Doing what makes sense: locating knowledge about person-centred care in the everyday logics of long-term care

Addressing criticisms of the routine-driven, task-oriented, depersonalising nature of conventional services, and reflecting a broader trend across health and social care, person-centred care has become the watchword for quality in long-term care for older people in recent years. Person-centred care requires recognising the unique personhood of each individual regardless of their physical or mental capacity. Efforts to realise this approach depend largely on the non-professional nursing staff who deliver the majority of direct care in this context. However, little is known about how new knowledge, including ideas and evidence about person-centred care, translates into the daily practices of this cadre of staff, who have little formal training, low job status, and limited access to traditional forms of research dissemination and knowledge exchange. Building on the existing knowledge-translation literature, therefore, the aim of this study was to explore the mechanisms of knowledge translation about person-centred care among care assistants in long-term care. The objectives were to examine how these staff develop their understanding of person-centred care; identify the personal and contextual factors involved; and explore what can be learned about person-centred care from their current practices. The study used ethnographic methods, including 500 hours of participant observation, in-depth interviews, and document analysis, to conduct case studies of two private nursing homes located in the East Midlands and the north-eastern United States. Without claiming to demonstrate causality, extending the research across two policy settings did facilitate the identification of pertinent issues within and beyond each individual facility. Data analysis was informed by practice theory, which provided an alternative to the individualist assumptions which characterise popular representations of long-term care, on the one hand, and, on the other, structural explanations that renounce individual agency altogether. From this theoretical perspective, drawing in particular on Bourdieu‘s theory of practical logic and the neo-institutional concept of institutional logics, this study identified how the interconnection of particular practices within each setting produced different situated understandings and implementation of person-centred care. A key finding was that care assistants' individualised knowledge about each resident, obtained through their direct daily care, represented an important form of symbolic capital in this field. Their willingness or reluctance to share such knowledge, consequently, corresponded to the extent to which other practices, including communication and teamwork, supported or threatened this limited source of power. The second, related finding was that care assistants derived from this individualised knowledge a certain amount of autonomy, or discretion, over the organisation and delivery of daily care. This discretion, together with the agency that care assistants exercised in navigating different institutional logics in this context of care – which was the third main finding – signified a potential nexus of practice change. Conversely, new knowledge or ideas that undermined this limited discretion and agency tended to engender denial or resistance. As the population ages, demand for long-term care for older people is increasing exponentially, prompting concerns about the capacity and sustainability of this sector. One significant area of concern is workforce recruitment, retention, and competence. This study, located at the intersection of research on long-term care and knowledge translation, contributes to efforts to address these concerns by identifying opportunities for intervention in education, training, and support, in order to build a workforce that is equipped to provide high-quality, evidence-based, person-centred care for older people throughout the years ahead

Doing what makes sense: locating knowledge about person-centred care in the everyday logics of long-term care

Addressing criticisms of the routine-driven, task-oriented, depersonalising nature of conventional services, and reflecting a broader trend across health and social care, person-centred care has become the watchword for quality in long-term care for older people in recent years. Person-centred care requires recognising the unique personhood of each individual regardless of their physical or mental capacity. Efforts to realise this approach depend largely on the non-professional nursing staff who deliver the majority of direct care in this context. However, little is known about how new knowledge, including ideas and evidence about person-centred care, translates into the daily practices of this cadre of staff, who have little formal training, low job status, and limited access to traditional forms of research dissemination and knowledge exchange. Building on the existing knowledge-translation literature, therefore, the aim of this study was to explore the mechanisms of knowledge translation about person-centred care among care assistants in long-term care. The objectives were to examine how these staff develop their understanding of person-centred care; identify the personal and contextual factors involved; and explore what can be learned about person-centred care from their current practices. The study used ethnographic methods, including 500 hours of participant observation, in-depth interviews, and document analysis, to conduct case studies of two private nursing homes located in the East Midlands and the north-eastern United States. Without claiming to demonstrate causality, extending the research across two policy settings did facilitate the identification of pertinent issues within and beyond each individual facility. Data analysis was informed by practice theory, which provided an alternative to the individualist assumptions which characterise popular representations of long-term care, on the one hand, and, on the other, structural explanations that renounce individual agency altogether. From this theoretical perspective, drawing in particular on Bourdieu‘s theory of practical logic and the neo-institutional concept of institutional logics, this study identified how the interconnection of particular practices within each setting produced different situated understandings and implementation of person-centred care. A key finding was that care assistants' individualised knowledge about each resident, obtained through their direct daily care, represented an important form of symbolic capital in this field. Their willingness or reluctance to share such knowledge, consequently, corresponded to the extent to which other practices, including communication and teamwork, supported or threatened this limited source of power. The second, related finding was that care assistants derived from this individualised knowledge a certain amount of autonomy, or discretion, over the organisation and delivery of daily care. This discretion, together with the agency that care assistants exercised in navigating different institutional logics in this context of care – which was the third main finding – signified a potential nexus of practice change. Conversely, new knowledge or ideas that undermined this limited discretion and agency tended to engender denial or resistance. As the population ages, demand for long-term care for older people is increasing exponentially, prompting concerns about the capacity and sustainability of this sector. One significant area of concern is workforce recruitment, retention, and competence. This study, located at the intersection of research on long-term care and knowledge translation, contributes to efforts to address these concerns by identifying opportunities for intervention in education, training, and support, in order to build a workforce that is equipped to provide high-quality, evidence-based, person-centred care for older people throughout the years ahead

Evidence-Based Nonpharmacological Practices to Address Behavioral and Psychological Symptoms of Dementia

Background and Objectives: To draw from systematic and other literature reviews to identify, describe, and critique nonpharmacological practices to address behavioral and psychological symptoms of dementia (BPSDs) and provide evidence-based recommendations for dementia care especially useful for potential adopters. Research Design and Methods: A search of systematic and other literature reviews published from January 2010 through January 2017. Nonpharmacological practices were summarized to describe the overall conceptual basis related to effectiveness, the practice itself, and the size and main conclusions of the evidence base. Each practice was also critically reviewed to determine acceptability, harmful effects, elements of effectiveness, and level of investment required, based on time needed for training/implementation, specialized care provider requirements, and equipment/capital requirements. Results: Nonpharmacological practices to address BPSDs include sensory practices (aromatherapy, massage, multi-sensory stimulation, bright light therapy), psychosocial practices (validation therapy, reminiscence therapy, music therapy, pet therapy, meaningful activities), and structured care protocols (bathing, mouth care). Most practices are acceptable, have no harmful effects, and require minimal to moderate investment. Discussion and Implications: Nonpharmacological practices are person-centered, and their selection can be informed by considering the cause and meaning of the individual's behavioral and psychological symptoms. Family caregivers and paid care providers can implement evidence-based practices in home or residential care settings, although some practices require the development of more specific protocols if they are to become widely used in an efficacious manner

Caring for the Future: The Power and Potential of Americas Direct Care Workforce

This report is the culmination of a year-long series of reports (released throughout 2020) providing a comprehensive, current-day analysis of the direct care workforce and its critical role in the long-term care system in the United States. By bringing these reports together, this final report provides: a detailed profile of these workers; a segmented look at the long-term care industry; a discussion on the evolving role of the direct care worker; a proposed framework for creating quality jobs in direct care; and a look forward at where this workforce and industry are heading. The report also offers concrete recommendations for policymakers, employers, advocates, and other long-term care leaders, and features stories of direct care workers from around the country, sharing their wisdom and ideas. In releasing this report, our goal is to strengthen the national dialogue on the direct care workforce, including what needs to change in policy and in practice.workforce,including what needs to change in policy and in practice

Caring for the Future: The Power and Potential of Americas Direct Care Workforce (Executive Summary)

This executive summary describes the key points of our comprehensive, current-day analysis of the direct care workforce. This report is the culmination of a year-long series of reports (released throughout 2020) providing a comprehensive, current-day analysis of the direct care workforce and its critical role in the long-term care system in the United States. By bringing these reports together, this final report provides: a detailed profile of these workers; a segmented look at the long-term care industry; a discussion on the evolving role of the direct care worker; a proposed framework for creating quality jobs in direct care; and a look forward at where this workforce and industry are heading. The report also offers concrete recommendations for policymakers, employers, advocates, and other long-term care leaders, and features stories of direct care workers from around the country, sharing their wisdom and ideas. In releasing this report, our goal is to strengthen the national dialogue on the direct care workforce, including what needs to change in policy and in practice

A short report on knowledge exchange through research-based theatre: ‘Inside out of mind’

The short report describes the development from page to stage of a work of theatre based on an ethnographic study. The originating research focused on the work of health care assistants (nurse's aides) whose direct impact on the quality of life of highly dependent people is often overlooked. The research followed hospital personnel on wards specialising in the 'challenging behaviour' associated with dementia in central England. Conventional research outputs failed to engage the health care assistants themselves, so we turned to theatre to remedy this. The development of the field notes into theatre was characterised by the artistic freedom given to the playwright, in contrast to more data-led approaches to theatre making. The account of the process of creating the play, Inside Out of Mind, is followed a description of how the work was received by specialist and general audiences totalling 2000+. The discussion seeks to locate the whole enterprise in relation to the field of research-based theatre and explores how the production and its associated learning events relate to definitions of research-based theatre in the light of recent attempts to encapsulate this broad and diverse methodology

Using a Reflective Diary Method to Investigate the Experiences of Paid Home Care Workers Caring for People With Dementia

This article reports on the use of an innovative reflective diary method with paid home care workers caring for people with dementia. It examines the key features of the diary design, recruitment and training of participants, diarists’ approaches and responses to diary-keeping, and evaluates the use of diaries in this context. Following training, 11 volunteers (all female) employed by a U.K.-based home care organization kept diaries of their experiences of caring for those with dementia. Using specially designed diaries, they wrote about their visits to clients for a period of approximately 4 months and were remunerated for up to 16 extra hours at their usual hourly rate of pay. Overall, home care workers engaged well with the process, keeping regular, lengthy, timely, and reflective diary entries. Diary-keeping provided a means for these workers to express their emotions about their work, while enhancing their self-insight and care practices. We demonstrate the feasibility of diaries for research with this occupational group and conclude that the written reflexivity employed in diaries can document, enrich, and improve the work of these caregivers

Dementia Friendly Initiatives: A State of the Science Review

Background: Dementia friendly initiatives share similarities with the age-friendly movement in a focus on active engagement and creating a good quality of life for older adults. Dementia friendly initiatives offer a welcoming optimistic narrative in dementia studies by embracing dignity, empowerment, and autonomy to enable well-being throughout the dementia trajectory. Purpose: The purpose of this review is to explore the current science of dementia friendly initiatives, identify gaps, and inform future research. Method: Quantitative, qualitative, and conceptual/theoretical peer-reviewed dementia friendly research literature were evaluated for their current evidence base and theoretical underpinnings. Results: The dementia friendly initiatives research base is primarily qualitative and descriptive focused on environmental design, dementia awareness and education, and the development of dementia friendly communities. Person-centered care principles appear in dementia friendly initiatives centered in care settings. Strong interdisciplinary collaboration is present. Research is needed to determine the effect of dementia friendly initiatives on stakeholder-driven and community-based outcomes. Due to the contextual nature of dementia, the perspective of persons with dementia should be included as dementia friendly initiatives are implemented. Theory-based studies are needed to confirm dementia friendly initiative components and support rigorous evaluation. Dementia friendly initiatives broaden the lens from which dementia is viewed

Power, ethics, and person-centred care: using ethnography to examine the everyday practices of unregistered dementia care staff

The social positioning and treatment of persons with dementia reflects dominant biomedical discourses of progressive and inevitable loss of insight, capacity, and personality. Proponents of person-centred care, by contrast, suggest that such loss can be mitigated within environments that preserve rather than undermine personhood. In institutional settings, person-centred approaches place particular emphasis on ‘empowering’ unregistered care staff to translate this idea into practice. These staff provide the majority of hands-on care, but with limited training, recognition, or remuneration. Working within a Foucauldian understanding of power and the ethical constitution of subjects, this paper examines the complex ways that dementia care staff engage with their own ‘dis/empowerment’ in everyday practice. The findings, which are drawn from ethnographic studies of three National Health Service (NHS) wards and one private care home in England, are presented as a narrative exploration of carers’ general experience of powerlessness, their inversion of this marginalised subject positioning, and the related possibilities for action. By examining the daily dilemmas that care staff navigate, this paper contributes to our understanding of the complex risks and responsibilities entailed in direct care work, with implications for the provision of ethical and person-centred dementia care

The Influence of Human Factors on Access and Scheduling of Primary Care Services

Part 2: Knowledge Discovery and SharingInternational audienceThis paper explores human and organisational factors (HOFs) related to access and scheduling (A&S) of Healthcare services. Here human factors relate to the ‘processed’ (patients) as well as the ‘processors’ (people working in the operation). A ‘whole system perspective’ is taken to investigate how these influence outcomes. The analysis differentiates acceptable demand on the service from failure demand [1], where failure demand represents unnecessary demand placed on acute care (such as Accident and Emergency in hospitals) as well as primary care services. For eight General Practices in the UK, approaches to practice organisation, including A&S, are analysed to establish HOFs that influence service delivery and performance. Findings highlight HOFs affecting outcomes and ways in which A&S arrangements can be modified to improve them. These should inform the choice and management of effective A&S in a range of Health service scenarios, as well as for General Practices in the UK