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Anne Hogden,1 Geraldine Foley,2 Robert D Henderson,3 Natalie James,4 Samar M Aoun5 1Australian Institute of Health Innovation, Macquarie University, Sydney, NSW, Australia; 2Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, the University of Dublin, Republic of Ireland; 3Neurology, Royal Brisbane & Women’s Hospital, Brisbane, QLD, 4Motor Neurone Disease (MND) Service, Communication and Assistive Technology (CAT) Clinic, St Joseph’s Hospital, St Vincent’s Health Network, Sydney, NSW, 5School of Nursing, Midwifery and Paramedicine, Faculty of Health Sciences, Curtin University, Perth, WA, Australia Abstract: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2–3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients’ quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice. The authors explain how multidisciplinary ALS care is delivered. The existing models of care, the role of palliative care within multidisciplinary ALS care, and the costs of formal and informal care are examined. Critical issues of ALS care are then discussed in the context of the support rendered by multidisciplinary-based care. The authors situate the patient and family as key stakeholders and decision makers in the multidisciplinary care network. Finally, the current challenges to the delivery of coordinated interprofessional care in ALS are explored, and the future of coordinated interprofessional care for people with ALS and their family caregivers is considered. Keywords: quality of life, interdisciplinary, interprofessional, palliative care, care coordination, motor neuron disease

Objectives: To describe hospital and emergency department use in the last year of life by people for whom death from cancer or one of another nine conditions was an expected outcome.Design, Participants and Setting: Retrospective cross-sectional study based on death registrations and morbidity data for 1071 Western Australians who died between 1 August 2005 and 30 June 2006. Decedents had an informal primary carer, did not live in residential aged care and died of a condition amenable to palliative care.Main Outcome Measures: Total number of hospital admissions; emergency presentations (with and without hospital admission); days spent in hospital by age group at death, sex, metropolitan or rural place of residence and cancer versus non-cancer diagnosis; proportion in hospital on any day in the last 365 days of life; time points of change in the last 365 days of life at which there was an increasing proportion of hospital admissions for those with cancer and non-cancer conditions.Results: All but 4% of the decedents spent time in hospital with a marked increase in hospitalisations in the last 108 days of life for people who died of cancer and the last 83 days of life for people who died of non-cancer conditions. Those with cancer spent less time in hospital than those with other diagnoses. Seventy per cent of the cohort had at least one emergency presentation. On the last day of life, 61.5% of people were in hospital and 4.0% had been seen in emergency departments.Conclusions: Western Australian hospitals currently provide extensive and progressively greater care at the end of life. Identifying patterns of emergency and inpatient use for various disease trajectories will assist in the planning of appropriate services for people where death is an expected outcome. [ABSTRACT FROM AUTHOR]

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined. [ABSTRACT FROM AUTHOR]

This paper examines the debate about best evidence within the public health literature and proposes that similar arguments and concerns exist with respect to use of current evidence-based approaches to implementing research and evaluating the literature in palliative care. Whilst randomized controlled trials (RCTs) remain the gold standard and are appropriate in many instances of palliative care research, there is a need for an alternate research design framework that incorporates contextual and compositional effects pertinent to palliative care research. A framework, entitled Equity-Based Evidence, is discussed as an approach to evidence-based knowledge development in palliative care. [ABSTRACT FROM AUTHOR]

Background: People with multiple sclerosis (pwMS) struggle with whether, how, and how much to disclose their diagnosis. They often expend resources to conceal their diagnosis, and hold beliefs that it may negatively affect their personal relationships and/or professional opportunities. To better understand these effects, we developed a measure to quantify concealment behaviors and disclosure beliefs. Our main objective is to evaluate relationships of DISCO-MS responses to health and quality of life in a multinational cohort., Methods: Survey responses were obtained for DISCO-MS and PROMIS-MS scales: global health, communication, social roles participation, anxiety, depression, emotional / behavioral dyscontrol, fatigue, lower extremity function, positive affect / well-being, social roles satisfaction, sleep, stigma, upper extremity function, cognitive function, bladder control, bowel control, visual function. Simple linear regression assessed associations., Results: 263 pwMS were include. Higher concealment was associated with higher anxiety (beta= 0.15 [0.07, 0.23]), depression (beta = 0.13 [0.05, 0.21]), emotional dyscontrol (beta = 0.12 [0.04, 0.20]), lower affect / well-being (beta = -0.13 [-0.21, - 0.05]). Higher anticipation of negative consequences of disclosure was associated with lower self-reported physical (beta = -0.15) and mental health (beta = -0.14), lower positive affect / well-being, social roles satisfaction, higher anxiety, depression, emotional dyscontrol, sleep disturbance, and higher perceived stigma., Discussion: These results reveal potential consequences of diagnosis concealment for physical and mental health and quality of life. Raising awareness and implementing interventions may mitigate negative repercussions of concealment., Competing Interests: Declaration of competing interest Disclosures: VML: Speaker honoraria: American Academy of Neurology. Compensation for reviewing: National Institutes of Health, United States Department of Defense. Advisory Board: Biogen. CB: No disclosures to report. RTS: Consulting: Octave Bioscience. Compensation for reviewing: American Medical Association, National Institutes of Health, Department of Defense, Emerson Collective. SMW: No disclosures to report. HS: No disclosures to report. SMA: No disclosures to report. AS: Advisory Board: Almirall, Merck. Non-promotional speaking: Merck, Neurotalk. AJS: Advisory Board: Genentech, Biogen, Alexion, Celgene, Greenwich Biosciences, TG Therapeutics. Consulting: Octave Bioscience. Non-promotional speaking: EMD Serono. Research support: Bristol Myers Squibb. Trainee funding: Biogen. Contracted Research: Sanofi, Biogen, Novartis, Actelion, Genentech/Roche. Expert witness testimony., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Morbidity and mortality associated with bereavement is an important public health issue, yet economic and resource investments to effectively implement and sustain integrated bereavement services are sorely lacking at national and global levels. Although bereavement support is a component of palliative care provision, continuity of care for bereaved individuals is often not standard practice in palliative and end-of-life contexts. In addition to potentially provoking feelings of abandonment, failure to extend family-centred care after a patient's death can leave bereaved families without access to crucial psychosocial support and at risk for illnesses that exacerbate the already substantial public health toll of interpersonal loss. The effect of inadequate bereavement care disproportionately disadvantages vulnerable groups, including those living in resource-constrained settings. We build on available evidence and previous recommendations to propose a model for transitional care, firmly establishing bereavement care services within health-care institutions, while respecting their finite resources and the need to ultimately transition grieving families to supports within their communities. Key to the transitional bereavement care model is the bolstering of community-based supports through development of compassionate communities and upskilling of professional services for those with more substantial bereavement support needs. To achieve this goal, interprofessional health workers, institutions, and systems must shift bereavement care from an afterthought to a public health priority., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2024 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

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., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s), 2024.)

Background: Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood., Objectives: To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care., Methods: A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text., Results: After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers., Conclusions: Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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., Competing Interests: The authors declare that there is no conflict of interest. Ethical approval precludes the data being used for another purpose or being provided to researchers who have not signed the appropriate confidentiality agreement. Specifically, the ethical approval specifies that all results are in aggregate form to maintain confidentiality and privacy and precludes individual level data being made publicly available. All aggregate data for this study are freely available and included in the paper. Interested and qualified researchers may send requests for additional data to Samar Aoun at samar.aoun@perron.uwa.edu.au, (© The Author(s), 2023.)

Bereavement, a specific kind of grief in response to a death, has been embedded in human history, in cultural patterns, with ritual, ceremony, and community kindness being the mainstay of grief support. The advent of professionalised grief counselling has seen the increasing domination of professional support as the best way to support someone bereaved, with a consequent loss of the varied forms of community support. The availability of professional grief counselling is limited, with only a small percentage of bereaved people accessing it or needing to access it. In this article, we argue for a realignment of professional grief services, strengthening community actions, and reorientation of health care in keeping with the Ottawa Charter for Health Promotion. Community sources of grief support are being reinvented in multiple ways. Professional services can develop links and relationships with these communities of support. A population-based public health approach to bereavement care is needed. This can only be achieved through communities and professionals working together. This partnership working underlines three implications for practice. These are (I) love and friendship must be the bedrock of support for grief and loss and the strengthening of these supports should be the priority for all therapeutic and social actions, (II) the multiple and varied community and civic sector sources of grief support should be the mainstay of the bereaved, and (III) bereavement professionals should work in the context of community, linking their clients with sustainable community supports.

Although the progressive clinical trajectory of motor neurone disease (MND) is widely understood, multiple challenges remain preventing optimal end-of-life care for this population with unique needs from the patient, carer and service provider perspectives. This paper reports on the experiences, gaps in service and unmet needs of MND patients and family carers and explores public health palliative care approaches that would facilitate coordinated and integrated care to respond to their changing needs. This is a qualitative study of responses to questions in an online consumer survey (353 respondents) in Western Australia (2020), focusing on a subset of 29 current and bereaved carers of people with MND who have used health services in the last five years. The analysis identified themes, highlighting the insufficient integration of services across health and social care; poor and unequal access to coordinated palliative care; significant gaps in the knowledge base of the workforce and a failure to meet the consumer expectations of person-centred care. For palliative care to be accessible to those living with MND and other under-served conditions, there needs to be a shift to more comprehensive, inclusive and sustainable options, such as the public health approach to palliative/end-of-life care that engages the assets of local communities in partnership with health services, one example being the "Compassionate Communities Connectors" model of care. Further considerations include advocacy for policy changes, fostering partnerships and developing indicators for evaluating the impact of the proposed models of care. The end result is not only better care but substantial savings for the health system.

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., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (© The Author(s), 2023.)

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.

Background: Receiving a diagnosis of multiple sclerosis (MS) can be stressful; later, patients may conceal their diagnosis. Here, we aimed to (1) assess prevalence of disclosure and concealment behaviors, and (2) explore whether diagnosis experience is associated with later concealment and if MS provider engagement on this topic modifies concealment., Methods: In a survey-based study, MS patients completed DISCO-MS assessing disclosure and concealment and responded to questions about diagnosis experience and practitioner attention to disclosure. Frequency analysis and Pearson's correlations were used in exploratory analyses., Results: 428 adults with MS participated. 49% (N = 201) conceal their diagnosis. Higher education [t(405) = 3.66, p < 0.001], younger age (r = -0.15, p = 0.002), and shorter disease duration (r = -0.18, p = 0.010) were associated with higher concealment. 39% (N = 159) anticipate negative consequences of disclosure. Individuals reporting positive diagnosis experience (26%, N = 102) were less likely to conceal later in disease course compared to those with negative experience (34%, N = 136) [t(233) = 2.483, p = 0.014]. Patients whose MS providers discussed disclosure (23%, N = 73) anticipated less negative consequences of disclosure [t(323) = 2.475, p = 0.014]., Conclusions: Diagnosis concealment is common in MS. Favorable diagnosis experience and provider attention to the topic of disclosure throughout the MS disease course may influence diagnosis concealment., Competing Interests: Declaration of Competing Interest VML: Advisory Board: Biogen. Non-promotional speaker: Novartis. Compensation for reviewing: National Institutes of Health, Department of Defense. Chief Scientific Officer and cofounder of eSupport Health, PBC. AMK: Nothing to disclose. SMW: Nothing to disclose. RTS: Consulting: Octave Bioscience. Compensation for reviewing: American Medical Association, National Institutes of Health, Department of Defense, Emerson Collective. HS: Nothing to disclose. SMA: Nothing to disclose. AS: Advisory Board: Almirall, Merck. Speaking: Biogen, Merck, Teva. AJS: Advisory Board: Genentech, Biogen, Alexion, Celgene, Greenwich Biosciences, Horizon Therapeutics, TG Therapeutics. Consulting: Octave Bioscience. Non-promotional speaking: EMD Serono. Research support: Bristol Myers Squibb. Trainee funding: Biogen. Contracted Research: Sanofi, Biogen, Novartis, Actelion, Genentech/Roche. Expert witness testimony. Funding was provided by the University of Vermont Multiple Sclerosis Center., (Copyright © 2022 Elsevier B.V. All rights reserved.)

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., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Ethical approval precludes the data being used for another purpose or being provided to researchers who have not signed the appropriate confidentiality agreement. Specifically, the ethical approval specifies that all results are in aggregate form to maintain confidentiality and privacy and precludes individual level data being made publicly available. All aggregate data for this study are freely available and included in the paper. Interested and qualified researchers may send requests for additional data to Samar Aoun at samar.aoun@perron.uwa.edu.au., (© The Author(s) 2022.)

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., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Ethical approval precludes the data being used for another purpose or being provided to researchers who have not signed the appropriate confidentiality agreement. Specifically, the ethical approval specifies that all results are in aggregate form to maintain confidentiality and privacy and precludes individual level data being made publicly available. All aggregate data for this study are freely available and included in the article. Interested and qualified researchers may send requests for additional data to Samar Aoun at samar.aoun@perron.uwa.edu.au., (© The Author(s) 2022.)

Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of their child's illness, goals of care, and what mattered most to their child from the parent's perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.

Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents., Methods: The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken., Results: All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs., Conclusions: Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.

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.

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.

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.

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.

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., Competing Interests: Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (© The Author(s), 2021.)

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., Competing Interests: Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship, and publication of this article., (© The Author(s), 2021.)

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.

Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs., Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs., Design: A scoping review., Data Sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF)., Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs., Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

Background: Interviews are a common method of data collection in palliative care research because they facilitate the gathering of rich, experiential data that are important for theory and practice. What is less clear is the extent to which those interviewed are representative of the larger group. Objective: The aim of this study was to determine if family caregivers who volunteer to be interviewed were similar or different to those who do not. Design: This study used data from the Caregiving and Bereavement study, a prospective, longitudinal mixed-methods study of family caregivers' general health, quality of life, and grief. Setting/Subjects: The 16 caregivers who volunteered to be interviewed were compared to the 20 who did not. Measurements: Comparisons were made in terms of the caregivers' demographic characteristics as well as measures of their quality of life, general health, general grief, and caregiver prolonged grief (i.e., before death). Results: Compared to caregivers who did not volunteer for an interview, those who volunteered were significantly older and reported less caregiver prolonged grief. Logistic regression showed that for each 1-unit increase in the caregiver prolonged grief score, individuals were 13% less likely to agree to an interview. Conclusions: Research findings based upon family caregivers who volunteer for research interviews might not provide a full picture of their experiences and needs. Researchers are encouraged to consider strategies that sample broadly and promote the participation of the full range of family caregivers in research to address the neglected areas of pre- and postdeath bereavement care.

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., Competing Interests: Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2020.)

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.

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., Competing Interests: Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s), 2020.)

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., Competing Interests: Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s), 2020.)

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., Competing Interests: Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s), 2020.)

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.

Background: The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge. The Further Enabling Care at Home (FECH) program was developed as a nursing outreach intervention designed to systematically address support needs of family caregivers of older people after hospital discharge to sustain their home-based caregiving. The objective of this study was to explore the experiences of informal caregivers who participated in the FECH program after an older family member's discharge from hospital., Methods: The study employed a qualitative descriptive design. Caregivers of older people discharged home from a Medical Assessment Unit in an Australian hospital who were included in the program were interviewed to explore their experiences and perceptions of the FECH program. Data were audio-recorded, transcribed, and subjected to thematic analysis., Results: Twenty-one family caregivers (81% female, aged 25-89 years) participated in the interviews. Themes emerging were 'The experience of caregiving'; 'The experience of receiving FECH program support'; and 'Caregivers' suggestions for improvement'. Caregivers indicated that reflective discussions with the FECH nurse enabled them to recognise the complexity of the caregiving role and determine aspects where they needed support. Caregivers valued guidance from the FECH nurse in accessing information and resources, which helped them to feel more connected to support, more prepared to care for the older person and themselves, and more secure in the caregiving role., Conclusions: Caregivers' experiences indicated that the structured reflective FECH discussions prompted thought and provided guidance in navigating health and care systems. The FECH program appears to offer a means to address the practical, physical and psychosocial needs of informal caregivers as partners in person-centred health and social care., Trial Registration: ANZCTR Trial ID: ACTRN126140011746773 .

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., Competing Interests: The authors have declared that no competing interests exist.

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.

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.

There is lack of a suitable assessment tool that can be used routinely and systematically by hospital staff to address family caregivers' (FCs') support needs. This paper describes a novel approach to identifying and addressing FCs' needs following hospital discharge of the older person receiving care., Setting and Participants: FC recruitment occurred on the patient's discharge from a tertiary hospital in Western Australia; 64 completed the study; 80% were female; mean age 63.2 years., Intervention: The Further Enabling Care at Home (FECH) programme was delivered over the telephone by a specially trained nurse and included: support to facilitate understanding of the patient's discharge letter; caregiver support needs assessment and prioritisation of urgent needs; and collaborative guidance, from the nurse, regarding accessing supports., Results: Sixty-four FCs completed the FECH programme. The top three support needs identified by the FCs were: knowing what to expect in the future (52%), knowing who to contact if they were concerned (52%) and practical help in the home (36%). The telephone-based outreach service worked well and was convenient for the nurse and the FCs, and saved on transport, time and money. Most of the FCs appreciated the systematic approach to identify and articulate their needs and were satisfied with the support they received, mainly navigation through the systems, problem solving, self-care strategies, explanation of illness, symptoms and medication and access to after-hours services., Conclusions: In order to guide services which may consider adopting this systematic approach to supporting FCs and integrating it into their routine practice, this evaluation of the FECH programme has described the processes implemented and highlighted the factors that hindered or facilitated these processes to engage caregivers with appropriate services in a timely manner. Positive feedback indicated that the programme was a useful addition to hospital discharge planning., Trial Registration Number: ACTRN12614001174673; Results., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Aims: To determine who provides bereavement support in the community, what sources are perceived to be the most or least helpful and for what reason, and to identify the empirical elements for optimal support in developing any future compassionate communities approach in palliative care., Design: A population-based cross-sectional investigation of bereavement experiences. Sources of support (informal, community and professional) were categorised according to the Public Health Model of Bereavement Support; most helpful reasons were categorised using the Social Provisions Scale, and least helpful were analysed using inductive content analysis., Setting and Participants: Bereaved people were recruited from databases of funeral providers in Australia via an anonymous postal survey (2013-2014)., Results: In total, 678 bereaved people responded to the survey. The most frequently used sources of support were in the informal category such as family, friends and funeral providers. While the professional category sources were the least used, they had the highest proportions of perceived unhelpfulness whereas the lowest proportions of unhelpfulness were in the informal category. The functional types of helpful support were Attachment, Reliable Alliance, Social Integration and Guidance. The five themes for least helpful support were: Insensitivity, Absence of Anticipated Support, Poor Advice, Lack of Empathy and Systemic Hindrance., Conclusion: A public health approach, as exemplified by compassionate communities policies and practices, should be adopted to support the majority of bereaved people as much of this support is already provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. This study has provided further support for the need to strengthen the compassionate communities approach, not only for end of life care for dying patients but also along the continuum of bereavement support.

Background: Although patients experience radiation proctitis post radiotherapy no internationally tested instruments exist to measure these symptoms. This Phase IV study tested the scale structure, reliability and validity and cross-cultural applicability of the EORTC proctitis module (QLQ-PRT23) in patients who were receiving pelvic radiotherapy., Methods: Patients (n = 358) from six countries completed the EORTC QLQ-C30, QLQ-PRT23 and EORTC Quality of Life Group debriefing questions. Clinicians completed the EORTC Radiation Therapy Oncology Group scale. Questionnaires were completed at four time-points. The module's scale structure was examined and validated using standard psychometric analysis techniques., Results: Three items were dropped from the module (QLQ-PRT23 → QLQ-PRT20). Factor analysis identified five factors in the module: bowel control; bloating and gas; emotional function/lifestyle; pain; and leakage. Inter-item correlations were within r = 0.3-0.7. Test-Retest reliability was high. All multi-item scales discriminated between patients showing symptoms and those without symptomology. The module discriminated symptoms from the clinician completed scoring and for age, gender and comorbidities., Conclusion: The EORTC QLQ-PRT20 is designed to be used in addition to the EORTC QLQ-C30 to measure quality of life in patients who receive pelvic radiotherapy. The EORTC QLQ-PRT20 is quick to complete, acceptable to patients, has good content validity and high reliability., Trial Registration: Australian and New Zealand Clinical Trials Registry (ANZCTR) ACTRN12609000972224 .

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., (© 2018 John Wiley & Sons Ltd.)

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., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern., Objectives: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care., Methods: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research., Results: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements., Conclusions: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas.

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., (© 2018 John Wiley & Sons Ltd.)

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., (Copyright © 2018 Elsevier B.V. All rights reserved.)

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., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)