Rurality, healthcare and crises: Investigating experiences, differences, and changes to medical care for people living in rural areas.

Healthcare provision in rural areas is a global challenge, characterised by a dispersed patient population, difficulties in the recruitment and retention of healthcare professionals and a physical distance from hospital care. This research brings together both public and doctor perspectives to explore the experience of healthcare across rural Scotland, against the backdrop of contemporary crises, including a global pandemic and extreme weather events. We draw on two studies on rural healthcare provision to understand how healthcare services have been experienced, changed and might move on after periods of short- and longer-term change caused by such crises. We highlight the importance of communicating service changes to aid in setting healthcare expectations and advocate a mixed approach to the introduction of digital solutions to best balance access to services in rural areas with the challenges of digital connectivity and literacy.

Protective and risk factors of mental health of working age adults with adventitious total bilateral blindness and low vision: A scoping review protocol.

Vision loss has been associated with mental health problems such as depression, anxiety, and post-traumatic stress disorder, which significantly impact lives of working age adults with adventitious total bilateral blindness and low vision. It is imperative, therefore, to prioritize the mental health in this population by exploring and understanding the factors that impact on their mental health. Hence, the objective of this scoping review is to identify and chart existing literature on the protective and risk factors of mental health of working age adults with adventitious total bilateral blindness and low vision. We developed this scoping review protocol in line with the Joanna Briggs Institute guidance. This scoping review will include publications in English language with no date restrictions exploring the protective and risk factors of mental health of our study population. A three-step search strategy will be employed. Searches will be carried out in the following databases: Medline, Embase, PsycInfo, PsycArticles, CINAHL and Web of Science. Search for grey literature will be conducted in Google, Google Scholar and Websites dedicated to information on visual impairment. Collated results will be imported into Endnote Basic (Clarivate) for deduplication. Two reviewers will independently conduct double screening of all the titles and abstracts in Rayyan- a web application, and full texts in Endnote while three other reviewers will conduct screening of a subset of for example 10% of titles and abstracts and full texts. Furthermore, two reviewers will independently conduct double data extraction while three other reviewers will revise, cross check, and correct any extraction errors. Extracted data will be presented in tabular formats and summarized descriptively in line with the research objectives. This scoping review will generate evidence on factors impacting the mental health of the working age adults with adventitious total bilateral blindness and low vision as well as critically highlight gaps in the literature. The findings will inform and critically underpin future empirical research which will explore the lived experiences of working age people with adventitious total bilateral blindness. Additionally, evidence from this review will inform the development of interventions in the promotion of mental health as well as assisting rehabilitation specialists and workers, public health practitioners and other relevant stakeholders in addressing the mental health needs of working age adults with adventitious total bilateral blindness and low vision.

Impact of Long Covid on the school experiences of children and young people: a qualitative study.

OBJECTIVES: To explore the impact of Long Covid (LC) on the school experiences of children and young people (CYP). DESIGN: Qualitative study using narrative interviews. PARTICIPANTS: 22 CYP (aged 10-18 years, 15 female) with LC and 15 parents/caregivers (13 female) of CYP (aged 5-18 years) with LC. SETTING: Interviews were conducted between October 2021 and July 2022 via online video call or telephone. Recruitment routes included social media, LC support groups, clinicians, community groups and snowballing. RESULTS: Three key findings were identified. Finding 1: Going to school is a valued part of CYP's lives and participants viewed educational attainment as important for their future trajectories. Returning to school full time was highlighted as a key part of regaining 'normal life'. Finding 2: Attending school (in-person or online) with LC is extremely difficult; even a gradual return required CYP to balance the impact of being at and engaging with school, with the need to manage symptoms to prevent relapse. Often this meant prioritising school and rest over other aspects of their lives. Finding 3: School responses to CYP with LC were reported to be mixed and hampered by difficulties communicating with healthcare professionals during the pandemic and a lack of awareness of LC among healthcare and education professionals. Participants viewed supportive school responses as staff believing, understanding and taking them seriously, alongside schools offering tailored and flexible adaptations which allowed engagement with school while limiting any deterioration of symptoms. CONCLUSIONS: This study describes how LC affects the school experiences of CYP and generates recommendations for supportive school responses alongside supportive healthcare professionals. Further research could explore the approaches that facilitate a successful return to school for CYP with LC and investigate education professionals' perspectives on support they require to positively engage with returning pupils.

Valuing place in doctors' decisions to work in remote and rural locations.

Recruitment and retention of medical practitioners is a challenging contemporary issue for rural and remote areas. In this paper, we explore the importance of what it is that doctors value in rural and remote places from their own personal, organisational, social and spatial lives. We do this by drawing on original research from Scotland that explored doctors' decisions on choosing, or not, to work in remote and rural locations. Three themes are explored: moving and staying, using place to think holistically about places beyond the language of work that recruitment and retention implies; how doctors' professional values and their capacity to enact those values change with time; and how policy landscapes interact and shape rural and remote locations as valued places for doctors to live and work. We end the paper by reiterating the World Health Organization findings that a whole-of-society approach is required to support rural and remote communities to flourish, thus, encouraging doctors and their families to value such places and, ultimately, move and stay.

The Baby Box scheme in Scotland: A study of public attitudes and social value.

BACKGROUND: The Scottish Government introduced a free Baby Box scheme for all new parents in 2017, modelled on the Finnish scheme, to give every baby 'an equal start in life'. There is little evidence that it results in better health outcomes, but there has been limited research into different perspectives and discourses on such schemes. METHODS: Four focus groups were conducted with 21 parents in North-East Scotland. Recordings were transcribed verbatim, anonymized and analysed thematically with NVivo 12 software. Our thematic analysis was both inductive and deductive-remaining open to themes identified by participants themselves but also informed by the social policy literature on universalism and social cohesion. RESULTS: Across all the focus groups, we found a high degree of positivity about the principle of the Baby Box scheme, and for the most part the practical value of the contents. This was remarkably consistent across different communities and backgrounds. There was little evidence of the strongly polarized views present in media reporting. Parents seemed considerably less focused than the media on safety and health outcomes, and more focused on practical, material and social impacts. They reported little in the way of feeling patronized or monitored by the government. CONCLUSION: Our findings have important implications for future economic evaluations of the baby box. Such evaluations should broaden the valuation space beyond health outcomes to allow for the value of feelings of inclusion, solidarity and being part of a community. PATIENT OR PUBLIC CONTRIBUTION: This small project was designed in response to parent views already collected in the early roll-out of the Baby Box scheme in Scotland, about their priorities and responses to the scheme. Additional views were sought on the topic guide for the focus groups, and local community groups advised us on recruitment and the best timing and location for the focus groups to be held. The focus groups themselves were conducted as research, but with the intent of ensuring parent views featured more prominently in a debate that has been largely dominated by clinical and public health perspectives.

Behavioural optimisation to address trial conduct challenges: case study in the UK-REBOA trial.

BACKGROUND: Clinical trials comprise multiple processes at various stages of the trial lifecycle. These processes often involve complex behaviours such as recruiting vulnerable patient populations and clinicians having to deliver complex trial interventions successfully. Few studies have utilised a behavioural framework to assess challenges and develop strategies for effective trial recruitment and delivery of trial interventions. This study reports the application of an innovative methodological approach to understand core trial processes, namely recruitment and intervention delivery, using a behavioural science approach to develop strategies designed to mitigate trial process problems. METHODS: The UK-REBOA trial aims to evaluate the clinical and cost-effectiveness of resuscitative endovascular balloon occlusion of the aorta (a novel intervention) in injured patients with exsanguinating haemorrhage. A behavioural investigation ('diagnosis') was conducted using theory-informed (Theoretical Domains Framework, TDF) semi-structured interviews with site staff from the UK-REBOA trial to examine trial processes which could be improved in relation to trial recruitment and delivery of the intervention. Interviews were analysed using the TDF to identify influences on behaviour, which were then mapped to techniques for behaviour change and developed into potential solutions. RESULTS: The behavioural diagnosis of the challenges experienced during trial processes highlighted factors relevant to a range of TDF domains: Skills, Environmental context and resources, Beliefs about capabilities, Beliefs about consequences, Social influences, and Memory, attention, and decision-making processes. Within the solution development phase, we identified 24 suitable behaviour change techniques that were developed into proposed solutions to target reported process problems with the aim of changing behaviour to improve recruitment and/or intervention delivery. Proposed solutions included targeted changes to trial training content, suggestions to restructure the environment (e.g. reinforced the purpose of the trial with information about the social and environmental consequences) and other strategies to reduce barriers to recruitment and intervention delivery. CONCLUSIONS: This study demonstrates the feasibility of applying a behavioural approach to investigate ('diagnose') behavioural trial process problems and subsequently develop and implement targeted solutions ('treatment') in an active trauma trial. Understanding the factors that affected behaviour, attitudes and beliefs in this trauma trial allowed us to implement theoretically informed, evidence-based solutions designed to enhance trial practices. TRIAL REGISTRATION: ISRCTN 16,184,981.

'Using humanity to change systems' - understanding the work of online feedback moderation: A case study of Care Opinion Scotland.

OBJECTIVE: To gain a deeper understanding of online patient feedback moderation through the organisation of Care Opinion in Scotland. METHODS: An ethnographic study, initially using in-person participant observations, switching to remote methods due to the pandemic. This involved the use of remote observations and interviews. Interviews were carried out with the whole Scottish team (n = 8). RESULTS: Our results identify three major themes of work found in online patient feedback moderation. The first is process work, where moderators make decisions on how to edit and publish stories. The second is emotional labour from working with healthcare experiences and with NHS staff. The third is the brokering/mediation role of Care Opinion, where they must manage the relationships between authors, subscribing healthcare providers and Scottish Government. Our results also capture that these different themes are not independent and can at times influence the others. CONCLUSION: Our results build on previous literature on Care Opinion and provide novel insights into the emotional and brokering/mediation work they undertake. Care Opinion holds a unique position, where they must balance the interests of the key stakeholders. Care Opinion holds the power to amplify authors' voices but the power to make changes to services lies with NHS staff and services. Online moderation work is complex, and moderators require support to carry out their work especially given the emotional impact. Further research is planned to understand how patient stories are used by NHS Scotland, and the emotional labour involved with stories, from both the author and NHS staff perspective.

Mental-physical multimorbidity treatment adherence challenges in Brazilian primary care: A qualitative study with patients and their healthcare providers.

Improved understanding of multimorbidity (MM) treatment adherence in primary health care (PHC) in Brazil is needed to achieve better healthcare and service outcomes. This study explored experiences of healthcare providers (HCP) and primary care patients (PCP) with mental-physical MM treatment adherence. Adults PCP with mental-physical MM and their primary care and community mental health care providers were recruited through maximum variation sampling from nine cities in São Paulo State, Southeast of Brazil. Experiences across quality domains of the Primary Care Assessment Tool-Brazil were explored through semi-structured in-depth interviews with 19 PCP and 62 HCP, conducted between April 2016 and April 2017. Through thematic conent analysis ten meta-themes concerning treatment adherence were developed: 1) variability and accessibility of treatment options available through PHC; 2) importance of coming to terms with a disease for treatment initation; 3) importance of person-centred communication for treatment initiation and maintenance; 4) information sources about received medication; 5) monitoring medication adherence; 6) taking medication unsafely; 7) perceived reasons for medication non-adherence; 8) most challenging health behavior change goals; 9) main motives for initiation or maintenance of treatment; 10) methods deployed to improve treatment adherence. Our analysis has advanced the understanding of complexity inherent to treatment adherence in mental-physical MM and revealed opportunities for improvement and specific solutions to effect adherence in Brazil. Our findings can inform research efforts to transform MM care through optimization.

Anonymity, veracity and power in online patient feedback: A quantitative and qualitative analysis of staff responses to patient comments on the 'Care Opinion' platform in Scotland.

OBJECTIVE: To analyse how staff in one Scottish hospital respond to anonymised patient feedback posted on the nationally endorsed feedback platform Care Opinion; and to understand staff experiences of, and attitudes towards, engaging with Care Opinion data. METHODS: This was a multi-method study comprising: (a) numerical and thematic analysis of stories posted during a six-month period, using a published framework; (b) thematic analysis of interviews with a range of 10 hospital staff responsible for organisational responses to feedback. RESULTS: Seventy-seven stories were published during the six-month period. All received a response, with a mean response time of 3.9 days. Ninety-six responses were made in total, from 20 staff members. Personalisation and tailoring was mostly assessed as performing well against the published framework. Only two 'changes made' were reported. While staff interviewed were mostly understanding of why patients might prefer giving anonymised feedback, some found it uncomfortable and challenging. Participants described instances where they might seek to de-anonymise the individual, in order to pass on personal thanks to the relevant staff member, or to investigate the issue raised and seek resolution offline. Patients did not always want to identify themselves; this could sometimes lead staff to query the veracity or importance of issues raised. Sometimes staff could identify individuals anyway, including one described as 'our regular person'. CONCLUSIONS: Staff used to engaging directly with patients and families, both clinically and in dealing with feedback, need support in dealing with anonymous feedback, and the uncomfortable situation of unequal power it may create.

Acceptability and feasibility of weight management programmes for adults with severe obesity: a qualitative systematic review.

OBJECTIVES: To improve our understanding of the acceptability of behavioural weight management programmes (WMPs) for adults with severe obesity. DESIGN: A systematic review of qualitative evidence. DATA SOURCES: Medline, Embase, PsycINFO, CINAHL, SCI, SSCI and CAB abstracts were searched from 1964 to May 2017. ELIGIBILITY CRITERIA: Papers that contained qualitative data from adults with body mass index (BMI) ≥35 kg/m2 (and/or the views of providers involved in their care) and considered issues about weight management. DATA EXTRACTION AND SYNTHESIS: Two reviewers read and systematically extracted data from the included papers which were compared, and contrasted according to emerging issues and themes. Papers were appraised for methodological rigour and theoretical relevance using Toye's proposed criteria for quality in relation to meta-ethnography. RESULTS: 33 papers met our inclusion criteria from seven countries published 2007-2017. Findings were presented from a total of 644 participants and 153 programme providers. Participants described being attracted to programmes that were perceived to be novel or exciting, as well as being endorsed by their healthcare provider. The sense of belonging to a group who shared similar issues, and who had similar physiques and personalities, was particularly important and seemed to foster a strong group identity and related accountability. Group-based activities were enjoyed by many and participants preferred WMPs with more intensive support. However, some described struggling with physical activities (due to a range of physical comorbidities) and not everyone enjoyed group interaction with others (sometimes due to various mental health comorbidities). Although the mean BMI reported across the papers ranged from 36.8 to 44.7 kg/m2, no quotes from participants in any of the included papers were linked to specific detail regarding BMI status. CONCLUSIONS: Although group-based interventions were favoured, people with severe obesity might be especially vulnerable to physical and mental comorbidities which could inhibit engagement with certain intervention components.

Exploring non-retention in clinical trials: a meta-ethnographic synthesis of studies reporting participant reasons for drop out.

OBJECTIVES: To undertake a meta-ethnographic synthesis of findings from primary studies reporting qualitative data that have explored participant-reported factors influencing non-retention within a clinical trial context. DESIGN: A systematic search and meta-ethnography was conducted for published papers (from 1946 to July 2018) that contained qualitative data from trial non-retainers. PARTICIPANTS: We identified 11 studies reporting qualitative data from 13 trials. The studies were undertaken between 2008 and 2018. Each study included between 3 and 40 people who had dropped out from a trial, with findings from 168 people in total reported across the papers. RESULTS: Emergent from our synthesis was the significance of trial non-retainers' perceptions around the personal 'fit' of key aspects of the trial with their personal beliefs, preferences, capabilities or life circumstances. These related to their own health state; preferences for receiving trial 'care'; individual capabilities; beliefs about or experiences of trial medication and considerations whether trial participation could be accommodated into their broader lives. All these factors raise important issues around the extent to which initial decisions to participate were fully informed. CONCLUSIONS: To improve retention in clinical trials, researchers should work to reduce the burden on trial participants both through the design of the intervention itself as well as through simplified data collection processes. Providing more detail on the nature of the trial interventions and what can be expected by 'participation' at the consenting stage may prove helpful in order to manage expectations.

Bariatric surgery, lifestyle interventions and orlistat for severe obesity: the REBALANCE mixed-methods systematic review and economic evaluation.

BACKGROUND: Adults with severe obesity [body mass index (BMI) of ≥ 35 kg/m2] have an increased risk of comorbidities and psychological, social and economic consequences. OBJECTIVES: Systematically review bariatric surgery, weight-management programmes (WMPs) and orlistat pharmacotherapy for adults with severe obesity, and evaluate the feasibility, acceptability, clinical effectiveness and cost-effectiveness of treatment. DATA SOURCES: Electronic databases including MEDLINE, EMBASE, PsycINFO, the Cochrane Central Register of Controlled Trials and the NHS Economic Evaluation Database were searched (last searched in May 2017). REVIEW METHODS: Four systematic reviews evaluated clinical effectiveness, cost-effectiveness and qualitative evidence for adults with a BMI of ≥ 35 kg/m2. Data from meta-analyses populated a microsimulation model predicting costs, outcomes and cost-effectiveness of Roux-en-Y gastric bypass (RYGB) surgery and the most effective lifestyle WMPs over a 30-year time horizon from a NHS perspective, compared with current UK population obesity trends. Interventions were cost-effective if the additional cost of achieving a quality-adjusted life-year is < £20,000-30,000. RESULTS: A total of 131 randomised controlled trials (RCTs), 26 UK studies, 33 qualitative studies and 46 cost-effectiveness studies were included. From RCTs, RYGB produced the greatest long-term weight change [-20.23 kg, 95% confidence interval (CI) -23.75 to -16.71 kg, at 60 months]. WMPs with very low-calorie diets (VLCDs) produced the greatest weight loss at 12 months compared with no WMPs. Adding a VLCD to a WMP gave an additional mean weight change of -4.41 kg (95% CI -5.93 to -2.88 kg) at 12 months. The intensive Look AHEAD WMP produced mean long-term weight loss of 6% in people with type 2 diabetes mellitus (at a median of 9.6 years). The microsimulation model found that WMPs were generally cost-effective compared with population obesity trends. Long-term WMP weight regain was very uncertain, apart from Look AHEAD. The addition of a VLCD to a WMP was not cost-effective compared with a WMP alone. RYGB was cost-effective compared with no surgery and WMPs, but the model did not replicate long-term cost savings found in previous studies. Qualitative data suggested that participants could be attracted to take part in WMPs through endorsement by their health-care provider or through perceiving innovative activities, with WMPs being delivered to groups. Features improving long-term weight loss included having group support, additional behavioural support, a physical activity programme to attend, a prescribed calorie diet or a calorie deficit. LIMITATIONS: Reviewed studies often lacked generalisability to UK settings in terms of participants and resources for implementation, and usually lacked long-term follow-up (particularly for complications for surgery), leading to unrealistic weight regain assumptions. The views of potential and actual users of services were rarely reported to contribute to service design. This study may have failed to identify unpublished UK evaluations. Dual, blinded numerical data extraction was not undertaken. CONCLUSIONS: Roux-en-Y gastric bypass was costly to deliver, but it was the most cost-effective intervention. Adding a VLCD to a WMP was not cost-effective compared with a WMP alone. Most WMPs were cost-effective compared with current population obesity trends. FUTURE WORK: Improved reporting of WMPs is needed to allow replication, translation and further research. Qualitative research is needed with adults who are potential users of, or who fail to engage with or drop out from, WMPs. RCTs and economic evaluations in UK settings (e.g. Tier 3, commercial programmes or primary care) should evaluate VLCDs with long-term follow-up (≥ 5 years). Decision models should incorporate relevant costs, disease states and evidence-based weight regain assumptions. STUDY REGISTRATION: This study is registered as PROSPERO CRD42016040190. FUNDING: The National Institute for Health Research Health Technology Assessment programme. The Health Services Research Unit and Health Economics Research Unit are core funded by the Chief Scientist Office of the Scottish Government Health and Social Care Directorate.

Development of a standardised set of metrics for monitoring site performance in multicentre randomised trials: a Delphi study.

BACKGROUND: Site performance is key to the success of large multicentre randomised trials. A standardised set of clear and accessible summaries of site performance could facilitate the timely identification and resolution of potential problems, minimising their impact. The aim of this study was to identify and agree a core set of key performance metrics for managing multicentre randomised trials. METHODS: We used a mixed methods approach to identify potential metrics and to achieve consensus about the final set, adapting methods that are recommended by the COMET Initiative for developing core outcome sets in health care. We used performance metrics identified from our systematic search and focus groups to create an online Delphi survey. We invited respondents to score each metric for inclusion in the final core set, over three survey rounds. Metrics scored as critical by ≥70% and unimportant by <15% of respondents were taken forward to a consensus meeting of representatives from key UK-based stakeholders. Participants in the consensus meeting discussed and voted on each metric, using anonymous electronic voting. Metrics with >50% of participants voting for inclusion were retained. RESULTS: Round 1 of the Delphi survey presented 28 performance metrics, and a further six were added in round 2. Of 294 UK-based stakeholders who registered for the Delphi survey, 211 completed all three rounds. At the consensus meeting, 17 metrics were discussed and voted on: 15 metrics were retained following survey round 3, plus two others that were preferred by consensus meeting participants. Consensus was reached on a final core set of eight performance metrics in three domains: (1) recruitment and retention, (2) data quality and (3) protocol compliance. A simple tool for visual reporting of the metrics is available from the Nottingham Clinical Trials Unit website. CONCLUSIONS: We have established a core set of metrics for measuring the performance of sites in multicentre randomised trials. These metrics could improve trial conduct by enabling researchers to identify and address problems before trials are adversely affected. Future work could evaluate the effectiveness of using the metrics and reporting tool.

Surgeons' and methodologists' perceptions of utilising an expertise-based randomised controlled trial design: a qualitative study.

BACKGROUND: Randomised controlled trials (RCTs) are widely recognised to be the most rigorous way to test new and emerging clinical interventions. When the interventions under study are two different surgical procedures, however, surgeons are required to be trained and sufficiently proficient in the different surgical approaches to take part in such a trial. It is often the case that even where surgeons can perform both trial surgical procedures, they have a preference and/or have more expertise in one of the procedures. The expertise-based trial design, where participating surgeons only provide the procedure in which they have appropriate expertise, has been proposed to overcome this problem. When expertise-based designs should be best used remains unclear; such approaches may be more suited to addressing specific questions. The aim of this qualitative study was to improve understanding about the range of views that surgeons and methodologists have regarding the use of the expertise-based RCT design. METHODS: Twelve individual interviews with surgeons and methodologists with experience of surgical trials were conducted. Interviews were semi-structured and conducted face-to-face or by telephone. Interviews were audio-recorded, transcribed and analysed systematically using an interpretive approach. RESULTS: Both surgeons and methodologists saw potential advantages in the expertise-based design particularly in terms of surgeons' participation and in trials where the procedures being evaluated were significantly different. The main disadvantages identified were methodological (e.g. the potential for surgeons carrying out one of the trial procedure being systematically different) and operational (e.g. the need to 'transfer' patients between surgeons with potential consequences for the surgeon/patient relationship). CONCLUSION: This study suggests that the expertise-based trial design has significant potential to increase surgeon participation in trials in some settings. In other settings the standard design was generally seen as the preferable design. Particularly suitable conditions for an expertise-based design include those where the surgical procedures under evaluation are substantially different, where they are routinely delivered by different health professionals/surgeons with clear proficiencies in each; and contexts in which a multiple-surgeon model is in use and trust between the patient and surgeons can be suitably protected. The standard design was seen by most participants as the default design. Several logistical and methodological concerns remain to be addressed before the expertise-based design is likely to be more widely adopted.

Jugglers and tightrope walkers: The challenge of delivering quality community pharmacy services.

INTRODUCTION: This is the first exploration of service providers' attitudes and beliefs of quality and quality improvement in the community pharmacy setting in the UK. MATERIALS AND METHODS: A series of interviews and focus groups was conducted with stakeholders from the pharmacy profession in the UK. Interviews were semi-structured and conducted face-to-face or by telephone. Focus groups were conducted with naturally-occurring groups i.e. at pharmacy conferences. Interviews and focus groups were audio-recorded, transcribed and analysed systematically using an interpretive approach. RESULTS: Forty-two individuals participated across four focus groups and four interviews. A maximum variation sample was achieved in terms of pharmacist and pharmacy characteristics. Participants were generally positive about the need for quality and quality improvement and provided multifaceted and interlinked interpretations of quality and acknowledged its dynamic nature "quality moves forward". The challenge of standardising practice whilst providing person-centred care emerged: "you don't want to lose the personal touch, but you can't have people having a variable experience and one day it's fantastic and the next day it isn't". A variety of quality measurement methods were identified including direct observation (by internal and external agents) and feedback (mystery shoppers, colleagues, regulatory inspectors, service users), suggesting that standardisation was also needed in terms of future quality measurement. There was a tendency to report negative events as triggers for improvement. Future initiatives could adopt more positive approaches including positive deviants "There's nothing more powerful than people who've come up with something really good sharing it with their other colleagues". DISCUSSION: The results are being used to develop and evaluate future quality improvement initiatives in this sector. These are likely to be targeted at organisational, team and individual levels.

"The more you know, the more you realise it is really challenging to do": Tensions and uncertainties in person-centred support for people with long-term conditions.

OBJECTIVE: To identify and examine tensions and uncertainties in person-centred approaches to self-management support - approaches that take patients seriously as moral agents and orient support to enable them to live (and die) well on their own terms. METHODS: Interviews with 26 UK clinicians about working with people with diabetes or Parkinson's disease, conducted within a broader interdisciplinary project on self-management support. The analysis reported here was informed by philosophical reasoning and discussions with stakeholders. RESULTS: Person-centred approaches require clinicians to balance tensions between the many things that can matter in life, and their own and each patient's perspectives on these. Clinicians must ensure that their supportive efforts do not inadvertently disempower people. When attending to someone's particular circumstances and perspectives, they sometimes face intractable uncertainties, including about what is most important to the person and what, realistically, the person can or could do and achieve. The kinds of professional judgement that person-centred working necessitates are not always acknowledged and supported. CONCLUSION: Practical and ethical tensions are inherent in person-centred support and need to be better understood and addressed. PRACTICE IMPLICATIONS: Professional development and service improvement initiatives should recognise these tensions and uncertainties and support clinicians to navigate them well.

'It's trying to manage the work': a qualitative evaluation of recruitment processes within a UK multicentre trial.

OBJECTIVES: To explore trial site staff's perceptions regarding barriers and facilitators to local recruitment. DESIGN: Qualitative semi-structured interviews with a range of trial site staff from four trial sites in the UK. Interviews were analysed thematically to identify common themes across sites, barriers that could be addressed and facilitators that could be shared with other sites. PARTICIPANTS: 11 members of staff from four trial sites: clinical grant Co-applicant (n=1); Principal Investigators (n=3); Consultant Urologist (n=1); Research Nurses (n=5); Research Assistant (n=1). SETTING: Embedded within an ongoing randomised controlled trial (the TISU trial). TISU is a UK multicentre trial comparing therapeutic interventions for ureteric stones. RESULTS: Our study draws attention to the initial and ongoing burden of trial work that is involved throughout the duration of a clinical trial. In terms of building and sustaining a research culture, trial staff described the ongoing work of engagement that was required to ensure that clinical staff were both educated and motivated to help with the process of identifying and screening potential participants. Having adequate and sufficient organisational and staffing resources was highlighted as being a necessary prerequisite to successful recruitment both in terms of accessing potentially eligible patients and being able to maximise recruitment after patient identification. The nature of the research study design can also potentially generate challenging communicative work for recruiting staff which can prove particularly problematic. CONCLUSIONS: Our paper adds to existing research highlighting the importance of the hidden and complex work that is involved in clinical trial recruitment. Those designing and supporting the operationalisation of clinical trials must recognise and support the mitigation of this 'work'. While much of the work is likely to be contextually sensitive at the level of local sites and for individual trials, some aspects are ubiquitous issues for delivery of trials more generally. TRIAL REGISTRATION NUMBER: ISRCTN No 92289221; Pre-results.

"Was that a success or not a success?": a qualitative study of health professionals' perspectives on support for people with long-term conditions.

BACKGROUND: Support for self-management (SSM) is a prominent strand of health policy internationally, particularly for primary care. It is often discussed and evaluated in terms of patients' knowledge, skills and confidence, health-related behaviours, disease control or risk reduction, and service use and costs. However, these goals are limited, both as guides to professional practice and as indicators of its quality. In order to better understand what it means to support self-management well, we examined health professionals' views of success in their work with people with long-term conditions. This study formed part of a broader project to develop a conceptual account of SSM that can reflect and promote good practice. METHODS: Semi-structured individual interviews (n = 26) and subsequent group discussions (n = 5 groups, 30 participants) with diverse health professionals working with people with diabetes and/or Parkinson's disease in NHS services in London, northern England or Scotland. The interviews explored examples of more and less successful work, ways of defining success, and ideas about what facilitates success in practice. Subsequent group discussions considered the practical implications of different accounts of SSM. Interviews and group discussions were audio-recorded, transcribed and analysed thematically. RESULTS: Participants identified a wide range of interlinked aspects or elements of success relating to: health, wellbeing and quality of life; how well people (can) manage; and professional-patient relationships. They also mentioned a number of considerations that have important implications for assessing the quality of their own performance. These considerations in part reflect variations in what matters and what is realistically achievable for particular people, in particular situations and at particular times, as well as the complexity of questions of attribution. CONCLUSIONS: A nuanced assessment of the quality of support for self-management requires attention to the responsiveness of professional practice to a wide, complex range of personal and situational states, as well as actions and interactions over time. A narrow focus on particular indicators can lead to insensitive or even perverse judgements and perhaps counterproductive effects. More open, critical discussions about both success and the assessment of quality are needed to facilitate good professional practice and service improvement initiatives.

We need to talk about purpose: a critical interpretive synthesis of health and social care professionals' approaches to self-management support for people with long-term conditions.

BACKGROUND: Health policies internationally advocate 'support for self-management', but it is not clear how the promise of the concept can be fulfilled. OBJECTIVE: To synthesize research into professional practitioners' perspectives, practices and experiences to help inform a reconceptualization of support for self-management. DESIGN: Critical interpretive synthesis using systematic searches of literature published 2000-2014. FINDINGS: We summarized key insights from 164 relevant papers in an annotated bibliography. The literature illustrates striking variations in approaches to support for self-management and interpretations of associated concepts. We focused particularly on the somewhat neglected question of the purpose of support. We suggest that this can illuminate and explain important differences between narrower and broader approaches. Narrower approaches support people to manage their condition(s) well in terms of disease control. This purpose can underpin more hierarchical practitioner-patient communication and more limited views of patient empowerment. It is often associated with experiences of failure and frustration. Broader approaches support people to manage well with their condition(s). They can keep work on disease control in perspective as attention focuses on what matters to people and how they can be supported to shape their own lives. Broader approaches are currently less evident in practice. DISCUSSION AND CONCLUSION: Broader approaches seem necessary to fulfil the promise of support for self-management, especially for patient empowerment. A commitment to enable people to live well with long-term conditions could provide a coherent basis for the forms and outcomes of support that policies aspire to. The implications of such a commitment need further attention.