Search

Background: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of this pilot study was to assess the feasibility and relevance of the Carers' Alert Thermometer (CAT) in home-based care, from the perspective of MND family caregivers. The tool provides a formal structure to facilitate discussions with caregivers to enable needs to be addressed. Methods: This mixed-method study was conducted in Western Australia (2020–2021). Forty-one caregivers and five MND Advisors participated in trialling the CAT intervention which consisted of two encounters with Advisors (6–8 weeks apart) to identify and address support needs through action plans. Caregivers' feedback was obtained via telephone interviews and a thematic analysis was undertaken. Results: Thirty caregivers completed two CAT assessments. Caregivers identified support priorities of managing their feelings and worries, providing emotional or spiritual care, information about the person's condition and how their care needs might change. Seventeen caregivers were interviewed and found that this assessment process adequately addressed their needs and it should be continued, it brought the focus onto them to clarify problems and work through solutions. The improvements that were suggested by them, including better information/education in palliative care, led to the development of an online support/information toolkit, which served to empower caregivers and staff by accessing relevant information and resources. Conclusions: The CAT demonstrated utility for triaging caregivers most in need of additional support and those whom signposting to additional information and self-directed access to support was most appropriate. For any tool to become an integrated part of care, service provider support is key for implementation, allowing for the time resource required and an appropriate education and support structure. MND Associations have an important role in building stronger partnerships with supportive community networks, through compassionate communities models of care, to address the identified needs of MND families in a more sustainable and wholistic manner. Needs assessment is a means towards building this capacity between formal and informal networks. [ABSTRACT FROM AUTHOR]

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

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

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. [ABSTRACT FROM AUTHOR]

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

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

Background: 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. [ABSTRACT FROM AUTHOR]

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

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

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

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

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

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

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

Background: Development of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers. Methods/design: This is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire. Discussion: This detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families. Trial registration: ACTRN Trial Number: ACTRN12611000410954 [ABSTRACT FROM AUTHOR]

Background Hospital discharge of older people receiving care at home offers a salient opportunity to identify and address their family caregivers’ self-identified support needs. Objectives This study tested the hypothesis that the extent to which family caregivers of older people discharged home from hospital felt prepared to provide care at home would be positively influenced by their inclusion in the new Further Enabling Care at Home program. Design This single-blind randomised controlled trial compared outcomes from usual care alone with those from usual care plus the new program. The program, delivered by a specially trained nurse over the telephone, included: support to facilitate understanding of the patient’s discharge letter; caregiver support needs assessment; caregiver prioritisation of urgent needs; and collaborative guidance, from the nurse, regarding accessing supports. Setting and participants Dyads were recruited from the medical assessment unit of a Western Australian metropolitan public hospital. Each dyad comprised a patient aged 70 years or older plus an English speaking family caregiver. Methods The primary outcome was the caregiver’s self-reported preparedness to provide care for the patient. Data collection time points were designated as: Time 1, within four days of discharge; Time 2, 15–21 days after discharge; Time 3, six weeks after discharge. Other measures included caregivers’ ratings of: their health, patients’ symptoms and independence, caregiver strain, family well-being, caregiver stress, and positive appraisals of caregiving. Data were collected by telephone. Results Complete data sets were obtained from 62 intervention group caregivers and 79 controls. Groups were equivalent at baseline. Needs prioritised most often by caregivers were: to know whom to contact and what to expect in the future and to access practical help at home. Support guidance included how to: access help, information, and resources; develop crisis plans; obtain referrals and services; and organise legal requirements. Compared to controls, preparedness to care improved in the intervention group from Time 1 to Time 2 (effect size = 0.52; p = 0.006) and from Time 1 to Time 3 (effect size = 0.43; p = 0.019). These improvements corresponded to a change of approximately 2 points on the Preparedness for Caregiving instrument. Small but significant positive impacts were also observed in other outcomes, including caregiver strain. Conclusions These unequivocal findings provide a basis for considering the Furthering Enabling Care at Home program’s implementation in this and other similar settings. Further testing is required to determine the generalisability of results. [ABSTRACT FROM AUTHOR]