The compassionate communities connectors program: effect on healthcare usage.

Background: Public health approaches to palliative and end-of-life care focus on enhancing the integration of services and providing a comprehensive approach that engages the assets of local communities. However, few studies have evaluated the relative costs and benefits of providing care using these service models. Objectives: To assess the effect on healthcare usage of a community-based palliative care program ('Compassionate Communities Connectors') where practical and social support was delivered by community volunteers to people living with advanced life-limiting illnesses in regional Western Australia. Design: Controlled before-and-after study/Cost-consequence analysis. Methods: A total of 43 community-based patients participated in the program during the period 2020-2022. A comparator population of 172 individuals with advanced life-limiting illnesses was randomly selected from usage data from the same set of health services. Results: Relative to controls, the intervention group had lower hospitalizations per month [Incidence rate ratio (IRR): 0.37; 95% CI: 0.18-0.77, p = 0.007], less hospital days per month (IRR: 0.23; 95% CI: 0.11-0.49, p < 0.001) and less emergency presentations (IRR: 0.56; 95% CI: 0.34-0.94, p = 0.028. The frequency of outpatient contacts overall was two times higher for the intervention group (IRR: 2.07; 95% CI: 1.11-3.86, p = 0.022), indicating the Connector program may have shifted individuals away from the hospital system and toward community-based care. Estimated net savings of $AUD 518,701 would be achieved from adopting the Connector program, assuming enrollment of 100 patients over an average 6-month participation period. Conclusion: This combined healthcare usage and economic analysis of the 'Compassionate Communities Connectors' program demonstrates the benefits of optimizing palliative care services using home-based and community-centered interventions, with gains for the health system through improved patient outcomes and reduced total healthcare costs (including fewer hospitalizations and readmissions). These findings, coupled with the other published results, suggest that investment in the Connectors program has the capacity to reduce net health sector expenditure while also improving outcomes for people with life-limiting illnesses. Trial Registration: Australian and New Zealand Clinical Trial Registry: ACTRN12620000326998.

The Compassionate Communities Connectors programme: experiences of supported families and referring healthcare providers.

Background and Aim: Comprehensive evaluations that include the experience of patients and service providers are vital if interventions are to be translated into the standard practice of health services and allow formal networks to work as partners with informal community networks. However, published evaluations are limited in the palliative care volunteering literature. The objective of the study is to explore the experiences and views of both patients and their family carers who received support and their referring healthcare providers concerning their participation in the Compassionate Communities Connectors programme, in the south-west region of Western Australia. Connectors identified and addressed gaps in community and healthcare provision by accessing resources and mobilising social networks of people with life-limiting illnesses. The perspectives of patients, carers and service providers concerning the feasibility and acceptability of the intervention were sought. Methods: Semistructured interviews were undertaken with 28 patients/families and 12 healthcare providers, resulting in 47 interviews in total (March 2021-April 2022). An inductive content analysis was used in analysing interview transcripts to identify key themes. Results: Families greatly appreciated the support and enablement received from the Connectors. Healthcare providers were impressed with the high level of resourcefulness exhibited by the Connectors and perceived a great need for the programme, particularly for those socially isolated. Three themes captured the patients'/families' perspectives: connector as an advocate, increasing social connectedness and taking the pressure off families. Healthcare providers' perspectives were captured in three themes: reducing social isolation, filling a gap in service provision and building the capacity of the service. Conclusions: Perspectives of patients/families and healthcare providers demonstrated the mediating role of Connectors. Each group saw the Connectors' contribution through the lens of their particular interests or needs. However, there were indications that the connection was shifting the way each group understood and practised care, encouraging or restoring agency to families and reminding healthcare providers that collaborating beyond the boundaries of their roles actually enhances the whole ecology of care. Using a Compassionate Communities approach to mobilise health and community sectors has the potential to develop a more holistic approach that addresses the social, practical and emotional domains of care.

The Compassionate Communities Connectors model for end-of-life care: implementation and evaluation.

Objectives: This pilot project aimed to develop, implement and evaluate a model of care delivered by community volunteers, called Compassionate Communities Connectors. The Connectors' principal task was to support people living with advanced life-limiting illnesses or palliative care needs by enhancing their supportive networks with Caring Helpers enlisted from the local community. Methods: The project was undertaken in Western Australia, 2020-2022. A mixed methods research design incorporated a prospective cohort longitudinal design with two cross-sectional measurements, pre- and post-intervention. The primary outcome was the effect of the intervention on social connectedness. Secondary outcomes were the effect of the intervention on unmet practical or social needs and support from social networks, and the self-reported impact of the programme on social wellbeing such as coping with daily activities, access to formal services, community links, social activity and reducing social isolation. Results: Twenty Connectors were trained but 13 participated; 43 patients participated but 30 completed the study. Over half of these patients lived alone and 80% of their needs were in the social domain. There were significant improvements in social connectedness, reflected in reduced social isolation, better coping with daily activities and a two-fold increase in supportive networks. The programme was able to address gaps that formal services could not, particularly for people who lived alone, or were socially isolated in more rural communities that are out of the frequent reach of formal services. Conclusions: This project led to an ongoing programme that has been incorporated by the health service as 'business as usual', demonstrating rapid translation into practice. It has laid solid grounds for community capacity building with successful measurable outcomes in line with reports on similar programmes. Ongoing work is focused on replication in other communities to help them establish a similar model of care that better integrates formal and informal networks.

'The more you give, the better it is for you. You know the reward is greater than the effort': the Compassionate Communities Connectors' experience.

Background: The Compassionate Communities Connectors programme is a volunteer-led initiative designed to enhance the social networks of families living with chronic or life-limiting illnesses. Specially trained volunteers supported existing members of the families' social networks and also enlisted the support of community members, Caring Helpers, to address the social and practical needs of these families. The programme is an initiative of The South West Compassionate Communities Network in Western Australia, in partnership with the health service. Objective: To explore the experiences and views of Connectors implementing this model of care with a particular focus on its feasibility and acceptability from their perspective. Methods: Semi-structured telephone interviews were undertaken with 11 Connectors covering their experience with 37 patients/family carers (March 2021 to April 2022). A deductive content analysis was used in analysing interview transcripts. Results: Six themes captured the Connectors' view of their role and its impact on their clients and themselves: Mutual benefits from connection and reciprocity; It is ok to ask for and receive help; Sense of community as being 'part of a village'; Making a difference in social connectedness; Frustrations when not achieving everything you want to; Reflecting on the difference with traditional volunteering. These themes are complemented by a social network mapping example and a vignette demonstrating the increase both in connections and interaction between these connections and the process by which such changes took place. Conclusion: Volunteering as a Connector has been a positive and feasible experience for fostering a sense of community among participants, developing relationships with other community members, seeing the difference that the Connector role makes in the lives of those involved in the enhanced network and fostering growth in Connectors' emotional capacity and compassion. The work is challenging but rewarding and differs in several respects from traditional volunteering, particularly in the agency Connectors can bring to their role. A public health approach based on a close partnership between health services and communities/civic institutions is the optimal practice model.

Understanding the outcomes of spiritual care as experienced by patients.

In moving toward professionalising spiritual care in the healthcare system, as an equal partner in whole person care, it has become increasingly important to develop an evidence base for spiritual care interventions, their value and longer-term outcomes for those receiving this care. This study utilised hard copy questionnaires across five Australian general hospitals to investigate patient reported outcomes of in-patient spiritual care. The survey included the Scottish Patient Reported Outcomes Measure (PROM), measures of patient experience and an open-ended question about experience of care. Data indicated a positive correlation between positive experience of spiritual care and a high score on PROM. Qualitative data elaborated on if and how the spiritual care received met patients' needs, the qualities they valued in the provider of this care and impacts of the care they experienced. Further development of the PROM in a variety of situations is however recommended.

Knowledge and perceptions around self-management of type 2 diabetes among a Sudanese community in Australia: A qualitative study.

ISSUE ADDRESSED: People from Sudanese background are more likely to be diagnosed with type 2 diabetes (T2D) as compared to the general population. In recent years, there has been an increase in the number of migrants from Sudan to Australia. However, there is a dearth of research exploring the perceptions and experiences of self-management strategies for diabetes among this migrant Sudanese population residing in Australia. This study aims to explore these experiences and perceptions as well as to identify cultural aspects related to T2D self-management strategies for people from this migrant group. METHODS: A qualitative study using semi-structured in-depth interviews with Sudanese participants (n = 12) living with T2D was conducted in Melbourne, Australia. RESULTS: The thematic analysis found barriers to self-management of diabetes to include language differences, the burden of self-management, difficulties in accommodating traditional dietary practices in self-management, as well as the expectations of familial and social obligations. Enablers included positive relationships with health professionals, support networks, involvement in religion and adopting traditional remedies. CONCLUSIONS: This study found cultural considerations, such as incorporating traditional dietary practices and familial obligations into self-management, to be the most significant influence for this group of Sudanese participants in the way they managed their diabetes. SO WHAT: This study highlights the need for culturally appropriate provision of health services and resources for Sudanese people with T2D while recognising the value placed on traditional food choices. Importantly, the collectivist Sudanese culture must be considered for any future development and implementation of health promotion strategies.

Developing a death literacy index.

Performing end-of-life care can be a catalyst for developing a capacity called death literacy. This study aimed to develop a comprehensive and useable measure of death literacy that has the potential to assess interventions with individuals, communities, and societies. Using a mixed methods approach, a Death Literacy Index was developed from personal narratives and input from practitioners and experts. Refined on a sample of 1330 Australians using exploratory and confirmatory factor analysis and structural equation modeling, a 29-item Death Literacy Index was found to be reliable and demonstrated construct validity. Further studies are needed to test predictive validity.

Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care.

BACKGROUND: Consumer experience of palliative care has been inconsistently and selectively investigated. METHODS: People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received. RESULTS: 353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement. CONCLUSIONS: A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.

Palliative and End-of-Life Care Service Models: To What Extent Are Consumer Perspectives Considered?

This article presents evidence found in a search of national and international literature for patient preferences concerning settings in which to receive palliative care and the appropriateness of different models of palliative care. The purpose was to inform end-of-life care policy and service development of the Western Australian Department of Health through a rapid review of the literature. It was found that consumer experience of palliative care is investigated poorly, and consumer contribution to service and policy design is limited and selective. Most patients experience a mix of settings during their illness, and evidence found by the review has more to do with qualities and values that will contribute to good end-of-life care in any location. Models of care do not make systematic use of the consumer data that are available to them, although an increasingly common theme is the need for integration of the various sources of care supporting dying people. It is equally clear that most integration models limit their attention to end-of-life care provided by health services. Transitions between settings merit further attention. We argue that models of care should take account of consumer experience not by incorporating generalised evidence but by co-creating services with local communities using a public health approach.

Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease.

BACKGROUND: There are few illnesses as disruptive as motor neurone disease, a fatal neurodegenerative condition, where diagnosis introduces a clinical narrative of inevitable decline through progressive immobilisation into death. Recent evidence suggests that bereaved motor neurone disease family caregivers are more likely to be at moderate or high risk of complicated grief. METHODS: Qualitative data from an anonymous national survey of bereaved motor neurone disease caregivers (n = 393) was examined through thematic analysis to explore the experiences of people who are at low, moderate, and high risk of complicated grief. Up to 40% responded to three open-ended questions: How caregivers viewed their coping strategies; the advice they had for others and what had been positive about their experience. RESULTS: Ten themes informed the narratives of illness and loss. All three groups shared similar experiences but differed in their capacity to address them. The low-risk group seemed to recognise the uncertainty of life and that meaning needed to be created by them. For the moderate-risk group, while motor neurone disease was a major disruption, they could with support, regroup and plan in different ways. The high-risk group did not have many resources, external or internal. They felt let down when professionals did not have answers and could not see or did not know how to change their ways of responding to this unwanted situation. CONCLUSION: The differences in these three profiles and their narratives of loss should alert health and community service providers to identify and address the caregivers' support needs early and throughout the caregiving journey. Motor Neurone Disease Associations are involved throughout the illness journey and need to invest in a continuum of care incorporating end-of-life care and bereavement support. Community grief literacy and enhancement of social networks are keys to improved support from families and friends that can enable the focus to be on feelings of empowerment rather than abandonment.

Memorialization Practices Are Changing: An Industry Perspective on Improving Service Outcomes for the Bereaved.

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.

Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease.

BACKGROUND: Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored "goodness of fit" support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role.

The Evolving Landscape: Funerals, Cemeteries, Memorialization, and Bereavement Support.

The aim of this study was to provide a better understanding of current memorialization practices and their influence on grief due to bereavement and to explore ways of improving bereavement outcomes. The qualitative research design incorporated two phases, a scoping literature review, followed by in-depth interviews with eight service providers from the funeral, cemetery, and crematorium industries across Australia. The trend toward informal memorialization practices blurs the roles of community members and formal industry service providers. A public health approach to bereavement support that encompasses both groups is recommended as the most appropriate response to the evolving landscape. This approach focuses on building partnerships between industry service providers and other community organizations involved in end-of-life issues. We propose that reframing the role of formal industry service providers as educators and facilitators partnered within compassionate communities will support improved outcomes for the bereaved.

The Compassionate Communities Connectors model for end-of-life care: a community and health service partnership in Western Australia.

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.

Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: a population-based national study.

BACKGROUND: Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice.

Memorialisation during COVID-19: implications for the bereaved, service providers and policy makers.

BACKGROUND: The aim of this rapid perspective review is to capture key changes to memorialisation practices resulting from social distancing rules implemented due to the ongoing COVID-19 pandemic. METHOD: As published peer-reviewed research pertaining to memorialisation practices during the COVID-19 pandemic is lacking, this rapid review includes academic literature from the pre-COVID-19 period and international media reports during the pandemic. FINDINGS: Changes to memorialisation practices were under way before COVID-19, as consumer preferences shifted towards secularisation and personalisation of ritual and ceremony. However, several key changes to memorialisation practices connected with body preparation, funerals, cremation, burials and rituals have taken place as a consequence of the COVID-19 pandemic. DISCUSSION: Although boundaries between public and private memorialisation practices were already blurred, the COVID-19 pandemic has accelerated this process. Without access to public memorialisation, practices are increasingly private in nature. A number of implications are considered for the bereaved, service providers and policy makers. CONCLUSION: Forms of memorialisation and bereavement support emerging during the pandemic that blend the public and the private are likely to persist in a post-pandemic world.

What Spirituality Means for Patients and Families in Health Care.

This research focuses on the spiritual care experiences of patients and families at a hospital in Australia. Twenty-four patients and 10 family members were interviewed. Results indicate the importance of relatedness: being treated as a person, reminded of your capabilities and conversations about what matters. Maintaining contact with friends and family, sustaining religious and spiritual practices, music therapy and pet therapy were also significant and contact with the natural world and shared activities. The results indicate the importance of spirituality offered through pastoral care, and that all those involved in health care can contribute to the spiritually nurturing environment that reinforces healing.

Matching response to need: What makes social networks fit for providing bereavement support?

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.

Is there a role for the funeral service provider in bereavement support within the context of compassionate communities?

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.

Healthy End of Life Project (HELP): a progress report on implementing community guidance on public health palliative care initiatives in Australia.

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'.