Palliative Care and Social Practice最新文献

{"title":"How does community engagement evolve in different compassionate community contexts? A longitudinal comparative ethnographic research protocol.","authors":"Émilie Lessard, Isabelle Marcoux, Serge Daneault, Andreea-Catalina Panaite, Lise Jean, Mélodie Talbot, Dale Weil, Ghislaine Rouly, Libby Sallnow, Allan Kellehear, Antoine Boivin","doi":"10.1177/26323524231168426","DOIUrl":"10.1177/26323524231168426","url":null,"abstract":"<p><strong>Background: </strong>Compassionate communities build on health promoting palliative care that aims to address gaps in access, quality, and continuity of care in the context of dying, death, loss, and grief. While community engagement is a core principle of public health palliative care, it has received little attention in empirical studies of compassionate communities.</p><p><strong>Objectives: </strong>The objectives of this research are to describe the process of community engagement initiated by two compassionate communities projects, to understand the influence of contextual factors on community engagement over time, and assess the contribution of community engagement on proximal outcomes and the potential for sustaining compassionate communities.</p><p><strong>Research approach and design: </strong>We use a community-based participatory action-research approach to study two compassionate communities initiatives in Montreal (Canada). We develop a longitudinal comparative ethnographic design to study how community engagement evolves in different compassionate communities contexts.</p><p><strong>Methods and analysis: </strong>Data collection includes focus groups, review of key documents and project logbooks, participant observation, semi-structured interviews with key informants, and questionnaires with a focus on community engagement. Grounded in the ecology of engagement theory and the Canadian compassionate communities evaluation framework, data analysis is structured around longitudinal and comparative axes to assess the evolution of community engagement over time and to explore the contextual factors influencing the process of community engagement and its impacts according to local context.</p><p><strong>Ethic: </strong>This research is approved by the research ethics board of the Centre hospitalier de l'Université de Montréal (approval certificate #18.353).</p><p><strong>Discussion: </strong>Understanding the process of community engagement in two compassionate communities will contribute to a deeper understanding of the relationships between local context, community engagement processes, and their effect on compassionate communities outcomes.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/a8/ee/10.1177_26323524231168426.PMC10126598.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9363759","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pandemic delay: social implications and challenges for palliative care.","authors":"Emma Kirby, John I MacArtney","doi":"10.1177/26323524231159146","DOIUrl":"10.1177/26323524231159146","url":null,"abstract":"","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2023-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10034307/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9192465","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Developing a compassionate community: a Canadian conceptual model for community capacity development.","authors":"Mary Lou Kelley","doi":"10.1177/26323524231193040","DOIUrl":"https://doi.org/10.1177/26323524231193040","url":null,"abstract":"<p><p>The purpose of this article is to share a Canadian model called <i>Developing a Compassionate Community (DCC)</i> in which aging, dying, caregiving, and grieving are everyone's responsibility. The model provides a research-informed practice guide for people who choose to adopt a community capacity development approach to developing a compassioante community. Based on 30 years of Canadian research by the author in rural, urban, First Nations communities, and long-term care homes, the <i>DCC</i> model offers a practice theory and practical tool. The model incorporates the principles of community capacity development which are as follows: change is incremental and in phases, but nonlinear and dynamic; the change process takes time; development is essentially about developing people; development builds on existing resources (assets); development cannot be imposed from the outside; and development is ongoing (never-ending). Community capacity development starts with citizens who want to make positive changes in their lives and their community. They become empowered by gaining the knowledge, skills, and resources they need. The community mobilizes around finding solutions rather than discussing problems. Passion propels their action and commitment drives the process. The strategy for change is engaging, empowering, and educating community members to act on their own behalf. It requires mobilizing networks of families, friends, and neighbors across the community, wherever people live, work, or play. Community networks are encouraged to prepare for later life, and for giving and getting help among themselves. This Canadian model offers communities one approach to developing a compassionate community and is a resource for implementing a public health approach to end-of-life care in Canada. The model is also available to be evaluated for its applicability beyond Canada and is designed to be adapted to new contexts if desired.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/a7/42/10.1177_26323524231193040.PMC10467181.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10491397","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Expectations and barriers to the utilization of specialist palliative care services among persons living with cancer in Ghana: an exploratory qualitative study.","authors":"Adwoa Bemah Boamah Mensah,&nbsp;Abena Agyekum Poku,&nbsp;Kofi Boamah Mensah,&nbsp;Joshua Okyere,&nbsp;Maurice Mikare,&nbsp;Felix Apiribu,&nbsp;Emelia Osei Boakye,&nbsp;Joe-Nat Clegg Lamptey","doi":"10.1177/26323524231193042","DOIUrl":"https://doi.org/10.1177/26323524231193042","url":null,"abstract":"<p><strong>Background: </strong>The need for palliative care among patients living with cancer is increasing globally. This need is far greater in resource-constrained settings like Ghana where there is a high unmet need for palliative care services. Consequently, there are lapses in the current palliative care regime, thus, resulting in suboptimal utilization.</p><p><strong>Objective: </strong>The study aims to explore patients living with cancer's expectations of palliative care services and examine the barriers that impede palliative care utilization.</p><p><strong>Design: </strong>Descriptive exploratory qualitative design.</p><p><strong>Methods: </strong>A total of 15 patients living with cancer and receiving treatment in a tertiary health facility were purposively sampled to participate in this study. Semi-structured interviews were conducted. The data were transcribed and inductively analysed following Collaizi's qualitative analysis framework.</p><p><strong>Results: </strong>From the analysis, the findings were grouped under two main categories: perceived expectations and barriers to utilizing palliative care. The participants expected to receive meaningful communication about their condition and prognosis; they also expected to be actively involved in palliative care decision-making. Regarding the barriers, the following themes emerged: financial constraints, unfavourable health appointment schedules, problems with the distance to the health facility, poor referral and follow-up from oncology specialists and being unaware of the availability of palliative care services.</p><p><strong>Conclusion: </strong>In conclusion, there is a need to actively involve patients and their families in all decision-making along the continuum of palliative care service delivery. The study underscores the need for Ghana to implement an integration of palliative care services in primary healthcare facilities to avert the challenges that distance to tertiary healthcare facilities poses to palliative care utilization. Service providers must implement awareness programmes to enable patients to better comprehend palliative care services.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/29/44/10.1177_26323524231193042.PMC10467251.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10491401","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ways and means to comfort people at the end of life: how is the nurse a privileged player in this process?","authors":"Raquel Alexandra Machado Pereira,&nbsp;Patrícia Cruz Pontífice Sousa Valente Ribeiro","doi":"10.1177/26323524231182730","DOIUrl":"https://doi.org/10.1177/26323524231182730","url":null,"abstract":"<p><strong>Background: </strong>Comfort is a necessity throughout life, and it is a key element in the practice of nursing care for the patient at the end of life. A particular human need and a state related to the experience and culture of the person at the end of life constitute the target of attention and nursing intervention, being a very relevant indicator of the quality of health care. This article is part of a doctoral study in the field of comfort in a palliative care unit, and these are some of the partial results that emerged.</p><p><strong>Objectives: </strong>To understand the ways and means of comfort perceived by the person at the end-of-life hospitalized in a palliative care unit, their family, and health staff as well as the value of the nurse in this process.</p><p><strong>Design: </strong>Qualitative study using an ethnographic approach.</p><p><strong>Methods: </strong>We conducted semistructured interviews with 18 patients at the end of life and their matched significant family members (18) and 21 health professionals. We also conducted participant observation of care situations.</p><p><strong>Results/discussion: </strong>The ways and means of providing comfort are centered on strategies developed by the entire multidisciplinary team. During this whole process, one of the categories that emerged from the ethnography was the nurse as a privileged player, representing an absolutely essential role in all phases. The results revealed that nurses play a very important role in end-of-life comfort, which is based on a predisposition for end-of-life care (active listening, empathy, congruence, and biographical narrative) and focused attention (global care, attention to detail, family support, and opposition to therapeutic obstinacy).</p><p><strong>Conclusions: </strong>The different ways and means of providing comfort aim to increase care, relieve, and invest in potential different forms of comfort and nurses are recognized by all those involved in this process as someone essential to providing comfort care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10345917/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9816137","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Place of death among foreign-born individuals: a national population-based register study.","authors":"Emma Lundberg,&nbsp;Anneli Ozanne,&nbsp;Cecilia Larsdotter,&nbsp;Susanna Böling,&nbsp;Lisen Dellenborg,&nbsp;Daniel Ensted,&nbsp;Joakim Öhlén","doi":"10.1177/26323524231185157","DOIUrl":"https://doi.org/10.1177/26323524231185157","url":null,"abstract":"<p><strong>Background: </strong>Relatively little is known about where foreign-born individuals die in Sweden and how birth region might influence place of death. Thus, there is a need for population-based studies investigating place of death and associated factors among foreign-born individuals.</p><p><strong>Objectives: </strong>The aim of this study was to identify variations in place of death among foreign-born individuals residing in Sweden and to compare place of death between the foreign- and domestic-born population. We also examine the association between place of death, underlying cause of death and sociodemographic characteristics among the foreign-born population.</p><p><strong>Design: </strong>A population-based register study.</p><p><strong>Methods: </strong>All deceased individuals ⩾18 years of age in Sweden with a registered place of death between 2012 and 2019 (<i>n</i> = 682,697). Among these, 78,466 individuals were foreign-born. Univariable multinomial logistic regression modelling and multivariable multinomial logistic regression analyses were performed.</p><p><strong>Results: </strong>Overall, hospital was the most common place of death among the foreign-born population. However, there were variations in place of death related to region of birth. Compared to domestic-born, a higher proportion of foreign-born individuals dies at home, the majority of whom were born on the African continent.</p><p><strong>Conclusion: </strong>Region of birth is one of the several factors associated with place of death among foreign-born individuals. Further research is needed to explore both preferences and barriers to place of death among foreign-born individuals.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/b9/31/10.1177_26323524231185157.PMC10350762.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9827265","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Erratum to The impacts of partnering with cancer patients in palliative care research: a systematic review and meta-synthesis.","authors":"","doi":"10.1177/26323524231185693","DOIUrl":"https://doi.org/10.1177/26323524231185693","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.1177/26323524221131581.].</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10331324/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10172620","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Inpatient hospice admissions. Who is admitted and why: a mixed-method prospective study.","authors":"Erna Haraldsdottir,&nbsp;Anna Lloyd,&nbsp;Martyn Bijak,&nbsp;Libby Milton,&nbsp;Anne M Finucane","doi":"10.1177/26323524231182724","DOIUrl":"https://doi.org/10.1177/26323524231182724","url":null,"abstract":"<p><strong>Background: </strong>Over the next two decades, the numbers of people who will need palliative care in the United Kingdom and Ireland is projected to increase. Hospices play a vital role supporting people who require specialist palliative care input through community-based and inpatient palliative care services. Evidence is needed to understand the role of these different services to inform future service development.</p><p><strong>Objectives: </strong>To describe the reasons for admission, and outcomes at the end of the stay, for patients admitted to two hospice inpatient units (IPUs).</p><p><strong>Design: </strong>This was a mixed-methods study using a convergent, parallel mixed-methods design.</p><p><strong>Methods: </strong>We reviewed the case notes of all patients admitted to two hospice inpatient units from July to November 2019; conducted semi-structured interviews with patients and families; as well as brief structured interviews with inpatient unit staff.</p><p><strong>Results: </strong>Two hundred fifty-nine patients were admitted to a hospice IPU, accounting for 276 admissions in total. Overall, 53% were female; median age was 71 years (range: 26-95 years). Most patients (95%) were White British or Scottish, and 95% had a cancer diagnosis. Most patients were admitted from the community, under one-third were admitted from hospital. Most (85%) had previous palliative care involvement. Nearly, half had district nurse support (48%). Worry and anxiety was frequently reported as a reason for admission, alongside physical concerns. Median length of stay was 12 days, and 68% died during their stay. Hospice was recorded as the preferred place of care for 56% of those who died there.</p><p><strong>Conclusions: </strong>Sustained efforts to promote the hospice as place of care for people with conditions other than cancer are needed alongside greater clarity regarding of the role of the hospice IPU, and who would benefit most from IPU support.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/d7/3b/10.1177_26323524231182724.PMC10333996.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10192783","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Assessing the impact of palliative care admission of end-of-life cancer adults.","authors":"Jose F Díez-Concha,&nbsp;Diego Mauricio Gómez-García,&nbsp;Julián Alberto Agudelo,&nbsp;Edwin Alexander Lizarazo Herrera","doi":"10.1177/26323524231198545","DOIUrl":"https://doi.org/10.1177/26323524231198545","url":null,"abstract":"<p><strong>Background: </strong>There is evidence that early admission to the palliative care (PC) program in adult cancer patients improves symptoms management, reduces unplanned hospital admissions, minimizes aggressive cancer treatments, and enables patients to make decisions about their end-of-life (EOL) care.</p><p><strong>Objectives: </strong>This retrospective cohort study aimed to determine whether late admission to a PC program is associated with aggressive treatment at the EOL in adult patients with oncological diseases from their admission until death.</p><p><strong>Design/methods: </strong>The study evaluated the aggressiveness in EOL management in patients with advanced stage oncological diseases who died between 2017 and 2019. The study population was divided into two groups based on the time of admission to the PC program. Aggressiveness at the EOL was measured using five criteria: treatment, hospital admission and duration, emergency department care, and/or intensive care unit utilization.</p><p><strong>Results: </strong>The study found a significant difference in the rate of aggressive EOL treatments between late admission to PC care and early admission [adjusted EOL 79.6% <i>versus</i> 70.4%; relative risk (RR): 1.98, 90% CI: 1.08-3.59, <i>p</i>: 0.061]; In the analysis of secondary variables, a significant association was observed between early admission to PC and the suspension of active treatments at the EOL, leading to a decrease in aggressiveness (77% <i>versus</i> 55.8%; RR: 1.38, 95% CI: 1.14-1.67, <i>p</i>: 0.004).</p><p><strong>Conclusion: </strong>Our findings suggest that early referral to PC services is associated with less aggressive treatment at the EOL, including suspension of active treatments.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/b1/6e/10.1177_26323524231198545.PMC10496487.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10609409","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Compassionate communities: How to assess their benefit? A protocol of a collaborative study between different countries.","authors":"Valentina González-Jaramillo,&nbsp;Alicia Krikorian,&nbsp;Vilma Tripodoro,&nbsp;Margarita Jorge,&nbsp;Sofia C Zambrano,&nbsp;Francy López,&nbsp;Maria Clara Vélez,&nbsp;Tatiana Noguera,&nbsp;Sebastián Orellana,&nbsp;Silvina Montilla,&nbsp;Andri Christen-Cevallos Rosero,&nbsp;Steffen Eychmüller","doi":"10.1177/26323524231170885","DOIUrl":"https://doi.org/10.1177/26323524231170885","url":null,"abstract":"<p><strong>Background: </strong>Communities and local governments invest in compassionate communities (CCs) a great deal of time, money, effort, and work. However, it is not known whether the CCs are having the effect they are expected to have, so the value of continuing with these initiatives is unknown, and there is a need for a model for evaluating CCs to solve the question.</p><p><strong>Objectives: </strong>To identify a set of core outcomes or benefits that should be measured to assess the impact of the CCs.</p><p><strong>Design: </strong>Multiple-methods study involving three communities, each in a different country (Argentina, Colombia, and Switzerland).</p><p><strong>Methods and analysis: </strong>To identifying the set of core outcomes, which is the first step in developing the CC evaluation model, five phases will follow: online meetings, literature review, fieldwork, Delphi survey, and social transfer. We will involve members of the local communities of Bern, Buenos Aires, and Medellin at three different levels: (1) citizens (e.g. patients, caregivers, and family members), (2) organizations and institutions involved in the program implementation (e.g. health care organizations, churches, non-governmental organizations, and schools), and (3) political and governmental sectors.</p><p><strong>Ethics: </strong>The study will be conducted following existing international regulations and guidance such as the Declaration of Helsinki. The ethics committee of Pallium Latin America and the ethics committee of the canton of Bern considered our application exempt from the need for approval. Ethics approval in Bern and Buenos Aires is in the process of being obtained. The ethics committee of the Pontifical Bolivarian University approved this protocol.</p><p><strong>Discussion: </strong>We expect that this project will help bridge the gap in knowledge regarding the measurable impact of the CCs and enhance more CC development.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/df/13/10.1177_26323524231170885.PMC10176585.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10349844","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}