scholarly journals Program Assessment Framework for a Rural Palliative Supportive Service

2013 ◽  
Vol 7 ◽  
pp. PCRT.S11908
Author(s):  
Barbara Pesut ◽  
Brenda Hooper ◽  
Richard Sawatzky ◽  
Carole A. Robinson ◽  
Joan L. Bottorff ◽  
...  
Keyword(s):  
Palliative Care ◽  
Rural Communities ◽  
Grey Literature ◽  
Program Assessment ◽  
Essential Elements ◽  
Assessment Framework ◽  
Community Based ◽  
Community Based Research ◽  
Supportive Service

Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation.

scholarly journals Barriers to Meaningful Involvement in AIDS Service Organizations in Three Canadian Maritime Provinces

2015 ◽  
Vol 2 (2) ◽  
pp. 81
Author(s):  
Steven Michael Ross ◽  
Lynne Duffy ◽  
Leslie Jeffrey ◽  
Donna Bulman ◽  
Marni Amirault
Keyword(s):  
Rural Communities ◽  
Risk Behaviors ◽  
Rural Areas ◽  
Negative Influence ◽  
Small Sample ◽  
Service Organizations ◽  
Maritime Provinces ◽  
Community Based ◽  
Community Based Research ◽  
Meaningful Involvement

<p>A three-year, community-based descriptive study examined how meaningful involvement in AIDS Service Organizations (ASOs) is conceptualized and experienced in three Canadian Maritime provinces that are considered rural areas. This paper focuses on one aspect of the research, namely the barriers to meaningful involvement in ASOs. Thirty-five participants were interviewed who self-identified as current or past clients of an ASO and were living with, or engaging in, at-risk behaviors for HIV/AIDS. Photovoice, a qualitative Community-Based Research (CBR) strategy, was also used with a small sample because marginalized populations that are traditionally difficult to recruit for interviews have embraced this method due to its oral-based and interactive design. The contribution to the field of knowledge about barriers to meaningful involvement is organized around three main themes: (1) stigma, a major negative influence, is particularly powerful due to the nature of social structures in rural communities; (2) readiness for meaningful involvement, where poor health status or the desire to lead a normal life can significantly impact an individual’s involvement, and (3) characteristics of the ASO environment that are critical in determining the degree, if any, of meaningful involvement.<strong></strong></p>

Assessment tools for palliative care.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 66-66
Author(s):  
Sarina Isenberg ◽  
Rebecca Aslakson ◽  
Sydney Morss Dy ◽  
Renee Wilson ◽  
Julie Waldfogel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Practice ◽  
Quality Indicators ◽  
Systematic Reviews ◽  
Grey Literature ◽  
Care Quality ◽  
Assessment Tools ◽  
Patient Reported

66 Background: Recent reviews have not comprehensively addressed palliative care (PC) assessment tools. This project summarizes the extent of evidence about PC assessment tools for patients and families, and how tools have been used for clinical care, quality indicators, and evaluation of interventions. Methods: We searched MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews for systematic reviews of assessment tools for PC, from January 2007 to March 2016. We searched the grey literature for domains without systematic reviews, and for domains with systematic reviews > three years old. Paired investigators independently screened search results and grey literature to determine eligibility, and assessed risk of bias of systematic reviews. The team selected the most recent and highest-quality systematic reviews for each domain. One investigator abstracted information, and a second investigator checked the information. Results: Using the National Consensus Project Palliative Care Guidelines domains, we included nine systematic reviews with 167 tools, and six tools from grey literature. Most tools were in physical, psychological, psychiatric, and social aspects of care, care at the end of life, and tools that cross domains (quality of life and caregiver-reported experience). Only two tools directly addressed spiritual aspects and none addressed cultural or patient-reported experience. Internal consistency reliability was evaluated for almost all tools; most reported construct validity; and few reported responsiveness (sensitivity to change). Few studies evaluated the use of assessment tools in quality indicators or clinical practice. A systematic review of 38 PC interventions and the assessment tools used found that at least 25 interventions included physical, psychosocial and psychiatric, and quality of life tools, but the tools varied extensively, and only nine included patient experience tools. Conclusions: Although assessment tools exist in many PC domains, tools are needed to assess spiritual and cultural aspects of care, and patient-reported experience. Research is needed concerning: tools in clinical practice and quality of care; comparison of existing tools; and evaluation and dissemination tools with evidence of responsiveness.

Visualizing community pride: engaging community through photo- and video-voice methods

2019 ◽  
Vol 14 (4) ◽  
pp. 377-392
Author(s):  
Eric Ping Hung Li ◽  
Ajnesh Prasad ◽  
Cristalle Smith ◽  
Ana Gutierrez ◽  
Emily Lewis ◽  
...  
Keyword(s):  
Rural Communities ◽  
Research Methods ◽  
Empirical Studies ◽  
Community Based Participatory Research ◽  
Community Based ◽  
Content Type ◽  
Community Based Research ◽  
Active Involvement ◽  
Visual Research Methods ◽  
Emic Perspective

Purpose The purpose of this paper is to consider the potential of visual (i.e. non-textual) research methods in community-based participatory research. Design/methodology/approach The authors draw on a case illustration of a photo- and video-voice campaign involving rural communities in British Columbia, Canada. Findings The authors find that visual research methods, in the form of photo- and video-voice campaigns, allow participants to form ties between their community and the broader sociocultural, natural and political milieu in which their community is located. The authors highlight the benefits of using such methodological approaches to capture an emic perspective of community building. Originality/value The contribution of this study is twofold. First, this study uses a photo- and video-voice campaign to showcase the role of visuals in articulating community pride – that is, how locals construct identity – and a sense of belongingness. Second, by focusing its analytical gaze on the idea of “community,” this paper revisits the importance of active involvement of research participants in the execution of empirical studies. Ultimately, the authors urge organization and management studies scholars, as well as those working in the social sciences more broadly, to further explore the value of innovative community-based research approaches in future work.

scholarly journals Interventions to Reduce Stigma of Dementia: First Insights From a Rural Community-Based Participatory Study

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 879-879
Author(s):  
Juanita Bacsu ◽  
Shanthi Johnson ◽  
Megan O’Connell ◽  
Marc Viger
Keyword(s):  
Older Adults ◽  
Rural Communities ◽  
Support Groups ◽  
Structured Interviews ◽  
Contributing Factors ◽  
Community Based ◽  
People With Dementia ◽  
Related Stigma ◽  
Asking Questions

Abstract Age is the greatest risk factor for dementia, and the number of rural older adults is rising. Although dementia-related stigma is widely documented, few studies focus on ways to reduce stigma, especially within rural communities. This late breaker presentation aims to: 1) explore the contributing factors of dementia-related stigma in rural communities; and 2) identify interventions to reduce stigma of dementia in rural communities. Drawing on a community-based participatory approach, data were collected through semi-structured interviews with 18 older adults, and a focus group with 7 community leaders in rural Saskatchewan, Canada. Thematic analysis was used to identify key themes and patterns within the data. Contributing factors of dementia-related stigma ranged from fear to lack of dementia knowledge. Several anti-stigma interventions were identified including: forming support groups; hosting educational workshops; inviting guest speakers with dementia; talking openly about dementia; learning more about dementia; asking questions; sharing your lived-experiences; being inclusive; developing inter-generational programs; and avoiding assumptions and hurtful jokes. As the rural population ages, there is a growing need for interventions, programs, and policies to address stigma of dementia. Engaging in rural partnerships and collaborative research is essential to developing community-informed strategies to reduce dementia-related stigma and improve the quality of life for people with dementia.

scholarly journals A quality assessment framework for natural hazard event documentations: application to trans-basin flood reports in Germany

2013 ◽  
Vol 1 (1) ◽  
pp. 143-192 ◽  
Author(s):  
S. Uhlemann ◽  
A. H. Thieken ◽  
B. Merz
Keyword(s):  
Quality Assessment ◽  
Natural Hazard ◽  
Grey Literature ◽  
Flood Event ◽  
Assessment Framework ◽  
Quality Dimensions ◽  
Research Questions ◽  
First Time ◽  
Written Sources

Abstract. Written sources that aim at documenting and analysing a particular natural hazard event in the recent past are published at vast majority as grey literature (e.g. as technical reports) and therefore outside of the scholarly publication routes. In consequence, the application of event specific documentations in natural hazard research has been constrained by barriers in accessibility and concerns of credibility towards these sources and by limited awareness of their content and its usefulness for research questions. In this study we address the concerns of credibility for the first time and present a quality assessment framework for written sources from a user's perspective, i.e. we assess the documents' fitness for use to enhance the understanding of trans-basin floods in Germany in the period 1952–2002. The framework is designed to be generally applicable for any natural hazard event documentation and assesses the quality of a document addressing accessibility as well as representational, contextual, and intrinsic dimensions of quality. We introduce an ordinal scaling scheme to grade the quality in the single quality dimensions and the Pedigree score which serves as a measure for the overall document quality. We present results of an application of the framework to a set of 133 event specific documentations relevant for understanding trans-basin floods in Germany. Our results show that the majority of flood event specific reports are of a good quality, i.e. they are well enough drafted, largely accurate and objective, and contain a substantial amount of information on the sources, pathways and receptors/consequences of the floods. The validation of our results against assessments of two independent peers confirms the objectivity and transparency of the quality assessment framework. Using an example flood event that occurred in October/November 1998 we demonstrate how the information from multiple reports can be synthesised under consideration of their quality.

scholarly journals Process of Developing Palliative Care Curriculum for Training Medical Interns in a Tertiary Care Teaching Hospital in Puducherry, India

2021 ◽  
Vol 27 ◽  
pp. 269-274
Author(s):  
Suguna Elayaperumal ◽  
Vinayagamoorthy Venugopal ◽  
Amol R. Dongre ◽  
Suresh Kumar
Keyword(s):  
Palliative Care ◽  
Tertiary Care ◽  
Community Setting ◽  
Management Communication ◽  
Community Based ◽  
Medical College ◽  
Hands On ◽  
Course Material ◽  
Medical Interns

Objectives: The department of community medicine (DCM) has been training medical interns for palliative care in the hospital and community setting. There was no specific curriculum or course material available for training them. This study aims to develop, implement and evaluate the palliative care curriculum for training medical interns. Materials and Methods: The present program development and evaluation of palliative care curriculum was done in the DCM, Sri Manakula Vinayagar Medical College and Hospital, Puducherry, India. We followed the Kern’s six steps for curriculum development. It was done during July 2016 and May 2017. We framed expected outcomes from literature review and interviews with experts. The curriculum was delivered through small group sessions followed by hands-on exposure to hospital- and community-based palliative care programs guided by a workbook. Medical interns were given feedback on their field assignments on history taking, followed by reflection using structured template incorporated in the workbook. The reaction to the curriculum was collected from various stakeholders. Results: Medical interns found the curriculum useful for them to acquire basic skills of pain management, communication skills and teamwork. Patients and family felt satisfied with the quality of care provided. Conclusion: The new palliative care curriculum was well received by all the stakeholders involved. This can be adopted in similar context for training medical interns in palliative care.

A nurse practitioner-led community palliative care service in Australia

2019 ◽  
Vol 25 (5) ◽  
pp. 245-253 ◽  
Author(s):  
Julie Edwards ◽  
Dawn Hooper ◽  
Gillian Rothwell ◽  
Kerrie Kneen ◽  
John Watson ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Nurse Practitioner ◽  
End Of Life Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Community Setting ◽  
Essential Elements ◽  
Life Care ◽  
Community Based

Background: Patients want community-based palliative care, but there was no continuity of care for patients at the Sydney Adventist Hospital to receive palliative and end-of-life care within a community setting. A nurse practitioner (NP)-led community palliative care service was developed. Aims: To present the background, design, function, and essential elements of the Sydney Adventist Hospital Community Palliative Care Service (SanCPCS). Methods: Semi-structured and cyclical discussions with key informants alongside internal document reviews. Findings: This is the first description of an NP-led community palliative care service model. The NP role ensured specialist training and extended clinical practice within the community setting. The SanCPCS delivers accessible, continuous, community-based palliative care throughout the patient's palliative and end-of-life journey. Conclusion: NP-led models for palliative and end-of-life care in the outpatient or community setting are a logical direction to meet patient need.

What should be measured to assess the quality of community-based palliative care? Results from a collaborative expert workshop

2021 ◽  
pp. 1-7
Author(s):  
Nicole Williams ◽  
Nicole Boumans ◽  
Nicole Luymes ◽  
Nancy E. White ◽  
Manon Lemonde ◽  
...  
Keyword(s):  
Palliative Care ◽  
Health Care Professionals ◽  
Population Aging ◽  
Well Being ◽  
Substantial Contribution ◽  
Special Importance ◽  
Community Based ◽  
Expert Opinions ◽  
The Individual

Abstract Objectives The need for palliative care (PC) will continue to increase in Canada with population aging. Many older adults prefer to “age in place” and receive care in their own homes. Currently, there is a lack of standardized quality indicators (QIs) for PC delivered in the community in Canada. Methods A one-day workshop collected expert opinions on what should be measured to capture quality PC. Three brainstorming sessions were focused on addressing the following questions: (1) what is important to measure to support quality PC, regardless of setting? (2) Of the identified measures, are any of special importance to care provided in the home? (3) What are the challenges, barriers, and opportunities for creating these measures? The National Consensus Project (NCP) for Quality Palliative Care framework was used as a guide to group together important comments into key themes. Results The experts identified four themes that are important for measuring quality, regardless of care setting, including access to care in the community by a multidisciplinary team, care for the individual with PC needs, support for the informal caregiver (e.g., family, friends), and symptom management for individuals with PC needs. Two additional themes were of special importance to measuring quality PC in the home, including spiritual care for individuals with PC needs and home as the preferred place of death. The challenges, barriers, and potential opportunities to these quality issues were also discussed. Significance of results PC experts, through this collaborative process, made a substantial contribution to the creation of a standardized set of QIs for community-based PC. Having a standardized set of QIs will enable health care professionals and decision makers to target areas for improvement, implement interventions to improve the quality of care, and ultimately, optimize the health and well-being of individuals with a serious illness.

scholarly journals Funding and Ethics in Métis Community Based Research

2012 ◽  
Vol 5 (1) ◽  
pp. 54-66 ◽  
Author(s):  
Mike Evans ◽  
Chris Anderson ◽  
Devin Dietrich ◽  
Carrie Bourassa ◽  
Tricia Logan ◽  
...  
Keyword(s):  
Rural Communities ◽  
Policy Statement ◽  
Ethical Guidelines ◽  
Community Based ◽  
Aboriginal Community ◽  
Community Based Research ◽  
Geographically Dispersed ◽  
Research Relationships ◽  
New Guidelines ◽  
Aboriginal Person

Recent ethical guidelines developed by the Canadian Institutes of Health Research along with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans stress the importance of Aboriginal community engagement in research. Although these are positive changes meant to ensure respectful and responsive research relationships between communities and researchers, the understanding of 'community' employed by the new guidelines is problematic. In this sense, the guidelines rely on hegemonic understandings of what it is to be an Aboriginal person in Canada, as well as white spatial imaginaries of Aboriginal geographies. In this way, the guidelines codify Aboriginality and its spatiality as that of well-structured, landed, bounded and distinct rural communities. However, the contemporary Métis communities with whom the authors have worked rarely fit into hegemonic imaginaries of Aboriginality and its geographies in Canada. Rather, Métis communities are often institutionally weak, geographically dispersed and sociologically complex. Thus, we argue that the guidelines instantiate a territorialisation of society and space that risks re-marginalising Métis communities.

scholarly journals Building Community-Based Awareness and Navigating Breast Cancer and Palliative Care Programme in Kumasi, Ghana

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 151s-151s
Author(s):  
C. Asoogo ◽  
F. Aitpilla ◽  
F.M. Hoyte-Williams ◽  
F. Awittor ◽  
B. Awuah ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Social Media ◽  
Palliative Care ◽  
Metastatic Breast Cancer ◽  
Patient Navigation ◽  
Metastatic Breast ◽  
Community Based ◽  
Structured Program

Introduction: Breast cancer is the leading cancer in Ghana and most patients report with advanced disease. Patients face many challenges in trying to access health care and support; these are particularly relevant in the case of metastatic diseases. A structured program would provide a means of rapid referral for definitive diagnosis, treatment and palliative care, where necessary. Aim: To establish community-based structured patient network, navigation and breast health awareness programs that will reduce delays in accessing care, improve the quality of end-of-life care among patients with metastatic breast cancer. Strategy: We established a community-based patient network program comprising 15 community-based patient navigators in the Kumasi metropolis and a social media networking and navigation platform made up of a team of experts and community navigators, breast cancer survivors and patients with advanced breast cancer to share experiences and express/address concerns. We assessed the breast cancer database of Komfo Anokye Teaching Hospital to establish the number, location and density of patients. Community navigator's established direct in-person contacts with the patients to offer support explain and enroll them into the social media network and navigation platform. The project team carried out various awareness campaigns including talks to organized groups, house-to-house and media campaigns. Program/Policy process: We engaged with the Ghana Health Service, local government authorities as well as traditional and community leadership in the design and implementation of the program, to encourage community ownership from the onset. These key stakeholders were also pivotal in organizing durbars, talks to organized groups and community meetings to reach out to the people. Recruitment of volunteers within the communities will ensure that patient navigation has the best chance to continue within these communities beyond the grant period. The project coordinator and her team were available for consultation and also paid periodic visits to the communities. Outcomes: A structured program to enhance referral and access to care; a community-based patient navigation system to recruit and provide support to patients with advanced breast cancer; a social media platform to provide guide and immediate support to patients with metastatic breast cancer; and improved awareness of breast cancer and its prevention in the communities. Conclusions: The program improved the health care system in the communities and also expands outreach to persons living with metastatic breast cancer to provide support and improve treatment outcomes and quality of life. It also encourages patients to visit hospitals for treatment through ease of access to medical care and informed treatment choices and palliative care.

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