The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of 'end of life' within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy's recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of 'continuous palliation'.

Palliative care in the UK has been developed to meet the needs of predominantly middle aged and younger old people with cancer. Few data are available regarding the extent to which services respond to the specific needs of an older group of people with other illnesses. This paper draws on in-depth interviews conducted with 40 people (median age 77) with advanced heart failure and poor prognosis to explore the extent to which older people's views and concerns about dying are consistent with the prevalent model of the 'good death' underpinning palliative care delivery. That prevalent model is identified as the "revivalist" good death. Our findings indicate that older people's views of a 'good death' often conflict with the values upon which palliative care is predicated. For example, in line with previous research, many participants did not want an open awareness of death preceded by acknowledgement of the potential imminence of dying. Similarly, concepts of autonomy and individuality appeared alien to most. Indeed, whilst there was evidence that palliative care could help improve the end of life experiences of older people, for example in initiating discussions around death and dying, the translation of other aspects of specialist palliative care philosophy appear more problematic. Ultimately, the study identified that improving the end of life experiences of older people must involve addressing the problematised nature of ageing and old age within contemporary society, whilst recognising the cohort and cultural effects that influence attitudes to death and dying.

BACKGROUND: Patients have the potential to provide a rich source of information on both organisational aspects of safety and patient safety incidents. This project aims to develop two patient safety interventions to promote organisational learning about safety - a patient measure of organisational safety (PMOS), and a patient incident reporting tool (PIRT) - to help the NHS prevent patient safety incidents by learning more about when and why they occur. METHODS: To develop the PMOS 1) literature will be reviewed to identify similar measures and key contributory factors to error; 2) four patient focus groups will ascertain practicality and feasibility; 3) 25 patient interviews will elicit approximately 60 items across 10 domains; 4) 10 patient and clinician interviews will test acceptability and understanding. Qualitative data will be analysed using thematic content analysis.To develop the PIRT 1) individual and then combined patient and clinician focus groups will provide guidance for the development of three potential reporting tools; 2) nine wards across three hospital directorates will pilot each of the tools for three months. The best performing tool will be identified from the frequency, volume and quality of reports. The validity of both measures will be tested. 300 patients will be asked to complete the PMOS and PIRT during their stay in hospital. A sub-sample (N = 50) will complete the PMOS again one week later. Health professionals in participating wards will also be asked to complete the AHRQ safety culture questionnaire. Case notes for all patients will be reviewed. The psychometric properties of the PMOS will be assessed and a final valid and reliable version developed. Concurrent validity for the PIRT will be assessed by comparing reported incidents with those identified from case note review and the existing staff reporting scheme. In a subsequent study these tools will be used to provide information to wards/units about their priorities for patient safety. A patient panel will provide steering to the research. DISCUSSION: The PMOS and PIRT aim to provide a reliable means of eliciting patient views about patient safety. Both interventions are likely to have relevance and practical utility for all NHS hospital trusts.

BACKGROUND: Measuring the quality of care for people using neuro-rehabilitation services is a complex area requiring reliable methods that account for variable communication abilities/cognitive functioning. Dementia Care Mapping (DCM) is an observational method widely used in dementia care to improve person-centred care, which may be usefully applied to neuro-rehabilitation settings. Evaluation is vital to determine the tool's acceptability in this setting. PURPOSE: To explore the views of staff/patients regarding whether the use of DCM is acceptable in a neuro-rehabilitation setting. METHOD: DCM was conducted on an acute neuro-rehabilitation ward. Q-methodology, a technique for extracting subjective opinions, was used with 23 staff and 10 patients on the ward to evaluate the acceptability of DCM. RESULTS: Factor analysis was performed separately for staff and patient Q-sorts. Each found a "consensus" factor where all participants indicated positive acceptability for the use of DCM. Further exploratory factors indicated that some staff/patients had additional views/concerns that were not captured by the first consensus factor. CONCLUSIONS: The results from this preliminary study are promising and indicate that DCM is potentially an acceptable tool to use in acute neuro-rehabilitation. Further research is needed to explore the acceptability of this tool more widely across neuro-rehabilitation settings. IMPLICATIONS FOR REHABILITATION: Person-centred care is widely acknowledged as being important in all care settings, including neurorehabilitation. Dementia Care Mapping was deemed to be an acceptable approach for improving the quality of person-centred care on the basis of the views of staff and patients in a neurorehabilitation ward. Dementia Care Mapping, with adaptations for neurorehabilitation settings, successfully provides an acceptable framework for measuring and improving the quality of person-centred care in this setting.

Prognosis in COPD is poor and many patients perceive shortcomings in the education they receive about aspects of their condition. This study explores the experiences of patients with COPD, particularly fears surrounding death and dying. Semi-structured interviews were conducted with 21 patients with moderate or severe COPD. Findings revealed that patient understanding of COPD was poor, most patients were unaware of the progressive nature of the condition, and few were aware they could die of COPD. Despite this, patients often expressed concerns that their condition might deteriorate. Patients had particular concerns regarding the manner of their death; the overriding fear was dying of breathlessness or suffocation. None of the patients' had discussed these fears with a health care professional. Improved patient education is needed in order to improve patients understanding of their condition and prognosis. Open communication regarding death, as advocated in a palliative care approach, is also appropriate to alleviate patients fears and to allow them to make decisions regarding the management of their care at the end of life.

Person-centred care (PCC) is recommended when working with patients with neurological difficulties. Despite this, to date there has been no appropriate methodology for assessing or developing PCC in neurorehabilitation settings. Dementia Care Mapping (DCM) is a well-established tool for assessing and developing PCC in dementia settings and the current study investigated the feasibility of applying DCM on an acute neurorehabilitation ward. DCM procedure and coding required minor adaptations for use in this setting and further recommended adaptations were subsequently identified. It was found that the DCM coding system was generally suitable and could identify strengths, weaknesses and areas for development in ward care. Q-methodology identified that staff views endorsed the feasibility of using DCM in neurorehabilitation, with staff reporting that they found DCM useful and relevant to their work. DCM could be further developed for this setting by amendments to the behaviour coding system, concept and coding of person-centred care, and a population-specific manual. DCM is a promising methodology to develop and promote PCC in neurorehabilitation.

Most research on partners' experiences of living with a person with MND is questionnaire-based with no qualitative study focusing on the period between diagnosis and end-of-life care. This study aimed to provide an in-depth qualitative exploration of the experience of living with, and caring for, a partner with MND. Semi-structured interviews were conducted with eight individuals, and transcripts analysed from an interpretative phenomenological perspective. Two main themes were derived. 'Impact on life' included having concern for partner's safety, having social restrictions, being continually tired, struggling with anger and frustration, loss of intimacy and uncertainty around the future; while 'Adjusting to the situation' included trying to be strong, retaining a sense of normality, appreciation of specialist services, adopting a problem-solving approach, living day to day and ability to remain positive. In conclusion, experiences of stress and loss are illustrated in this sample of partners of those with MND, and it is suggested both these aspects should be integrated into understanding of carers' experiences. Carers appear to inhibit their grief in order to appear strong. Greater understanding of the consequences of this would help in providing appropriate emotional support.

BACKGROUND: Qualitative research has suggested that spousal carers of someone with dementia differ in terms of whether they perceive their relationship with that person as continuous with the premorbid relationship or as radically different, and that a perception of continuity may be associated with more person-centered care and the experience of fewer of the negative emotions associated with caring. The aim of the study was to develop and evaluate a quantitative measure of the extent to which spousal carers perceive the relationship to be continuous. METHODS: An initial pool of 42 questionnaire items was generated on the basis of the qualitative research about relationship continuity. These were completed by 51 spousal carers and item analysis was used to reduce the pool to 23 items. The retained items, comprising five subscales, were then administered to a second sample of 84 spousal carers, and the questionnaire's reliability, discriminative power, and validity were evaluated. RESULTS: The questionnaire showed good reliability: Cronbach's alpha for the full scale was 0.947, and test-retest reliability was 0.932. Ferguson's delta was 0.987, indicating good discriminative power. Evidence of construct validity was provided by predicted patterns of subscale correlations with the Closeness and Conflict Scale and the Marwit-Meuser Caregiver Grief Inventory. CONCLUSION: Initial psychometric evaluation of the measure was encouraging. The measure provides a quantitative means of investigating ideas from qualitative research about the role of relationship continuity in influencing how spousal carers provide care and how they react emotionally to their caring role.

OBJECTIVE: Metamemory is integral for strategizing about memory intentions. This study investigated the prospective memory (PM) deficit in Parkinson's disease (PD) from a metamemory viewpoint, with the aim of examining whether metamemory deficits might contribute to PM deficits in PD. METHOD: Sixteen patients with PD and 16 healthy older adult controls completed a time-based PM task (initiating a key press at two specified times during an ongoing task), and an event-based PM task (initiating a key press in response to animal words during an ongoing task). To measure metamemory participants were asked to predict and postdict their memory performance before and after completing the tasks, as well as complete a self-report questionnaire regarding their everyday memory function. RESULTS: The PD group had no impairment, relative to controls, on the event-based task, but had prospective (initiating the key press) and retrospective (recalling the instructions) impairments on the time-based task. The PD group also had metamemory impairments on the time-based task; they were inaccurate at predicting their performance before doing the task but, became accurate when making postdictions. This suggests impaired metamemory knowledge but preserved metamemory monitoring. There were no group differences regarding PD patients' self-reported PM performance on the questionnaire. CONCLUSIONS: These results reinforce previous findings that PM impairments in PD are dependent on task type. Several accounts of PM failures in time-based tasks are presented, in particular, ways in which mnemonic and metacognitive deficits may contribute to the difficulties observed on the time-based task.

We report patients, family members and health professionals' experiences of Chronic Obstructive Pulmonary Disease (COPD) in Barnsley, northern England. A widespread belief that having "bad lungs" is part of normal ageing shapes everyday experience in this former mining town. People with COPD, and their families, link its cause to the areas industrial past and are sceptical of a medical orthodoxy that attributes cause to smoking. They doubt doctors' objectivity. Encouraging uptake of care, promoting smoking cessation, and developing care planning would be enhanced by engaging with the significance of place in the social narrative of health evident in this town.