The context of coping: a qualitative exploration of underlying inequalities that influence health services support for people living with long-term conditions.

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long-term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on 'self-management', focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long-term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political-economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.

Action to Support Practices Implement Research Evidence (ASPIRE): protocol for a cluster-randomised evaluation of adaptable implementation packages targeting 'high impact' clinical practice recommendations in general practice.

BACKGROUND: There are recognised gaps between evidence and practice in general practice, a setting which provides particular challenges for implementation. We earlier screened clinical guideline recommendations to derive a set of 'high impact' indicators based upon criteria including potential for significant patient benefit, scope for improved practice and amenability to measurement using routinely collected data. We aim to evaluate the effectiveness and cost-effectiveness of a multifaceted, adaptable intervention package to implement four targeted, high impact recommendations in general practice. METHODS/DESIGN: The research programme Action to Support Practice Implement Research Evidence (ASPIRE) includes a pair of pragmatic cluster-randomised trials which use a balanced incomplete block design. Clusters are general practices in West Yorkshire, United Kingdom (UK), recruited using an 'opt-out' recruitment process. The intervention package adapted to each recommendation includes combinations of audit and feedback, educational outreach visits and computerised prompts with embedded behaviour change techniques selected on the basis of identified needs and barriers to change. In trial 1, practices are randomised to adapted interventions targeting either diabetes control or risky prescribing and those in trial 2 to adapted interventions targeting either blood pressure control in patients at risk of cardiovascular events or anticoagulation in atrial fibrillation. The respective primary endpoints comprise achievement of all recommended target levels of haemoglobin A1c (HbA1c), blood pressure and cholesterol in patients with type 2 diabetes, a composite indicator of risky prescribing, achievement of recommended blood pressure targets for specific patient groups and anticoagulation prescribing in patients with atrial fibrillation. We are also randomising practices to a fifth, non-intervention control group to further assess Hawthorne effects. Outcomes will be assessed using routinely collected data extracted 1 year after randomisation. Economic modelling will estimate intervention cost-effectiveness. A process evaluation involving eight non-trial practices will examine intervention delivery, mechanisms of action and unintended consequences. DISCUSSION: ASPIRE will provide 'real-world' evidence about the effects, cost-effectiveness and delivery of adapted intervention packages targeting high impact recommendations. By implementing our adaptable intervention package across four distinct clinical topics, and using 'opt-out' recruitment, our findings will provide evidence of wider generalisability. TRIAL REGISTRATION: ISRCTN91989345.

Perspectives from health, social care and policy stakeholders on the value of a single self-report outcome measure across long-term conditions: a qualitative study.

OBJECTIVES: To explore the views of a range of stakeholders regarding whether patient-reported outcome measures (PROMs) can be developed to measure key attributes of long-term conditions (LTCs) care in England, and the potential value of a single generic measure. DESIGN: Qualitative semistructured interview study, analysed using a framework approach. PARTICIPANTS AND SETTING: Interviews with 31 stakeholders from primary care, secondary care, social care, policy and patient-focused voluntary organisations in England. RESULTS: There was broad support for a single PROM that could be used to measure outcomes for patients with any LTCs in any health or social care setting. Interviewees identified three desired uses for a PROM: to improve the quality of individual care; to increase people's engagement in their own care; and to monitor the performance of services. Interviewees felt that a PROM for LTCs should incorporate a mixture of traditional and non-traditional domains, such as functioning, empowerment and social participation, and be codesigned with patients and professional end-users. Stakeholders emphasised the need for a PROM to be feasible for practical implementation at the individual clinical level as a first priority. A number of concerns and potential problems were identified in relation to the application and interpretation of an LTC PROM. CONCLUSIONS: This study has demonstrated support for a single self-report outcome measure that reflects the priorities of people with LTCs, if such a measure can be shown to be meaningful and useful at the individual level. People with LTCs and professional end-users in health and social care should be involved in the development and evaluation of such a measure.

A qualitative study of patient choices in using emergency health care for long-term conditions: the importance of candidacy and recursivity.

OBJECTIVE: We aimed to explore how patients with long-term conditions choose between available healthcare options during a health crisis. METHODS: Patients in North-West England with one or more of four long-term conditions were invited to take part in a questionnaire cohort study of healthcare use. Semi-structured interviews were conducted with a sub-sample of fifty consenting patients. Data were analysed qualitatively, using a framework approach. RESULTS: Patients described using emergency care only in response to perceived urgent need. Their judgements about urgency of need, and their choices about what services to use were guided by previous experiences of care, particularly how accessible services were and the perceived expertise of practitioners. CONCLUSION: Recursivity and candidacy provide a framework for understanding patient decision-making around emergency care use. Patients were knowledgeable and discriminating users of services, drawing on experiential knowledge of healthcare to choose between services. Their sense of 'candidacy' for specific emergency care services, was recursively shaped by previous experiences. PRACTICE IMPLICATIONS: Strategies that emphasise the need to educate patients about healthcare services use alone are unlikely to change care-seeking behaviour. Practitioners need to modify care experiences that recursively shape patients' judgements of candidacy and their perceptions of accessible expertise in alternative services.

Service user perspectives on psychosocial assessment following self-harm and its impact on further help-seeking: a qualitative study.

BACKGROUND: Psychosocial assessment is a central aspect of managing self-harm in hospitals, designed to encompass needs and risk, and to lead to further care. However, little is known about service user experiences of assessment, or what aspects of assessment service users value. The aim of this study was to explore service user experiences of assessment, and examine the short-term and longer-term meanings of assessment for service users. METHOD: Interpretative phenomenological analysis was applied to 13 interviews with service users following hospital attendance, and seven follow-up interviews conducted 3 months later. RESULTS: Few participants had a clear understanding of assessment's purpose. Assessment had the potential to promote or challenge hope, dependent on whether it was experienced as accepting or critical. If follow-up care did not materialise, this reinforced hopelessness and promoted disengagement from services. LIMITATIONS: The study sample was small and the participants heterogeneous in terms of self-harm history, method and intent, which may limit the transferability of the findings to other settings. Only self-report data on clinical diagnosis were collected. CONCLUSIONS: This was the first study to utilise an in-depth qualitative approach to investigate service user experiences of assessment and follow-up. The findings suggest that re-conceptualising psychosocial assessment as primarily an opportunity to engage service users therapeutically may consequently affect how health services are perceived. In order to maintain benefits established during the hospital experience, follow-up needs to be timely and integrated with assessment.