Motor neurone disease: A point-prevalence study of patient reported symptom prevalence, severity and palliative care needs.

BACKGROUND: Motor neurone disease is a rare but debilitating illness with incomplete evidence regarding patients' symptom burden. Palliative care and generalist clinicians are often in-experienced in caring for these patients and assessing their needs. AIM: To identify the symptom prevalence and severity experienced by patients with motor neurone disease. Secondary objectives were to examine differences in symptom burden and clusters according to phenotype, functional status, palliative care provision and those in their last months of life. DESIGN: A point prevalence study assessing patient-reported symptoms using a modified IPOS-Neuro assessment tool, incorporating 41 symptom items. SETTING/PARTICIPANTS: Patients with motor neurone disease attending the State-wide Progressive Neurological Disease Service or inpatient unit at Calvary Health Care Bethlehem, Melbourne Australia, from March to December 2021. RESULTS: A total of 102 patients participated, the majority diagnosed with lumber-onset (30.4%), bulbar-onset (28.4%) and cervical-onset (25.5%) phenotypes. Patients experienced a median of 17 symptoms (range 2-32) with a median of 3 symptoms rated as severe/overwhelming (range 0-13). Motor and functional symptoms predominated, with differences in symptom clusters present according to phenotype. Patients had a higher number of severe/overwhelming symptoms if they were accessing palliative care services (p = 0.005), in their last 6 months of life (p = 0.003) and experiencing moderate or severe functional impairment (p < 0.001). CONCLUSIONS: Patients with motor neurone disease report high symptom burden. A validated motor neurone disease-specific symptom assessment tool is needed to accurately assess patients, including important variations in symptom clusters according to phenotype. Further research must focus on evidence-based treatment guidelines for symptoms experienced commonly and severely.

Development and initial test of the self-report grief and bereavement assessment.

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.

Healthcare choices following mild traumatic brain injury in Australia.

BACKGROUND: Accurate data on the types of healthcare people seek in the early stages following mild traumatic brain injury (mTBI) in Australia is lacking. We sought to investigate the types of healthcare people seek following mTBI, including seeking no care at all; ascertain the demographic, pre- and peri-injury factors, and symptom characteristics associated with the care that people access; and examine whether choice of care is associated with symptomatic recovery and quality of life. METHODS: An online retrospective survey of Australians aged 18 to 65 years who had experienced a self-reported 'concussion' (mTBI) within the previous 18 months. Types of healthcare accessed were investigated, as well as those who did not seek any care. Data were analysed using frequency and percentages, chi-squared tests and logistic regression models. RESULTS: A total of 201 respondents had experienced a self-reported 'concussion' but 21.4% of the respondents did not seek any care. Of the 183 respondents who sought healthcare, 52.5% attended a hospital Emergency Department, 41.0% attended a general practitioner and 6.6% accessed sports-based care. Compared to their counterparts, those who had a lower level of education (p = 0.001), had experienced previous mTBI (p = 0.045) or previous mental health issues (p = 0.009) were less likely to seek healthcare, whilst those who had experienced loss of consciousness (p = 0.014), anterograde (p = 0.044) or retrograde (p = 0.009) amnesia, and symptoms including drowsiness (p = 0.005), nausea (p = 0.040), and feeling slow (p = 0.031) were more likely to seek care. Those who did not seek care were more likely to recover within one month (AOR 4.90, 95%CI 1.51 - 15.89, p = 0.008), albeit the relatively large 95%CI warrants careful interpretation. Compared to seeking care, not seeking care was not found to be significantly associated with symptom resolution nor quality of life (p > 0.05). CONCLUSIONS: This study provides unique insight into factors associated with healthcare utilisation in the early stages following mTBI, as well as outcomes associated with choice of care, including not seeking care. Delivering targeted community education on the signs and symptoms of mTBI, and the advantages of seeking care following injury is an important step forward in the management of this challenging condition.

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review.

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.

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

Although considerable research efforts have focused on bereavement outcomes following loss, there are few studies which address the role of memorialization, particularly as it relates to formal service provision. Currently the funeral, cemetery, and crematorium industries are observing a steady decline in traditional and formal memorialization practices. This study aims to identify current memorialization practices and emerging trends, highlight key priorities for improving service outcomes for the bereaved, and understand the implications of changing consumer preferences for service provision. The study's qualitative research design incorporates two phases, a scoping literature review followed by in-depth interviews with eight service providers from the funeral, cemetery, and crematorium industries. A key finding is that the trend toward contemporary and informal memorialization practices blurs the lines between the role of consumers and service providers. There is a clear opportunity for service providers to engage in community education as a means of building supportive relationships with and improving service outcomes for the bereaved.

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

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

Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study.

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.

The resource-based reflective risk assessment model for understanding the quality of work life of nurses.

BACKGROUND: There is a need to examine the psychological traits that impact the "personal quality of life" and "personal well-being" of caregivers in the workplace. PURPOSE: This research proposes the resource-based reflective risk assessment model using a "at risk" framework to integrate mental health traits, producing a "portrait" of nursing quality of life and well-being. METHODS: Cross-sectional surveys on the quality of work life of nurses in Australia and Mexico were used to collect data. FINDINGS: Significant differences based on the ProQOL "at-risk" categories were found in all the 10 constructs with a similar pattern between the 2 countries. The proposed model was shown to be a useful framework for integrating mental health constructs that have a "draining" and "gaining" effect on nurses' well-being. DISCUSSION: The proposed model provides framework for understanding nursing well-being as well an integrating structure to add additional constructs to construct a comprehensive portrait of nurses' quality work life and personal well-being.

The cost-effectiveness of a telephone-based intervention to support caregivers of older people discharged from hospital.

BACKGROUND: A telephone intervention for caregivers of older people discharged from hospital was shown to improve preparedness to care, reduce caregiver strain and caregiver distress. No cost-effectiveness analysis has been published on this, or similar interventions. The study aims addressed here were to examine whether positive outcomes for caregivers resulting from the Further Enabling Care at Home (FECH) program changed the use and costs of health services by patients; and to assess cost-effectiveness. METHODS: A single-blind randomised controlled trial compared FECH to usual care. FECH involved a specially trained nurse addressing support needs of caregivers of older patients discharged from hospital. A minimum clinically important difference in preparedness to care was defined as an increase in Preparedness for Caregiving scale score of ≥ two points from baseline. Designated data collection was at: Time 1, within four days of discharge; Time 2, 15-21 days post-discharge; and Time 3, six weeks post-discharge. A last observation carried forward approach to loss to follow-up was used, with a sensitivity analysis including only those who completed all time points. Patient use of hospital, emergency department (ED) and ambulance services were captured for 12 weeks post-discharge using administrative data. Costs included nurse time supporting caregivers, resources used by the nurse, and time taken training the nurse to deliver FECH. Cost-effectiveness was assessed using decision trees for preparedness for caregiving. RESULTS: Sixty-two intervention dyads and 79 controls provided complete data. A significantly greater proportion of intervention group caregivers reported improved preparedness to care to Time 2 (36.4% v 20.9%, p = 0.029), though this was not sustained to Time 3. The intervention cost $AUD268.28 above usual care per caregiver. No significant differences were observed in health service use between groups. The incremental cost-effectiveness ratio for each additional caregiver reporting improved preparedness to care at Time 2 was $AUD1,730.84. CONCLUSIONS: To our knowledge this is the first work to calculate the cost-effectiveness of a telephone-delivered intervention designed to support caregivers of older people post-discharge, and will support decision-making regarding implementation. Further research should examine different settings, and assess impacts on health service use with larger samples and a longer follow-up. TRIAL REGISTRATION: Australian and New Zealand Clinical Trial Registry: ACTRN12614001174673 . Registered 07/11/2014.

Caregivers' experiences of a home support program after the hospital discharge of an older family member: a qualitative analysis.

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 .

How religious and spiritual beliefs explain prolonged grief disorder symptoms.

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.

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

This is the first study to explore bereaved individuals' experiences of funeral service providers using these services' databases. A total of 839 Australians participated in a postal survey, 6-24 months into their bereavement. Funeral providers were reported to be the third most prevalent form of bereavement support after friends and family. Analysis found six themes related to perceived helpful or unhelpful support: instrumental support, professionalism, informational support, financial tension, communication, and emotional support. Funeral providers could improve their support by adopting a proactive approach to bereavement needs and offering personalized and ongoing support. We develop these suggestions by exploring their potential contributions to building community capacity around death, dying and bereavement.

Unmet supportive care needs among Indigenous cancer patients across Australia.

INTRODUCTION: Indigenous Australians with cancer tend to be diagnosed with more aggressive and advanced-stage disease, receive less treatment, have poorer survival and lower quality of life than other Australians. Reducing these inequalities requires an understanding of the supportive care needs of this cancer group. This study aims to describe the type and extent of unmet supportive care needs of Indigenous Australian cancer patients. METHOD: A multicentre, cross-sectional study recruited 145 Indigenous adults diagnosed with cancer in the previous 5 years in four Australian states and territories. Using a culturally specific tool, unmet needs were assessed in four domains: 'physical and psychological', 'hospital care', 'information and communication' and 'practical and cultural'. Moderate to high unmet need is that which requires some or a lot more help to be addressed. RESULTS: Two-thirds (65%) of patients reported at least one moderate to high unmet need and 20% of patients had moderate to high unmet needs with five or more items. Overall, patients most commonly reported moderate to high unmet needs in the physical/psychological (46%) and practical/cultural domains (34%), than the information/communication (23%) and hospital care domains (16%). More specifically, 'money worries' was the most frequently reported moderate to high unmet need (20%). CONCLUSION: Most Indigenous Australians living with cancer experience unmet supportive care needs. Physical/psychological and practical/cultural concerns were identified as priority areas for Indigenous cancer patients. These findings may inform priority areas for intervention towards optimal care pathways for Indigenous Australians diagnosed and living with cancer.

What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach.

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.

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review.

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.

Differences in meanings made according to prolonged grief symptomatology.

This study investigated differences in specific meanings made following bereavement, according to participants' prolonged grief symptomatology. A survey of 580 bereaved adults (Mage = 61.6 years, 70.7% female) showed 13 meanings predicted symptomatology, with the largest differences between the two lower symptomatology groups and the high symptomatology group; the latter was more likely to report no meaning. The results provide further support for empirically distinct groups within the bereaved population, not only in terms of symptoms, etiology, outcomes, courses, and treatment responses, but also in their meanings made, and may assist in advancing meaning reconstruction interventions.

A critical enquiry into the psychometric properties of the professional quality of life scale (ProQol-5) instrument.

AIM: This study had conducted a comprehensive analysis of the psychometric properties of Proqol 5, professional quality of work instrument among nurses and palliative care-workers on the basis of three independent datasets. The goal is to see the general applicability of this instrument across multiple populations. BACKGROUND: Although the Proqol scale has been widely adopted, there are few attempts that have thoroughly analyzed this instrument across multiple datasets using multiple populations. METHODS: A questionnaire was developed and distributed to palliative care-workers in Canada and Nurses at two hospitals in Australia and Canada, this resulted in 273 datasets from the Australian and 303 datasets from the Canadian nurses and 503 datasets from the Canadian palliative care-workers. A comprehensive psychometric property analysis was conducted including inter-item correlations, tests of reliability, and both convergent and discriminant validity as well as construct validity analyses. In addition, to test for the reverse coding artifacts in the BO scale, exploratory factor analysis was adopted. RESULTS: The psychometric property analysis of Proqol 5 was satisfactory for the compassion satisfaction construct. However, there are concerns with respect to the burnout and secondary trauma stress scales and recommendations are made regarding the coding and specific items which should improve the reliability and validity of these scales. CONCLUSION: This research establishes the strengths and weaknesses of the Proqol instrument and demonstrates how it can be improved. Through specific recommendations, the academic community is invited to revise the burnout and secondary traumatic stress scales in an effort to improve Proqol 5 measures.

Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool.

OBJECTIVE: 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 the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. METHOD: The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6-8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. RESULTS: A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as "knowing what to expect in the future," "knowing who to contact if concerned," and "equipment to help care." The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. SIGNIFICANCE OF RESULTS: The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.

Challenges during long-term follow-up of ICU patients with and without chronic disease.

INTRODUCTION: Reflecting on researchers' experiences during follow-up of patients enrolled in research may lead to improved understanding of the challenges faced in maintaining contact when patients leave hospital. AIMS: (1) Describe the challenges researchers face when following-up patients who survive ICU. (2) Identify issues that influenced our ability to follow-up patients. METHODS: This sub-study was part of a larger "case-control" study investigating the quality of life of ICU survivors with and without pre-existing chronic disease. Patients completed self-assessment QLQ and symptom assessment before hospital discharge and at six months, plus they were asked to keep a paper diary of healthcare services used. Patient contact was maintained by monthly telephone calls. Each telephone call was logged and summaries of conversations documented. Our experience of conducting the study was reviewed by the identification of common issues which arose from the follow-up of patients. RESULTS: Thirty patients with a history of chronic disease and 30 patients without underlying chronic disease were followed-up. A total of 582 telephone calls were made for 60 patients discharged from hospital of which 261 (45%) calls led to a telephone interview. Only 19 (30%) of diaries were completed and returned. We identified six challenges associated with issues that arose from the follow-up of patients. CONCLUSION: We underestimated the number of telephone calls required for follow-up after discharge. Diaries were unreliable sources of data suggesting strategies are needed to improve compliance. How patients respond to follow-up is not always predictable. Processes are needed to deal with unexpected information provided during telephone follow-up.

Supporting palliative care clients who live alone: Nurses' perspectives on improving quality of care.

BACKGROUND: Terminally ilL people who live alone at home are disadvantaged in terms of their places of care and death and health outcomes. There is a need to trial models of care that can extend the period of care at home for as long as possible for this group. The objective was to explore the experiences of nurses providing care to terminally ill clients who live at home alone and who were receiving either additional care aide support or a personal alarm through an RCT. METHODS: Nine nurses in a home-based palliative care service in Western Australia completed a questionnaire (82% response rate). FINDINGS: Client willingness to accept additional support from care aides, development of rapport between the client and care staff, and willingness to use the alarm appropriately all influenced the effectiveness of the models of care. These models of care may negate the need for frequent nurses' visits when nurses feeL confident that the care aide can pass on relevant information or that the client will use the alarm when required. CONCLUSIONS: Both models of care assisted in meeting the challenges to care provision; however, further larger trials are needed to test whether these might translate into granting clients their wishes regarding places of terminal care and death. This study is the first account of nurses' perspectives on service provision to support palliative care clients who live alone. It has prompted changes in practice and will inform service planning for this growing and challenging population group.