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This paper reflects on the value of diary methods in the context of a qualitative, longitudinal narrative inquiry exploring the higher education decision-making of further education students in England. Event-based diaries were used alongside interviews and focus groups over a 14-month period to gain in-depth insights into the reasons and influences informing their decision-making trajectories. I explore the challenges, successful approaches and advantages of employing diary methods with young people in this context. Challenges consisted of maintaining participant engagement, which was overcome by combining methods and incorporating a reactive co-participatory element. Yet, a number of advantages emerged from participants' engagement with diary keeping which enhanced the richness of the data; this inspired deeper reflections on decision-making and influences and provided a private space for participants to disclose personal difficulties that could not be obtained via interviews. [ABSTRACT FROM AUTHOR]

Introduction: Healthcare professionals have development needs related to their consumption, use, and practice of clinical research. Little is known about these issues in mental health services specifically. Objectives: A survey of healthcare staff working in an NHS Mental Health and Disability Trust in England was conducted to describe research capacity and culture compared with previously reported samples, and to examine subgroup differences. Methods: An online questionnaire was utilized. The main measure was the Research Capacity and Culture tool comprising measures of individual's perceived research skills and of team and organizational research culture. Previous studies using the same measure were systematically identified, and pooled results, weighted by sample size, were calculated. Analyses were descriptive (current sample versus previous results) and inferential (comparisons between demographic and professional groups within the current sample). Results: N = 293 people completed the survey. The median item scores were poorer than those of pooled samples from studies reporting median item scores on 39/51 (76.5%) occasions and poorer than those pooled samples of studies reporting mean item scores on 51/51 (100.0%) occasions. Individual capability for research was in the 'less than adequate' range more than in previous samples (71.4% vs. 42.9%). For team culture items, the proportions were 84.2% vs. 78.9%, while most responses about organizational culture were in the 'adequate' range (55.6% vs. 66.7%). Staff >20 years employment had poorer perceptions of team and organizational culture. Conclusion: Perceptions of individual research capacity and team and organizational culture were poor compared with previous studies, most of which were conducted in non-mental health settings. There is need for development of research capacity and culture in mental health services including opportunities to develop basic research skills through to strategic developments to promote clinical academic careers. There is considerable room for improvement in the way organizations support research and signpost opportunities. [ABSTRACT FROM AUTHOR]

Objectives: The introduction of medical revalidation in 2012 has been a controversial and radical change to medical regulation in the UK. It involved changes to the way organizations manage medical performance, and to the relationships between doctors, their employers and the professional regulatory body. In this paper, we explore the implementation of medical revalidation, analysing the change process and its consequences for doctors and organizations. Methods: We conducted a qualitative investigation of the implementation of revalidation in 15 case study organizations in 2016–2017, collecting documents and undertaking a total of 80 interviews with medical and non-medical staff. We used Normalization Process Theory to frame and structure the analysis. Results: Revalidation reforms were largely implemented successfully within and across our case study organizations, with evidence of growing acceptance of the purpose and processes of revalidation. There was an emergent shift from securing doctors' compliance towards the use of revalidation to strengthen clinical governance, and towards evaluating revalidation processes and seeking to make them more effective. However, there was substantial variation in the implementation and impact of revalidation; it was still not fully understood by many doctors, and revalidation processes were highly reliant on a few key individuals in each organization. The changes brought about by revalidation have had consequences for the way in which doctors construct their identity and the way they relate to the organizations in which they work. Conclusion: Despite considerable early scepticism and overt opposition in the medical profession, revalidation has become gradually accepted, embedded and even valued over time. Its impact and effectiveness are still questioned by many stakeholders, and the focus of attention has now shifted towards revising and improving the way revalidation works in practice. [ABSTRACT FROM AUTHOR]

Background: Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions. Aim: This study aimed to explore the barriers and facilitators to advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation and generate recommendations for improving practice. Study design: A cross-sectional interview study took place with 10 patients with chronic obstructive pulmonary disease on home non-invasive ventilation and 12 North East Assisted Ventilation Service healthcare professionals from the North East of England. Results: Three themes ('overlooked', 'disjointed care' and 'awareness and expertise') were identified. Patients with chronic obstructive pulmonary disease are a 'forgotten about' population, exacerbated by prejudice and unpredictable disease trajectories. Recognition as a distinct and underserved population may improve care and advance care planning. All participants recognised a lack of care continuity, including limited collaboration and communication between services, as a significant barrier to advanced care planning. Additionally, lacking understanding of the rationale and positive impacts of advance care planning, exacerbated by a lack of expertise in difficult conversations, was a barrier to advance care planning. Conclusions: Patients and healthcare professionals highlighted the need for individualised and ongoing advance care planning, particularly around prognosis and care preferences. Discussions should be initiated by familiar clinicians. Effective communication between services, clear agreements and protocols and upskilling healthcare professionals may ensure continuity of care. [ABSTRACT FROM AUTHOR]

Objective: To investigate acceptability, barriers to adherence with the interventions, and which outcome measures best reflect the participants' rehabilitation goals in a pilot and feasibility randomised controlled trial evaluating early patient-directed rehabilitation and standard rehabilitation, including sling immobilisation for four weeks, following surgical repair of the rotator cuff of the shoulder. Design: Nested qualitative study. Setting: Five English National Health Service Hospitals. Subjects: Nineteen patient participants who had undergone surgical repair of the rotator cuff and 10 healthcare practitioners involved in the trial. Method: Individual semi-structured interviews. Data were analysed thematically. Results: Four themes: (1) Preconceptions of early mobilisation; many participants were motivated to enter the trial for the opportunity of removing their sling and getting moving early. (2) Sling use and movement restrictions; for some, sling use for four weeks was unacceptable and contributed to their pain, rather than relieving it. (3) Tensions associated with early mobilisation; clinical tensions regarding early mobilisation and the perceived risk to the surgical repair were apparent. (4) Processes of running the trial; participants found the trial processes to be largely appropriate and acceptable, but withholding the results of the post-operative research ultrasound scan was contentious. Conclusion: Trial processes were largely acceptable, except for withholding results of the ultrasound scan. For some participants, use of the shoulder sling for a prolonged period after surgery was a reported barrier to standard rehabilitation whereas the concept of early mobilisation contributed tension for some healthcare practitioners due to concern about the effect on the surgical repair. [ABSTRACT FROM AUTHOR]

Psychological problems are common among people with inflammatory bowel disease (IBD) following stoma surgery. However, the ways in which stoma-related psychological needs are identified and addressed in health care settings remain unexplored. In this study, we investigated the perspectives of young people with a stoma and health care professionals about access to psychological support. Semi-structured interviews were conducted with young people with an IBD stoma (18–29 years, n = 13) and health care professionals (n = 15), including colorectal surgeons, gastroenterologists, specialist nurses in IBD and stoma care, and general practitioners in England. Data collection and analysis were informed by constructivist grounded theory. Three analytic categories were developed: "initiating support-seeking," "affirming psychological needs," and "mobilizing psychological support," which capture young peoples' trajectory to access psychological support. Based on the findings, we highlight the need for both patients and health care professionals to assign greater priority to the identification of psychological symptoms post-stoma surgery. More effective care pathways, which include responsive psychological services, would enhance access to psychological support for young people with a stoma. [ABSTRACT FROM AUTHOR]

London has unexpectedly low overall rates of self-harm in public health data and contains highly deprived areas with these paradoxically low rates. Qualitative data were collected via interviews and focus groups with 26 individuals living and working in one such area. Using the Stress Process Model, we explore why this ethnically diverse community, which is exposed to multiple, chronic stressors, might nonetheless appear to have low rates of self-harm. Participants described significant impacts of stressors on the mental health of people locally. These were partly buffered by social resources related to community solidarity and a culture of self-reliance. However, identifying oneself as mentally ill through being known to have self-harmed was seen as highly risky, diminishing a person's social status and exposing them to additional stressors from the community and services. Consequently, people tended to hide distress, respond with behaviors less linked to mental illness, and avoid mental health services. [ABSTRACT FROM AUTHOR]

Background: Complex and expensive treatment options have increased the frequency and emphasis of ethical decision-making in healthcare. In order to meet these challenges effectively, we need to identify how nurses contribute the resolution of these dilemmas. Aims: To identify the values, beliefs and contextual influences that inform decision-making. To identify the contribution made by nurses in achieving the resolution of ethical dilemmas in practice. Design: An interpretive exploratory study was undertaken, 11 registered acute care nurses working in a district general hospital in England were interviewed, using semi-structured interviews. In-depth content analysis of the data was undertaken via NVivo coding and thematic identification. Participants and context: Participants were interviewed about their contribution to the resolution of ethical dilemmas within the context of working in an acute hospital ward. Participants were recruited from all settings working with patients of any age and any diagnosis. Ethical considerations: Ethical approval was obtained from the local National Research Ethics Committee. Findings: Four major themes emerged: ‘best for the patient’, ‘accountability’, ‘collaboration and conflict’ and ‘concern for others’. Moral distress was also evident in the literature and findings, with moral dissonance recognised and articulated by more experienced nurses. The relatively small, single-site sample may not account for the effects of organisational culture on the results; the findings suggested that professional relationships were key to resolving ethical dilemmas. Discussion: Nurses use their moral reasoning based on their beliefs and values when faced with ethical dilemmas. Subsequent actions are mediated though ethical decision-making frames of reference including deontology, consequentialism, the ethics of care and virtue ethics. Nurses use these in contributing to the resolution of these dilemmas. Nurses require the skills to develop and maintain professional relationships for addressing ethical dilemmas and to engage with political and organisational macro- and micro-decision-making. Conclusion: Nurses’ professional relationships are central to nurses’ contributions to the resolution of ethical dilemmas. [ABSTRACT FROM AUTHOR]

Background: Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways to involve stakeholders in research differ internationally. Stakeholder involvement took place in seven countries (England, Germany, Italy, Lithuania, the Netherlands, Norway and Poland). Findings informed a project that developed concepts and methods for health technology assessment and applied these to evaluate models of palliative care service delivery. Aims: To report on stakeholder involvement in the INTEGRATE-HTA project and how issues identified informed project development. Design: Using stakeholder consultation or a qualitative research design, as appropriate locally, stakeholders in seven countries acted as 'advisors' to aid researchers' decision making. Thematic analysis was used to identify key issues across countries. Setting/participants: A total of 132 stakeholders (82 professionals and 50 'lay' people) aged ≥18 participated in individual face-to-face or telephone interviews, consultation meetings or focus groups. Results: Different stakeholder involvement methods were used successfully to identify key issues in palliative care. A total of 23 issues common to three or more countries informed decisions about the intervention and comparator of interest, sub questions and specific assessments within the health technology assessment. Conclusion: Stakeholders, including patients and families undergoing palliative care, can inform project decision making using various involvement methods according to the local context. Researchers should consider local understandings about stakeholder involvement as views of appropriate and feasible methods vary. Methods for stakeholder involvement, especially consultation, need further development. [ABSTRACT FROM AUTHOR]

Background: The way that people die is particularly important to those who are left behind and this memory is not limited to the moment of death, but encompasses the entire end-of-life phase. While a number of attributes for a ‘good death’ have been identified, less is known about how care providers feature within these conceptualisations. Aim: The aim of this article is to describe the end-of-life experience from the point of view of bereaved family carers with particular reference to the role that care providers play in shaping this experience. Design: Qualitative interviews carried out as part of a study to evaluate a new rapid response hospice at home service. An interpretive thematic analysis using the Framework approach was used to examine how family carers judge a ‘good death’ and how care providers feature in the attributes of a ‘good death’. Participants and setting: A total of 44 interviews with bereaved family carers from a hospice population in the South East of England. Results: Six themes were identified as attributes of a good death in which care providers had a key role: social engagement and connection to identity, care provider characteristics and actions, carer’s confidence and ability to care, preparation and awareness of death, presentation of the patient at death and support after death for protected grieving. Conclusion: Care providers played a much wider role in social aspects of care at the end of life than previously considered. [ABSTRACT FROM AUTHOR]

Background: Clinical uncertainty is emotionally challenging for patients and carers and creates additional pressures for those clinicians in acute hospitals. The AMBER care bundle was designed to improve care for patients identified as clinically unstable, deteriorating, with limited reversibility and at risk of dying in the next 1–2 months. Aim: To examine the experience of care supported by the AMBER care bundle compared to standard care in the context of clinical uncertainty, deterioration and limited reversibility. Design: A comparative observational mixed-methods study using semi-structured qualitative interviews and a followback survey. Setting/participants: Three large London acute tertiary National Health Service hospitals. Nineteen interviews with 23 patients and carers (10 supported by AMBER care bundle and 9 standard care). Surveys completed by next of kin of 95 deceased patients (59 AMBER care bundle and 36 standard care). Results: The AMBER care bundle was associated with increased frequency of discussions about prognosis between clinicians and patients (χ2 = 4.09, p = 0.04), higher awareness of their prognosis by patients (χ2 = 4.29, p = 0.04) and lower clarity in the information received about their condition (χ2 = 6.26, p = 0.04). Although the consistency and quality of communication were not different between the two groups, those supported by the AMBER care bundle described more unresolved concerns about caring for someone at home. Conclusion: Awareness of prognosis appears to be higher among patients supported by the AMBER care bundle, but in this small study this was not translated into higher quality communication, and information was judged less easy to understand. Adequately powered comparative evaluation is urgently needed. [ABSTRACT FROM AUTHOR]

Area-based initiatives have formed an important part of public policy towards more socio-economically deprived areas in many countries. Co-ordinating service provision within and across sectors has been a common feature of these initiatives. Despite sustained policy interest in area-based initiatives, little empirical work has explored relations between area-based initiative providers, and partnership development within this context remains under-theorised. This article addresses both of these gaps by exploring partnerships as a social and developmental process, drawing on concepts from figurational sociology to explain how provider relations develop within an area-based initiative. Qualitative methods were used to explore, prospectively, the development of an area-based initiative targeted at a town in the north west of England. A central finding was that although effective delivery of area-based initiatives is premised on a high level of co-ordination between service providers, the pattern of interdependencies between providers limits the frequency and effectiveness of co-operation. In particular, the interdependency of area-based initiative providers with others in their organisation (what is termed here as ‘organisational pull’) constrained the ways in which they worked with providers outside of their own organisations. ‘Local’ status, which could be earned over time, enabled some providers to exert greater control over the way in which provider relations developed during the course of the initiative. These findings demonstrate how historically constituted social networks, within which all providers are embedded, shape partnership development. The theoretical insight developed here suggests a need for more realistic expectations among policymakers about how and to what extent provider partnerships can be managed. [ABSTRACT FROM PUBLISHER]