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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]

Objectives: To increase understanding of disabled and chronically ill people’s experiences of revisiting choices by considering events that prompted people to reconsider choices; what factors motivated them to act upon these events and what factors affected their experiences of revisiting choices. Methods: A sub-sample of 20 disabled and chronically ill people who took part in a qualitative, longitudinal study exploring choice-making in the context of changing circumstances. Each person was interviewed three times. Analysis focussed on choices that people had been prompted to revisit. Results: Most choices were about health or social care and were revisited within a year due to: changes in health or social circumstances; poorer than expected outcomes; and external interventions. People were motivated to make changes by a desire to maintain independence and control, but perceived short-term costs of decision-making could act as a deterrent. Experiences of revisiting choices were affected by help from other people and emotional strength. Discussion: Making and revisiting choices is complex; people need support to engage with the continual cycle of choice-making. People who instigate revisions of their own accord may be particularly vulnerable to lack of support. [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]

The article presents a qualitative study which examines the experiences and perspectives of adult siblings, who have a sister or brother with autism and learning disability. The study uses semi-structured interviews. The study shows that personalisation as suggested by siblings' experience is at risk of turning into an uneasy compromise.

Introduction: The study investigated the impact of museum object handling sessions on hospital clients receiving occupational therapy in neurological rehabilitation and in an older adult acute inpatient mental health service.Methods: The research used a qualitative approach based on objectivist and constructionist methods, from which themes typical of the object handling sessions were derived. Results: Themes emerging from detailed analysis of discourse involving clients (n = 82) and healthcare staff (n = 8) comprised: distraction and decreasing negative emotion; increasing vitality and participation; tactile stimulation; conversational and social skills; increasing a sense of identity; novel perspectives and thoughts;learning new things; enjoyment and positive emotion. Critical success factors included good session facilitation for mitigating insecurity, ward staff support andthe use of authentic heritage objects.Conclusion: Museums and their collections can be a valuable addition to cultural and arts occupations, in particular for long-stay hospital clients. [ABSTRACT FROM AUTHOR]

The article discusses a qualitative study to evaluate professionals' experiences on the implementation of advance care planning (ACP) in two areas of clinical care, dementia and palliative care. Participants included Ninety-five participants from one Primary Care Trust, two acute National Health Service Hospital Trusts, one Ambulance Trust, one Local Authority and voluntary organization and the legal sector. The study found that professional, organizational and legal factors influenced ACP.

Background Group acupuncture clinics have been introduced in a London hospital and in two general practices in Hertfordshire for the treatment of knee osteoarthritis (OA). Encouraging preliminary reports have been published of the efficacy of the treatment delivered in this setting but its acceptability to patients has not yet been established. The aim was to investigate the acceptability and perceived advantages and disadvantages of acupuncture delivered in the group setting for the treatment of knee OA. Methods Semistructured interviews were conducted with 16 patients in their own homes and with four nurses over the telephone. Interviews were recorded, transcribed, fully anonymised and analysed thematically. Results Group acupuncture was delivered with enthusiasm by nurses, was acceptable and popular with patients and recognised to be cost-efficient.Factors affecting acceptability were situational, interpersonal and intrapersonal. Situational factors included adequacy of the physical space used, flexibility of the appointment system and the changing and adaptable nature of the group. Interpersonal factors were mutual support, the exchange of information, the provision of mixed or single-sex sessions and the role of the acupuncture nurse. Intrapersonal factors that increased acceptability were less clear, but nurses expressed the view that the group setting was less suitable for patients with complex conditions or severe pain. Conclusions Acceptability is very high and may be maximised by taking a number of factors into account: full information should be provided before treatment begins; flexibility should be maintained in the appointment system and different levels of contact between fellow patients should be fostered; sufficient space and staffi ng should be provided and single-sex groups used wherever possible. [ABSTRACT FROM AUTHOR]

Objectives: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in the final stages of the disease and bereavement period.Methods: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18 current family carers and 10 former family carers.Results: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may exacerbate patient distress and desire for hastening death.Conclusion: this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs. [ABSTRACT FROM AUTHOR]