Claire Bamford

Types of centredness in health care: themes and concepts.

Background For a variety of sociological reasons, different types of centredness have become important in health and social care. In trying to characterize one type of centredness, we were led to consider, at a conceptual level, the importance of the notion of centredness in general and the reasons for there being different types of centeredness. Method We searched the literature for papers on client-, family-, patient-, person- and relationship- centred care. We identified reviews or papers that defined or discussed the notions at a conceptual level. The reviews and papers were analyzed as text transcripts. Results We identified 10 themes that were common to all the types of centredness. At a conceptual level we could not identify thematic differences between the types of centredness. These findings were subjected to a philosophical critique using ideas derived from Wittgenstein. Conclusion Different types of centredness are required in different contexts. The differences are justified by their practical utility. The unifying themes of centredness, however, reflect a movement in favour of increasing the social, psychological, cultural and ethical sensitivity of our human encounters.

Defining the outcomes of community care: the perspectives of older people with dementia and their carers

There is growing recognition of the need for outcome measures which reflect the aims of services for people with dementia. The development and application of existing outcome measures has often marginalised people with dementia. ‘Experts’ and carers have been viewed as primary sources when identifying relevant outcomes or domains of quality of life, and proxy respondents have often been responsible for rating outcomes on the resulting measures. This paper reports a small consultation with people with dementia and their carers to identify the desired outcomes of community care. While there was considerable overlap in the outcomes identified by people with dementia and their carers, a number of limitations of relying solely on carers as proxy respondents were identified. A key outcome, which has been relatively neglected in previous work, was maximising a sense of autonomy. A range of outcomes related to the ways in which services are delivered were also identified. Future evaluative studies should encompass both quality-of-life outcomes and service-process outcomes (the impacts of the ways in which services are delivered) in addition to other outcome measures relevant to the aims and objectives of the service.

A qualitative study: professionals' experiences of advance care planning in dementia and palliative care, 'a good idea in theory but ...'.

Background: Advance care planning comprises discussions about an individual’s wishes for future care while they have capacity. Aim: To explore professionals’ experiences on the implementation of advance care planning in two areas of clinical care, dementia and palliative care. Design: Qualitative study, focus groups and individual interviews. Setting: North East of England. Sample: Ninety-five participants from one Primary Care Trust, two acute National Health Service Hospital Trusts, one Ambulance Trust, one Local Authority and voluntary organisations and the legal sector. Results: Fourteen focus groups and 18 interviews were held with 95 participants. While professionals agreed that advance care planning was a good idea in theory, implementation in practice presented them with significant challenges. The majority expressed uncertainty over the general value of advance care planning, whether current service provision could meet patient wishes, their individual roles and responsibilities and which aspects of advance care planning were legally binding; the array of different advance care planning forms and documentation available added to the confusion. In dementia care, the timing of when to initiate advance care planning discussions was an added challenge. Conclusions: This study has identified the professional, organisational and legal factors that influence advance care planning implementation; professional training should target these specific areas. There is an urgent need for standardisation of advance care planning documentation. Greater clarity is also required on the roles and responsibilities of different professional groups. More complex aspects of advance care planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide range of patient groups with different disease trajectories.

Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of 'best practice'

BackgroundDespite growing evidence that many people with dementia want to know their diagnosis, there is wide variation in attitudes of professionals towards disclosure. The disclosure of the diagnosis of dementia is increasingly recognised as being a process rather than a one-off behaviour. However, the different behaviours that contribute to this process have not been comprehensively defined. No intervention studies to improve diagnostic disclosure in dementia have been reported to date. As part of a larger study to develop an intervention to promote appropriate disclosure, we sought to identify important disclosure behaviours and explore whether supplementing a literature review with other methods would result in the identification of new behaviours.MethodsTo identify a comprehensive list of behaviours in disclosure we conducted a literature review, interviewed people with dementia and informal carers, and used a consensus process involving health and social care professionals. Content analysis of the full list of behaviours was carried out.ResultsInterviews were conducted with four people with dementia and six informal carers. Eight health and social care professionals took part in the consensus panel. From the interviews, consensus panel and literature review 220 behaviours were elicited, with 109 behaviours over-lapping. The interviews and consensus panel elicited 27 behaviours supplementary to the review. Those from the interviews appeared to be self-evident but highlighted deficiencies in current practice and from the panel focused largely on balancing the needs of people with dementia and family members. Behaviours were grouped into eight categories: preparing for disclosure; integrating family members; exploring the patients perspective; disclosing the diagnosis; responding to patient reactions; focusing on quality of life and well-being; planning for the future; and communicating effectively.ConclusionThis exercise has highlighted the complexity of the process of disclosing a diagnosis of dementia in an appropriate manner. It confirms that many of the behaviours identified in the literature (often based on professional opinion rather than empirical evidence) also resonate with people with dementia and informal carers. The presence of contradictory behaviours emphasises the need to tailor the process of disclosure to individual patients and carers. Our combined methods may be relevant to other efforts to identify and define complex clinical practices for further study.

18F-FDG PET and Perfusion SPECT in the Diagnosis of Alzheimer and Lewy Body Dementias

Brain imaging with glucose (18F-FDG) PET or blood flow (hexamethylpropyleneamine oxime) SPECT is widely used for the differential diagnosis of dementia, though direct comparisons to clearly establish superiority of one method have not been undertaken. Methods: Subjects with Alzheimer disease (AD; n = 38) and dementia with Lewy bodies (DLB; n = 30) and controls (n = 30) underwent 18F-FDG PET and SPECT in balanced order. The main outcome measure was area under the curve (AUC) of receiver-operating-characteristic analysis of visual scan rating. Results: Consensus diagnosis with 18F-FDG PET was superior to SPECT for both dementia vs. no-dementia (AUC = 0.93 vs. 0.72, P = 0.001) and AD vs. DLB (AUC = 0.80 vs. 0.58, P = 0.005) comparisons. The sensitivity and specificity for dementia/no-dementia was 85% and 90%, respectively, for 18F-FDG PET and 71% and 70%, respectively, for SPECT. Conclusion: 18F-FDG PET was significantly superior to blood flow SPECT. We recommend 18F-FDG PET be performed instead of perfusion SPECT for the differential diagnosis of degenerative dementia if functional imaging is indicated.

Costs of formal care for frail older people in England:: the resource implications study of the MRC cognitive function and ageing study (RIS MRC CFAS)

The aim of this paper is to quantify service use and costs of supporting frail older people at home in the community, using data collected in a longitudinal multicentre stratified randomised study for 1055 mentally frail, physically frail, and mentally and physically frail subjects. Average costs per person per week were found to total 64.45 Pounds Sterling, with a small number of services accounting for a large proportion of the total costs. The level of services offered by the nonstatutory voluntary and private sectors was found to be small. To highlight issues for policy makers, the extent of cost variations between a number of different subgroups were calculated. These bivariate analyses revealed substantial variation in costs, especially according to household structure, type of frailty, whether admission to continuing care accommodation occurred and survival. Multiple regression analysis demonstrated that 26% of the variation in log average weekly costs could be explained by a number of socio-demographic and health status variables. A particularly close relationship was observed between costs and whether admission to continuing care accommodation occurred, highlighting a need for policy-makers to examine the nature and scale of provision of alternative community based care packages. The results demonstrate that descriptive cost data such as those presented can provide information useful to the planning process, enabling more informed choices to be made over the provision of services for particular groups of people.

Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning

BACKGROUND Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia. METHOD This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically. RESULTS People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare. CONCLUSIONS Health and social care professionals can build on peoples preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.

Implementing nutrition guidelines for older people in residential care homes: a qualitative study using Normalization Process Theory

BackgroundOptimizing the dietary intake of older people can prevent nutritional deficiencies and diet-related diseases, thereby improving quality of life. However, there is evidence that the nutritional intake of older people living in care homes is suboptimal, with high levels of saturated fat, salt, and added sugars. The UK Food Standards Agency therefore developed nutrient- and food-based guidance for residential care homes. The acceptability of these guidelines and their feasibility in practice is unknown. This study used the Normalization Process Theory (NPT) to understand the barriers and facilitators to implementing the guidelines and inform future implementation.MethodsWe conducted a process evaluation in five care homes in the north of England using qualitative methods (observation and interviews) to explore the views of managers, care staff, catering staff, and domestic staff. Data were analyzed thematically and discussed in data workshops; emerging themes were then mapped to the constructs of NPT.ResultsMany staff perceived the guidelines as unnecessarily restrictive and irrelevant to older people. In terms of NPT, the guidelines simply did not make sense (coherence), and as a result, relatively few staff invested in the guidelines (cognitive participation). Even where staff supported the guidelines, implementation was hampered by a lack of nutritional knowledge and institutional support (collective action). Finally, the absence of observable benefits to clients confirmed the negative preconceptions of many staff, with limited evidence of reappraisal following implementation (reflexive monitoring).ConclusionsThe successful implementation of the nutrition guidelines requires that the fundamental issues relating to their perceived value and fit with other priorities and goals be addressed. Specialist support is needed to equip staff with the technical knowledge and skills required for menu analysis and development and to devise ways of evaluating the outcomes of modified menus. NPT proved useful in conceptualizing barriers to implementation; robust links with behavior-change theories would further increase the practical utility of NPT.

Which factors explain variation in intention to disclose a diagnosis of dementia? A theory-based survey of mental health professionals

BackgroundFor people with dementia, patient-centred care should involve timely explanation of the diagnosis and its implications. However, this is not routine. Theoretical models of behaviour change offer a generalisable framework for understanding professional practice and identifying modifiable factors to target with an intervention. Theoretical models and empirical work indicate that behavioural intention represents a modifiable predictor of actual professional behaviour. We identified factors that predict the intentions of members of older peoples mental health teams (MHTs) to perform key behaviours involved in the disclosure of dementia.DesignPostal questionnaire survey.ParticipantsProfessionals from MHTs in the English National Health Service.MethodsWe selected three behaviours: Determining what patients already know or suspect about their diagnosis; using explicit terminology when talking to patients; and exploring what the diagnosis means to patients. The questionnaire was based upon the Theory of Planned Behaviour (TPB), Social Cognitive Theory (SCT), and exploratory team variables.Main outcomesBehavioural intentions.ResultsOut of 1,269 professionals working in 85 MHTs, 399 (31.4%) returned completed questionnaires. Overall, the TPB best explained behavioural intention. For determining what patients already know, the TPB variables of subjective norm, perceived behavioural control and attitude explained 29.4% of the variance in intention. For the use of explicit terminology, the same variables explained 53.7% of intention. For exploring what the diagnosis means to patients, subjective norm and perceived behavioural control explained 48.6% of intention.ConclusionThese psychological models can explain up to half of the variation in intention to perform key disclosure behaviours. This provides an empirically-supported, theoretical basis for the design of interventions to improve disclosure practice by targeting relevant predictive factors.Trial RegistrationISRCTN15871014.

Psychological distress among informal supporters of frail older people at home and in institutions

Objective. Investigate presence of psychiatric morbidity in informal carers using 30‐item General Health Questionnaire (GHQ) and examine which factors best predict psychiatric morbidity.