440","url":null,"abstract":"Background: Demand for home-based health care services has increased considerably in India. Traditionally, home-based care services are physician-led which puts pressure on the understaffed healthcare sector. This study aims to pilot a new model, the Nurse coordinated Home Care (NCHC) service in suburban Mumbai (India). Methods: In this pilot interventional study, 101 patients with advanced cancer along with their caregivers were enrolled over 16 months. The nurse coordinator (NC) administered study questionnaires every month. Follow-up visits were based on case severity. Local general practitioners (LGPs) were identified and involved in patient care. Results: Severe Edmonton Symptom Assessment System (ESAS) symptoms were reduced by >2 points in 4 out of 7 instances (57.1%). The number of physician visits was lesser than NC visits (162 vs 341), home deaths were more than hospital deaths (57 vs 14), study retention rate was 99%, 87.5% LGPs participated, 98% of questionnaires were returned. Satisfaction on FAMCARE-2 showed a maximum score of ‘Satisfied’, caregiver burden in ZBI was little/no for 95%, mean scores for ESAS pain was 2, PPSv2 score was 70%−100% for the majority, mean scores on EORTC QLQ-C15-PAL were 77 - Functional scales, 21.5 - Symptom scales, and 64.3 - Global health status/quality of life. NCHC median intervention costs per patient were less than usual care (₹2049.50 vs ₹11490.09). Conclusion: A home care service model that includes nurse coordination and case management streamlines access to healthcare services and resources while reducing the cost of care along with reduced caregiver burden, with increased levels of satisfaction.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47580632","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}

{"title":"Facilitators of and barriers to continuity with GPs in primary palliative cancer care: A mixed-methods systematic review","authors":"Emilie Couchman, S. Ejegi-Memeh, S. Mitchell, C. Gardiner","doi":"10.1080/09699260.2022.2074126","DOIUrl":"https://doi.org/10.1080/09699260.2022.2074126","url":null,"abstract":"Background: General practitioners (GPs) have a key role in palliative care provision for patients with advanced cancer. Continuity is valued by patients with such needs but is limited within current primary care systems. Exploration of the facilitators of and barriers to continuity in this complex context is required. Aim: To identify facilitators of and barriers to continuity with GPs in primary palliative care among people with advanced cancer and/or their close persons. Design: Mixed-methods systematic review with content and thematic analyses. Data sources: Keyword searches were carried out in five databases (Ovid MEDLINE(R), Ovid EMBASE(R), CINAHL, Web of Science, and Cochrane), policy documents and grey literature search engines in December 2020. Evidence was reviewed using relevant quality appraisal tools; data were extracted and tabulated. Findings were reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement, and the review was prospectively registered on PROSPERO. Results: Seventeen studies were included. Six studies originated from the UK; six from Europe; three from Canada; and two from Australia. Two studies were mixed-methods, four presented quantitative data, and 11 papers reported on qualitative studies. Four themes were developed: (1) the role of GPs in facilitating continuity; (2) the role of patients and/or close persons in facilitating continuity; (3) changing needs throughout the disease trajectory; and (4) the organisational context in primary care. Conclusions: Facilitators of and barriers to continuity in primary palliative care are outlined. Further research is required to explore how patients and/or their close persons experience continuity in primary palliative care. Specifically, the work required of them to achieve their desired level of continuity, and their capacity for action in this context, needs further attention.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44229912","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}

{"title":"National survey of sibling support services in children’s hospitals","authors":"Kim Mooney-Doyle, Quinn Franklin, Samantha Burley, Maggie C. Root, T. Akard","doi":"10.1080/09699260.2022.2094173","DOIUrl":"https://doi.org/10.1080/09699260.2022.2094173","url":null,"abstract":"Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support services for siblings are critical to promote positive outcomes and decrease negative consequences and align with parents’ desires to support all of their children. These include services offered to the sibling or family to provide comfort or enhance the quality of life during a child’s serious illness. Despite national standards, sibling support services are often difficult for families to access. The aim of this study was to describe sibling support activities provided through teaching children’s hospitals across the United States using a cross-sectional, descriptive design. Results indicate most hospitals surveyed offer sibling support services that focus on sibling education about the illness; parent education on how to anticipate the siblings needs; and activities for families to do together, yet face barriers to delivery. Services focused directly on siblings and actively supporting their adaptation were least often provided and less than half reported screening siblings for psychosocial distress. Findings suggest that sibling support services may be an important resource to minimize distress and promote adaptation for siblings. This description of current and available sibling support services is an important starting point for enhancing services, policies, and institutions that fully envelope siblings into patient- and family-centered care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44938424","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}