Background: There is an international drive towards increasing provision of community-led models of social and practical support for people living with advanced illness.
Aim: This feasibility project aims to develop, implement and evaluate a model of community volunteers, identified as Compassionate Communities Connectors, to support people living with advanced life limiting illnesses/palliative care needs. The aims also include the development and evaluation of a training programme for volunteers and assessment of the feasibility, acceptability and preliminary effectiveness of this model of care.
Methods: The approach seeks to map and mobilise people's personal networks of care through the Connectors enlisting Caring Helpers (community volunteers). Up to 10 Connectors will be trained to work with at least 30 families selected by the palliative care service as requiring support. The primary outcome is the effect of the intervention on social connectedness. Secondary outcomes are the intervention's effect on unplanned hospital utilisation, caregiver support needs, advance care plans and satisfaction with intervention for patients/carers, volunteers and service providers.
Conclusion: It is expected that this intervention will enhance patient, carer and family social, psychological and practical support and reduce the need for dying people to be admitted to a hospital.
A population survey finds that bereaved people draw upon diverse sources of support in their communities, from both formal services and informal networks of care. The formal service most frequently recognised by participants is provided by funeral directors. We outline some reasons for this, and explore one particular theme, memorialisation, in which funeral providers have traditionally been a lead discipline. Significant changes in memorialisation over recent decades challenge today’s funeral industry, but also draw our attention to underlying social changes reshaping our understanding not only of bereavement care but of care in general. Bereavement support is most effective when provided collaboratively by formal and informal care providers, but collaboration is challenged by policies that continue to privilege formal services over informal care. This challenge of developing constructive, respectful and complementary collaborations between formal and informal care is not peculiar to bereavement care, but is a social policy imperative for contemporary societies.
Although considerable research efforts have focused on bereavement outcomes following loss, there are few studies which address the role of memorialization, particularly as it relates to formal service provision. Currently the funeral, cemetery, and crematorium industries are observing a steady decline in traditional and formal memorialization practices. This study aims to identify current memorialization practices and emerging trends, highlight key priorities for improving service outcomes for the bereaved, and understand the implications of changing consumer preferences for service provision. The study’s qualitative research design incorporates two phases, a scoping literature review followed by in-depth interviews with eight service providers from the funeral, cemetery, and crematorium industries. A key finding is that the trend toward contemporary and informal memorialization practices blurs the lines between the role of consumers and service providers. There is a clear opportunity for service providers to engage in community education as a means of building supportive relationships with and improving service outcomes for the bereaved.
The objectives of this study were to explore the goodness of fit between the bereaved peoples' needs and the support offered by their social networks; to ascertain whether this support was experienced as helpful or unhelpful by bereaved people; and to explore both the types of social networks that offer effective support and the characteristics of the communities that encourage and nurture such networks. This study was based on qualitative interviews from twenty bereaved people, in Western Australia, interviewed in 2013. A framework analysis of these interviews was undertaken using a deductive approach based on the goodness of fit framework. Much of this support is provided informally in community settings by a range of people already involved in the everyday lives of those recently bereaved; and that support can be helpful or unhelpful depending on its amount, timing, function and structure. Improving the fit between the bereaved person's needs and the support offered may thus involve identifying and enhancing the caring capacity of existing networks. An important strategy for achieving this is to train community members in mapping and developing these naturally occurring networks. Some such networks will include relationships of long standing, others may be circles of care formed during a period of caring. Peer support bereavement networks develop from these existing networks and may also recruit new members who were not part of the caring circle. The findings endorse social models of bereavement care that fit within a public health approach rather than relying solely on professional care. As exemplified by Compassionate Communities policies and practices, establishing collaboration between community networks and professional services is vital for effective and sustainable bereavement care.
This is the first study to explore bereaved individuals’ experiences of funeral service providers using these services’ databases. A total of 839 Australians participated in a postal survey, 6–24 months into their bereavement. Funeral providers were reported to be the third most prevalent form of bereavement support after friends and family. Analysis found six themes related to perceived helpful or unhelpful support: instrumental support, professionalism, informational support, financial tension, communication, and emotional support. Funeral providers could improve their support by adopting a proactive approach to bereavement needs and offering personalized and ongoing support. We develop these suggestions by exploring their potential contributions to building community capacity around death, dying and bereavement.
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'.
AIMS: To determine who provides bereavement support in the community, what sources are perceived to be the most or least helpful and for what reason, and to identify the empirical elements for optimal support in developing any future compassionate communities approach in palliative care.
DESIGN: A population-based cross-sectional investigation of bereavement experiences. Sources of support (informal, community and professional) were categorised according to the Public Health Model of Bereavement Support; most helpful reasons were categorised using the Social Provisions Scale, and least helpful were analysed using inductive content analysis.
SETTING AND PARTICIPANTS: Bereaved people were recruited from databases of funeral providers in Australia via an anonymous postal survey (2013-2014).
RESULTS: In total, 678 bereaved people responded to the survey. The most frequently used sources of support were in the informal category such as family, friends and funeral providers. While the professional category sources were the least used, they had the highest proportions of perceived unhelpfulness whereas the lowest proportions of unhelpfulness were in the informal category. The functional types of helpful support were Attachment, Reliable Alliance, Social Integration and Guidance. The five themes for least helpful support were: Insensitivity, Absence of Anticipated Support, Poor Advice, Lack of Empathy and Systemic Hindrance.
CONCLUSION: A public health approach, as exemplified by compassionate communities policies and practices, should be adopted to support the majority of bereaved people as much of this support is already provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. This study has provided further support for the need to strengthen the compassionate communities approach, not only for end of life care for dying patients but also along the continuum of bereavement support.
BACKGROUND: There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of people with intellectual disabilities, particularly those in disability community living services.
METHODS: A mixed-methods approach was used. Quantitative data were gathered through a survey of disability support staff working in government-managed community living services in the Australian state of Victoria. These quantitative data informed the collection of qualitative data through focus groups and research interviews. A public health palliative care framework provided the basis for developing an organizational change model from the consolidated data.
RESULTS: There is a strong relationship between organizational structure and culture, and both influence end-of-life practice in community living services. Barriers to good practice arise from the differing attitudes of paid carers involved, and from uncoordinated approaches reflecting misaligned service systems in the disability and palliative care fields. Organizational reorientation is crucial to achieving sustainable change that will support healthy dying.
CONCLUSIONS: End-of-life care requires the collaboration of disability and palliative care services, but for care to achieve palliative care goals, the collaboration must be led by disability services. We outline here an organizational model we have developed from public health principles to manage end-of-life care in community living services.
BACKGROUND: Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families.
OBJECTIVE: To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines.
DESIGN: An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014-15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not.
RESULTS: More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4-10%). The support for family caregivers before and after their relative's death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3-6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as "not personal" or "generic", or "just standard practice".
CONCLUSIONS: Timeliness and consistency of relationship is crucial to building rapport and trust in the service's ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre-bereavement period and developing community capacity and referral pathways for bereavement care. Our findings suggest that bereavement support in Australian palliative care services has only a tenuous relationship with guidelines and assessment tools, a conclusion also drawn in studies from other countries, emphasizing the international implications of our study.
Cet article présente les résultats d'une enquête des personnes endeuillées, réalisée auprès de quatre fournisseurs de services funéraires en Australie. Elle confirme un modèle de santé publique prédisant que plus de la moitié des personnes présentait un faible risque de deuil compliqué, un autre tiers un risque modéré, tandis qu'une petite minorité répondrait aux critères d'un trouble du deuil prolongé. L'enquête montre également différents modèles de besoins et sources de soutien pour chacun des trois groupes.
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Si les soins palliatifs sont bien développés en termes de politique de santé publique en Australie, il n'en est pas de même pour le soutien de deuil qui accompagne les décès en soins palliatifs. Les auteurs argumentent que les services de soins palliatifs devraient non seulement fournir des soins pour permettre à la personne gravement malade de mourir dignement mais encore fournir un bon soutien de deuil aux proches, ce qui signifie investir les efforts principalement dans le développement d'une capacité communautaire au soutien de deuil plutôt que de chercher à délivrer des services de soutien de deuil spécialisés aux proches et amis des mourants en soins palliatifs.