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Importance: Informal caregivers who provide home-based care frequently experience stress and burden that adversely affect their health-related quality of life (HRQOL)., Objective: To evaluate the efficacy of the Further Enabling Care at Home (FECH+) program for the HRQOL of caregivers of older adults discharged home from the hospital., Design, Setting, and Participants: This multicenter, parallel, 2-group randomized clinical trial, with blinded baseline and outcome measurements, was conducted at 3 hospitals in 2 states in Australia. Recruitment took place between August 2020 and July 2022, and follow-up was performed for 12 months after hospital discharge. Participants were dyads of caregivers and patients. Eligible caregivers were aged 18 years or older who provided informal home-based care at least weekly for a patient aged 70 years or older. Caregivers were enrolled when their patient was discharged from the hospital. Dyads were randomly assigned to either the intervention or control group. Data analysis followed an intention-to-treat approach., Intervention: Caregivers in the intervention group received the FECH+ program, structured nurse support of 6 telephone calls over 6 months after the patient's discharge plus usual discharge care. Caregivers in the control group received usual care alone., Main Outcomes and Measures: Primary outcome was caregivers' HRQOL 6 months after discharge, which was measured using the Assessment of Quality of Life 8-Dimension (AQOL-8D). Secondary outcomes were caregivers' HRQOL 12 months after discharge as well as preparedness to care (measured using the Preparedness for Caregiving Scale), self-efficacy (measured using the Caregiver Inventory), and levels of strain and distress (measured using the Family Appraisal of Caregiving Questionnaire) at 6 and 12 months after discharge. Baseline and outcome measurements were administered by telephone at 3, 6, and 12 months after discharge., Results: A total of 547 dyads (caregivers: 405 females [74.0%], mean [SD] age, 64.50 [12.82] years; patients: 296 females [54.1%], mean [SD] age, 83.16 [7.04] years for the intervention group and 83.45 [7.20] years for the control group) were included in the intention-to-treat analysis. There was no significant difference in caregivers' HRQOL between the 2 groups at the primary time point of 6 months (difference in AQOL-8D score, 0.01; 95% CI, -0.02 to 0.03; P = .62) after hospital discharge., Conclusions and Relevance: In this randomized clinical trial, the FECH+ program-a nurse telephone support intervention for caregivers of older adults after hospital discharge-did not significantly improve caregivers' HRQOL at 6 months after discharge compared with usual care. Additional examination is warranted into improving caregivers' HRQOL at the time of their patient's hospital discharge., Trial Registration: Australian New Zealand Clinical Trials Registry Identifier: ACTRN12620000060943.

Background and Objective: Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention on families' quality of life., Methods: A pilot-phase, single-blinded, intent-to-treat, randomized controlled clinical trial enrolled families from 1 pediatric quaternary hospital between 2021 and 2023. Intervention families received 3 weekly 60-minute (FACE-Rare pACP) sessions: (1) Carer Support Needs Assessment Tool or Action Plan, (2) Carer Support Needs Assessment Tol Action Plan Review, and (3) Pediatric Next Steps: Respecting Choices pACP. Controls received treatment as usual (TAU). Outcome measures were Beck Anxiety Inventory, Family Appraisal of Caregiving, Functional Assessment of Chronic Illness Therapy (FACIT)-Spirituality, and health care utilization. Generalized mixed effect models with γ response assessed the intervention effect at 3-month follow-up., Results: Children (n = 21) were aged 1 to 10 years, 48% male, 24% Black; and 100% technology dependent. Primary family caregivers (n = 21) were aged 30 to 43 years, 19% male, 19% Black; and 27% household income below the Federal poverty level. Dyads underwent 1:1 randomization: 9 to FACE-Rare and 12 to TAU. TAU caregivers reported statistically lower meaning and peace than FACE-Rare caregivers (0.9, P = .03, confidence interval [CI]: 0.75-0.99). Black caregivers reported significantly less caregiver distress (0.7, P = .04, CI: 0.47-0.98) than non-Black caregivers. Poor families reported more anxiety (3.5, P = .002, CI: 1.62-7.94), more caregiver strain (1.2, P = .006, CI: 1.07-1.42); and less family well-being (0.8, P = .02, CI: 0.64-0.95)., Conclusions: FACE®-Rare was feasible, acceptable, safe, and demonstrated initial efficacy, providing greater feelings of meaning and peace to caregivers. Poverty impacted well-being. A multisite trial is needed to determine generalizability., (Copyright © 2024 by the American Academy of Pediatrics.)

Objective: How an MND diagnosis is communicated has implications for how individuals adapt to their illness. The consultation process with the neurologist, diagnosis delivery, and adherence to UK guidelines, were explored from the perspectives of people diagnosed with MND and family caregivers., Methods: A cross-sectional approach with people with MND and their caregivers in UK. An anonymous online survey, based on the SPIKES protocol for delivering bad news and containing questions focusing on the UK NICE MND guideline, was distributed in 2018-19., Results: 69 people with MND and 39 caregivers responded. People with MND were more likely than caregivers to rate highly their neurologist's skills and ability and their satisfaction with delivery of the diagnosis. The amount of time spent with the neurologist at diagnosis had an impact on the level of satisfaction and rating of the neurologist's skills and abilities. The SPIKES criteria were generally not met. Many of the NICE MND guideline recommendations were not met, though adherence was greater in MND Centres., Conclusions: While there is evidence of satisfaction with the delivery of the diagnosis amongst people with MND and caregivers, there is room for improvement. There is a need for greater awareness of the requirements of people with MND and caregivers. There is also a need to raise awareness of the NICE MND guideline and ensure adequate training, time and funding to ensure communication at this difficult time is acceptable and effective. Where possible it would be preferable for referrals to be made to MND centres., (Copyright © 2022 The Authors. Published by Elsevier B.V. All rights reserved.)

Objective: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare))., Methods: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed., Results: Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial., Conclusions: FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care., Competing Interests: Competing interests: LB is the cocreator of the Respecting Choices Next Steps ACP intervention. She receives a small royalty., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: There are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers' health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers' health-related quality of life (HRQOL) after care recipients' hospital discharge., Methods and Analysis: A multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient's discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30-45 min telephone support sessions over 6 months. The primary outcome is caregivers' HRQOL measured using the Assessment of Quality of Life-eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements., Ethics and Dissemination: Participants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences., Trial Registration Number: ACTRN12620000060943., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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: 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: 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: 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 .

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.

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.)

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.)

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.)

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.)

Background: Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families., Objective: To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines., Design: An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014-15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not., Results: More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4-10%). The support for family caregivers before and after their relative's death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3-6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as "not personal" or "generic", or "just standard practice"., Conclusions: Timeliness and consistency of relationship is crucial to building rapport and trust in the service's ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre-bereavement period and developing community capacity and referral pathways for bereavement care. Our findings suggest that bereavement support in Australian palliative care services has only a tenuous relationship with guidelines and assessment tools, a conclusion also drawn in studies from other countries, emphasizing the international implications of our study.

Context: Despite international guidelines emphasizing consumer-directed care and autonomous decisions in research participation, there is a common myth that research can be an additional and unwanted burden on patients and their family members., Objectives: To examine the experiences and impact of research involvement on family caregivers (FCs) of terminally ill people, focusing within home-based palliative care., Methods: Three hundred sixteen of 322 participants (98.1%), who completed an FC support intervention through a stepped-wedge cluster trial (Australia, 2012-2015), participated in a postintervention telephone interview on their study experiences, which included quantitative and qualitative questions., Results: Ninety-seven percent of both the control (n = 89) and intervention (n = 227) groups perceived positive aspects, whereas almost all did not report any negative aspects of being involved in this research; the majority rated their involvement as very/extremely beneficial (control 77%; intervention 83%). The qualitative analysis generated three major themes: "intrapersonal-inward directed"; "connection with others-outward directed"; and "interpersonal-participant-researcher relationship.", Conclusions: This study provided quantitative and qualitative evidence challenging the myth. In contrast to health professional concerns, FCs appreciated the opportunity to participate and benefited from their involvement in research. Research protocols need to be specifically tailored to the needs of family caregivers and include debriefing opportunities for all participants at the end of intervention studies, regardless of which group they have been assigned. Strategies that facilitate health professionals' understanding of the research and risk benefits may help reduce gatekeeping and improve the validity of research findings., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Most bereaved people do not require specialist intervention, yet building community capacity in providing bereavement support is underdeveloped. While family caregivers indicate a need for more information about bereavement, there is little evidence to guide what this information might contain., Objective: The study's purpose was to inform bereavement support by determining the advice people bereaved through expected deaths in palliative care have for others in that situation., Design: Four funeral providers posted a questionnaire to previous clients who had used their services 6 to 24 months prior and 678 bereaved people responded., Setting/participants: The sample size for this study comprised 265 bereaved people whose relative used palliative care services., Measurements: The questionnaire comprised 82 questions about caregiving, bereavement support, current bereavement-related distress, and 2 open-ended questions concerning their bereavement, one of them on advice they have to other people in the same situation., Results: Family caregivers (n = 140) of people who received palliative care responded to the open-ended question about advice for others. An open content analysis yielded 3 themes-preparations for bereavement, utilizing social networks, and strategies for dealing with grief., Conclusions: Bereaved family caregivers' experiential knowledge can be harnessed to progress the development of bereavement care strategies for the good of the community. These responses could be incorporated into information brochures, posters, and other community education avenues in order to upskill palliative care bereavement volunteers and the wider community so that bereaved family caregivers are best supported.

Background: Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers' grief, loss or bereavement has not been examined., Objective: To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia., Inclusion Criteria Types of Participants: Family carers of older persons with dementia (>65 years)., Types of Interventions: Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death., Comparisons: No treatment, standard care or treatment as usual, or an alternative intervention., Types of Studies: Experimental and epidemiological study designs., Outcomes: Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments., Search Strategy: A three-step strategy sought to identify both published and unpublished studies from 1995., Methodological Quality: Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI)., Data Extraction: The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently., Data Synthesis: Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures., Results: Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple post-test quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer's disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief.Moderate benefits to anticipatory grief were evident upon completion of the "Easing the Way" intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers' cognitive skills, there were associated decreases in carers' normal grief (parameter estimate [PE] = -0.81, P = 0.02) and complicated grief (PE = -0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers' complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers' complicated grief (PE = -2.91, P = 0.04)., Conclusion: There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer's unique clinical presentation and combination of risk factors.Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers' complicated grief symptoms may be reduced.

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.

Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care., (Copyright © 2016 Elsevier B.V. All rights reserved.)

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, 15-21days 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., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Review Objective: The objective is to examine the existing evidence regarding the effectiveness of psychosocial interventions to assist grief pre- and post-bereavement for family carers of people with dementia residing in the community or in a health or social care facility., Review Question: What psychosocial interventions for family carers of people with dementia are most effective in reducing: (1) anticipatory grief, (2) post-death grief (bereavement), and (3) complicated grief?

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

Background: Systematic assessment of family caregivers' support needs and integrating these into service planning according to evidence-based research are vital to improving caregivers' outcomes and their capacity to provide care at end of life., Aim: To describe the experience with and feedback of nurses on implementing a systematic assessment of support needs with family caregivers in home-based palliative care, using the Carer Support Needs Assessment Tool., Methods: This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. Forty-four nurses who trialled the intervention with 233 family caregivers gave their feedback via surveys with closed- and open-ended questions (70.5% response rate). Analyses of quantitative and qualitative data were undertaken., Results: The feedback of nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice both from the family caregiver and service provider perspectives. Using the Carer Support Needs Assessment Tool was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and as identifying needs and service responses that would not otherwise have been undertaken in a timely manner., Conclusion: Our study has successfully addressed the call for alternatives to the professional assessment paradigm using the Carer Support Needs Assessment Tool approach as a caregiver-led intervention facilitated by health professionals. Integrating the Carer Support Needs Assessment Tool in existing practice is fundamental to achieving better caregiver outcomes., (© The Author(s) 2015.)

Background: Palliative care standards and policies recommend that bereavement support be provided to family caregivers, yet uncertainty surrounds whether support currently offered by palliative care services throughout developed countries meets caregiver needs. The public health model of bereavement support, which aligns bereavement support needs with intervention, may address this gap between policy and practice., Aim: The aim was to review the literature to identify bereavement risk assessment measures appropriate for different points in the caring and bereavement trajectories, evaluate their psychometric properties and assess feasibility for use in palliative care., Design: A scoping review was systematically undertaken following Arksey and O'Malley's methodological framework., Data Sources: PsycINFO, CINAHL, PubMed and Cochrane Reviews databases, as well as grey literature including Internet searches of Google, World Health Organization, CareSearch, the Grey Literature Report and OAIster were searched. Bereavement organisations and palliative care websites, reference lists in obtained articles and grief and bereavement handbooks were also scrutinised., Results: Of 3142 records screened, 356 records yielded 70 grief measures. In all, 19 measures published between 1982 and 2014 were identified for inclusion in this review, and categorised for use with family caregivers at three points in time - before the patient's death (n = 5), in the period following the death (n = 10) and for screening of prolonged or complex grief (n = 4). The majority had acceptable psychometric properties; feasibility for use in palliative care varied substantially., Conclusion: This review is an important preliminary step in improving the assessment of bereavement risk and, consequently, better bereavement outcomes for palliative care family caregivers., (© The Author(s) 2015.)

Background: Presentations to hospital of older people receiving family care at home incur substantial costs for patients, families, and the health care system, yet there can be positive carer outcomes when systematically assessing/addressing their support needs, and reductions in older people's returns to hospital attributed to appropriate discharge planning. This study will trial the Further Enabling Care at Home program, a 2-week telephone outreach initiative for family carers of older people returning home from hospital. Hypotheses are that the program will (a) better prepare families to sustain their caregiving role and (b) reduce patients' re-presentations/readmissions to hospital, and/or their length of stay; also that reduced health system costs attributable to the program will outweigh costs of its implementation., Methods/design: In this randomised controlled trial, family carers of older patients aged 70+ discharged from a Medical Assessment Unit in a Western Australian tertiary hospital, plus the patients themselves, will be recruited at discharge (N = 180 dyads). Carers will be randomly assigned (block allocation, assessors blinded) to receive usual care (control) or the new program (intervention). The primary outcome is the carer's self-reported preparedness for caregiving (Preparedness for Caregiving Scale administered within 4 days of discharge, 2-3 weeks post-discharge, 6 weeks post-discharge). To detect a clinically meaningful change of two points with 80 % power, 126 carers need to complete the study. Patients' returns to hospital and subsequent length of stay will be ascertained for a minimum of 3 months after the index admission. Regression analyses will be used to determine differences in carer and patient outcomes over time associated with the group (intervention or control). Data will be analysed using an Intention to Treat approach. A qualitative exploration will examine patients' and their family carers' experiences of the new program (interviews) and explore the hospital staff's perceptions (focus groups). Process evaluation will identify barriers to, and facilitators of, program implementation. A comprehensive economic evaluation will determine cost consequences., Discussion: This study investigates a novel approach to identifying and addressing family carers' needs following discharge from hospital of the older person receiving care. If successful, the program has potential to be incorporated into routine post-discharge support., Trial Registration: Australian and New Zealand Clinical Trial Registry: ACTRN12614001174673 .

Introduction: The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care., Aim: To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care., Methods: This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis., Results: The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced., Conclusion: Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers' needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of family caregivers., (© The Author(s) 2015.)

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

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.

Objective: This article describes the pilot testing of a community survey to ascertain the experiences and needs of people who were bereaved 6-24 months before the survey. The pilot study aimed to assess the feasibility and acceptability of the survey and test the theoretical public health model for bereavement support., Methods: A postal survey was used to collect information from clients of three funeral providers in Western Australia in 2012., Results: The findings confirmed the feasibility and acceptability of the survey questions. The analysis of the demographic characteristics, experience of bereavement and satisfaction with support revealed differential needs that align with the expectation of low, moderate and high risk, as articulated in the public health model., Conclusions: The data provided tentative empirical support for the public health model of bereavement support. This is the first empirical test of this model nationally and internationally., Implications: Considering the lack of evidence to guide development and allocation of bereavement programs in Australia, a larger survey will enable us to determine how the support needs of each of the three groups of bereaved people should be serviced. This is important for cost-effective and equitable resource allocation., (© 2014 Public Health Association of Australia.)

Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness., Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group., Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000-April 2011. Fifty-nine studies met the inclusion criteria., Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care., Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

Background: Motor Neurone Disease (MND) is a neurodegenerative disease with a sudden onset, a rapid progression, a profile of complex disabilities and fatal consequences. Caring for a person with MND is an unremitting commitment, yet little research has examined the experiences and needs of carers for palliative care and bereavement care., Aim: This study explored the experiences of MND family carers, both during their time as carers and following bereavement. Particular attention was paid to the carers' prolonged grief status and to the implications for service delivery, including palliative care., Design: A qualitative approach consisted of interviews with 16 bereaved family carers. The Prolonged Grief tool (PG-13) measured the carers' prolonged grief., Setting/participants: sixteen family carers participated in the study, between one and four years after the death of their spouse from MND in Western Australia., Results: The thematic analysis of the interview transcripts revealed five themes - the work of family carers, the change in relationship from spouse to family carer, family caring as a series of losses, coping mechanisms of family carers and supportive and palliative care experiences of family carers. The six participants who met the criteria for prolonged grief disorder accessed palliative care at a later stage in the disease trajectory., Conclusions: The study provided a basis for more research into the role palliative care services has in supporting MND carers before and after the death of their spouse and in particular the provision of more tailored respite and bereavement support.

Measuring carers' perceived satisfaction with services is crucial if services are going to continually improve their responsiveness to the needs of those they serve. The aim of this study was to assess the reliability of the next generation FAMCARE tool, which was adapted to reflect inpatient and team-based care using palliative care services who are participating in the Australian Palliative Care Outcomes Collaboration. FAMCARE-2 was distributed to a consecutive cohort of carers whilst in the caregiving role nationally. Analyses of internal consistency, generated structure and relationships of satisfaction with service provision by three demographic variables were undertaken. A total of 497 carers were recruited from 29 palliative care services across Australia, a mix of inpatient and community services. The scale achieved a high level of internal consistency (Cronbach's alpha coefficient of 0.93) and item-to-total correlation coefficient of 0.49-0.72. Factor analysis of FAMCARE-2 revealed a 4-factor structure (management of physical symptoms and comfort, provision of information, family support and patient psychological care). Results of the survey indicated satisfaction with service provision across the FAMCARE-2 subscales. Older, female carers without a culturally and linguistically diverse background were more satisfied with service provision. We conclude that FAMCARE-2 is a psychometrically sound instrument useful for measuring family carer satisfaction with service provision in a variety of palliative care settings.

Introduction: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers., Methods: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using chi(2) were complemented with a regression analysis., Results: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support., Conclusion: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.

Hospice/palliative care is a critical component of cancer care. In Australia, more than 85% of people referred to specialized hospice/palliative care services (SHPCS) have a primary diagnosis of cancer, and 60% of people who die from cancer will be referred to SHPCS. The Palliative Care Outcomes Collaboration (PCOC) is an Australian initiative that allows SHPCS to collect nationally agreed-upon measures to better understand quality, safety, and outcomes of care. This article describes data (October 2006 through September 2007) from the first 22 SHPCS, with more than 100 inpatient admissions annually. Data include phase of illness, place of discharge, and, at each transition in place of care, the person's functional status, dependency, and symptom scores. Data are available for 5,395 people for 6,379 admissions. After categorizing by phase of illness and dependency, there remain at the end of each admission 12-fold differences (mean, 26%; range, 4% to 52%) in the percentage of patients who became stable after an unstable phase; seven-fold differences (mean, 22%; range, 6% to 41%) in the percentage of patients with improved symptom scores, five-fold differences (mean, 25%; range, 12% to 64%) in discharge back to the community, four-fold differences (mean, 10%; range, 4% to 16%) in improved function, and three-fold differences in the length of stay (mean, 14 days; range, 6 to 19 days). PCOC shows it is feasible to collect quality national palliative care outcome data voluntarily. Variations in outcomes justify continued enrollment of services. Benchmarking should include all patients whose cancer will cause death and explore observed variations.

Aim: to identify and compare the needs for supportive care/palliative care services of people in Australia with Motor Neurone Disease (MND), Multiple Sclerosis (MS), Huntington's Disease (HD) and Parkinson's Disease (PD) and the needs of their carers., Design: national, descriptive survey of service use and support needs for 503 patients and 373 carers. Patients and carers were recruited from the databases of the disease associations in three Australian states. Patients were excluded if recently diagnosed or too sick or disabled to complete the survey. This was a specification of the ethics committee overseeing this project., Findings: the MND and HD groups had the greatest needs for support and appeared most receptive to a palliative approach. The MS group was least likely to have a carer and more likely to live alone. HD and PD groups had the highest rates of anxiety and HD groups had the highest rate of depression., Conclusions: patients and carers who received more tailored services and more palliative care services were the most satisfied. Therefore, results highlight the need for tailored and flexible models of care for these groups with unique care requirements.

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.

Families of patients receiving palliative care are profoundly affected by the challenges of the illness. They observe care that the patient receives, provide care for the patient, and receive support from health professionals in the form of information, counselling, or practical assistance. As they witness and participate in the patient's care, they judge the quality of care that the patient receives. They often see themselves as the patient's care advocates and may harbour regret and guilt if they believe that the patient did not have the best possible care. The illness experience profoundly affects family members' psychological and physical health; recognition of this has coined the term "hidden patients." This article briefly synthesizes empirical work that suggests how to best support families in a palliative care context. We discuss how to define the family, emphasizing a systems approach to family care. We describe the impact of the illness on the family in terms of family members' health, family communication issues, psychological issues, needs for information, physical care demands, and family costs of caring.

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]

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

Background: 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 an international drive towards increasing provision of community-led models of social and practical support for people living with advanced illness. Aim: This feasibility project aims to develop, implement and evaluate a model of community volunteers, identified as Compassionate Communities Connectors, to support people living with advanced life limiting illnesses/palliative care needs. The aims also include the development and evaluation of a training programme for volunteers and assessment of the feasibility, acceptability and preliminary effectiveness of this model of care. Methods: The approach seeks to map and mobilise people's personal networks of care through the Connectors enlisting Caring Helpers (community volunteers). Up to 10 Connectors will be trained to work with at least 30 families selected by the palliative care service as requiring support. The primary outcome is the effect of the intervention on social connectedness. Secondary outcomes are the intervention's effect on unplanned hospital utilisation, caregiver support needs, advance care plans and satisfaction with intervention for patients/carers, volunteers and service providers. Conclusion: It is expected that this intervention will enhance patient, carer and family social, psychological and practical support and reduce the need for dying people to be admitted to a hospital. [ABSTRACT FROM AUTHOR]

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

Context: The number of terminally ill people who live alone at home and without a caregiver is growing and exerting pressure on the stretched resources of home-based palliative care services. Objectives: We aimed to highlight the unmet support needs of terminally ill people who live alone at home and have no primary caregiver and identify specific models of care that have been used to address these gaps. Methods: We conducted a narrative review of empirical research published in peer-reviewed journals in English using a systematic approach, searching databases 2002-2013. This review identified 547 abstracts as being potentially relevant. Of these, 95 were retrieved and assessed, with 37 studies finally reviewed. Results: Majority of the studies highlighted the reduced likelihood of this group to be cared for and die at home and the experiences of more psychosocial distress and more hospital admissions than people with a primary caregiver. Few studies reported on the development of models of care but showed that the challenges faced by this group may be mitigated by interventions tailored to meet their specific needs. Conclusion: This is the first review to highlight the growing challenges facing community palliative care services in supporting the increasing number of people living alone who require care. There is a need for more studies to examine the effectiveness of informal support networks and suitable models of care and to provide directions that will inform service planning for this growing and challenging group. [ABSTRACT FROM AUTHOR]