Suchergebnisse

Access to palliative care for marginalized communities is frequently problematized as a major challenge facing palliative care services. The traditional response of asking what services can do for the disadvantaged has been invigorated by a new wave of public health measures that embrace death and dying as social processes and ask, what can be done together with such communities as partners working in palliative care. Such work has generated a significant amount of academic, social and political interests over the last 20 years; however, we are yet to see a consistent and sustained change in approach from providers. We argue that this is due to inherent tensions that arise when modelling death, dying and loss as a unified and shared social process. Unresolved tensions destabilize the theoretical foundations and risk misrepresentation of core philosophies. In this integrative review of 75 articles, we present previously undiscussed areas of contention drawing from a pan-disciplinary field of theoretical and empirical evidence. We conclude that new public health approaches lack a consistent and unified theoretical approach. From philosophical, ontological and existential ideas relating to how different stakeholders conceptualize death, to the processes by which communities are motivated and their constituent members empowered through responsibilized notions of duty and reciprocity, there is little acknowledgement of the complex tensions at hand. Increasing academic and political initiative alone is not enough to progress this movement in a manner that achieves its full potential. Instead, we must pay greater attention to the tensions described. This article aims to work with such tensions to better define the landscape of collective moral responsibility in end-of-life care. We believe that this is crucial if palliative care is to avoid becoming a technical speciality with community and communitization reduced to a mere technical solution to more profound questions.

AbstractPeople diagnosed with brain tumours enter new and unfamiliar worlds in which they must make complex and previously unimaginable decisions about care, treatment and how to live their lives. While decisions are increasingly based around care pathways, these are embedded in values that often fail to accord with those of patients. In this article, we examine the cases of people with a brain tumour and how they, their families and healthcare professionals navigate and intervene in the course of life‐threatening disease. We use ethnographic data (2014–16) and modified social theory to highlight: (1) patients' interpretations of disease and care and how they might differ from dominant biomedical logics; (2) complexity and contingency in care decisions; (3) rapid and unanticipated change owing to disease and bodily change; and (4) how people find ways through a world that is continually in motion and which comes into being through the combined action of human and non‐human agencies. Our modified 'healthscapes' approach provides an analytic that emphasises the constant precariousness of life with a brain tumour. It helps to explain the times when patients' feel bumped off the pathway and moments when they themselves step away to make new spaces for choice.

People with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff. The aim of this study is to improve our understanding of health care professionals' attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK. Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services.

INTRODUCTION: People from ethnic minority backgrounds living with dementia are more likely to be diagnosed later and have less access to health and social care support than their White counterparts in the United Kingdom (UK). Covid‐19 has exacerbated health inequalities and diminished trust from underserved communities in the government and health services. The wider aim of the study was to explore the impact of covid‐19 on Black and South‐Asian people living with dementia and their carers as well as exploring the experiences of dementia care. The present paper specifically explores their views on trust and mistrust using an ecological model. METHOD: Semi‐structured interviews were conducted with 11 family carers and four people living with dementia from South Asian or Black communities living in the community. Thematic analysis was used to analyse data. DESIGN: An exploratory qualiative design was used. RESULTS: Four main themes were developed exploring trust at the structural, organisational, community and individual level. At the structural level, participants discussed the inequity of Covid‐19, some lack of trust in the UK Government and confusion in its messaging, and the anxiety sometimes leading to curtailment of media usage. At the organisational level, there was some evidence of a perceived lack of person‐centred and culturally sensitive care from healthcare professionals, as well as concerns around care homes as places of safety. At the neighbourhood community level, participants discussed both a distrust as well as a strengthening of relationships and, at the individual level, factors such as knowledge of services, identity, and faith influenced their experience of the pandemic. CONCLUSIONS: People living with dementia need support at all levels and this study highlights how the pandemic impacted each level. Ways to improve trust in the Government and health professionals alongside culturally adapted health messaging should be explored. Alongside this, an examination of how cultural values and norms ...