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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 crosssectional 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care. [ABSTRACT FROM AUTHOR]

Background: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. Objectives: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. Methods: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018–2019) completed the pilot study. Results: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. Conclusion: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. Objectives: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. Methods: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018–2019) completed the pilot study. Results: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. Conclusion: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community. [ABSTRACT FROM AUTHOR]

Background: There is a dearth of national and international data on the impact of social support on physical, mental, and financial outcomes following bereavement. Methods: We draw from two large, population-based studies of bereaved people in Australia and Ireland to compare bereaved people's experience of support. The Australian study used a postal survey targeting clients of six funeral providers and the Irish study used telephone interviews with a random sample of the population. Results: Across both studies, the vast majority of bereaved people reported relying on informal supporters, particularly family and friends. While sources of professional help were the least used, they had the highest proportions of perceived unhelpfulness. A substantial proportion, 20% to 30% of bereaved people, reported worsening of their physical and mental health and about 30% did not feel their needs were met. Those who did not receive enough support reported the highest deterioration in wellbeing. Discussion: The compassionate communities approach, which harnesses the informal resources inherent in communities, needs to be strengthened by identifying a range of useful practice models that will address the support gaps. Ireland has taken the lead in developing a policy framework providing guidance on level of service provision, associated staff competencies, and training needs. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: There is a dearth of national and international data on the impact of social support on physical, mental, and financial outcomes following bereavement. Methods: We draw from two large, population-based studies of bereaved people in Australia and Ireland to compare bereaved people's experience of support. The Australian study used a postal survey targeting clients of six funeral providers and the Irish study used telephone interviews with a random sample of the population. Results: Across both studies, the vast majority of bereaved people reported relying on informal supporters, particularly family and friends. While sources of professional help were the least used, they had the highest proportions of perceived unhelpfulness. A substantial proportion, 20% to 30% of bereaved people, reported worsening of their physical and mental health and about 30% did not feel their needs were met. Those who did not receive enough support reported the highest deterioration in wellbeing. Discussion: The compassionate communities approach, which harnesses the informal resources inherent in communities, needs to be strengthened by identifying a range of useful practice models that will address the support gaps. Ireland has taken the lead in developing a policy framework providing guidance on level of service provision, associated staff competencies, and training needs. [ABSTRACT FROM AUTHOR]

The negative consequences of bereavement and the disruption of social relationships put the impact of bereavement squarely into a public health perspective. Adopting and strengthening a Compassionate Communities approach is necessary, not only for end-of-life care for dying people but also for providing bereavement support. Many palliative care services continue to adopt an unhelpful standardised approach in offering bereavement support. So, who provides support to the bereaved? Who needs support and to what extent? Importantly, who is perceived by bereaved people to have offered them support and was it helpful? Based on reported experiences of the bereaved in a national Australian survey, the majority of this support is provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. A public health approach to bereavement care is needed to support 'everyday assets' in the community without over-reach from professional services. Findings provided empirical evidence for building a community's capacity to provide the type of social and practical support advocated by the Compassionate Communities approach. This body of work, innovative in content, conceptual model and recruitment approach, challenged the existing bereavement support structure and provision and has influenced practice and policy. [ABSTRACT FROM AUTHOR]

Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers' grief, quality of life and general health in relation to non-caregivers. Aim: We aimed to determine how caregivers' grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes. Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points – once pre-death and three times post-death (3–4 months, 6–7 months and 9–10 months). Setting/participants: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements. Results: There were significant differences between the caregivers' and comparisons' grief, general health and quality of life at pre-death, 3–4 months and 6–7 months post-death, but not at 9–10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6–7 and 9–10 months post-death. Conclusion: It took 9–10 months for the caregivers' grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This study investigated the importance of religious and spiritual beliefs in daily life in explaining prolonged grief disorder (PGD) symptomatology. Participants were 588 bereaved adults who completed a questionnaire. The importance of spiritual beliefs in daily life explained a small to medium, significant 3% of variance in PGD symptoms, but religious beliefs in daily life did not. Individuals who placed moderate importance on spiritual beliefs in their daily life may experience more intense grief. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: This feasibility study aimed to identify and address the support needs of family carers (FCs) of people living with dementia and to assess whether the use of the Carer Support Needs Assessment Tool (CSNAT) intervention in home‐based care was acceptable and relevant to FCs. The CSNAT intervention comprised two FC support needs assessment visits, 7 weeks apart, plus associated actions addressing prioritised needs by the Client Care Advisors of a community care service in Western Australia in 2015. Telephone interviews were conducted with FCs on their experience using the CSNAT at the end of the intervention. Twenty‐one FCs were involved in the intervention and 15 of them completed the feedback interviews. Care recipients had moderate to severe dementia. The top five support needs reported by FCs were: having time to yourself in the day; knowing what to expect in the future; practical help in the home; looking after your own health and dealing with your feelings and worries. Three themes summarised their experience: a straightforward structured approach; awareness, acknowledgement and acceptance of their situation; and provision of support. FCs appreciated the opportunity to be heard and acknowledged, to have their practical and psychosocial support needs facilitated, to identify what is important to them and to receive a response in a timely manner. The CSNAT approach offered a structured carer‐led, person‐centred, supportive intervention that facilitated discussion between the family carer and the service provider about support needs and strategies to address them. [ABSTRACT FROM AUTHOR]

Context: Many family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasize the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers' perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes.Objectives: The objective was to explore family caregivers' preparations for death.Methods: A total of 16 family caregivers of people in receipt of palliative care participated in semi-structured, face-to-face interviews. Transcripts were coded and analyzed using grounded theory techniques.Results: Analysis yielded two overarching themes: Here and Now centered on the caregivers' focus on the multidimensional and all-consuming nature of caregiving for someone who is near death. Negotiating the Here/After described the tension the caregivers faced in vacillating between focusing on the care during the illness trajectory (Here) and worries and plans for the future (After).Conclusion: This exploratory study is the first to focus solely on family caregivers' experiences of preparing for a death. The caregivers described the complexities of trying to prepare while feeling overwhelmed with demands of caregiving throughout an unpredictable illness trajectory. The caregivers in the present study were cognitively prepared, some were behaviorally prepared, but emotional preparedness was challenging. Services should not assume that all family caregivers are well-prepared for the death. Caregivers would likely benefit from the assessment and promotion of their death preparedness. [ABSTRACT FROM AUTHOR]

Abstract: While the experiences of family members supporting a person with a terminal illness are well documented, less is known about the needs of carers of people with neurological diseases, in particular, Motor Neurone Disease (MND). This paper describes the qualitative data from a large Australian survey of family carers of people with MND, to ascertain their experiences of receiving the diagnosis. The aim of the study was to describe the experiences of family carers of people with MND in receiving the diagnosis in order to inform and improve ways in which the diagnosis is communicated. Anonymous postal surveys were sent to people with MND in Australia and their family carers respectively. The perceived ability/skills of neurologists was assessed using a five‐point scale from excellent to poor. Attributes of communication of bad news was measured by the SPIKES protocol. Each survey question invited further written responses. Eight hundred and sixty‐four questionnaires were posted to people with MND and their family carers, with assistance from MND associations. One hundred and ninety‐six family carers submitted responses, of which 171 (88%) were patient‐carer dyads. Analyses were conducted on 190 family carers. Five themes emerged from reading and re‐reading written responses: frustrations with the diagnosis; giving information; family carer observations of the neurologist; the setting; and what would have made the diagnosis easier? The delivery of the diagnosis is a pivotal event in the MND trajectory. Satisfaction for patients and their family carers is related to the neurologists showing empathy and responding appropriately to their emotions, exhibiting knowledge and providing longer consultations. Neurologists may benefit from education and training in communication skills to adequately respond to patients’ and families’ emotions and development of best practice protocols. [ABSTRACT FROM AUTHOR]

The diagnosis of Motor Neurone Disease (MND) is devastating for people with MND (PwMND) and their families. The objective of this study is to describe the experiences of PwMND in receiving the diagnosis in order to inform a more person-centred approach to communicating such bad news. The design was an anonymous postal survey facilitated by all MND associations across Australia (2014–15). Survey questions centred on the SPIKES protocol for communicating bad news; each question contained an area for written responses, which were thematically analysed for content. Two hundred and forty-eight responses were received from people with MND (29% response rate). Four themes emerged: challenges in being diagnosed with MND; the emotions experienced; the good and the bad; and links to further information and support. Receiving such a diagnosis requires preparation, forethought, sensitive and individualised care on the part of the neurologist, including where and how the diagnosis is given; the supports required; and timing, amounts and sources of giving information. The emotional reactions of the neurologist also caused a lasting impression on those receiving the diagnosis. This study could form the basis for best practice programs implementing a more person-centred approach to caring for PwMND right from the diagnosis stage. The focus needs to shift on the person's values, preferences, psychosocial and existential concerns in the context of the underlying disease experience and the manner clinical practice is delivered. [ABSTRACT FROM AUTHOR]

Context: The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention.Objectives: This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death.Method: All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death.Results: The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P < 0.001) and that patients have achieved their preferred place of death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02).Conclusions: The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care. [ABSTRACT FROM AUTHOR]

Communication of the diagnosis of MND is daunting for patients and neurologists. This study aimed to establish a knowledge base of current Australian practice of breaking the news of an MND diagnosis, to assess the neurologists' educational and training needs and to compare the feedback obtained from neurologists and patients to international practice guidelines. An anonymous survey of neurologists was undertaken in Australia (2014). 73 neurologists responded to this national survey (50.4% response rate). Nearly 70% of neurologists reported finding it “somewhat to very difficult” communicating the MND diagnosis, and 65% reported feeling moderate to high stress and anxiety at the delivery of diagnosis. Compared to international guidelines, areas for improvement include length of consultation, period of follow up and referral to MND associations. Two-thirds of neurologists were interested in further training to respond to patient's emotions and development of best practice guidelines. This is the first national study to provide a comprehensive insight into the process of delivering the MND diagnosis from the neurologists' perspective and to make comparisons with those of patients and the international guidelines. This study forms the basis for developing protocols to improve communication skills and alleviate the emotional burden associated with breaking bad news. [ABSTRACT FROM AUTHOR]

Our objectives were to identify the experiences of people with MND in receiving the diagnosis and to determine which aspects of breaking this bad news were associated with greater satisfaction with the way the diagnosis was delivered to them. An anonymous postal survey was facilitated by all MND associations in Australia, in 2014, and centred on the SPIKES protocol for communicating bad news. Of the patients (n = 248, response rate 29%), 36% were dissatisfied with the delivery of the diagnosis and gave low ratings on the ability/skills of their neurologists to deliver the diagnosis. It was evident that the longer the patients spent with their neurologists during breaking such bad news, the more they were satisfied and the higher they rated the neurologists’ abilities/skills. The largest significant differences between neurologists rated as having high or low skills in delivering the diagnosis were in four domains: 1) responding empathically to the feelings of patient/family; 2) sharing the information and suggesting realistic goals; 3) exploring what patient/family are expecting or hoping for; and 4) making a plan and following through. In conclusion, with over one-third of patients dissatisfied with their experience, there is room for improvement in the practice of neurologists in specified areas that could form the basis for changing practice, and the development of standards and protocols likely to have implications at the international level. [ABSTRACT FROM PUBLISHER]

A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Care Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers’ feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation of the evolving caregiver needs at different stages of the disease. [ABSTRACT FROM AUTHOR]

Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers’ needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain. [ABSTRACT FROM AUTHOR]

Background: The aim of the current study is to determine the effects of caregiving on bereavement outcome. The study will address two important gaps in the research literature: (1) the relationship between pre-death distress and post-death outcomes and (2) family caregivers' anticipation and preparation of the death of the person for whom they care. Methods/Design: We will conduct a longitudinal, prospective study of adult family caregivers of adult patients receiving palliative care. All participants will complete a questionnaire administered at four points - approximately 4-8 weeks prior to bereavement, and 3-4, 6-7, and 9-10 months post-bereavement. The questionnaire includes measures of multidimensional caregiving experiences (strain, distress, positive appraisals, and family wellbeing), caregiver prolonged grief, multidimensional grief responses (despair, panic behaviour, blame and anger, detachment, disorganisation, and personal growth), prolonged grief, quality of life, general health (psychological and physical) and demographics. These caregivers' data will be compared to a comparison group matched for age, sex, and postcode, allowing the caregivers' general health and quality of life to be compared to a normative group. The caregivers will also be invited to participate in a semi-structured interview about preparing for impending bereavement. Discussion: This is the first study to address the methodological limitations in the current literature and will likely make a significant contribution to both our understanding of caregiving on bereavement outcome and to bereavement care offered in palliative and hospice settings. [ABSTRACT FROM AUTHOR]

This study identifies and describes the profiles of bereavement risk and support needs of a community sample in Australia and tests the fit of the data with the three-tiered public health model for bereavement support. Family members who were bereaved 6–24 months prior to the survey and who were clients of four funeral providers participated (May-July 2013). A postal survey was used to collect information about bereaved people’s experience of caring and perceived satisfaction with any bereavement support provided. The questionnaire included a validated risk assessment screening measure for Prolonged Grief Disorder (PG-13). A total of 678 bereaved people responded. The model predicted that 60% of the sample would be low risk, 30% moderate risk, and 10% high risk. Actual figures were very close at 58.4%, 35.2% and 6.4% respectively. The analysis of the demographic characteristics, experience and impact of caring and bereavement, and satisfaction with support received from a variety of sources revealed differential experiences and needs that align with the expectation of low, moderate, and high bereavement support need, as articulated in the public health model. This is the first empirical test of the public health model of bereavement support. As there is a lack of clear evidence to guide development and allocation of bereavement support programs, the findings have the potential to inform the ability of services, community organizations and informal networks to prioritize care according to each level of bereavement need. This is essential to achieve cost-effective and equitable resource allocation. [ABSTRACT FROM AUTHOR]

Background: There are calls to explore psychological interventions to reduce distress in patients with motor neuron disease (MND) and their family caregivers. Dignity therapy is a short-term psychotherapy intervention shown to alleviate distress for people with life-limiting illnesses. Objectives: To assess the acceptability, feasibility, and effectiveness of dignity therapy to reduce distress in people with MND and their family caregivers. Methods: The study used a repeated-measures design pre- and post-intervention. Acceptability and feasibility were assessed using participants' ratings of the helpfulness of the intervention across several domains and time and resources required. Effectiveness measures for patients included: dignity-related distress, hopefulness, and spiritual well-being; and those for family caregivers included burden, hopefulness, anxiety, and depression. Results: Twenty-seven patients and 18 family caregivers completed the intervention. Dignity therapy was well accepted, including those patients who required assisted communication devices. The feasibility may be limited in small or not well-resourced services. There were no significant differences in all outcome measures for both groups. However, the high satisfaction and endorsement of dignity therapy by patients suggests it has influenced various important aspects of end-of-life experience. Family caregivers overwhelmingly agreed that the dignity therapy document is and will continue to be a source of comfort to them and they would recommend dignity therapy to others in the same situation. Conclusions: This is the first dignity therapy study to focus on MND and on home-based caregiving. Results established the importance of narrative and generativity for patients with MND and may open the door for other neurodegenerative conditions. [ABSTRACT FROM AUTHOR]

The adoption of evidence-based hierarchies and research methods from other disciplines may not completely translate to complex palliative care settings. The heterogeneity of the palliative care population, complexity of clinical presentations, and fluctuating health states present significant research challenges. The aim of this narrative review was to explore the debate about the use of current evidence-based approaches for conducting research, such as randomized controlled trials and other study designs, in palliative care, and more specifically to 1) describe key myths about palliative care research; 2) highlight substantive challenges of conducting palliative care research, using case illustrations; and 3) propose specific strategies to address some of these challenges. Myths about research in palliative care revolve around evidence hierarchies, sample heterogeneity, random assignment, participant burden, and measurement issues. Challenges arise because of the complex physical, psychological, existential, and spiritual problems faced by patients, families, and service providers. These challenges can be organized according to six general domains: patient, system/organization, context/setting, study design, research team, and ethics. A number of approaches for dealing with challenges in conducting research fall into five separate domains: study design, sampling, conceptual, statistical, and measures and outcomes. Although randomized controlled trials have their place whenever possible, alternative designs may offer more feasible research protocols that can be successfully implemented in palliative care. Therefore, this article highlights “outside the box” approaches that would benefit both clinicians and researchers in the palliative care field. Ultimately, the selection of research designs is dependent on a clearly articulated research question, which drives the research process. [ABSTRACT FROM AUTHOR]

Implementing evidence-based and cost-effective bereavement care is a challenge. A self-report measure could assist to identify caregivers at-risk of prolonged grief. We developed a new measure via five steps: identification of risk and protective factors for prolonged grief, item generation, consultation with an expert panel (n = 8), review by the academic team and expert panel, and a pilot test with family caregivers (n = 19) from three palliative care services. The Grief and Bereavement Assessment is a brief self-report measure that is theoretically and empirically grounded, acceptable to caregivers, feasible for use in palliative care, and requires psychometric validation. [ABSTRACT FROM AUTHOR]

Public health approaches to palliative care have long promoted the contribution of formal and informal volunteering to providing effective end-of-life care in neighbourhoods and communities. A central strategy for this is a 'compassionate communities' approach that focuses on building care networks and developing community members' capacities in end-of-life care. There is anecdotal evidence of differences in the motivations and life experiences of traditional palliative care volunteers and volunteers in compassionate community programs. There is however very little research into volunteers seeking a compassionate communities orientated role. This study describes the motivations, experiences and characteristics of volunteers participating in a program called compassionate connectors in Western Australia. Twenty volunteers with a variety of caregiving experiences participated in the pilot study through submitting an expression of interest for recruitment. Analysis indicated that the compassionate community connector role attracted experienced community volunteers who were already familiar with community services and end-of-life supports in their community, demonstrating a pre-existing understanding of the practical and emotional supports families may need for end-of-life care. They articulated some key differences with the hospice/palliative care volunteers and how they wish to engage in fresh ways with their community and move beyond traditional volunteering to exercise more autonomy in providing care. This article argues that clarifying these characteristics will benefit new compassionate community initiatives and provide important information for hospice and palliative care services that may be considering undertaking compassionate community projects. Conceptual clarity about these differing roles will be helpful for all collaborations and partnerships that involve volunteer recruitment and management. [ABSTRACT FROM AUTHOR]

As a home death seems to be the perceived ideal, terminally ill people who live alone are at a disadvantage in terms of their place of care and death and little is known about their end-of-life preferences. This study aimed at eliciting patient preferences for their place of care and death longitudinally at two points during their illness trajectory, and reporting on the extent they were able to achieve their place of choice or congruence between preferred and actual place of death. A questionnaire was administered by a researcher in the patients' homes during two visits, 6-12 weeks apart depending on patient prognosis. Forty-three patients of Silver Chain Hospice Care Service in Western Australia participated during 2009-2010. The results indicated that preferences were in favour of either a home or hospice death, with more preferring home as a place of death rather than a place of care. However, overall congruence between preferred and actual place of death was between 53% and 41% dependent on whether it was based on first or second visit preferences respectively. This is the first longitudinal study to elicit the end-of-life preferences of terminally ill people who live alone. As home may not be the preferred location for dying for many patients (nearly half of the patients in this study), ability to die in the place of choice needs to be looked at as a possible indicator of meeting patient needs or as a quality measure in end-of-life care. [ABSTRACT FROM AUTHOR]

The article discusses a study to evaluate family care-giving for patient with motor neuron disease and suggest interventions to alleviate burden and improve the quality of life for people in this group. The study found that motor neuron disease family caregivers experienced a substantial burden and distress, and the need for improvements in access to palliative care services and the absence of interventions to improve care. The need is to provide direct practical and psychosocial support.

This project implemented and evaluated two models of care for terminally ill people living alone at home: installing personal alarms (PA) and providing extra care aide (CA) support. The primary aim was to assess the feasibility of using a randomised controlled trial (RCT) approach with this group. A secondary aim was to assess the potential impact of the models of care on the participants' quality of life, symptom distress, anxiety and depression, and perceived benefits and barriers to their use. The two models of care were piloted in collaboration with Silver Chain Hospice Care Service (SCHCS) in Western Australia during 2009-2010. Using a pilot RCT design, equal numbers of participants were randomised to receive extra CA time, PAs or standard care. Attrition reduced the sample size from 20 in each group to 12, 14 and 17 respectively. The intervention period was between 6 and 12 weeks depending on prognosis. The participants were functionally and psychologically well and the majority lived alone by choice. There were physical and psychological benefits associated with provision of the two models of care, particularly for the group supported by CAs in terms of improved sleeping and appetite. However, the impact was mostly not statistically significant due to small sample sizes. The study has highlighted two methodological challenges: the wide variation in the degree of living alone at home leading to complex inclusion criteria, and an RCT approach with attrition differing across groups and patients not wanting to be included in the assigned group. The RCT approach is not considered appropriate for the 'home alone' palliative care population that would have been better supported by providing each participant with a personalised model of care according to needs. However, the outcomes of the project have prompted changes in SCHCS practice when providing care to these patients. [ABSTRACT FROM AUTHOR]

The article discusses a study exploring the experiences of motor neurone disease (MND) family carers. The results revealed that MND diagnosis has a deep impact on the family carer of the person with the disease. The role of carers was complicated by various losses triggered by their partner's diagnosis. The study provides a basis for research into the role of palliative care services in supporting MND carers before and after the death of their spouses. Also discussed are the limitations of the study.