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Implementation Models of Compassionate Communities and Compassionate Cities at the End of Life: A Systematic Review.

ABSTRACT: In the last decade, we have seen a growth of Compassionate Communities and Cities (CCC) at the end of life. There has been an evolution of organizations that help construct Community-Based Palliative Care programs. The objective is to analyze the implementation, methodology and effectiveness of the CCC models at the end of life. We conducted a systematic review following PRISMA ScR Guideline. The protocol was registered on PROSPERO (CRD42017068501). Five databases (MEDLINE, EMBASE, Web of Science, CINAHL and Google Scholar) were searched for studies (from 2000 to 2018) using set eligibility criteria. Three reviewers screened full-texts articles and extracted study data. Outcomes were filled in a registration form which included a narrative synthesis of each article. We screened 1975 records. We retrieved 112 articles and included 31 articles for the final analysis: 17 descriptive studies, 4 interventions studies, 4 reviews and 6 qualitative studies. A total of 11 studies regard the development models of CCC at the end of life, 15 studies were about evaluation of compassionate communities' programs and 5 studies were about protocols for the development of CCC programs. There is poor evidence of the implementation and evaluation models of CCC at the end of life. There is little and low-/very low-quality evidence about CCC development and assessment models. We found no data published on care intervention in advance disease and end of life. A global model for the development and evaluation of CCC at the end of life seems to be necessary.

SUBMITTER: Librada-Flores S

PROVIDER: S-EPMC7504622 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Implementation Models of Compassionate Communities and Compassionate Cities at the End of Life: A Systematic Review.

Librada-Flores Silvia S Nabal-Vicuña María M Forero-Vega Diana D Muñoz-Mayorga Ingrid I Guerra-Martín María Dolores MD

International journal of environmental research and public health 20200828 17

In the last decade, we have seen a growth of Compassionate Communities and Cities (CCC) at the end of life. There has been an evolution of organizations that help construct Community-Based Palliative Care programs. The objective is to analyze the implementation, methodology and effectiveness of the CCC models at the end of life. We conducted a systematic review following PRISMA ScR Guideline. The protocol was registered on PROSPERO (CRD42017068501). Five databases (MEDLINE, EMBASE, Web of Scienc ...[more]

PMID: 32872244

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Project description:BackgroundTranslating research into practice is an important issue for implementing health interventions effectively for Indigenous communities. He Pikinga Waiora (HPW) is a recent implementation framework that provides a strong foundation for designing and implementing health interventions in Indigenous communities for non-communicable diseases around community engagement, culture-centred approach, systems thinking and integrated knowledge translation. This study addresses the following research question: How are the elements of the HPW Implementation Framework reflected in studies involving the implementation of a non-communicable disease health intervention in an Indigenous community?MethodsA systematic review was conducted using multiple databases. Studies were included if they involved the implementation or evaluation of a health intervention targeting non-communicable diseases for Indigenous communities in Australia, Canada, New Zealand or the United States of America. Published quantitative and qualitative literature from 2008 to 2018 were included. Methodological appraisal of the included articles was completed using the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information. Data on the population, topic, methods, and outcomes were detailed for each individual study. Key data extracted included the HPW elements along with study characteristics, who delivered the intervention and health outcomes. Data analysis involved a qualitative synthesis of findings as guided by a coding scheme of the HPW elements.ResultsTwenty-one studies were included. Health topics included diabetes, nutrition, weight loss, cancer and general health. The key themes were as follows: (a) two thirds of studies demonstrated high levels of community engagement; (b) from the culture-centred approach, two-thirds of studies reflected moderate to high levels of community voice/agency although only a third of the studies included structural changes and researcher reflexivity; (c) about a quarter of studies included multi-level outcomes and activities consistent with systems thinking, 40% had individual-level outcomes with some systems thinking, and 33% included individual-level outcomes and limited systems thinking; and (d) almost 40% of studies included high levels of end user (e.g., policy makers and tribal leaders) engagement reflective of integrated knowledge translation, but nearly half had limited end-user engagement.ConclusionsThe HPW Implementation Framework is a comprehensive model for potentially understanding implementation effectiveness in Indigenous communities. The review suggests that the studies are reflective of high levels of community engagement and culture-centredness. The long-term sustainability and translation of evidence to practice may be inhibited because of lower levels of systems thinking and integrated knowledge translation.RegistrationNot registered.

Project description:BackgroundCompassionate communities are rooted in a health promotion approach to palliative care, aiming to support solidarity among community members at the end of life. Hundreds of compassionate communities have been developed internationally in recent years. However, it remains unknown how their implementation on the ground aligns with core strategies of health promotion. The aim of this review is to describe the practical implementation and evaluation of compassionate communities.MethodsWe undertook a scoping review of the empirical peer-reviewed literature on compassionate communities. Bibliographic searches in five databases were developed with information specialists. We included studies in English describing health promotion activities applied to end-of-life and palliative care. Qualitative analysis used inductive and deductive strategies based on existing frameworks for categorization of health promotion activities, barriers and facilitators for implementation and evaluation measures. A participatory research approach with community partners was used to design the review and interpret its findings.ResultsSixty-three articles were included for analysis. 74.6% were published after 2011. Health services organizations and providers are most often engaged as compassionate community leaders, with community members mainly engaged as target users. Adaptation to local culture and social context is the most frequently reported barrier for implementation, with support and external factors mostly reported as facilitators. Early stages of compassionate community development are rarely reported in the literature (stakeholder mobilization, needs assessment, priority-setting). Health promotion strategies tend to focus on the development of personal skills, mainly through the use of education and awareness programs. Few activities focused on strengthening community action and building healthy public policies. Evaluation was reported in 30% of articles, 88% of evaluation being analyzed at the individual level, as opposed to community processes and outcomes.ConclusionsThe empirical literature on compassionate communities demonstrates a wide variety of health promotion practices. Much international experience has been developed in education and awareness programs on death and dying. Health promotion strategies based on community strengthening and policies need to be consolidated. Future research should pay attention to community-led initiatives and evaluations that may not be currently reported in the peer-review literature.

Project description:BACKGROUND:The goal of Canada's Compassionate Care Benefit (CCB) is to enable family members and other loved ones who are employed to take a temporary secured leave to care for a terminally ill individual at end of life. Successful applicants of the CCB can receive up to 55% of their average insured earnings, up to a maximum of CDN$435 per week, over a six week period to provide care for a gravely ill family member at risk of death within a six month period, as evidenced by a medical certificate. The goal of this study is to evaluate the CCB from the perspective of family caregivers providing care to individuals at end of life. There are three specific research objectives. Meeting these objectives will address our study purpose which is to make policy-relevant recommendations informed by the needs of Canadian family caregivers and input from other key stakeholders who shape program uptake. Being the first study that will capture family caregivers' experiences and perceptions of the CCB and gather contextual data with front-line palliative care practitioners, employers, and human resources personnel, we will be in a unique position to provide policy solutions/recommendations that will address concerns raised by numerous individuals and organizations. METHODS:We will achieve the research goal and objectives through employing utilization-focused evaluation as our methodology, in-depth interviews and focus groups as our techniques of data collection, and constant comparative as our technique of data analysis. Three respondent groups will participate: (1) family caregivers who are providing or who have provided end of life care via phone interview; (2) front-line palliative care practitioners via phone interview; and (3) human resources personnel and employers via focus group. Each of these three groups has a stake in the successful administration of the CCB. A watching brief of policy documents, grey literature, media reports, and other relevant items will also be managed throughout data collection. DISCUSSION:We propose to conduct this study over a three year period beginning in October, 2006 and ending in October, 2009.

Project description:ImportancePolicies and practices that promote advance care planning and advance directive completion implicitly assume that patients' choices for end-of-life (EOL) care are stable over time, even with changes in health status.ObjectiveTo systematically evaluate the evidence on the stability of EOL preferences over time and with changes in health status.Evidence reviewWe searched for longitudinal studies of patients' preferences for EOL care in PubMed, EMBASE, and using citation review. Studies restricted to preferences regarding the place of care at the EOL were excluded.FindingsA total of 296 articles were assessed for eligibility, and 59 met inclusion criteria. Twenty-four articles had sufficient data to extract or calculate the percentage of individuals with stable preferences or the percentage of total preferences that were stable over time. In 17 studies (71%) more than 70% of patients' preferences for EOL care were stable over time. Preference stability was generally greater among inpatients and seriously ill outpatients than among older adults without serious illnesses (P < .002). Patients with higher education and who had engaged in advance care planning had greater preference stability, and preferences to forgo therapies were generally more stable than preferences to receive therapies. Among 9 of the 24 studies (38%) assessing changes in health status, no consistent relationship with preference changes was identified.Conclusions and relevanceConsiderable variability among studies in the methods of preference assessment, the time between assessments, and the definitions of stability preclude meta-analytic estimates of the stability of patients' preferences and the factors influencing these preferences. Although more seriously ill patients and those who engage in advance care planning most commonly have stable preferences for future treatments, further research in real-world settings is needed to confirm the utility of advance care plans for future decision making.

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Implementation Models of Compassionate Communities and Compassionate Cities at the End of Life: A Systematic Review.

Publications

Implementation Models of Compassionate Communities and Compassionate Cities at the End of Life: A Systematic Review.

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