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1.
Aust Occup Ther J ; 2024 Mar 25.
Article in English | MEDLINE | ID: mdl-38527907

ABSTRACT

INTRODUCTION: The compassionate communities' movement is a public health approach to end-of-life care that emphasises the integral role of communities in supporting and caring for dying persons and their informal carers. Although occupational therapists have well-established roles in palliative care teams, little is known about their potential in assisting in the formation and maintenance of compassionate communities. METHOD: Data were gathered via semi-structured interviews with nine Australian occupational therapists with experience in specialist palliative care. Interview questions were based around the British Columbia Compassionate Community Ideal framework. Key themes were derived through qualitative descriptive analysis, blending deductive, and inductive reasoning. FINDINGS: Interviewees indicated that occupational therapists have a role in supporting compassionate communities that centres on the facilitation of networks and connections between palliative care professionals and in the promotion of informal care networks. The importance of education and awareness raising were also discussed as valuable to the development of community capacity. It was also suggested that occupational therapists have important skills to support dying persons and their caregivers to remain engaged and safe in their homes and communities, in a meaningful and sustainable way. However, many interviewees maintained a profession-centric view on control within compassionate communities, as opposed to approaches that are community led. CONCLUSION: Findings offer early insights into the promise and potential of occupational therapists in supporting the compassionate communities' movement. However, education regarding the ethos of the compassionate communities' movement so as to facilitate a shift away from professionally oriented modes of practice may be needed to maximise success.

2.
Palliat Med ; 37(2): 291-301, 2023 02.
Article in English | MEDLINE | ID: mdl-36576313

ABSTRACT

BACKGROUND: Compassionate Communities have been put forward as a new model for community-based palliative care to positively impact the health and wellbeing of those experiencing challenges of serious illness, death, dying, and loss. Despite the growing international movement to develop these public health initiatives to end-of-life care, only a handful of initiatives have undergone some form of evaluation. AIM: To provide guidance on designing evaluation research by identifying theoretical frameworks to understand the development, implementation, and underlying mechanisms of Compassionate Communities. METHODS: To identify suitable theoretical frameworks for the study of Compassionate Communities, we applied two steps. The first step examined the characteristics of Compassionate Communities and translated them into assessment criteria for the selection of theoretical frameworks. The second step consisted of applying the identified assessment criteria to a list of widely used and highly cited theoretical frameworks. RESULTS: Three well-established theoretical frameworks were identified as being most suitable to study the development, implementation, and underlying mechanisms of Compassionate Communities: The Consolidated Framework for Implementation Research (CFIR), the integrated-Promoting Action on Research Implementation in Health Services framework (i-PARIHS), and the Extended Normalization Process Theory (ENPT). CONCLUSIONS: The article supports and encourages the use of theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. The complementary use of two determinant frameworks and an implementation theory provides theoretical grounding to gain rich insights into the emergent and shifting interplays between agency, social processes, and contextual factors that shape the development and implementation of Compassionate Communities.


Subject(s)
Hospice and Palliative Care Nursing , Terminal Care , Humans , Palliative Care , Public Health , Empathy
3.
Death Stud ; : 1-10, 2023 Nov 25.
Article in English | MEDLINE | ID: mdl-38006257

ABSTRACT

We conducted a cross-sectional survey measuring the extent and nature of neighborhood participation regarding serious illness, death and loss and the factors that are associated with it. We distributed the survey to 2324 adult citizens in two neighborhoods in Flanders, Belgium, to which 714 citizens responded (response rate 30.7%). Of the respondents, 42.4% participated in at least one action in their neighborhood around serious illness, death, or loss, for 30.8% of them this participation was sporadic. Most of the respondents participated by helping neighbors (32.4%) or by volunteering (10.3%). We found a positive association between perceived neighborhood social cohesion (ß = 0.100; CI = 0.003-0.040), previous experiences with serious illness, death, and loss (ß = 0.158; CI = 0.204-0.586) and neighborhood participation around serious illness, death and loss. Future research should investigate strategies on how to move from death literacy developed through illness, caregiving and bereavement experiences to neighborhood participation around these topics.

4.
Illn Crises Loss ; 31(1): 151-167, 2023 Jan.
Article in English | MEDLINE | ID: mdl-36605777

ABSTRACT

COVID-19 lockdown and social distancing measures have restricted funerals and memorial events and have limited the face-to-face social networks that grieving people might normally be able to draw upon for emotional support. However, while there is considerable expert informed speculation about the impacts of grief and "COVID bereavement", detailed accounts of experiences of bereavement and bereavement support during the pandemic have the potential to enrich and provide nuance and subtlety to the evidence base. This paper draws on diary accounts of bereavement support volunteers in the UK, who have been providing support for the bereaved through these challenging times. These reveal layers of complexity to the experiences of loss, grief and bereavement during these extraordinary times. However, they also point to a number of additional themes that lend a more positive valence to the suspension of normal social expectations and memorial practices associated with the pandemic, which, we argue should be reflected upon for their potential to address the discontents of contemporary governance of end of life and bereavement.

5.
Palliat Med ; 36(4): 625-651, 2022 04.
Article in English | MEDLINE | ID: mdl-35287517

ABSTRACT

BACKGROUND: New public health approaches to palliative care such as compassionate communities aim to increase capacity in serious illness, death, and loss by involving civic society. Civic engagement has been described in many domains of health; a description of the characteristics, processes, and impact of the initiatives in palliative care is lacking. AIM: To systematically describe and compare civic engagement initiatives in palliative care in terms of context, development, impact, and evaluation methods. DESIGN: Systematic, mixed-methods review using a convergent integrated synthesis approach. Registered in Prospero: CRD42020180688. DATA SOURCES: Six databases (PubMed, Scopus, Sociological Abstracts, WOS, Embase, PsycINFO) were searched up to November 2021 for publications in English describing civic engagement in serious illness, death, and loss. Additional grey literature was obtained by contacting the first authors. We performed a quality appraisal of the included studies. RESULTS: We included 23 peer-reviewed and 11 grey literature publications, reporting on nineteen unique civic engagement initiatives, mostly in countries with English as one of the official languages. Initiatives involved the community in their development, often through a community-academic partnership. Activities aimed to connect people with palliative care needs to individuals or resources in the community. There was a variety of evaluation aims, methods, outcomes, and strength of evidence. Information on whether or how to sustain the initiatives was generally lacking. CONCLUSIONS: This is the first review to systematically describe and compare reported civic engagement initiatives in the domain of palliative care. Future studies would benefit from improved evaluation of impact and sustainability.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Humans
6.
BMC Palliat Care ; 21(1): 131, 2022 Jul 20.
Article in English | MEDLINE | ID: mdl-35854292

ABSTRACT

BACKGROUND: Compassionate 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. METHODS: We 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. RESULTS: Sixty-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. CONCLUSIONS: The 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.


Subject(s)
Health Promotion , Palliative Care , Humans , Peer Group
7.
Am J Community Psychol ; 69(3-4): 369-379, 2022 06.
Article in English | MEDLINE | ID: mdl-34935144

ABSTRACT

Despite public health measures and collective efforts, millions of individuals have unfortunately died from COVID-19 complications worldwide, leaving several million family members at risk of developing bereavement complications. In the Canadian province of Quebec, where substantial deaths were associated with COVID-19, we established an online support community for bereaved caregivers who lost a loved one during the pandemic. We explain how we created a community that recognized pandemic grief and advocated for its wider acknowledgment. We discuss "compassionate communities," the theoretical underpinning of our initiative, as a means to foster solidarity, normalize finitude, create and maintain a safe social space through group sharing, and challenging capitalist principles. We then describe the eight areas of activities inspired by the Charter of Pallium Canada: education and training, hospices and nursing homes, media and social media, commemoration, celebrations, artistic practices and storytelling, marginalized populations, and review and evaluate. We propose that online communities constitute a powerful space for community members to gather and advocate for greater awareness of the inequities found in end-of-life care and bereavement services, to denounce abusive situations experienced by many individuals who died from COVID-19 complications, and to fight against the lack of recognition experienced by numerous caregivers.


Subject(s)
Bereavement , COVID-19 , COVID-19/epidemiology , Canada , Family , Grief , Humans , Pandemics
8.
BMC Public Health ; 21(1): 2253, 2021 12 11.
Article in English | MEDLINE | ID: mdl-34895200

ABSTRACT

BACKGROUND: Vulnerable persons are individuals whose life situations create or exacerbate vulnerabilities, such as low income, housing insecurity and social isolation. Vulnerable people often receive a patchwork of health and social care services that does not appropriately address their needs. The cost of health and social care services escalate when these individuals live without appropriate supports. Compassionate Communities apply a population health theory of practice wherein citizens are mobilized along with health and social care supports to holistically address the needs of persons experiencing vulnerabilities. AIM: The purpose of this study was to evaluate the implementation of a compassionate community intervention for vulnerable persons in Windsor Ontario, Canada. METHODS: This applied qualitative study was informed by the Consolidated Framework for Implementation Research. We collected and analyzed focus group and interview data from 16 program stakeholders: eight program clients, three program coordinators, two case managers from the regional health authority, one administrator from a partnering community program, and two nursing student volunteers in March through June 2018. An iterative analytic process was applied to understand what aspects of the program work where and why. RESULTS: The findings suggest that the program acts as a safety net that supports people who are falling through the cracks of the formal care system. The 'little things' often had the biggest impact on client well-being and care delivery. The big and little things were achieved through three key processes: taking time, advocating for services and resources, and empowering clients to set personal health goals and make authentic community connections. CONCLUSION: Compassionate Communities can address the holistic, personalized, and client-centred needs of people experiencing homelessness and/or low income and social isolation. Volunteers are often untapped health and social care capital that can be mobilized to promote the health of vulnerable persons. Student volunteers may benefit from experiencing and responding to the needs of a community's most vulnerable members.


Subject(s)
Ill-Housed Persons , Humans , Ontario , Qualitative Research , Social Support , Social Work
9.
Article in English | MEDLINE | ID: mdl-33722177

ABSTRACT

Grief and bereavement support is a fundamental component of palliative care, yet there is a gap in practice as not all palliative care services offer it. The compassionate communities (CC) approach aims to build community capacity to address grief as grief support is considered everyone's responsibility. This study describes the characteristics, development, growth and attendees of a grief support program that uses a CC approach to bridge the gap of grief support in palliative care.


Subject(s)
Bereavement , Terminal Care , Empathy , Grief , Humans , Palliative Care , Patient Comfort
10.
Public Health ; 194: 167-169, 2021 May.
Article in English | MEDLINE | ID: mdl-33945930

ABSTRACT

OBJECTIVES: To consider death doulas in relation to compassionate communities, role delineation and regulation, and end-of-life care delivery. STUDY DESIGN: A narrative describing the emerging role of death doula in the increasingly complex end-of-life space. METHODS: A discussion of death doula in end-of-life care. RESULTS: Compassionate communities calls for the mobilisation of informal care around the dying and their families. Formal health services as well, including palliative care, are already providing care as are death doulas. The death doula role is not yet fully articulated and has layers of complexity associated with a lack of formalised training and no registration. CONCLUSIONS: There is much to consider in the informal caregiving space at the end of life. Conversations are required for coherent, coordinated care delivery in what has become a complex arena. There are those who are in paid positions, volunteers, those who are negotiating fees, as well as role overlap and role blurring.


Subject(s)
Doulas , Empathy , Professional Role , Residence Characteristics/statistics & numerical data , Terminal Care/organization & administration , Humans
11.
BMC Palliat Care ; 19(1): 97, 2020 Jul 06.
Article in English | MEDLINE | ID: mdl-32631288

ABSTRACT

BACKGROUND: General Practitioners (GPs) face challenges when providing palliative care, including an ageing, multimorbid population, and falling GP numbers. A 'public health palliative care' approach, defined as "working with communities to improve people's experience of death, dying and bereavement", is gaining momentum. 'Compassionate communities' is one example, with a focus on linking professional health carers with supportive community networks. Primary care is central to the approach, which has been incorporated into United Kingdom GP palliative care guidance. No research to date, however, has investigated GP perspectives of these approaches. Our aim, therefore, was to explore GP perceptions of a public health approach to palliative care, and compassionate communities. METHODS: GPs working in the United Kingdom were recruited through university teaching and research networks using snowball sampling. Purposive sampling ensured wide representation of gender, level of experience and practice populations. Semi-structured, digitally audio-recorded interviews were conducted with nine GPs. Interviews were transcribed verbatim, and thematic analysis was undertaken, informed by a qualitative descriptive methodology. Interviews continued until data saturation was reached. RESULTS: Most participants were unfamiliar with the term 'compassionate communities', but recognised examples within their practice. Three major themes with seven subthemes were identified: 1) Perceived potential of compassionate communities, including: 'maximising use of existing community services'; 'influencing health outside of healthcare'; and 'combatting taboo', 2) Perceived challenges of compassionate communities, including: 'patient safety'; 'limited capacity of the community'; 'limited capacity of general practice', and 'applicability of public health to palliative care', and 3) The role of the GP in compassionate communities. CONCLUSIONS: GPs recognised the importance of the wider community in caring for palliative care patients, however most were unfamiliar with the compassionate community approach. Participants held differing views regarding the application of the model, and the position of general practice within this. Further research into the approach's practical implementation, and exploring the views of other key stakeholders, would help establish the feasibility of compassionate communities in practice, and guide its future application.


Subject(s)
Empathy , General Practitioners/psychology , Perception , Humans , Public Health/methods , Qualitative Research , United Kingdom
12.
Health Promot Int ; 35(1): 160-170, 2020 Feb 01.
Article in English | MEDLINE | ID: mdl-30690474

ABSTRACT

Designing and implementing population-based systems of care that address the social determinants of health, take action on multiple levels, and are guided by evidence-based principles is a pressing priority, and an international challenge. Aging persons are a priority demographic whose health needs span physical, psychosocial and existential care domains, increase in the last year of life, are often poorly coordinated and therefore remain unmet. Compassionate communities (CCs) are an example of a public health approach that fully addresses the holistic healthcare needs of those who are aging and nearing end of life. The sharing of resources, tools, and innovations among implementers of CCs is occurring globally. Although this can increase impact, it also generates complexity that can complicate robust evaluation. When initiating population health level projects, it is important to clearly define and organize concepts and processes that are proposed to influence the health outcomes. The Health Impact Change Model (HICM) was developed to unpack the complexities associated with the implementation and evaluation of a Canadian CC intervention. The HICM offers utility for citizens, leaders and decision-makers who are engaged in the implementation of population health level strategies or other social approaches to care, such as compassionate cities and age or dementia-friendly communities. The HICM's concepts can be adapted to address a community's healthcare context, needs, and goals for change. We share examples of how the model's major concepts have been applied in the development, evaluation and spread of a complex CC approach.


Subject(s)
Aging , Community Health Services/organization & administration , Palliative Care/organization & administration , Public Health , Aged , Canada , Holistic Health , Humans , Palliative Care/methods , Terminal Care/organization & administration
13.
Br J Community Nurs ; 24(12): 580-584, 2019 Dec 02.
Article in English | MEDLINE | ID: mdl-31800310

ABSTRACT

In recent years, tackling loneliness has become the focus of increased scholarly debate, social intervention and the development of international policy. One response to the 'epidemic of loneliness' has been the development of the compassionate communities model. The diversity of compassionate communities approaches has led to scholars such as Allan Kellehear (2005; 2017) to highlight a lack of a cohesive underpinning theory to support and drive policy development. In this paper, we propose the use of 'collective memory' as a novel approach to linking loneliness, memory and identity in a way that draws out conceptual links between the role compassionate communities play in tackling social isolation and loneliness. We suggest that the service-led approach that seeks to identify and transpose strategies from one community to another is ineffective; instead, we emphasise the need to develop bespoke community-centred models that can be used by community nurses.


Subject(s)
Community Health Services/organization & administration , Empathy , Loneliness/psychology , Organizational Objectives , Social Isolation/psychology , Social Support , Stress, Psychological/therapy , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , United Kingdom
14.
BMC Palliat Care ; 17(1): 89, 2018 Jun 29.
Article in English | MEDLINE | ID: mdl-29958534

ABSTRACT

BACKGROUND: Education sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose of this study was therefore to (i) implement an education program about palliative care among teenagers and (ii) to investigate the impact of the program on the participants. METHODS: An action-research study was conducted at a local community parish in Portugal in November 2015. An education programme was purposively built about palliative care, using active educational strategies adapted for teenagers. Quantitative and qualitative techniques and instruments were used for data collection: questionnaire; reflective diaries; interviews and written testimony. The program had three stages: preparation; intervention; and evaluation. Qualitative data were analysed using thematic content analysis; quantitative data were analysed descriptively. RESULTS: 69 people (47 teenagers) participated in the education program. Findings show that the education program contributed to creating awareness about palliative care. Both the teenagers and other participants assessed the education program positively. At the end of the program, teenagers had a constructive message about palliative care. CONCLUSIONS: The education-intervention contributed to create awareness about palliative care among the participant teenagers, who ended the program with a positive message about palliative care. Based on our findings, the following policy implications can be drawn: (1) Further research is needed to evaluate the effect of education programs about palliative care among younger age groups (teenagers and children), particularly in relation to the changing of attitudes toward palliative care. (2) Education about palliative care should be promoted to local communities, involving all age groups, to foster involvement, participation and empowerment. (3) Compassionate communities should be promoted to enhance the health and wellbeing of all citizens at the end of their life.


Subject(s)
Health Promotion/methods , Palliative Care/methods , Public Health/methods , Adolescent , Adolescent Behavior/psychology , Community Participation/methods , Developing Countries , Female , Health Promotion/standards , Health Services Research , Humans , Male , Portugal , Public Health/education , Qualitative Research , Surveys and Questionnaires
15.
Palliat Care Soc Pract ; 18: 26323524241246533, 2024.
Article in English | MEDLINE | ID: mdl-38682084

ABSTRACT

Background: In recent years, there has been a rise in international (care) movements that prioritise community-centred initiatives such as age-friendly communities, compassionate communities or integrated community care. Although these movements have different focal points, they share common features: seeking to address systemic failures in (care) services, value the participation of end-users, focus on unmet (care) needs, through a local, neighbourhood-oriented approach. In the Flemish and Brussels regions notably the concept of Caring Neighbourhoods is experiencing rapid growth. Objectives: The objective of the present study is to examine the development and implementation of 35 Caring Neighbourhood initiatives in Flanders and Brussels (Belgium) to explore the added value of such projects, as well as the crucial elements for creating Caring Neighbourhoods. Design: Thirty-five caring neighbourhood projects were examined by means of five focus group interviews with project coordinators (n = 34) and five focus group interviews with neighbourhood residents (n = 27), using participant-generated photo elicitation. Methods: The focus group sessions were recorded, transcribed and data were labelled using an inductive analytical framework, following the steps of reflexive thematic analysis. Results: The analysis of the 35 Caring Neighbourhoods showed that fostering connections was key in building Caring Neighbourhoods: connections among residents, connections between residents and care and support services and among care services themselves. The three primary ways to connect people were through activities, places and people. Also, the role of the Caring Neighbourhood coordinator is highlighted as key, which should focus on weaving existing resources, facilitating and coaching instead of organising. Altogether, the projects brought meaning and value to participants' lives, enhancing overall life satisfaction and well-being, with an emphasis on physical and psychosocial care and support. Conclusion: Through critically reflecting on our results and other research, we call on researchers to pay increased attention in research on community-centred care initiatives to death, dying and grief, equity and social justice and the need for both warm and cold solidarity.

16.
Ann Palliat Med ; 2024 Jul 08.
Article in English | MEDLINE | ID: mdl-38988080

ABSTRACT

BACKGROUND: Compassionate communities aim to empower people to deal with death, dying, and bereavement. They also intend to facilitate access to care and support at the end of life. However, there is a need for systematic knowledge on how to achieve the desired outcomes for citizens and for insights regarding the development, implementation, and evaluation. The aim of this study was to assess the views of members of a German Compassionate City, the "Caring Community Cologne" (CCC), and to report on its practical implementation. METHODS: The CCC consists of a citywide Round Table, a Steering Group, a Coordination Office and four Working Groups in areas where activities are already in place. We conducted two qualitative focus groups with nine members of three Working Groups. The transcripts were analysed with qualitative content analysis, using MAXQDA version 2022, and results were transferred into the logic model "Throughput Model". RESULTS: At the time of evaluation, participants felt that the structures of the CCC were adequate, but criticised the cooperation and transparency between them. A key aspect of this was the requirement for a coordinating body. They stressed the support of federal institutions as a key factor, while at the same time describing insufficient citizen involvement. The transfer of the results into the Throughput Model highlighted four areas that the CCC should address: (I) neighbourhood networks need to be established to strengthen civic support; (II) people need to be made aware of the issues by making them accessible in their everyday lives; (III) the many existing support initiatives need to be better linked and made more accessible; (IV) adequate healthcare service structures have to be guaranteed. CONCLUSIONS: The top-down approach described, supported by the city's engagement and involving existing initiatives can facilitate the development of a bottom-up civic engagement model in a large city. However, active citizen involvement appeared to be a challenge. The Throughput Model was a suitable basis for mapping work processes and developing evaluation plans.

17.
Palliat Care Soc Pract ; 18: 26323524241228306, 2024.
Article in English | MEDLINE | ID: mdl-38347888

ABSTRACT

Background: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of this pilot study was to assess the feasibility and relevance of the Carers' Alert Thermometer (CAT) in home-based care, from the perspective of MND family caregivers. The tool provides a formal structure to facilitate discussions with caregivers to enable needs to be addressed. Methods: This mixed-method study was conducted in Western Australia (2020-2021). Forty-one caregivers and five MND Advisors participated in trialling the CAT intervention which consisted of two encounters with Advisors (6-8 weeks apart) to identify and address support needs through action plans. Caregivers' feedback was obtained via telephone interviews and a thematic analysis was undertaken. Results: Thirty caregivers completed two CAT assessments. Caregivers identified support priorities of managing their feelings and worries, providing emotional or spiritual care, information about the person's condition and how their care needs might change. Seventeen caregivers were interviewed and found that this assessment process adequately addressed their needs and it should be continued, it brought the focus onto them to clarify problems and work through solutions. The improvements that were suggested by them, including better information/education in palliative care, led to the development of an online support/information toolkit, which served to empower caregivers and staff by accessing relevant information and resources. Conclusions: The CAT demonstrated utility for triaging caregivers most in need of additional support and those whom signposting to additional information and self-directed access to support was most appropriate. For any tool to become an integrated part of care, service provider support is key for implementation, allowing for the time resource required and an appropriate education and support structure. MND Associations have an important role in building stronger partnerships with supportive community networks, through compassionate communities models of care, to address the identified needs of MND families in a more sustainable and wholistic manner. Needs assessment is a means towards building this capacity between formal and informal networks.

19.
Palliat Care Soc Pract ; 17: 26323524231170885, 2023.
Article in English | MEDLINE | ID: mdl-37187530

ABSTRACT

Background: 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. Objectives: To identify a set of core outcomes or benefits that should be measured to assess the impact of the CCs. Design: Multiple-methods study involving three communities, each in a different country (Argentina, Colombia, and Switzerland). Methods and analysis: 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. Ethics: 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. Discussion: We expect that this project will help bridge the gap in knowledge regarding the measurable impact of the CCs and enhance more CC development.

20.
Ann Palliat Med ; 12(5): 936-951, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37475658

ABSTRACT

BACKGROUND: The compassionate communities (CC) movement is an emergent health promotion approach to palliative care that views illness, dying, death, and loss as universal experiences, and challenges the notion that disease precludes one from health care attention and interest. It seeks to normalise these phenomena and reorientate care to communities by activating naturally occurring networks and mobilising community resources. A surge of interventions aligned with the ethos of CC has been observed over the last decade. This scoping review seeks to synthesise what is currently known about the design, efficacy, and impact of CC interventions. METHODS: Cochrane, PubMed, Scopus, and Web of Science were systematically searched. Hand searching was performed on three key journals, reference lists and citation lists of included articles, and relevant review articles. Two levels of analysis were conducted. First, a numerical presentation of the characteristics of CC interventions. Second, a thematically orientated narrative analysis of intervention efficacy. RESULTS: A total of 1,882 records were screened; 62 papers were included. Most were implemented by palliative care organisations in Europe, North America, and Australia. Included studies were mapped against Clark et al.'s taxonomy of end-of-life interventions: educational (n=17); service (n=20); clinical (n=3); cultural (n=4); and multi-dimensional (n=18) interventions are discussed. While preliminary findings are positive, claims of efficacy are limited due to methodological paucity in the field. CONCLUSIONS: We argue that the field would benefit from more transparent and theoretically driven CC interventions in order to explicate the mechanism(s) for successful intervention implementation.


Subject(s)
Palliative Care , Humans , Palliative Care/methods , Australia , Europe
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