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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.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 2018-19.69 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.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.

This chapter outlines a public health approach to bereavement care. The findings of an Australian population-based survey, which challenge some of the ‘received wisdom’ in this field, are presented, exposing both the limitations of clinical services and validating community-based approaches to bereavement support. The survey shows that, for most people, the bulk of the support that is effective comes from their informal networks, and that many have an ambivalent response to the professional support offered. The clear inference is that professional services need to work collaboratively in support of these informal networks if their contribution is to be appropriate and effective. We show how a population health approach can be applied to a specific population, people living with motor neurone disease, a study that highlights the importance of third-sector organizations during caregiving and grieving. Even during the COVID-19 pandemic, public health strategies like compassionate communities retained their value and developed new approaches when face-to-face encounters were minimal and physical means for support were limited. Overall, empirical indicators and directions encourage a compassionate community approach to future bereavement support practice and policy, and these findings are now influencing practice and policy in several countries. Public health approaches to palliative care must be accompanied by public health approaches to bereavement care if we are to develop relevant, coherent, and comprehensive end of life care policies and practices.

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.

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.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.Family carers of older persons with dementia (65 years).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.No treatment, standard care or treatment as usual, or an alternative intervention.Experimental and epidemiological study designs.Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments.A three-step strategy sought to identify both published and unpublished studies from 1995.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).The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently.Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures.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).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.

This is the first two-phase Australian study to explore the factors impacting upon compassion satisfaction, compassion fatigue, anxiety, depression and stress and to describe the strategies nurses use to build compassion satisfaction into their working lives.Compassion fatigue has been found to impact on job satisfaction, the quality of patient care and retention within nursing. This study provides new knowledge on the influences of anxiety, stress and depression and how they relate to compassion satisfaction and compassion fatigue.In Phase 2 of the study, 10 nurses from Phase 1 of the study participated in individual interviews and a focus group. A semi-structured interview schedule guided the conversations with the participants.Data analysis resulted in seven main themes: social networks and support;infrastructure and support; environment and lifestyle; learning; leadership; stress; and suggestions to build psychological wellness in nurses.Findings suggest that a nurse’s capacity to cope is enhanced through strong social and collegial support, infrastructure that supports the provision of quality nursing care and positive affirmation. These concepts are strongly linked to personal resilience.for nursing management These findings support the need for management to develop appropriate interventions to build resilience in nurses.

Palliative care patients who live alone report greater psychological distress, and are less likely to die at home than those living with a family carer. However, there is a lack of research on the value of models of care that specifically address this disadvantage. This article describes the experiences of terminally ill 'home alone' people using one of two models of care aimed at maintaining participants' need for independent living, focusing on the effect of these two models of care on their physical, social and emotional needs. Twenty six palliative care patients of Silver Chain Hospice Care, in Western Australia, were randomly assigned to either having a personal alarm or additional care-aide hours in their home. An in-depth qualitative study was conducted in two phases in 2010 using face-to-face interviews. The care-aide model of care resulted in benefits such as easing the burden of everyday living; supporting well-being; enhancing quality of life and preserving a sense of dignity; and reducing loneliness and isolation. The personal alarm model of care imparted a sense of security; provided peace of mind; and helped to deal with feelings of isolation. Participants in both groups felt that they could remain at home longer. By providing a safer, more secure environment through the use of a personal alarm or additional care-aide hours, patients were able to continue their activities of daily living, could build a sense of 'normality' into their lives, and they could live independently through support and dignity.

The 'Waist' Disposal Challenge (WDC) is a lay-led community-based health intervention in Rotary clubs in Western Australia aimed at reducing risk factors leading to lifestyle-related chronic diseases and, in particular, obesity. Ninety-three lay health advisors (LHA) or Champions were trained to deliver educational sessions to their clubs (for 1300 peers) and implement a body mass index competition by taking monthly weigh-ins (for 764 peers).A mixed method design was used to explore Champions' experiences with the training program and their perceived role and impact on implementing the program in their clubs in 2010-11.The qualitative data provided important evidence that initial implementation of this LHA-led health promotion intervention (WDC) has been effective and impacted positively on the Champions and their Rotary clubs. The results were a good fit in the two social action arenas of the Natural Helper Intervention Model: peer-to-peer social support and community attachment.Reflecting on the impact of the program in their clubs, Champions reported overall health improvements at the personal, peer and community levels, enhanced awareness about health-related issues, improved health behaviour and enhanced community capacity. So what? Champions are an important resource for providing self-management education to people who are at risk of developing chronic conditions, particularly for those hard to reach and where there are difficulties recruiting trained health professionals. Future research needs to explore the characteristics of Champions that impact on the success of community-based programs.

To explore potential barriers to occupational therapy in palliative care in Western Australia, as perceived by occupational therapists and other health professionals.A qualitative research methodology was used. Semi-structured interviews were conducted with 10 occupational therapists and 10 health professionals (including a physiotherapist, a social worker, medical registrars and clinical nurses). Interviews were transcribed verbatim and analysed using content analysis.The four main themes identified were: inconsistent understanding of the contribution that occupational therapists can make to palliative care, insufficient promotion of the potential contribution of occupational therapy, insufficient funding, and limited research on the role of occupational therapy in palliative care.This study provides an understanding of the barriers that have limited occupational therapists' involvement in providing palliative care in Western Australia.

Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998-2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included. Findings are presented in the following areas: the caregiving experience and contextual features; supporting family caregivers at end of life; caregiving roles and decision-making; and rewards, meaning and coping. We noted a lack of definitional clarity; a reliance on interview methods and descriptive, thematic analyses, and a relative lack of diversity of patient conditions. Research needs are identified in several areas, including the bereavement experience, caregiver ambivalence, access to services, caregiver meaning-making, and relational and contextual influences on family caregiving at end of life. © 2010 The Author(s).