Challenges and barriers to optimising sedation in intensive care: a qualitative study in eight Scottish intensive care units.

OBJECTIVES: Various strategies to promote light sedation are highly recommended in recent guidelines, as deep sedation is associated with suboptimum patient outcomes. Yet, the challenges met by clinicians in delivering high-quality analgosedation is rarely addressed. As part of the evaluation of a cluster-randomised quality improvement trial in eight Scottish intensive care units (ICUs), we aimed to understand the challenges to optimising sedation in the Scottish ICU settings prior to the trial. This article reports on the findings. DESIGN: A qualitative exploratory design: We conducted focus groups (FG) with clinicians during the preintervention period. Setting and participants: Eight Scottish ICUs. Nurses, physiotherapists and doctors working in each ICU volunteered to participate. FG were recorded and verbatim transcribed and inserted in NVivo V.10 for analysis. Qualitative thematic analysis was undertaken to develop emergent themes from the patterns identified in relation to sedation practice. Ethical approval was secured by Scotland A Research ethics committee. RESULTS: Three themes emerged from the inductive analysis: (a) a recent shift in sedation practice, (b) uncertainty in decision-making and (c) system-level factors including the ICU environment, organisational factors and educational gaps. Clinicians were challenged daily to manage agitated or difficult-to-sedate patients in the era of a progressive mantra of 'just sedate less' imposed by the pain-agitation-delirium guidelines. CONCLUSIONS: The current implementation of guidelines does not support behaviour change strategies to allow a patient-focused approach to sedation management, which obstructs optimum sedation-analgesia management. Recognition of the various challenges when mandating less sedation needs to be considered and novel sedation-analgesia strategies should allow a system-level approach to improve sedation-analgesia quality. DESIST REGISTRATION NUMBER: NCT01634451.

'Intensive care unit survivorship' - a constructivist grounded theory of surviving critical illness.

AIMS AND OBJECTIVES: To theorise intensive care unit survivorship after a critical illness based on longitudinal qualitative data. BACKGROUND: Increasingly, patients survive episodes of critical illness. However, the short- and long-term impact of critical illness includes physical, psychological, social and economic challenges long after hospital discharge. An appreciation is emerging that care needs to extend beyond critical illness to enable patients to reclaim their lives postdischarge with the term 'survivorship' being increasingly used in this context. What constitutes critical illness survivorship has, to date, not been theoretically explored. DESIGN: Longitudinal qualitative and constructivist grounded theory. Interviews (n = 46) with 17 participants were conducted at four time points: (1) before discharge from hospital, (2) four to six weeks postdischarge, (3) six months and (4) 12 months postdischarge across two adult intensive care unit setting. METHOD: Individual face-to-face interviews. Data analysis followed the principles of Charmaz's constructivist grounded theory. 'Intensive care unit survivorship' emerged as the core category and was theorised using concepts such as status passages, liminality and temporality to understand the various transitions participants made postcritical illness. FINDINGS: Intensive care unit survivorship describes the unscheduled status passage of falling critically ill and being taken to the threshold of life and the journey to a life postcritical illness. Surviving critical illness goes beyond recovery; surviving means 'moving on' to life postcritical illness. 'Moving on' incorporates a redefinition of self that incorporates any lingering intensive care unit legacies and being in control of one's life again. RELEVANCE TO CLINICAL PRACTICE: For healthcare professionals and policymakers, it is important to realise that recovery and transitioning through to survivorship happen within an individual's time frame, not a schedule imposed by the healthcare system. Currently, there are no care pathways or policies in place for critical illness survivors that would support intensive care unit survivors and their families in the transitions to survivorship.

Patient and carer experience of hospital-based rehabilitation from intensive care to hospital discharge: mixed methods process evaluation of the RECOVER randomised clinical trial.

OBJECTIVES: To explore and compare patient/carer experiences of rehabilitation in the intervention and usual care arms of the RECOVER trial (ISRCTN09412438); a randomised controlled trial of a complex intervention of post-intensive care unit (ICU) acute hospital-based rehabilitation following critical illness. DESIGN: Mixed methods process evaluation including comparison of patients' and carers' experience of usual care versus the complex intervention. We integrated and compared quantitative data from a patient experience questionnaire (PEQ) with qualitative data from focus groups with patients and carers. SETTING: Two university-affiliated hospitals in Scotland. PARTICIPANTS: 240 patients discharged from ICU who required ≥48 hours of mechanical ventilation were randomised into the trial (120 per trial arm). Exclusion criteria comprised: primary neurologic diagnosis, palliative care, current/planned home ventilation and age <18 years. 182 patients completed the PEQ at 3 months postrandomisation. 22 participants (14 patients and 8 carers) took part in focus groups (2 per trial group) at >3 months postrandomisation. INTERVENTIONS: A complex intervention of post-ICU acute hospital rehabilitation, comprising enhanced physiotherapy, nutritional care and information provision, case-managed by dedicated rehabilitation assistants (RAs) working within existing ward-based clinical teams, delivered between ICU discharge and hospital discharge. Comparator was usual care. OUTCOME MEASURES: A novel PEQ capturing patient-reported aspects of quality care. RESULTS: The PEQ revealed statistically significant between-group differences across 4 key intervention components: physiotherapy (p=0.039), nutritional care (p=0.038), case management (p=0.045) and information provision (p<0.001), suggesting greater patient satisfaction in the intervention group. Focus group data strongly supported and helped explain these findings. Specifically, case management by dedicated RAs facilitated greater access to physiotherapy, nutritional care and information that cut across disciplinary boundaries and staffing constraints. Patients highly valued its individualisation according to their needs, abilities and preferences. CONCLUSIONS: Case management by dedicated RAs improves patients' experiences of post-ICU hospital-based rehabilitation and increases perceived quality of care. TRIAL REGISTRATION NUMBER: ISRCTN09412438.

Understanding nurses' decision-making when managing weaning from mechanical ventilation: a study of novice and experienced critical care nurses in Scotland and Greece.

AIM AND OBJECTIVES: To examine how nurses collect and use cues from respiratory assessment to inform their decisions as they wean patients from ventilatory support. BACKGROUND: Prompt and accurate identification of the patient's ability to sustain reduction of ventilatory support has the potential to increase the likelihood of successful weaning. Nurses' information processing during the weaning from mechanical ventilation has not been well-described. DESIGN: A descriptive ethnographic study exploring critical care nurses' decision-making processes when weaning mechanically ventilated patients from ventilatory support in the real setting. METHODS: Novice and expert Scottish and Greek nurses from two tertiary intensive care units were observed in real practice of weaning mechanical ventilation and were invited to participate in reflective interviews near the end of their shift. Data were analysed thematically using concept maps based on information processing theory. Ethics approval and informed consent were obtained. RESULTS: Scottish and Greek critical care nurses acquired patient-centred objective physiological and subjective information from respiratory assessment and previous knowledge of the patient, which they clustered around seven concepts descriptive of the patient's ability to wean. Less experienced nurses required more encounters of cues to attain the concepts with certainty. Subjective criteria were intuitively derived from previous knowledge of patients' responses to changes of ventilatory support. All nurses used focusing decision-making strategies to select and group cues in order to categorise information with certainty and reduce the mental strain of the decision task. CONCLUSIONS: Nurses used patient-centred information to make a judgment about the patients' ability to wean. Decision-making strategies that involve categorisation of patient-centred information can be taught in bespoke educational programmes for mechanical ventilation and weaning. RELEVANCE TO CLINICAL PRACTICE: Advanced clinical reasoning skills and accurate detection of cues in respiratory assessment by critical care nurses will ensure optimum patient management in weaning mechanical ventilation.

Does sharing the electronic health record in the consultation enhance patient involvement? A mixed-methods study using multichannel video recording and in-depth interviews in primary care.

BACKGROUND: Sharing the electronic health-care record (EHR) during consultations has the potential to facilitate patient involvement in their health care, but research about this practice is limited. METHODS: We used multichannel video recordings to identify examples and examine the practice of screen-sharing within 114 primary care consultations. A subset of 16 consultations was viewed by the general practitioner and/or patient in 26 reflexive interviews. Screen-sharing emerged as a significant theme and was explored further in seven additional patient interviews. Final analysis involved refining themes from interviews and observation of videos to understand how screen-sharing occurred, and its significance to patients and professionals. RESULTS: Eighteen (16%) of 114 videoed consultations involved instances of screen-sharing. Screen-sharing occurred in six of the subset of 16 consultations with interviews and was a significant theme in 19 of 26 interviews. The screen was shared in three ways: 'convincing' the patient of a diagnosis or treatment; 'translating' between medical and lay understandings of disease/medication; and by patients 'verifying' the accuracy of the EHR. However, patients and most GPs perceived the screen as the doctor's domain, not to be routinely viewed by the patient. CONCLUSIONS: Screen-sharing can facilitate patient involvement in the consultation, depending on the way in which sharing comes about, but the perception that the record belongs to the doctor is a barrier. To exploit the potential of sharing the screen to promote patient involvement, there is a need to reconceptualise and redesign the EHR.

Increased Hospital-Based Physical Rehabilitation and Information Provision After Intensive Care Unit Discharge: The RECOVER Randomized Clinical Trial.

IMPORTANCE: Critical illness results in disability and reduced health-related quality of life (HRQOL), but the optimum timing and components of rehabilitation are uncertain. OBJECTIVE: To evaluate the effect of increasing physical and nutritional rehabilitation plus information delivered during the post-intensive care unit (ICU) acute hospital stay by dedicated rehabilitation assistants on subsequent mobility, HRQOL, and prevalent disabilities. DESIGN, SETTING, AND PARTICIPANTS: A parallel group, randomized clinical trial with blinded outcome assessment at 2 hospitals in Edinburgh, Scotland, of 240 patients discharged from the ICU between December 1, 2010, and January 31, 2013, who required at least 48 hours of mechanical ventilation. Analysis for the primary outcome and other 3-month outcomes was performed between June and August 2013; for the 6- and 12-month outcomes and the health economic evaluation, between March and April 2014. INTERVENTIONS: During the post-ICU hospital stay, both groups received physiotherapy and dietetic, occupational, and speech/language therapy, but patients in the intervention group received rehabilitation that typically increased the frequency of mobility and exercise therapies 2- to 3-fold, increased dietetic assessment and treatment, used individualized goal setting, and provided greater illness-specific information. Intervention group therapy was coordinated and delivered by a dedicated rehabilitation practitioner. MAIN OUTCOMES AND MEASURES: The Rivermead Mobility Index (RMI) (range 0-15) at 3 months; higher scores indicate greater mobility. Secondary outcomes included HRQOL, psychological outcomes, self-reported symptoms, patient experience, and cost-effectiveness during a 12-month follow-up (completed in February 2014). RESULTS: Median RMI at randomization was 3 (interquartile range [IQR], 1-6) and at 3 months was 13 (IQR, 10-14) for the intervention and usual care groups (mean difference, -0.2 [95% CI, -1.3 to 0.9; P = .71]). The HRQOL scores were unchanged by the intervention (mean difference in the Physical Component Summary score, -0.1 [95% CI, -3.3 to 3.1; P = .96]; and in the Mental Component Summary score, 0.2 [95% CI, -3.4 to 3.8; P = .91]). No differences were found for self-reported symptoms of fatigue, pain, appetite, joint stiffness, or breathlessness. Levels of anxiety, depression, and posttraumatic stress were similar, as were hand grip strength and the timed Up & Go test. No differences were found at the 6- or 12-month follow-up for any outcome measures. However, patients in the intervention group reported greater satisfaction with physiotherapy, nutritional support, coordination of care, and information provision. CONCLUSIONS AND RELEVANCE: Post-ICU hospital-based rehabilitation, including increased physical and nutritional therapy plus information provision, did not improve physical recovery or HRQOL, but improved patient satisfaction with many aspects of recovery. TRIAL REGISTRATION: isrctn.com Identifier: ISRCTN09412438.

A rehabilitation intervention to promote physical recovery following intensive care: a detailed description of construct development, rationale and content together with proposed taxonomy to capture processes in a randomised controlled trial.

BACKGROUND: Increasing numbers of patients are surviving critical illness, but survival may be associated with a constellation of physical and psychological sequelae that can cause ongoing disability and reduced health-related quality of life. Limited evidence currently exists to guide the optimum structure, timing, and content of rehabilitation programmes. There is a need to both develop and evaluate interventions to support and expedite recovery during the post-ICU discharge period. This paper describes the construct development for a complex rehabilitation intervention intended to promote physical recovery following critical illness. The intervention is currently being evaluated in a randomised trial (ISRCTN09412438; funder Chief Scientists Office, Scotland). METHODS: The intervention was developed using the Medical Research Council (MRC) framework for developing complex healthcare interventions. We ensured representation from a wide variety of stakeholders including content experts from multiple specialties, methodologists, and patient representation. The intervention construct was initially based on literature review, local observational and audit work, qualitative studies with ICU survivors, and brainstorming activities. Iterative refinement was aided by the publication of a National Institute for Health and Care Excellence guideline (No. 83), publicly available patient stories (Healthtalkonline), a stakeholder event in collaboration with the James Lind Alliance, and local piloting. Modelling and further work involved a feasibility trial and development of a novel generic rehabilitation assistant (GRA) role. Several rounds of external peer review during successive funding applications also contributed to development. RESULTS: The final construct for the complex intervention involved a dedicated GRA trained to pre-defined competencies across multiple rehabilitation domains (physiotherapy, dietetics, occupational therapy, and speech/language therapy), with specific training in post-critical illness issues. The intervention was from ICU discharge to 3 months post-discharge, including inpatient and post-hospital discharge elements. Clear strategies to provide information to patients/families were included. A detailed taxonomy was developed to define and describe the processes undertaken, and capture them during the trial. The detailed process measure description, together with a range of patient, health service, and economic outcomes were successfully mapped on to the modified CONSORT recommendations for reporting non-pharmacologic trial interventions. CONCLUSIONS: The MRC complex intervention framework was an effective guide to developing a novel post-ICU rehabilitation intervention. Combining a clearly defined new healthcare role with a detailed taxonomy of process and activity enabled the intervention to be clearly described for the purpose of trial delivery and reporting. These data will be useful when interpreting the results of the randomised trial, will increase internal and external trial validity, and help others implement the intervention if the intervention proves clinically and cost effective.

Beyond professional boundaries: relationships and resources in health services' modernisation in England and Wales.

This article draws on theories of social capital to understand ways in which the negotiation of professional boundaries among healthcare professionals relates to health services change. We compared reconfiguration of respiratory services in four primary care organisations (PCOs) in England and Wales. Service development was observed over 18 months during a period of market-based reforms. Serial interviews with key clinicians and managers from hospital trusts and PCOs followed progress as they collaborated around, negotiated and contested developments. We found that professionals work to protect and expand their claims to work territory. Remuneration and influence was a catalyst for development and was also necessary to establish professional boundaries that underpinned novel service arrangements. Conflict and contest was less of a threat to change than a lack of engagement in boundary work because this engagement produced relationships based on forming shifting professional allegiances across and along boundaries, and these relationships mediated the social capital needed to accomplish change. However, this process also (re)produced inequalities among professions and prevented some groups from participation in service change.

Difficult to wean patients: cultural factors and their impact on weaning decision-making.

AIMS AND OBJECTIVES: To examine the elements of the intensive care environment and consider the impact on nurses' involvement in decision-making when weaning from mechanical ventilation. BACKGROUND: Optimal management of difficult to wean patients requires the dynamic collaboration of all clinicians and the contribution of their knowledge and skills. The introduction of weaning protocols has increased nurses' input in decision-making, but there are various elements of the decision environment that impact on their involvement, which have been given little consideration. DESIGN: Ethnography was used as the research design for this study. METHODS: Fieldwork took place in two tertiary hospitals in Greece and Scotland for five months each to unveil clinicians' behaviour and interactions during the weaning practice. Observation was based on the weaning process of 10 Scottish and 9 Greek long-term ventilated patients. Semi-structured interviews followed with nurses (n = 33) and doctors (n = 9) in both settings to understand nurses' perceived involvement in weaning decision-making. Thematic analysis of interviews and field notes followed using the Qualitative Data Analysis software NVivo. Clinicians' participation was voluntary. RESULTS: The main themes identified were the (1) organisation of the units (time and structure of the ward rounds, staff levels and staff allocation system), (2) the inter- professional relationships, (3) the ownership and accountability in weaning decision-making and (4) the role of the weaning protocols. These elements described the culture of the ICUs and defined nurses' role in weaning decision-making. CONCLUSIONS: Clinical decision-making is a multi-dynamic process specifically in complex clinical situations such as weaning from mechanical ventilation. This paper suggests that weaning practice should be considered in relation to the elements of the clinical environment to provide an individualised and patient-centred weaning approach. RELEVANCE TO CLINICAL PRACTICE: Methods to enhance nurses' role in teamwork and collaborative decision-making are suggested.

Intensive care survivors' experiences of ward-based care: Meleis' theory of nursing transitions and role development among critical care outreach services.

AIMS AND OBJECTIVES: To explore the psychosocial needs of patients discharged from intensive care, the extent to which they are captured using existing theory on transitions in care and the potential role development of critical care outreach, follow-up and liaison services. BACKGROUND: Intensive care patients are at an increased risk of adverse events, deterioration or death following ward transfer. Nurse-led critical care outreach, follow-up or liaison services have been adopted internationally to prevent these potentially avoidable sequelae. The need to provide patients with psychosocial support during the transition to ward-based care has also been identified, but the evidence base for role development is currently limited. DESIGN AND METHODS: Twenty participants were invited to discuss their experiences of ward-based care as part of a broader study on recovery following prolonged critical illness. Psychosocial distress was a prominent feature of their accounts, prompting secondary data analysis using Meleis et al.'s mid-range theory on experiencing transitions. RESULTS: Participants described a sense of disconnection in relation to profound debilitation and dependency and were often distressed by a perceived lack of understanding, indifference or insensitivity among ward staff to their basic care needs. Negotiating the transition between dependence and independence was identified as a significant source of distress following ward transfer. Participants varied in the extent to which they were able to express their needs and negotiate recovery within professionally mediated boundaries. CONCLUSION: These data provide new insights into the putative origins of the psychosocial distress that patients experience following ward transfer. RELEVANCE TO CLINICAL PRACTICE: Meleis et al.'s work has resonance in terms of explicating intensive care patients' experiences of psychosocial distress throughout the transition to general ward-based care, such that the future role development of critical care outreach, follow-up and liaison services may be more theoretically informed.

Parenting support for families with young children - a public health, user-focused study undertaken in a semi-rural area of Scotland.

AIMS AND OBJECTIVES: To work with parents and public health nurses (health visitors), to identify and design a range of public health interventions to provide support to parents of young children. BACKGROUND: In the UK, only vulnerable families are now eligible for pro-active health visiting interventions on an individual family basis beyond the early days. Public health approaches are recommended for the majority of families who are not eligible for one-to-one professional support. DESIGN: Focus groups were carried out with parents of young children, health visitors and other professionals working with them. METHODS: The study was carried out in a semi-rural area of Scotland, consisting of a small town, and the surrounding rural area, including one area of deprivation. The area is served by a team consisting of six health visitors and one health assistant, based in two health centres in the area. Nineteen parents, five members of the health visiting team and 11 other professionals from health, education and social work took part via an invitation to contact the research team. RESULTS: The needs of parents identified by both parents and professionals could best be met by social support, with skilled facilitation and suitable resources. The resolution of tensions between caseload-based and population-based health visiting, as well as the management of the tensions inherent in these changes, seems to be vital in order to implement these approaches. Many parents would like information made available online. CONCLUSIONS: Services to support families with young children need to be designed from the perspectives of parents and their needs. RELEVANCE TO CLINICAL PRACTICE: Services need to be set up in partnership with parents to provide them with information and access to peer and professional support, using public health approaches. Multiagency working, including among senior managers, may be the most effective way of providing this support.

A randomised controlled trial evaluating a rehabilitation complex intervention for patients following intensive care discharge: the RECOVER study.

INTRODUCTION: Patients who survive an intensive care unit admission frequently suffer physical and psychological morbidity for many months after discharge. Current rehabilitation pathways are often fragmented and little is known about the optimum method of promoting recovery. Many patients suffer reduced quality of life. METHODS AND ANALYSIS: The authors plan a multicentre randomised parallel group complex intervention trial with concealment of group allocation from outcome assessors. Patients who required more than 48 h of mechanical ventilation and are deemed fit for intensive care unit discharge will be eligible. Patients with primary neurological diagnoses will be excluded. Participants will be randomised into one of the two groups: the intervention group will receive standard ward-based care delivered by the NHS service with additional treatment by a specifically trained generic rehabilitation assistant during ward stay and via telephone contact after hospital discharge and the control group will receive standard ward-based care delivered by the current NHS service. The intervention group will also receive additional information about their critical illness and access to a critical care physician. The total duration of the intervention will be from randomisation to 3 months postrandomisation. The total duration of follow-up will be 12 months from randomisation for both groups. The primary outcome will be the Rivermead Mobility Index at 3 months. Secondary outcomes will include measures of physical and psychological morbidity and function, quality of life and survival over a 12-month period. A health economic evaluation will also be undertaken. Groups will be compared in relation to primary and secondary outcomes; quantitative analyses will be supplemented by focus groups with patients, carers and healthcare workers. ETHICS AND DISSEMINATION: Consent will be obtained from patients and relatives according to patient capacity. Data will be analysed according to a predefined analysis plan. TRIAL REGISTRATION: The trial is registered as ISRCTN09412438 and funded by the Chief Scientist Office, Scotland.

A longitudinal qualitative exploration of healthcare and informal support needs among survivors of critical illness: the RELINQUISH protocol.

INTRODUCTION AND BACKGROUND: Survival following critical illness is associated with a significant burden of physical, emotional and psychosocial morbidity. Recovery can be protracted and incomplete, with important and sustained effects upon everyday life, including family life, social participation and return to work. In stark contrast with other critically ill patient groups (eg, those following cardiothoracic surgery), there are comparatively few interventional studies of rehabilitation among the general intensive care unit patient population. This paper outlines the protocol for a sub study of the RECOVER study: a randomised controlled trial evaluating a complex intervention of enhanced ward-based rehabilitation for patients following discharge from intensive care. METHODS AND ANALYSIS: The RELINQUISH study is a nested longitudinal, qualitative study of family support and perceived healthcare needs among RECOVER participants at key stages of the recovery process and at up to 1 year following hospital discharge. Its central premise is that recovery is a dynamic process wherein patients' needs evolve over time. RELINQUISH is novel in that we will incorporate two parallel strategies into our data analysis: (1) a pragmatic health services-oriented approach, using an a priori analytical construct, the 'Timing it Right' framework and (2) a constructivist grounded theory approach which allows the emergence of new themes and theoretical understandings from the data. We will subsequently use Qualitative Health Needs Assessment methodology to inform the development of timely and responsive healthcare interventions throughout the recovery process. ETHICS AND DISSEMINATION: The protocol has been approved by the Lothian Research Ethics Committee (protocol number HSRU011). The study has been added to the UK Clinical Research Network Database (study ID. 9986). The authors will disseminate the findings in peer reviewed publications and to relevant critical care stakeholder groups.

The case study approach.

The case study approach allows in-depth, multi-faceted explorations of complex issues in their real-life settings. The value of the case study approach is well recognised in the fields of business, law and policy, but somewhat less so in health services research. Based on our experiences of conducting several health-related case studies, we reflect on the different types of case study design, the specific research questions this approach can help answer, the data sources that tend to be used, and the particular advantages and disadvantages of employing this methodological approach. The paper concludes with key pointers to aid those designing and appraising proposals for conducting case study research, and a checklist to help readers assess the quality of case study reports.

From awareness to involvement? A qualitative study of respiratory patients' awareness of health service change.

BACKGROUND Despite the policy rhetoric, patient involvement in health service decisions remains limited. Highlighted barriers include a concern that most patients are unable to see beyond personal aspects of their care in order to contribute meaningfully to health service development, and a perception that professionals do not welcome patient involvement. OBJECTIVES We aimed to explore respiratory patients' awareness of changes in local health service provision and provide insight into health professionals' attitudes to engaging patients. METHODS Nested within an ethnographic study of health service reconfiguration, we recruited 31 patients with a range of respiratory diseases from four case study areas in England and Wales. Data from telephone interviews, illness diaries and focus groups with patients, and interviews with health professionals and managers were transcribed and analysed using the Framework approach. RESULTS Participants were not only aware of trends in health service provision (e.g. emergence of new professional roles, shift from secondary to primary care) but interpreted changes in the light of local and national events. Despite this awareness, none of the patients was formally involved in service development, though some contributed to local voluntary groups. Professionals generally welcomed the need for patients' views to be heard. DISCUSSION AND CONCLUSIONS Our data give grounds for optimism. Patients are aware of and interested in a broad range of health-related issues. Professionals' motivation to involve patients in service development may be underestimated. Although practical obstacles remain, our findings should encourage the ongoing search for effective models of promoting patient engagement in health-care services.

From support to boundary: a qualitative study of the border between self-care and professional care.

OBJECTIVE: While healthcare systems globally are promoting self-care, patients' perceptions of the policy shift remain relatively unexplored. Our qualitative study explored how organisation of care shaped patients' perceptions and experiences of self-care in dealing with their respiratory illnesses. METHODS: We recruited 31 people, representing a range of ages and respiratory conditions and generated data using illness diaries, telephone interviews and focus group discussions. Data were transcribed, analysed and triangulated using the framework approach. RESULTS: Patients were aware of the increasing focus on self-care, but felt that the term was incongruous as it described what they were already doing. While many respondents appreciated increased clinical responsibility some felt 'abandoned' by professionals. To be active partners in care, they needed flexible access to trusted healthcare professionals who respected patients' knowledge about their condition and preferences for management. CONCLUSION: The shift to self-care needs to be underpinned by a whole system change. Professionals need communication skills to engage with patients as partners in care, working within systems that offer flexible access to supportive care. PRACTICE IMPLICATIONS: Systems of care for people with long-term conditions need to ensure flexible access between self-care and professional support. Simplification of systems, clear sign-posting and co-ordination of individual patient care by a key trusted professional are essential.

Reconciling the perspective of practitioner and service user: findings from The Aphasia in Scotland study.

BACKGROUND: It is widely accepted that service users should be actively involved in new service developments, but there remain issues about how best to consult with them and how to reconcile their views with those of service providers. AIMS: This paper uses data from The Aphasia in Scotland study, set up by NHS Quality Improvement Scotland to identify the direction of the development of services for people with aphasia in Scotland. It examines the views both of those who provide and of those who receive those services. METHODS & PROCEDURES: The study integrated findings from a questionnaire to all speech and language therapists treating people with aphasia across Scotland with findings from focus groups with service users and aphasia practitioners. OUTCOMES & RESULTS: Three themes were identified: (1) public and professional awareness of the impact of aphasia on the individual and their family; (2) current service provision and gaps in services; and (3) directions for the future development of services and barriers to change. Although the impact of aphasia is well recognized amongst most professionals (that is, not just speech and language therapists), considerable concern was expressed about the level of knowledge amongst professionals who do not specialize in stroke care and about public awareness of aphasia. Service providers indicated a shift in the model of service delivery of which the service users were largely unaware. Although the majority of speech and language therapists spend most of their time providing one-to-one therapy, and this is valued by service users, there is undoubtedly an emerging shift towards a focus on broader social function and the inclusion of the person with aphasia in supportive social networks. This creates tensions because of the existing pressure for individualized models of delivery. Concern was expressed by practitioners, although not echoed by patients, about the transition from the acute sector to primary care. Practitioners also expressed concern about the introduction of more recent services like NHS 24 and e-health initiatives, which rely on means of communication that may be particularly challenging for people with aphasia. CONCLUSIONS & IMPLICATIONS: The findings from this study indicate that although there are clearly common perspectives, the views of people with aphasia about services do not necessarily coincide with those of service providers. This is an important consideration when initiating consultation and highlights the need for clarity on the part of practitioners in identifying the aims and objectives of their services as far as people with aphasia are concerned.