Purpose: St. Gabriel’s Hospital (SGH) in Namitete, Malawi, has a Home-Based Palliative Care program of 60 community health workers (CHWs) to support rehabilitation work. Over 5 years, these CHWs received support through annual rehabilitation training programs. The study explores the nature of the CHWs’ roles and factors affecting the program’s sustainability.
Subjects: Participants were home-based palliative care CHWs at SGH (n = 60).
Methods: This is a mixed-methods study including qualitative and quantitative data and analysis methods. Data were collected from training surveys, focus group discussion material, field and home-visit observation checklists.
Results: Results showed that 59% of the CHWs traveled = 5 km to visit patients. 100% of the 57 patients had participation restrictions. Following trainings, 93.3% of the CHWs felt more prepared. Qualitative analysis revealed four themes: (1) Empowerment and Motivation; (2) Barriers to care; (3) Communication and Network; (4) Scope of practice and Self-Perception of impact.
Conclusion: This study illuminated important aspects of the CHWs’ work: empowerment through training, burden of travel, and altruism. Future studies could include impact of CHW-to-caregiver training, patient outcome measures following care, and future training needs.
Significance: This study provides a unique perspective of the successes, barriers, and motivations of home-based CHWs in Malawi.
In 2019, the Royal College of Nursing (RCN) and Queen's Nursing Institute (QNI) recognised a significant reduction in the number of qualified district nurses (those who hold the Community Specialist Practitioner (CSP) qualification). Community nursing is an evolving role, and, with the role of community nurse expanding, the role of the CSP in supporting teams to adapt to the development of the role is more important than ever. As a leader, the CSP possesses skills in leadership and co-ordination of the team, alongside specialist knowledge of the provision of nursing care in community settings. This article seeks to explore the hidden practice of verification of expected adult deaths by registered nurses and how the CSP role is integral in developing and embedding this skill within a team.
Background: Advance care planning conversations and preparations do not occur as frequently as they should. Framing advance care planning as a health behavior and an opportunity for community engagement can help improve community-dwellers’ intentions to have discussions and preparations regarding facing serious illness, death and dying.
Methods: A multi-setting confidential pre/post paper survey assessing advance care planning discussions and preparation intentions was given to community-dwelling citizens residing in the New York metropolitan area. Survey items were adapted from a previous end of life survey to include questions on chronic illnesses, important conversations, comfort levels and concerns about end of life. The intervention was a 1-hour presentation on advance care planning (importance, laws, effective communication and audience questions)
Results: Our study found significant interest in discussing advanced care planning across age groups. There were significant changes for participant intentions regarding: having conversations with loved ones, a health care proxy or similar document and none; as well as differences in participant intentions for discussions with caregiver, family, friends, primary physician and no-one.
Conclusion: Educating individuals on the importance of advance care planning may be effective in changing community dwellers’ intentions to start the conversation and put advanced care planning measures in place.
Community participation is a frequently mentioned theme in palliative care projects. Yet most of the projects claiming to be community-led have only minimal participation from the community, usually in the form of resource mobilization. Achieving higher levels of participation, the process of involving community collectives as partners in running, and later taking responsibility to sustain and own the program, is more complex and more difficult to achieve. Common barriers include lack of the mandatory preparatory work to understand the social and political dynamics of the community, facilitators’ values and agenda assuming the dominant role in the project, unwillingness on the part of facilitators to give up control and problems with the ‘political process’ that should go with capacity building. Another issue is that community mobilization, being a dynamic cascading process, does not yield to conventional methods of evaluation.
Le Phare Enfants et Familles (Phare) est un organisme à but non lucratif qui oeuvre en milieu communautaire depuis vingt ans. Pour tenter d'approfondir les connaissances portant sur la prestation des soins palliatifs et de fin de vie (SPFV) en milieu communautaire, nous avons analysé notre expérience d'équipe. Parmi nos pratiques régulières, nous tenons une rencontre de débreffage à froid, c'est-à-dire de quelques jours à quelques semaines après chaque décès à la maison de soins palliatifs (MSP). Nous avons conduit 23 rencontres de débreffage au cours des quatre dernières années. Nous avons procédé à une analyse globale des thèmes abordés lors de chaque réunion, afin d'examiner l'expérience collective de l'équipe. Les thèmes principaux issus des rencontres des quatre dernières années ont été analysés et regroupés selon les défis et les succès rapportés par les participants.
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Les besoins de sauver des vies prennent souvent le dessus lors des crises humanitaires, au détriment de la souffrance et des besoins en soins palliatifs des gens affectés. Les soins palliatifs peuvent contrôler les symptômes et alléger la souffrance d’un large éventail de personnes malades ou blessées lors d’une crise humanitaire. À ce jour, très peu de programmes fournissent des soins palliatifs lors de situations de crise humanitaire. L’accent sur les résultats quantifiables et le manque de standards ou d’expertise sont des obstacles à la fourniture de soins palliatifs dans ces contextes. Notre équipe a identifié un besoin important en soins palliatifs chez les réfugiés Rohingyas au Bangladesh où de nombreuses personnes souffrent de douleurs et autres symptômes, mais sont incapables d’accéder aux soins dont elles ont besoin. Nous avons développé un programme communautaire, où les agents de santé communautaire fournissent des soins à domicile, avec le support des professionnels de la santé, ce qui garantit que les personnes atteintes de maladies graves reçoivent un soutien pour leurs symptômes physiques, notamment le soulagement de la douleur, ainsi qu’un soutien psychosocial et spirituel.
Background: In Canada, there is a growing need to develop community-based, culturally appropriate palliative care for Indigenous people living in First Nations communities. The public health approach to palliative care, which emphasizes community-based initiatives, is especially relevant in First Nations communities because care is grounded in their distinct social and cultural context. Central to the public health approach are educational strategies that strengthen communities' capacity to care for their vulnerable members as they die. This paper presents community-based research conducted with First Nations communities in Canada that aimed to assess and address local palliative care educational needs to improve community capacity in palliative care.
Methods: Participatory action research (PAR) was conducted with four First Nations communities in Canada over a six-year period (2010-2016). The research occurred in three phases. Phase 1: focus groups, interviews and surveys were employed to assess community specific needs and resources. Phase 2: recommendations were developed to guide the PAR process. Phase 3: educational resources were created to address the identified educational needs. These resources were implemented incrementally over 4 years. Ongoing process evaluation was employed, and revisions were made as required.
Results: Educational needs were identified for patients, families, community members and internal and external health care providers. A wide and comprehensive range of educational resources were created to address those needs. Those culturally appropriate educational resources are available in a very accessible and useable workbook format and are available for use by other Indigenous people and communities.
Conclusions: This research provides an example of the public health approach and offers implementation strategies around palliative care education. This paper contributes to the international literature on the public health approach to palliative care by presenting a case study from Canada that includes: conducting a culturally appropriate assessment of educational needs, creating recommendations, facilitating development and implementation of educational resources in the community to improve community capacity in palliative care.
Aims and objectives: To explore how community nurses (CNs) experience the collaboration with general practitioners (GPs) and specialist palliative home care team (PHCT) nurses in palliative home care and the perceived factors influencing this collaboration.
Background: The complexity of, and the demand for palliative home care is increasing. Primary palliative care is provided by CNs and GPs, often in collaboration with PHCT nurses. Although these professionals may each individually be part of a fixed team, a new temporary team is often composed for every new palliative patient. These membership changes, referred to as team membership fluidity, challenge professionals to work effectively.
Design and methods: A qualitative research design, using semi-structured interviews with CNs. Participant selection happened through regional palliative care networks in Belgium. The network's PHCT nurses selected CNs with whom they recently collaborated. Twenty interviews were conducted. A constant comparative analysis approach was used. COREQ guidelines were followed.
Results: Formal interprofessional team meetings were not common practice. The other's approachability and knowing each other positively influenced the collaboration. Time constraints, the GPs' lack of expertise, communication style, hierarchy perception and income dependency negatively influenced the collaboration with GPs and determined PHCT nurses' involvement. The coping strategies of CNs balanced between a behaviour focused to the patient and to the professional relationship. Specialist PHCT nurses were relied upon for their expertise but also to mediate when CNs disagreed with GPs.
Conclusion: Community nurses showed to be highly adaptable within the fluid team. Strikingly, dynamics described in the doctor-nurse game 50 years ago are still present today and affect the interprofessional communication. Interprofessional education interventions can contribute to improved interprofessional collaboration.
Relevance to clinical practice: The study findings uncovered critical knowledge gaps in interprofessional collaboration in palliative home care. Insights are relevant for and related to professional wellbeing and workplace learning.
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.
BACKGROUND: Access to community-based specialist palliative care teams has been shown to improve patients' quality of life; however, the impact on health system expenditures is unclear. This study aimed to determine whether exposure to these teams reduces health system costs compared with usual care.
METHODS: We conducted a retrospective matched cohort study in Ontario, Canada, using linked administrative data. Decedents treated by 1 of 11 community-based specialist palliative care teams in 2009/10 and 2010/11 (the exposed group) were propensity score matched (comorbidity, extent of home care, etc.) 1 to 1 to similar decedents in usual care (the unexposed group). The teams are comprised of a core group of specialized physicians, nurses and other providers; their role is to manage symptoms around the clock, provide education and coordinate care. Our primary outcome was the overall difference in health system costs (among 5 health care sectors) between all matched pairs of exposed versus unexposed patients in the last 30 days of life.
RESULTS: The total cohort of decedents included 3109 matched pairs. Among matched pairs, the mean health system cost difference was $512 (95% confidence interval [CI] -$641 to -$383) lower in the last 30 days among exposed than among unexposed patients. In the last 30 days, the mean home care costs of the exposed group were $189 higher (95% CI -$151 to $227) than those of the unexposed group, but their mean hospital costs were $733 lower (95% CI -$950 to -$516).
INTERPRETATION: Our study suggests that health system costs are lower for patients who have access to community-based specialist teams than for those who receive usual care alone, largely because of decreased hospital costs. Ensuring access to in-home palliative care support, as provided by these teams, is an efficacious strategy for reducing health care expenditures at the end of life.
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.
BACKGROUND: A public health approach to palliative care supports community-dwelling adults with advanced illness. A better understanding of successful community-based palliative care programmes and partnerships is needed to expand community-based services for ageing populations.
AIMS: This study describes two organisations in two different countries that provide health and social services to community-dwelling adults with advanced illness.
METHODS: Unstructured key-informant interviews and observational data were collected at the Christian Medical College's College of Nursing Community Health Programme (Vellore, India) and at Phinney Neighborhood Association Village (Seattle, Washington, USA).
FINDINGS: College of Nursing Community Health Programme nurses work with volunteer community health workers to identify and provide client-focused support to ensure quality-of-life. The Phinney Neighborhood Association Village is a volunteer-led organisation that provides social support. Both serve community-dwelling adults with advanced illness.
CONCLUSION: Partnerships between healthcare organisations and community volunteers support a public health approach to community-based palliative care.
Palliative care is recognised as a fundamental component of Universal Health Coverage (UHC), which individual countries, led by the United Nations and the WHO, are committed to achieving worldwide by 2030-Sustainable Development Goal (SDG) 3.8. As the incidence of non-communicable diseases (NCD) in low-income and middle-income countries (LMICs) increases, their prevention and control are the central aspects of UHC in these areas. While the main focus is on reducing premature mortality from NCDs (SDG 3.4), palliative care is becoming increasingly important in LMICs, in which 80% of the need is found. This paper discusses the challenges of providing comprehensive NCD management in LMICs, the role of palliative care in addressing the huge and growing burden of serious health-related suffering, and also its scope for leveraging various aspects of primary care NCD management. Drawing on experiences in India and Nepal, and particularly a project on the India-Nepal border in which palliative care, community health and primary care-led NCD management are being integrated, we explore the synergies arising and describe a model where palliative care is integral to the whole spectrum of NCD management, from promotion and prevention, through treatment, rehabilitation and palliation. We believe this model could provide a framework for integrated NCD management more generally in rural India and Nepal and also other LMICs as they work to make NCD management as part of UHC a reality.
BACKGROUND:: A key aspect to the provision of palliative care is maintaining the dignity of the individual being cared for. Nurses working in the community setting need knowledge and skills to meet the needs of individuals who need palliative care and their families. Dignity Care Intervention Ireland is a community-based pilot project designed to implement a dignity care intervention for individuals with a life-limiting condition living in their own home. As part of the overall intervention, an education programme was developed for nurses working in the community.
METHOD:: Completion of a locally-designed questionnaire pre- and post-education.
RESULTS:: Nurses working in the community setting welcomed and highly valued the Dignity Care Intervention Ireland education programme. There was an overall improvement in the understanding of palliative care for both groups and improved understanding of the principles of palliative care, with self-evaluated competence to apply these principles in daily clinical practice.
CONCLUSION:: The importance of education about palliative care to support the delivery of dignity-preserving care cannot be underestimated. Ensuring nurses have the requisite knowledge will enhance future practice development and subsequently improve care for patients with life-limiting conditions and their families.
Community-based day programs for frail older adults and their family caregivers, such as Adult Day Services (ADS), play a growing role in post-acute and hospice care transitions. ADS options, however, are often overlooked in hospital and emergency department discharge planning as well as in hospice and palliative care referrals. Lack of knowledge about and connectivity with ADS programs and the range of services that individual centers provide can impede comprehensive discharge planning and limit post-acute or palliative/hospice care options for frail older adults and their family caregivers.
Palliative and end-of-life care are special types of healthcare that focus on improving the quality of life of patients who are living with life-threatening illness or nearing their end of life. The primary goal here is to provide various support services to help the patients to maintain an active life and dignity. Assuming there are cost and resource limitations for delivering care within the system, where each care provider can support a limited number of patients, the problem can be defined as finding a set of suitable care providers with a minimum overall cost to match the needs of the maximum number of patients. In the grand scheme, the whole care system can be seen as a social network consisting of patients and care providers. This representation provides an opportunity to apply social network analysis techniques to enhance the topology of the system and improve its efficiency. In this paper, we propose a novel computational agent-based model to address this problem by extending the agent's capabilities using the benefits of the social network. We assume that each patient agent can cover its disabilities and perform its desired tasks through collaboration with other agents. The primary objective is to optimize a dynamic, personalized care pathway system that will support palliative care within a community eco-system. Testing the ability of the system to match social support agents with personal preferences, needs, and capabilities is the second goal of this research work. In addition, we are going to measure the impact of the system on perceived quality of life, social connectedness, caregiver burden, and care satisfaction. The performance and functionality of our proposed model have been evaluated using various synthetic and a real palliative networks. The results demonstrate a significant reduction in the operational costs and enhancement of the service quality.
BACKGROUND: In recent years, compassion has motivated the development of programs oriented to create communities and societies involved in the relief of suffering. The development of compassionate communities and cities begins in each one of us, though it relies on organizations, providers and societies as a whole who need tools and methodologies as a part of a set of actions to help compassionate communities and cities to become a reality rooted widely in social values. In order to describe the "All with You®" methodology and its components: a method designed to develop compassionate communities and cities at the end of life that can be extended to organizations, communities, municipalities, cities or countries. In addition, this article tries to describe several experiences from applying the method in different cities and contexts.
METHODS: A search of models for the development of compassionate communities was carried out initially to guide the elements and phases that could help to create a systematized method that will help organizations to create compassionate communities. After analysing the results, alliances were established with some of the main promoters at the time in the development of compassionate communities to validate the designed method. The city of Seville (Spain) was selected to validate the phases of the method and analyse the results based on a series of indicators. Finally, the methodology is being spread throughout cities in various countries, and the experiences are being evaluated with common indicators.
RESULTS: The "All with You®" method (Todos Contigo® in Spanish) has been developed as a systematic approach that enables anyone interested in building compassionate communities or cities to include all of the elements outlined in the Compassionate City Charter. All with You® is a method that includes eight phases that allows organizations to be guided in the development of compassionate communities and cities towards a certification process that is evaluated through a series of structures, process and results indicators. The main actions of this method are based on social awareness, training, and the implementation of networks of care using innovative elements like Community Promoters and the RedCuida protocol to provide support, backing and care for those who face advanced chronic disease and end of life situations. Several cities in Spain and Latin America have already joined the movement of compassionate cities using this method, including four in Spain (Seville, Badajoz, Getxo and Pamplona), four in Colombia (Cali, Medellin, Fusagasugá and Bogotá) and one in Argentina (Buenos Aires).
CONCLUSIONS: The All with You® method has made the development of compassionate communities and cities possible, aligning organizations and cities to promote compassionate acts, and to start creating networks involved in a global community united by a vocation for caring.
BACKGROUND: Contemporary end of life care policies propose increasing community capacity by developing sustainable skills, policies, structures, and resources to support members of a community in caring for each other at the end of life. Public health approaches to palliative care provide strategies to bring this about. Practical implementation can however be ineffective, principally due to failures to grasp the systemic nature of public health interventions, or to ensure that programs are managed and owned by community members, not the professionals who may have introduced them. This article outlines a comprehensive community development project that identifies local end of life needs and meets them through the efficient use of community resources.
METHODS: The project is the product of a three-phase enquiry. The first phase, carried out in a local community, examined carers' experiences of home-based dying, the networks that supported them during care, and broader community networks with the potential to extend care. Data were collected through in-depth research interviews, focus groups and consultation with a community research reference group. Findings were key issues to be targeted by a local community development strategy. In the second phase, these local findings were compared with other practice accounts to identify themes common to many contexts. A public health palliative care framework was then used to produce an evidence-informed community development model for end of life care. The third phase involves implementing and evaluating this model in different Australian contexts.
RESULTS: A major theme emerging in phase one of the enquiry was the reluctance of carers to ask for, or even accept, offers of help from family, friends and community networks despite their evident need for support while providing end of life care at home. Others' willingness to provide support was thus hindered by uncertainty about what to offer, and concern about infringing on people's privacy. To develop community capacity for providing end of life care, these social norms need to change. Phase two brought public health strategies to bear on the themes identified in phase one to develop the Healthy End of Life Project (HELP), a strengths-based sustainable community development project. This provides evidence-based and research-informed resources that equip communities to work cooperatively with carers, family, friends and neighbors in support of residents wishing to receive end-of-life care in their home or a community setting. Services may initiate use of the framework, and will share their expertise on health and death matters, but communities are the experts to lead implementation in their local area. The third part of the article outlines current initiatives to implement and evaluate HELP in several Australian contexts.
CONCLUSIONS: The substantive outcome of this enquiry is the 'Healthy End of Life Project (HELP); offering and providing, asking and accepting help'.
BACKGROUND: By now, the public health end-of-life care approach is well established and has induced diverse initiatives-subsumed under the concept of compassionate or caring communities-to engage the community in supporting vulnerable, dying people and their beloved ones. In the light of a participatory research project our paper examines the question: what are the deeper ideas behind caring communities and what constitutes a caring community?
METHODS: A multi-level analysis based on (I) qualitative research with focus groups and interviews with community members within the project; (II) the reflection of the role of participatory research in caring community initiatives, and (III) the meta-analysis of an international expert workshop, which allowed to discuss our experiences and insights in the light of international caring community models and expertise.
RESULTS: Our analysis of qualities ("ingredients") of a caring community, from the perspective of community members, highlighted the importance of the co-creation of supportive care relationships in the local care web, through everyday life solidarity in the neighbourhood, appreciating and exchanging the wisdom of care, and also marked the role of professionals as enablers. Participatory research in caring community developments has the potential to engage and empower citizens, and to interlink existential care-stories with questions about the structural and political environments of appropriate end-of-life care.
CONCLUSIONS: The caring community movement and public health end-of-life care has to maintain their critical potential against the commercialization and fragmentation of care (services), but also without "romanticizing" communities. Prospective caring community progresses need (I) an ecological health-promotion framework for action and (II) social learning processes along the existential experiences and the wisdom of community members, complementing each other. Organizing existential-political care dialogues can contribute to an ethic of caring in practice on a community level.