Catherine Exley

Integrating telecare for chronic disease management in the community: What needs to be done?

BackgroundTelecare could greatly facilitate chronic disease management in the community, but despite government promotion and positive demonstrations its implementation has been limited. This study aimed to identify factors inhibiting the implementation and integration of telecare systems for chronic disease management in the community.MethodsLarge scale comparative study employing qualitative data collection techniques: semi-structured interviews with key informants, task-groups, and workshops; framework analysis of qualitative data informed by Normalization Process Theory. Drawn from telecare services in community and domestic settings in England and Scotland, 221 participants were included, consisting of health professionals and managers; patients and carers; social care professionals and managers; and service suppliers and manufacturers.ResultsKey barriers to telecare integration were uncertainties about coherent and sustainable service and business models; lack of coordination across social and primary care boundaries, lack of financial or other incentives to include telecare within primary care services; a lack of a sense of continuity with previous service provision and self-care work undertaken by patients; and general uncertainty about the adequacy of telecare systems. These problems led to poor integration of policy and practice.ConclusionTelecare services may offer a cost effective and safe form of care for some people living with chronic illness. Slow and uneven implementation and integration do not stem from problems of adoption. They result from incomplete understanding of the role of telecare systems and subsequent adaption and embeddedness to context, and uncertainties about the best way to develop, coordinate, and sustain services that assist with chronic disease management. Interventions are therefore needed that (i) reduce uncertainty about the ownership of implementation processes and that lock together health and social care agencies; and (ii) ensure user centred rather than biomedical/service-centred models of care.

Living with Uncertainty: Temporomandibular Disorders

Temporomandibular disorders (TMDs) are a common group of chronic illnesses. There is evidence that health professionals find them difficult to diagnose and manage. A consequence of this difficulty in diagnosis might be that sufferers of TMDs have an experience of illness comparable with other chronic illnesses. To explore the sufferers’ experience of TMDs, we conducted a qualitative study with a purposive maximum variation sample of secondary care TMD patients. Semi-structured interviews were conducted with the sample and were recorded and transcribed verbatim. Data collection and analysis continued until data saturation (n = 19). For analysis, we broadly followed the constant comparative method and used frameworks to organize the data. The key finding was that a lack of diagnosis caused uncertainty over the nature of the cause of the sufferer’s complaint. This uncertainty reportedly caused negative impacts on sufferers’ daily lives. Clearly, diagnosis of TMDs needs to be encouraged at the first point of contact.

A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia

BACKGROUND advance care planning (ACP) allows a patient to state their preferences for care, so that if in future they cannot make decisions their wishes are known. Our aim was to review systematically the effectiveness of ACP interventions in people with cognitive impairment and dementia. METHODS systematic searches of key electronic databases, supplemented by hand searches of reference lists and consultation with experts. Two independent reviewers undertook screening, data extraction and quality assessment. RESULTS four studies were included; three allocated providers randomly to intervention or control arm. All took place in nursing homes. Three studies reported formal processes of capacity assessment, only up to 36% of participants were judged to have capacity. Three studies reported positive findings in terms of documentation of patient preferences for care. Two studies reported significant reductions in hospitalisation rates; a third found increased use of hospice services in the intervention group. A meta-analysis could not be carried out due to heterogeneity of outcome measures. CONCLUSIONS there is limited evidence for the effectiveness of ACP in people with cognitive impairment/dementia in terms of ACP documentation and health-care use. In terms of capacity to discuss ACP, nursing home settings may be too late for people with dementia.

Palliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients, lay-carers and health care professionals.

Primary care plays an important role in delivering care to people who are dying. However, providing palliative care to people dying with conditions other than cancer may be more problematic, because it may be more difficult to establish an exact prognosis or to identify their needs. This article draws on qualitative research, which explored the views of health professionals, patients and their carers about care provided at the end of life. Differences between the care of people with cancer and those with end-stage cardiorespiratory disease were found in four main areas: management and progression of disease, communication and information, health care in the community and awareness of dying. The research shows that even in PHCTs (primary health care teams) committed to the delivery of palliative care, people dying with end-stage cardiorespiratory disease are less likely than those with cancer to receive full, and easily understood, information, to be aware that they are dying or to receive district nursing care. There is an increasing call for palliative care to be extended to all, but further work is needed to develop appropriate packages of care for those dying with conditions other than cancer.

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.

Bridging a gap: the (lack of a) sociology of oral health and healthcare

This article provides an historical review of international research related to sociology and oral health and healthcare. I begin by considering the relevance of the mouth and oral health to social interactions and physical health, and outline existing inequalities in oral health and healthcare experiences. The paper examines critically some of the existing published research in the field - considering both what might be described as sociology of oral health and healthcare and sociology in oral healthcare - and demonstrates the dearth of sociological research related to this subject compared to other areas of interest within the field of sociology of health and illness. I conclude by suggesting some ways in which this area could be expanded and developed further. I suggest that sociological analyses of how individuals experience, understand and manage their mouth and oral health, can add to and enhance the broader field of the sociology of health and illness. Further, examining experiences and provision of oral healthcare may provide sociology with a new opportunity to explore the neglected field of private healthcare, but also to engage with health policy makers who seek to address oral healthcare needs.

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.

Patient preferences for future care - how can Advance Care Planning become embedded into dementia care: a study protocol

BackgroundPeople living with a long term condition may wish to be able to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this process is termed Advance Care Planning (ACP). In dementia, guidance stipulates that ACP discussions should take place whilst the person still has capacity to make decisions. However there is a lack of evidence on the effectiveness of ACP in influencing patient choice and resource use. The aims of this study are to determine the effectiveness of ACP in dementia care, identify the factors which facilitate the process in practice and provide a better understanding of the views and experiences of key stakeholders in order to inform clinical practice.Methods/DesignThe four phase project comprises a systematic review (Phase 1) and a series of qualitative studies (Phases 2 and 3), with data collection via focus groups and individual interviews with relevant stakeholders including people with dementia and their carers, health and social care professionals and representatives from voluntary organisations and the legal profession. The conduct of the systematic review will follow current best practice guidance. In phases 2 and 3, focus groups will be employed to seek the perspectives of the professionals; individual interviews will be carried out with people with dementia and their carers. Data from Phases 1, 2 and 3 will be synthesised in a series of team workshops to develop draft guidance and educational tools for implementing ACP in practice (Phase 4).DiscussionIn the UK, there is little published research on the effectiveness of ACP, despite its introduction into policy. This study was designed to explore in greater depth how ACP can best be carried out in routine practice. It affords the opportunity to develop both a theoretical and practical understanding of an area which both patients and professionals may find emotionally challenging. Importantly the study will also develop practical tools, which are grounded in practice, for all relevant stakeholders to enable the facilitation of timely and sensitive ACP discussions.

Creating a patient-based condition-specific outcome measure for Temporomandibular Disorders (TMDs): Oral Health Impact Profile for TMDs (OHIP-TMDs)

The aim of this study was to generate a putative patient-based outcome measure specifically for Temporomandibular Disorders (TMDs) using a mixed-method approach. A combined quantitative-qualitative methodology was used to identify the most relevant items in the Oral Health Impact Profile (OHIP-49) for TMDs. The quantitative study involved 110 patients with TMDs diagnosed using the Research Diagnostic Criteria for TMDs (RDC/TMD) and 110 age- and sex-matched controls. All subjects completed the OHIP-49. The qualitative study involved semi-structured interviews with a separate sample of patients with TMDs (n = 29). The two resultant data sets were analysed blinded and separately. Each data set used predetermined rules to select candidate items for the putative OHIP for TMDs. The two sets of selected items were then compared using a priori rules to make a final item selection for OHIP TMDs. Eighteen pre-existing items were selected through the quantitative process and fourteen by the qualitative process. On comparison of the two selections all but two of the items selected by the qualitative process had also been selected by the quantitative process. Two new candidate items emerged from the qualitative data that were not covered by OHIP-49. A 22 item putative OHIP-TMDs outcome measure emerged from the final selection process. A putative OHIP-TMDs outcome measure has been generated which requires further testing especially in relation to its responsiveness to change.

‘Your whole life is lived through your teeth’: biographical disruption and experiences of tooth loss and replacement

The experience and meaning of tooth loss and replacement has varied historically and culturally but has received relatively little attention from social scientists. Our study set out to understand these experiences in the context of the arrival of newer, dental implant treatments. Semi-structured qualitative interviews were carried out with 39 men and women who had experienced tooth loss and replacement. A thematic analysis was sensitised by previous sociological work on chronic illness, particularly Burys notion of biographical disruption. We found that while for some individuals the loss of a tooth was relatively insignificant, for others it was devastating and disruptive. In seeking to understand this difference, the concept of biographical disruption was a helpful analytical tool. Our analysis identified two forms of disruption. The first related to the meanings of tooth loss (the neglected mouth) and denture wearing (a marker of old age). The second, embodied, disruption concerned the relationship between the self and mouth in those wearing dentures (the invaded, unreliable mouth) and could occur even where tooth loss and denture wearing had been biographically anticipated.