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Background: Family carers have a prominent role in end-of-life care for seriously ill persons. However, most of the advance care planning literature is focused on the role of healthcare professionals. Aims: To investigate (1) what proportion of family carers discussed advance care planning with their relative and associated socio-demographic and clinical characteristics (2) what proportion received support from healthcare professionals for these conversations, (3) what type of support they received and (4) to what extent the type of support received was considered sufficient. Design/participants: Population-based cross-sectional survey in Belgium of bereaved family carers of persons with a serious chronic illness (N = 3000) who died 2–6 months before the sample was drawn, identified through three sickness funds. The survey explored support from healthcare professionals for family carers during the last 3 months of the patient's life. Results: Response rate was 55%. The proportion of family carers that engaged in an advance care planning conversation with their relative was 46.9%. Of these family carers, 78.1% received support from a healthcare professional, mostly by doing the advance care planning conversation together (53.8%). Of family carers receiving support from a healthcare professional, 57.4% deemed the support sufficient. Conclusion: Many family carers engage in advance care planning conversations with their dying relative. Healthcare professionals often support them by performing the advance care planning conversations together. More insight into how family carers can be supported to conduct these advance care planning conversations, both with and without involvement of healthcare professionals, is necessary. [ABSTRACT FROM AUTHOR]

Background: Whilst there is a sense of holism existing within palliative care practice, what is not clear is the extent to which holism, as applied in recent palliative care practice, has been adequately researched. Currently, no reviews on this topic were identified through systematic and scoping review registries. Aim: To identify and describe the available published evidence on the key features of holism and the core domains underpinning the application of holism in relation to recent palliative care practice. Design: Scoping review using the Johanna Briggs Institute design. Data sources: MEDLINE, EMCARE, and CINAHL (Ovid), PsycINFO, SocINDEX, SCOPUS and Web of Science. (International, peer-reviewed, published papers in the English language from January 2010to December 2020). Results: Five studies met inclusion criteria. Two studies used qualitative methods, one used mixed-methods, and two were randomised controlled trials. The research investigated (1) frameworks for holistic care and (2) assessment tools applied in palliative care settings. Conclusions: The results from the review led to identifying key features of palliative care that were presented as interconnected aspects of holistic care domains in both assessments and interventions. The literature revealed a focus on curative and biomedical approaches to disease management with holistic aspects acknowledged, but not in the forefront of core service delivery. Holism was generally conceptualised as an overarching theoretical framework to palliative care service provision and positioned as an adjunct to palliative models of care. These findings point to a gap in research that links the concept of holism to applied palliative care practices. [ABSTRACT FROM AUTHOR]

Background: Family meetings facilitate the exploration of issues and goals of care however, there has been minimal research to determine the benefits and cost implications. Aims: To determine: (1) if family caregivers of hospitalised patients referred to palliative care who receive a structured family meeting report lower psychological distress (primary outcome), fewer unmet needs, improved quality of life; feel more prepared for the caregiving role; and receive better quality of end-of-life care; (2) if outcomes vary dependant upon site of care and; (3) the cost-benefit of implementing meetings into routine practice. Design: Pragmatic cluster randomised trial involving palliative care patients and their primary family caregivers at three Australian hospitals. Participants completed measures upon admission (Time 1); 10 days later (Time 2) and two months after the patient died (Time 3). Regression analyses, health utilisation and process evaluation were conducted. Results: 297 dyads recruited; control (n = 153) and intervention (n = 144). The intervention group demonstrated significantly lower psychological distress (Diff: –1.68, p < 0.01) and higher preparedness (Diff: 3.48, p = 0.001) at Time 2. No differences were identified based on quality of end of life care or health utilisation measures. Conclusions: Family meetings may be helpful in reducing family caregiver distress and enhancing their preparedness for the caregiving role and it appears they may be conducted without increased hospital health utilisation impacts; although opportunity costs need to be considered in order to routinely offer these as a standardised intervention. Additional health economic examination is also advocated to comprehensively understand the cost-benefit implications. Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12615000200583 [ABSTRACT FROM AUTHOR]

Background: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context. Aim: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life. Design: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data. Setting/participants: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness. Results: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes. Conclusions: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers of people with motor neurone disease (MND) take on an extensive role. Caregivers are at increased risk of experiencing psychological distress and burden, yet, there is a lack of intervention programmes to support them. Aim: The aim of this study was to investigate the feasibility and acceptability of a therapeutic group intervention promoting self-care, problem-solving and mindfulness to informal caregivers of people with MND. Design: Pilot study that utilised a one-arm pre- and post-design. Acceptability of the intervention was assessed 2 weeks post intervention with a questionnaire designed specifically for this study. Feasibility was assessed with consent, adherence and reasons for non-participation, refusal and attrition. Participants completed baseline and follow-up (6-week post intervention) questionnaires for psychological morbidity, burden, problem-solving, mindfulness and preparedness. Settings/participants: Caregivers of people with a diagnosis of MND within the past 12 months who were 18 years or older; who could speak, read and write in English and who were attending a progressive neurological diseases clinic were eligible. Results: A total of 13 caregivers participated in one of three group intervention sessions which were focused on self-care, problemsolving and mindfulness. The intervention appeared to be feasible and acceptable. All participants stated that they would recommend the intervention to others. The group format appeared to be highly valued. There was no significant change in measures between pre-intervention and 6 weeks post intervention. Conclusion: This pilot serves as an initial step for examining interventions for MND caregivers, with the hope of identifying effective, efficient and sustainable strategies to best support this group. [ABSTRACT FROM AUTHOR]

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers. [ABSTRACT FROM AUTHOR]

Background: Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. Aims: To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. Design: Sandelowski and Barroso’s methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Data sources: Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. Results: A total of 72 studies were included in the metasynthesis. Family caregivers experience a “life transition” whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. Conclusion: The findings provide a framework to guide the development of supportive programs and future research. [ABSTRACT FROM AUTHOR]