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Abstract Background The response to the COVID-19 pandemic saw a significant increase in demand for the voluntary, community, faith and social enterprise (VCFSE) sector to provide support to local communities. In Greater Manchester (GM), the VCFSE sector and informal networks provided health and wellbeing support in multiple ways, culminating in its crucial supportive role in the provision of the COVID-19 vaccination rollout across the GM city region. However, the support provided by the VCFSE sector during the pandemic remains under-recognised. The aims of the study were to: understand the views and experiences of marginalised communities in GM during the COVID-19 pandemic; explore how community engagement initiatives played a role during the pandemic and vaccine rollout; assess what can be learnt from the work of key stakeholders (community members, VCFSEs, health-system stakeholders) for future health research and service delivery. Methods The co-designed study utilised a participatory approach throughout and was co-produced with a Community Research Advisory Group (CRAG). Focus groups and semi-structured interviews were conducted remotely between September-November 2021, with 35 participants from local marginalised communities, health and care system stakeholders and VCFSE representatives. Thematic framework analysis was used to analyse the data. Results Local communities in GM were not supported sufficiently by mainstream services during the course of the COVID-19 pandemic, resulting in increased pressure onto the VCFSE sector to respond to local communities’ need. Community-based approaches were deemed crucial to the success of the vaccination drive and in providing support to local communities more generally during the pandemic, whereby such approaches were in a unique position to reach members of diverse communities to boost uptake of the vaccine. Despite this, the support delivered by the VCFSE sector remains under-recognised and under-valued by the health system and decision-makers. Conclusions A number of challenges associated with collaborative working were experienced by the VSCE sector and health system in delivering the vaccination programme in partnership with the VCFSE sector. There is a need to create a broader, more inclusive health system which allows and promotes inter-sectoral working. Flexibility and adaptability in ongoing and future service delivery should be championed for greater cross-sector working.

Abstract Background There are clear inequalities in COVID − 19 vaccination rates amongst marginalised groups, with lower rates for some minoritised ethnic and religious groups, younger people, those living in more deprived areas, and with lower socio-economic status. Existing research focuses on psychological and socio-economic factors that influence vaccine uptake and does not explore broader social and historical contexts. Understanding inequalities in COVID-19 vaccine uptake requires a critical examination of the drivers of, and barriers to, vaccination. Methods We present findings from a co-designed qualitative research study undertaken during the COVID-19 pandemic. Focus groups and interviews were used to examine the context underpinning responses to the COVID-19 vaccination in Greater Manchester, particularly focussing on experiences of marginalisation. Thematic framework analysis was used to analyse the data. Results We found that the public’s responses to the COVID-19 vaccination programme are intertwined with a longstanding history of institutional distrust and disenfranchisement, resulting from experiences of marginalisation and social inequalities. This was exacerbated further by the disproportionate impacts of the COVID-19 pandemic on minoritised ethnic groups, younger people, and those with existing health conditions. Conclusions Histories of structural inequalities experienced by minoritised groups invoked feelings of suspicion and scepticism at the motivations of the agencies behind the vaccination rollout. This highlights the need for a contextualised analysis of attitudes to vaccines, considering pre-existing inequalities, which may be especially relevant for conceptualising public responses to the vaccination programme. Finally, our study shows the important ways in which public (dis)trust can impact public health policies. We recommend this should be incorporated into responses to future public health crises.

BackgroundDiabetes Self-Management Education and Support programs for people living with type 2 diabetes mellitus (T2DM) can increase glycemic control and reduce the risk of developing T2DM-related complications. However, the recorded uptake of these programs is low. Digital self-management interventions have the potential to overcome barriers associated with attendance at face-to-face sessions. Healthy Living is an evidence-based digital self-management intervention for people living with T2DM, based on the Healthy Living for People with Type 2 Diabetes (HeLP-Diabetes) intervention, which demonstrated effectiveness in a randomized controlled trial. NHS England has commissioned Healthy Living for national rollout into routine care. Healthy Living consists of web-based structured education and Tools components to help service users self-manage their condition, including setting goals. However, key changes were implemented during the national rollout that contrasted with the trial, including a lack of facilitated access from a health care professional and the omission of a moderated online support forum. ObjectiveThis qualitative study aims to explore service users’ experiences of using Healthy Living early in the national rollout. MethodsA total of 19 participants were interviewed via telephone or a videoconferencing platform. Topics included users’ experiences and views of website components, their understanding of the intervention content, and the overall acceptability of Healthy Living. Transcripts were analyzed thematically using a framework approach. ResultsParticipants valued having trustworthy information that was easily accessible. The emotional management content resonated with the participants, prompting some to book an appointment with their general practitioners to discuss low mood. After completing the structured education, participants might have been encouraged to continue using the website if there was more interactivity (1) between the website and other resources and devices they were using for self-management, (2) with health professionals and services, and (3) with other people living with T2DM. There was consensus that the website was particularly useful for people who had been newly diagnosed with T2DM. ConclusionsDigital Diabetes Self-Management Education and Support programs offering emotional aspects of self-management are addressing an unmet need. Primary care practices could consider offering Healthy Living to people as soon as they are diagnosed with T2DM. Participants suggested ways in which Healthy Living could increase interaction with the website to promote continued long-term use.

Abstract Introduction Remote (digital and/or telephone) access and consultation models are being driven by national policy with the goal being that the National Health Service operate on a remote‐first (digital‐first) basis by 2029. Previous research has suggested that remote methods of access to care and consulting may act to widen health inequalities for certain patients and/or groups such as those from ethnic minorities. South Asian (SA) patients comprise the largest ethnic minority group in England. Understanding the experiences and needs of this group is critical to ensuring that general practice can deliver equitable, quality health care. Methods Qualitative study. 37 participants (from Indian, Pakistani and/or Bangladeshi background) were recruited to take part in either in‐person preferred language focus groups or remote semistructured interviews in the English language. Thematic analysis was conducted to identify themes in the qualitative data. Findings Three major interlinked themes were identified: (1) reduced access, (2) reduced patient choice and (3) quality and safety concerns. The findings highlight access issues split by (i) general issues with appointment access via any remote means and (ii) specific issues related to language barriers creating additional barriers to access and care. Some patients valued the convenience of remote access but also raised concerns regarding appointment availability and reduced patient choice. Face‐to‐face consultations were preferable but less available. The findings underscore how participants perceived remote care to be of lesser quality and less safe. Concerns were greatest for those with limited English proficiency (LEP), with the removal of non‐verbal aspects of communication and ‘hands‐on’ care leading to perceptions of reduced psycho‐social safety. Conclusion SA patients' experiences of remote‐led primary care access and care delivery were negative with only a minority viewing it positively and for certain limited scenarios. Face‐to‐face models of care remain the preferred mode of consultation, particularly for those with LEP. Hybrid models of access offer patients the greatest choice, and are likely to meet the varying needs of the South‐Asian patient population going forwards. The remote first approach to primary care may be achievable as a service ideal, but its limitations need to be recognised and accounted for to ensure that primary care can be an equitable service, both now and in the future. Public Contribution Members of the public were involved in all phases of research in the study. This included co‐working in partnership throughout the study including, reviewing patient‐facing documents, recruiting participants, data facilitation, translation work, interpretation of the data and co‐authors on this manuscript. The key to the success of our study was collaborative teamwork, which involved experienced members of the public with SA cultural knowledge working together with and integral to the research team for all components.

Abstract Patient and Public Involvement and Engagement (PPIE) in research is recognised by the National Institute for Health and Care Research as crucial for high quality research with practical benefit for patients and carers. Patient and public contributors can provide both personal knowledge and lived experiences which complement the perspectives of the academic research team. Nevertheless, effective PPIE must be tailored to the nature of the research, such as the size and scope of the research, whether it is researcher-led or independently commissioned, and whether the research aims to design an intervention or evaluate it. For example, commissioned research evaluations have potential limits on how PPIE can feed into the design of the research and the intervention. Such constraints may require re-orientation of PPIE input to other functions, such as supporting wider engagement and dissemination. In this commentary, we use the ‘Guidance for Reporting Involvement of Patients and the Public’ (GRIPP2) short form to share our own experiences of facilitating PPIE for a large, commissioned research project evaluating the National Health Service Diabetes Prevention Programme; a behavioural intervention for adults in England who are at high risk of developing type 2 diabetes. The programme was already widely implemented in routine practice when the research project and PPIE group were established. This commentary provides us with a unique opportunity to reflect on experiences of being part of a PPIE group in the context of a longer-term evaluation of a national programme, where the scope for involvement in the intervention design was more constrained, compared to PPIE within researcher-led intervention programmes. We reflect on PPIE in the design, analysis and dissemination of the research, including lessons learned for future PPIE work in large-scale commissioned evaluations of national programmes. Important considerations for this type of PPIE work include: ensuring the role of public contributors is clarified from the outset, the complexities of facilitating PPIE over longer project timeframes, and providing adequate support to public contributors and facilitators (including training, resources and flexible timelines) to ensure an inclusive and considerate approach. These findings can inform future PPIE plans for stakeholders involved in commissioned research.

Abstract Participatory arts are increasingly recognised as a valuable and accessible mechanism for giving a voice to the experiences of individuals’ health and healthcare. In recent years, there has been a move towards embedding participatory arts-based models into public engagement processes. Here, we contribute to the existing literature on the use of participatory arts-based approaches and their role in health research and healthcare practise, focusing on two interlinked approaches, the creation of personas and storytelling. We draw on two recent projects which have utilised these approaches to inform subsequent healthcare research and as a professional training tool to improve patient experience in a healthcare setting. We add to emerging literature to outline the benefits of these approaches in supporting research and training in healthcare settings, with a focus towards the co-produced foundations of these approaches. We demonstrate how such approaches can be utilised to capture different forms of voices, experiences and perspectives to help inform healthcare research and training, rooted in the lived experience of individuals who are directly involved in the creative process of developing personas via storytelling. These approaches challenge the listener to “walk in someone else’s shoes”, using their own homes and lives as a theatrical set in which to envisage someone else’s story, involving the listener in the creative process through (re)imagining the stories and experiences of the characters. Greater use of immersive, co-produced participatory art-based approaches should be used in PPIE to inform research and training in healthcare settings as a means of centring those with lived experience through co-production. Involving those with lived experience, particularly from groups who are traditionally excluded from research, via a process which is based on co-creation and co-production, reorientates the researcher-participant dynamic to fully centre those involved in the research at the heart of the tools used to guide health and healthcare research. In this way, it may also aid in trust and relationship building between institutions and communities in a way which is focused around positive, creative methods to aid health research and healthcare processes. Such approaches may help to break down barriers between academic institutions, healthcare sites and communities.

Aim This qualitative study explores with health professionals the provision of, and challenges for, postdischarge stroke care, focussing on eating, drinking and psychological support across India.Design Qualitative semistructured interviews.Setting Seven geographically diverse hospitals taking part in a Global Health Research Programme on Improving Stroke Care in India.Participants A purposive sample of healthcare professionals with current experience of working with patients who had a stroke.Results Interviews with 66 healthcare professionals (23 nurses (14 staff nurses; 7 senior nurse officers; 1 intensive care unit nurse; 1 palliative care nurse)); 16 doctors (10 neurologists; 6 physicians); 10 physiotherapists; 5 speech and language therapists; 4 occupational therapists; 4 dieticians; 2 psychiatrists; and 2 social workers resulted in three main themes: integrated inpatient discharge care planning processes; postdischarge patient and caregiver role and challenges; patient and caregiver engagement post discharge.Conclusions Discharge planning was integrated and customised, although resources were limited in some sites. Task shifting compensated for a lack of specialists but was limited by staff education and training. Caregivers faced challenges in accessing and providing postdischarge care. Postdischarge care was mainly hospital based, supported by teleservices, especially for rural populations. Further research is needed to understand postdischarge care provision and the needs of stroke survivors and their caregivers.

Abstract Background Getting knowledge from healthcare research into practice (knowledge mobilisation) remains a global challenge. One way in which researchers may attempt to do this is to develop products (such as toolkits, actionable tools, dashboards, guidance, audit tools, protocols and clinical decision aids) in addition to journal papers. Despite their increasing ubiquity, the development of such products remains under-explored in the academic literature. This study aimed to further this understanding by exploring the development of products from healthcare research and how the process of their development might influence their potential application. Methods This study compared the data generated from a prospective, longitudinal, comparative case study of four research projects which aimed to develop products from healthcare research. Qualitative methods included thematic analysis of data generated from semi-structured interviews (38), meeting observations (83 h) and project documents (300+). Cases were studied for an average of 11.5 months (range 8–19 months). Results Case comparison resulted in the identification of three main themes with the potential to affect the use of products in practice. First, aspects of the product, including the perceived need for the specific product being identified, the clarity of product aim and clarity and range of end-users. Second, aspects of development, whereby different types of stakeholder engagement appear to influence potential product application, which either needs to be ‘meaningful’, or delivered through the implicit understanding of users’ needs by the developing team. The third, overarching theme, relates to the academic context in which products are developed, highlighting how the academic context perpetuates the development of products, which may not always be useful in practice. Conclusions This study showed that aspects of products from healthcare research (need/aim/end-user) and aspects of their development (stakeholder engagement/implicit understanding of end-users) influence their potential application. It explored the motivation for product development and identifies the influence of the current academic context on product development. It shows that there is a tension between ideal ‘systems approaches’ to knowledge mobilisation and ‘linear approaches’, which appear to be more pervasive in practice currently. The development of fewer, high-quality products which fulfil the needs of specified end-users might act to counter the current cynicism felt by many stakeholders in regard to products from healthcare research.

Plain English summary: For children aged zero to eight years old there are a wide range of community services geared to supporting health, pre-school education, and parenting skills and knowledge. Getting the right services at the right time in early childhood can make a major difference to a child’s health and development and influence their physical and mental health outcomes into adulthood. We know there are individuals from a wide range of sectors working with families during early childhood. Sectors include the health system, education, government ministries, childcare centres, and community programs. Despite working with many of the same families, each sector’s services are often seen as separate which means that the opportunity to develop shared, family centred goals can be missed. In northern British Columbia, Canada we hosted a virtual event with 121 people who work in roles that support children between the ages of zero to eight and their families living in smaller, more rural communities. Using a blend of pre-recorded videos and a live online workshop we drew together a community of providers to learn about the work they are doing. Specifically, we were interested in exploring ways in which we can improve working together to support positive early childhood experiences for children and their families.

Abstract Background Around 2 million people have migrated from Central and Eastern Europe to the UK since 2004. The UK Central and Eastern European Community (UK‐CEE) are disproportionately exposed to the social determinants of poor physical and mental health. Their health and healthcare beliefs remain under‐researched, particularly regarding primary care. Objective This review explores UK‐CEE community members' use and perceptions of UK general practice. Methods A systematic search of nine bibliographic databases identified 2094 publications that fulfilled the search criteria. Grey literature searches identified 16 additional relevant publications. Screening by title and abstract identified 201 publications of relevance, decreasing to 65 after full‐text screening. Publications were critically appraised, with data extracted and coded. Thematic analysis using constant comparison allowed generation of higher‐order thematic constructs. Results Full UK‐CEE national representation was achieved. Comparatively low levels of GP registration were described, with ability, desire and need to engage with GP services shaped by the interconnected nature of individual community members' cultural and sociodemographic factors. Difficulties overcoming access and in‐consultation barriers are common, with health expectations frequently unmet. Distrust and dissatisfaction with general practice often persist, promoting alternative health‐seeking approaches including transnational healthcare. Marginalized UK‐CEE community subgroups including Roma, trafficked and homeless individuals have particularly poor GP engagement and outcomes. Limited data on the impact of Brexit and COVID‐19 could be identified. Conclusions Review findings demonstrate the need for codesigned approaches to remove barriers to engagement, culturally adapt and develop trust in GP care for UK‐CEE individuals. Community Involvement Community members and stakeholders shaped the conceptualisation of the review question and validation of emergent themes.

Background Mobile apps for health (mHealth) have the potential to support people living with dementia. However, dementia is a complex and progressive condition that imposes specific constraints on the introduction/use of mhealth. Few studies have explored mHealth adoption and use within the complexity of everyday domestic settings. This study used an existing App co-designed with people living with mild cognitive and communication impairment (PWMCCI) due to learning disabilities and examined the usefulness for PWMICCI due to dementia and their carers. Methods A qualitative study of people with dementia and their carers. Data were collected in a phased approach to identify the potential need for, as well as the usability and utility of the app. Analysis employed the Domestication of Technology Model (DTM) to explore, in a novel way mHealth, in this user group(s). Results Most participants did not adopt the mHealth during the study period but some ( n = 2) did routinely as it fulfilled a unique, unmet need. The use of DTM highlighted the complexities of dementia, pressure on carers and duplication of effort created barriers to app adoption and use in the long term. Conclusions The ability of mHealth to support PWMCCI due to dementia and/or their carers may have potential. Users were motivated to try the technology but for any potential to be fully realised, the interplay between complexity of the condition including its progressive nature, demand on carers and nature of the technology needs to be more fully understood. Such issues place unique constraints around the size and window of opportunities for mHealth in this user group.

Plain English summary The National Institute of Health Research (NIHR) Greater Manchester Patient Safety Translational research Centre (GMPSTRC) carries out research to improve patient safety. We work in partnership with patients and members of the public to plan, manage, design, and carry out the research. This is labelled as patient and public involvement. A key area of GMPSTRC research focuses on people who may be marginalised from healthcare and potentially suffer increased patient safety risks relative to the general population. COVID-19 impacted on research in multiple ways, notably how researchers work with members of the public. Remote working via the use of internet enabled technology has now become more commonplace, although this raises concerns about digital exclusion and how to address barriers when face-to-face PPI is not possible. This article showcases three examples of how researchers and public contributors with lived experience have adapted to working together during the COVID-19 pandemic. These case examples are: (1) setting up a public involvement group for developing an intervention to reduce medication errors for adults with vision impairments; (2) working with a pre-existing group of public contributors who are adults and carers with lived experience of self-harm and/or suicide; and (3) working with a charity called Groundswell who train and support researchers with lived experience of homelessness. Challenges during COVID-19 have been making video conferencing meetings accessible to members who have a range of different needs, and addressing the digital divide by allowing members flexibility in how they contribute to research. The article provides examples of how these challenges were addressed.

Plain English summary The way we collect and use patient experience data is important because of concern that patients and carers may be excluded by the limited ways it is currently done in NHS services. In this study, we worked in partnership with researchers, staff, patient and carer participants, and patient and public involvement and engagement contributors, to co-design new tools for the collection, analysis and presentation of patient experience data. We focused on services for people with musculoskeletal conditions and services for people with severe mental health conditions. Our PPIE group, formed at the start of the study, represented a range of relevant and diverse health experiences from patients and carers of specialist services, and primary care. The aim of this paper is to share our experiences from working in partnership with our PPIE contributors on the co-design work of the study. Illustrations of how the PPIE activities added crucial insights in the shaping of the tools are given alongside the research data from patients, carers and staff participants. We experienced some challenges during the project. We discuss how we managed to work together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement). Our experiences of developing multiple components of PPIE work for this study demonstrates the importance of tailoring PPIE to suit different settings, and to complement people’s strengths and capacity. It also shows the value of bringing diverse experiences together enabling a shared approach to co-design. Researchers and PPIE contributors wrote this paper jointly.

Abstract Background The number of individuals with a visual impairment in the UK was estimated a few years ago to be around 1.8 million. People can be visually impaired from birth, childhood, early adulthood or later in life. Those with visual impairment are subject to health inequities and increased risk for patient safety incidents in comparison to the general population. They are also known to be at an increased risk of experiencing medication errors compared to those without visual impairment. In view of this, this review aims to understand the issues of medication safety for VI people. Methods/design Four electronic bibliographic databases will be searched: MEDLINE, Embase, PsycInfo and CINAHL. Our search strategy will include search combinations of two key blocks of terms. Studies will not be excluded based on design. Included studies will be empirical studies. They will include studies that relate to both medication safety and visual impairment. Two reviewers (SG and LR) will screen all the titles and abstracts. SG, LR, RM, SCS and PL will perform study selection and data extraction using standard forms. Disagreements will be resolved through discussion or third party adjudication. Data to be collected will include study characteristics (year, objective, research method, setting, country), participant characteristics (number, age, gender, diagnoses), medication safety incident type and characteristics. Discussion The review will summarise the literature relating to medication safety and visual impairment.

Purpose: Pathological phimosis in childhood typically results in circumcision. Long-term follow-up data for men circumcised in childhood are lacking. This study sought long-term data regarding satisfaction with circumcision and voiding symptoms from men who had childhood circumcision between 1989 and 2010. Methods: Following ethical approval, a postal survey was sent to males > 17 years who underwent circumcision at an age < 16 years for pathological phimosis. Results: The survey was sent to 177 men, 23 completed surveys were returned [19 histology proven Lichen Sclerosus [LS, BXO], 4 chronic balanitis]. Mean age at circumcision was 9.7 years [range 3-15], at survey 23.5 years [18-37]. Seven [all > 9 years] remembered the decision for circumcision. Four warranted urologist review as adults, three required surgery for voiding symptoms and one still performs structure therapy; all had LS. When asked which treatment option[s] they would have considered; ten of them chose circumcision, nine of them chose preputioplasty, eight of them chose topical creams [two of them chose all three options, one man chose both foreskin preserving options]. Eight agreed with the statement “Having a circumcision in childhood or adolescence had an impact on my adult life”; this was positive in two men but negative in five men-they wouldn’t have chosen circumcision. Conclusions: The response rate to the survey was low, making it difficult to draw firm conclusions. However, even in this limited sample, not all men would choose childhood circumcision for pathological phimosis, data supporting the need for larger studies of alternative treatment options. In addition, some men circumcised for childhood LS had significant voiding difficulties in adulthood.

Abstract Background Despite high level of health care need amongst people experiencing homelessness, poor access is a major concern. This is sometimes due to organisational and bureaucratic barriers, but also because they often feel stigmatised and treated badly when they do seek health care. The COVID-19 pandemic and the required social distancing measures have caused unprecedented disruption and change for the organisation of primary care, particularly for people experiencing homelessness. Against this backdrop there are many questions to address regarding whether the recent changes required to deliver services to people experiencing homelessness in the context of COVID-19 will help to address or compound problems in accessing care and inequalities in health outcomes. Methods An action led and participatory research methodology will be employed to address the study objectives. Interviews with people experiencing homelessness were will be conducted by a researcher with lived experience of homelessness. Researchers with lived experience are able to engage with vulnerable communities in an empathetic, non-judgemental way as their shared experience promotes a sense of trust and integrity, which in turn encourages participation in research and may help people speak more openly about their experience. The experiences of health professionals and stakeholders delivering and facilitating care for people experiencing homelessness during the pandemic will also be explored. Discussion It is important to explore whether recent changes to the delivery of primary care in response to the COVID-19 pandemic compromise the safety of people experiencing homelessness and exacerbate health inequalities. This could have implications for how primary healthcare is delivered to those experiencing homelessness not only for the duration of the pandemic but in the future.

[This corrects the article DOI: 10.1371/journal.pmed.1003932.].

Objectives To: (1) complete an integrative literature review of transition studies that focus on individuals with intersex traits; (2) conduct an environmental scan of the current resources (practice guidelines, policies and procedures) used by healthcare providers working with Canadians with intersex traits; (3) investigate the experiences of Canadians with intersex traits in their healthcare transitions across the lifespan and (4) assess the understanding of healthcare providers about these transitions.Design A qualitative prospective community participation study was conducted. It used mixed methods including an environmental scan and semistructured engagement sessions.Setting The environmental scan examined resources available throughout Canada. The engagement sessions took place in British Columbia and Ontario, Canada.Participants Sixteen participants were recruited. These included 13 individuals with intersex traits (a heterogeneous group of congenital conditions affecting the development of sex characteristics) and three caregivers.Methods Mixed methods included an integrated literature review, environmental scan and qualitative approaches developed in collaboration with community partners.Results The literature review identified gaps in transition care for individuals with intersex traits. The environmental scan uncovered no specific resources used by healthcare providers working with patients with intersex traits, though several general guidelines were used. Engaging providers in the study was problematic. Thematic analysis generated three main themes that emerged from the engagement sessions: (1) transition is a lifespan activity; (2) building personal agency is valuable and (3) well-being promotion is an application of health literacy.Conclusions Transition resources for individuals living in Canada with intersex are scarce. Transitions happen across the lifespan with ownership of thought and actions seen as acts of personal agency. Health literacy skills and knowledge change with increased age, yet the primary source of knowledge often remained important in the individual’s autobiographical self.

Background COVID-19 vaccine uptake is lower amongst most minority ethnic groups compared to the White British group in England, despite higher COVID-19 mortality rates. Here, we add to existing evidence by estimating inequalities for 16 minority ethnic groups, examining ethnic inequalities within population subgroups, and comparing the magnitudes of ethnic inequalities in COVID-19 vaccine uptake to those for routine seasonal influenza vaccine uptake. Methods and findings We conducted a retrospective cohort study using the Greater Manchester Care Record, which contains de-identified electronic health record data for the population of Greater Manchester, England. We used Cox proportional hazards models to estimate ethnic inequalities in time to COVID-19 vaccination amongst people eligible for vaccination on health or age (50+ years) criteria between 1 December 2020 and 18 April 2021 (138 days of follow-up). We included vaccination with any approved COVID-19 vaccine, and analysed first-dose vaccination only. We compared inequalities between COVID-19 and influenza vaccine uptake adjusting by age group and clinical risk, and used subgroup analysis to identify populations where inequalities were widest. The majority of individuals (871,231; 79.24%) were White British. The largest minority ethnic groups were Pakistani (50,268; 4.75%), ‘other White background’ (43,195; 3.93%), ‘other ethnic group’ (34,568; 3.14%), and Black African (18,802; 1.71%). In total, 83.64% (919,636/1,099,503) of eligible individuals received a COVID-19 vaccine. Uptake was lower compared to the White British group for 15 of 16 minority ethnic groups, with particularly wide inequalities amongst the groups ‘other Black background’ (hazard ratio [HR] 0.42, 95% CI 0.40 to 0.44), Black African (HR 0.43, 95% CI 0.42 to 0.44), Arab (HR 0.43, 95% CI 0.40 to 0.48), and Black Caribbean (HR 0.43, 95% CI 0.42 to 0.45). In total, 55.71% (419,314/752,715) of eligible individuals took up influenza vaccination. Compared to the White British group, inequalities in influenza vaccine uptake were widest amongst the groups ‘White and Black Caribbean’ (HR 0.63, 95% CI 0.58 to 0.68) and ‘White and Black African’ (HR 0.67, 95% CI 0.63 to 0.72). In contrast, uptake was slightly higher than the White British group amongst the groups ‘other ethnic group’ (HR 1.11, 95% CI 1.09 to 1.12) and Bangladeshi (HR 1.08, 95% CI 1.05 to 1.11). Overall, ethnic inequalities in vaccine uptake were wider for COVID-19 than influenza vaccination for 15 of 16 minority ethnic groups. COVID-19 vaccine uptake inequalities also existed amongst individuals who previously took up influenza vaccination. Ethnic inequalities in COVID-19 vaccine uptake were concentrated amongst older and extremely clinically vulnerable adults, and the most income-deprived. A limitation of this study is the focus on uptake of the first dose of COVID-19 vaccination, rather than full COVID-19 vaccination. Conclusions Ethnic inequalities in COVID-19 vaccine uptake exceeded those for influenza vaccine uptake, existed amongst those recently vaccinated against influenza, and were widest amongst those with greatest COVID-19 risk. This suggests the COVID-19 vaccination programme has created additional and different inequalities beyond pre-existing health inequalities. We suggest that further research and policy action is needed to understand and remove barriers to vaccine uptake, and to build trust and confidence amongst minority ethnic communities. Ruth Elizabeth Watkinson and colleagues estimate inequalities in Covid-19 vaccine uptake for 16 minority ethnic groups and compare them to those in routine seasonal Influenza vaccine uptake. Author summary Why was this study done? Previous research has found wide disparities in early COVID-19 vaccine uptake between ethnic groups in many countries. Uptake of COVID-19 vaccination was particularly low amongst older adults belonging to Black or Black British ethnic groups in the UK. However, previous research has tended to use broad ethnic groupings, and ethnic inequalities in COVID-19 vaccination uptake had not been contextualised by comparison with inequalities in uptake of previous vaccination programmes. What did the researchers do and find? We used electronic health records for the population of Greater Manchester, England, to estimate inequalities in COVID-19 and seasonal influenza vaccine uptake between the White British group and 16 minority ethnic groups. We found that ethnic inequalities in COVID-19 vaccine uptake are far wider than those seen previously for seasonal influenza vaccine uptake, and exist even amongst those recently vaccinated against influenza. Ethnic inequalities in COVID-19 vaccine uptake are concentrated amongst the most vulnerable—those living in the most deprived neighbourhoods, and older and extremely clinically vulnerable adults. What do these findings mean? These findings suggest that the COVID-19 vaccine rollout has exacerbated pre-existing health inequalities in vaccine uptake. Themes raised in our public and community discussion groups suggest that both lower trust in COVID-19 vaccines and practical barriers to vaccine access likely contribute to lower COVID-19 vaccine uptake amongst minority ethnic groups. Further research and community engagement is needed to build trust and confidence amongst minority ethnic communities, and to better understand and remove barriers to vaccine access.

Abstract Background Patient feedback in the English NHS is now widespread and digital methods are increasingly used. Adoption of digital methods depends on socio-technical and contextual factors, alongside human agency and lived experience. Moreover, the introduction of these methods may be perceived as disruptive of organisational and clinical routines. The focus of this paper is on the implementation of a particular digital feedback intervention that was co-designed with health professionals and patients (the DEPEND study). Methods The digital feedback intervention was conceptualised as a complex intervention and thus the study focused on the contexts within which it operated, and how the different participants made sense of the intervention and engaged with it (or not). Four health care sites were studied: an acute setting, a mental health setting, and two general practices. Qualitative data was collected through interviews and focus groups with professionals, patients and carers. In total 51 staff, 24 patients and 8 carers were included. Forty-two observations of the use of the digital feedback system were carried out in the four settings. Data analysis was based on modified grounded theory and Normalisation Process Theory (NPT) formed the conceptual framework. Results Digital feedback made sense to health care staff as it was seen as attractive, fast to complete and easier to analyse. Patients had a range of views depending on their familiarity with the digital world. Patients mentioned barriers such as kiosk not being visible, privacy, lack of digital know-how, technical hitches with the touchscreen. Collective action in maintaining participation again differed between sites because of workload pressure, perceptions of roles and responsibilities; and in the mental health site major organisational change was taking place. For mental health service users, their relationship with staff and their own health status determined their digital use. Conclusion The potential of digital feedback was recognised but implementation should take local contexts, different patient groups and organisational leadership into account. Patient involvement in change and adaptation of the intervention was important in enhancing the embedding of digital methods in routine feedback. NPT allowed for a in-depth understanding of actions and interactions of both staff and patients.

Abstract Background Marginalised groups (‘populations outside of mainstream society’) experience severe health inequities, as well as increased risk of experiencing patient safety incidents. To date however no review exists to identify, map and analyse the literature in this area in order to understand 1) which marginalised groups have been studied in terms of patient safety research, 2) what the particular patient safety issues are for such groups and 3) what contributes to or is associated with these safety issues arising. Methods Scoping review. Systematic searches were performed across six electronic databases in September 2019. The time frame for searches of the respective databases was from the year 2000 until present day. Results The searches yielded 3346 articles, and 67 articles were included. Patient safety issues were identified for fourteen different marginalised patient groups across all studies, with 69% (n = 46) of the studies focused on four patient groups: ethnic minority groups, frail elderly populations, care home residents and low socio-economic status. Twelve separate patient safety issues were classified. Just over half of the studies focused on three issues represented in the patient safety literature, and in order of frequency were: medication safety, adverse outcomes and near misses. In total, 157 individual contributing or associated factors were identified and mapped to one of seven different factor types from the Framework of Contributory Factors Influencing Clinical Practice within the London Protocol. Patient safety issues were mostly multifactorial in origin including patient factors, health provider factors and health care system factors. Conclusions This review highlights that marginalised patient groups are vulnerable to experiencing a variety patient safety issues and points to a number of gaps. The findings indicate the need for further research to understand the intersectional nature of marginalisation and the multi-dimensional nature of patient safety issues, for groups that have been under-researched, including those with mental health problems, communication and cognitive impairments. Such understanding provides a basis for working collaboratively to co-design training, services and/or interventions designed to remove or at the very least minimise these increased risks. Trial registration Not applicable for a scoping review.

BackgroundThere is a growing interest in using mobile apps to support communication, safety, and well-being. Evidence directly from people with dementia regarding the usability, usefulness, and relevance of mobile apps is limited. ObjectiveThis paper describes the protocol of a study that will evaluate an app designed for supporting communication, safety, and well-being among people living with dementia. The study aims to understand if the app can enhance safety through improved communication among users. MethodsThe study will use participatory qualitative methods over 3 cycles of evaluation with co-designers (service users, their families, and care practitioners). The study will be developed in partnership with a specialist home care service in England. Purposive case selection will be performed to ensure that the cases exemplify differences in experiences. The app will be evaluated in a walk-through workshop by people living with early-stage dementia and then trialed at home by up to 12 families in a try-out cycle. An amended version will be evaluated in a final walk-through workshop during cycle 3. Data will be collected from at least 4 data sources during the try-out phase and analyzed thematically. An explanatory multiple case study design will be used to synthesize and present the evidence from the three cycles, drawing on the Normalization Process Theory to support the interpretation of the findings. ResultsThe study is ready to be implemented, but it was paused to protect vulnerable individuals during the COVID-19 pandemic in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic as well as for providing insight into the challenges of social isolation that arise from living with dementia. ConclusionsEvaluating a mobile app for enhancing communication, safety, and well-being among people living with dementia contributes to the key ambitions enshrined in policy and practice—championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study will involve co-designers living with dementia, so that the voices of service users can be used to highlight the benefits and challenges of assistive technology and shape the future development of apps that enhance safety by improving communication. International Registered Report Identifier (IRRID)PRR1-10.2196/19543

Background Little is known about factors that influence discharge decision-making for people admitted to medium-secure services from prison, particularly for those who are returned to prison following treatment. Aims To explore the organisational influences on care pathways through medium-secure services for those admitted from prison. Method We recruited 24 clinicians via purposive and snowball sampling; 13 shared their experiences via a focus group, and 11 shared their experiences via individual semi-structured interviews. A thematic analysis was conducted, producing three overarching themes: maintenance of throughput and service provision, class of two systems, and desirable and undesirable patients. Results Data indicated external factors that direct and, at times, limit clinicians’ pathway decisions, including commissioning criteria and legal status under the Mental Health Act 1983 and within the criminal courts system (i.e. whether on remand or sentenced). These factors also influence how clinicians view the role and function of medium-secure services within the wider forensic mental health system, and therefore the types of patients that are deemed ‘appropriate’ for continued treatment when making discretionary pathway decisions. Conclusions There remains a deficit in adequate resources to meet the mental health needs of prisoners who are admitted to medium-secure services. To meet the clinical need of all admissions, criteria for prolonged treatment in medium-secure services needs to be reconsidered, and it is likely that provision for the medium-secure hospital estate will need to increase substantially if effective rehabilitation of those who transfer from prison is to take place.

Objectives People experiencing homelessness are frequent users of secondary care. Currently, there is no study of potentially preventable admissions for homeless patients in England. We aim to estimate the number of potentially preventable hospital admissions for homeless patients and compare to housed patients with similar characteristics.Design Retrospective matched cohort study.Setting Hospitals in England.Participants 16 161 homeless patients and 74 780 housed patients aged 16–75 years who attended an emergency department (ED) in England in 2013/2014, matched on the basis of age, sex, ED attended and primary diagnosis.Primary and secondary outcome measures Annual counts of admissions, emergency admissions, ambulatory care-sensitive (ACS) emergency admissions, acute ACS emergency admissions and chronic ACS emergency admissions over the following 4 years (2014/2015–2017/2018). We additionally compare the prevalence of specific ACS conditions for homeless and housed patients.Results Mean admissions per 1000 patients per year were 470 for homeless patients and 230 for housed patients. Adjusted for confounders, annual admissions were 1.79 times higher (incident rate ratio (IRR)=1.79; 95% CI 1.69 to 1.90), emergency admissions 2.08 times higher (IRR=2.08; 95% CI 1.95 to 2.21) and ACS admissions 1.65 times higher (IRR=1.65; 95% CI 1.51 to 1.80), compared with housed patients. The effect was greater for acute (IRR=1.78; 95% CI 1.64 to 1.93) than chronic (IRR=1.45; 95% CI 1.27 to 1.66) ACS conditions. ACS conditions that were relatively more common for homeless patients were cellulitis, convulsions/epilepsy and chronic angina.Conclusions Homeless patients use hospital services at higher rates than housed patients, particularly emergency admissions. ACS admissions of homeless patients are higher which suggests some admissions may be potentially preventable with improved access to primary care. However, these admissions comprise a small share of total admissions.

Abstract Background The benefit of a “diagnosis” of pre-diabetes in very elderly patients is debated. How clinicians manage pre-diabetic blood results in these patients is unknown. This study aims to understand how clinicians are “diagnosing” older patients with pre-diabetic blood parameters. Methods Semi-structured interviews and focus groups with health care staff (24 total participants) were conducted in the north of England. Interviews and focus groups were recorded, transcribed and analysed thematically. A grounded theory approach was taken with the theory of candidacy being used as a sensitising concept through which questions were framed and results interpreted. Results There is a complex system of competing pressures that influence a clinician in deciding whether, and in what way, to inform a very elderly patient that they have pre-diabetes. The majority of clinicians adjust their management of pre-diabetes to the age and perceived risk/benefit for the patient. Whilst some clinicians choose not to inform certain patients of their blood results, many clinicians maintain, what could be seen as a somewhat paradoxical approach of labeling all older patients with pre-diabetes but downplaying the significance to the patient. The policy, organisational context, workload and professional constraints under which clinicians work, play a significant role in shaping how they deal with pre-diabetic blood results in the very elderly. Conclusion There has been recent acknowledgement of how policy and organisational context frames decision-making, but there is a lack of evidence on how this influences uncertainty and dilemmas in decision-making in practice. These findings add further weight for the argument that treatment burden should be included in clinical guidelines.

Objectives Primary care records have traditionally served the needs and demands of clinicians rather than those of the patient. In England, general practices must promote and offer registered patients online access to their primary care record, and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients’ needs and expectations regarding online access to their record. This study explored what patients and carers want from online access to their electronic primary care health record, their experiences of using it, how they would like to interact with their record and what support they may need.Design Focus groups and semistructured interviews using purposive sampling to achieve a good sociodemographic spread. Interviews were digitally audiorecorded, transcribed and coded using an established thematic approach.Setting Focus groups and interviews were conducted in community settings in the UK.Participants Fifty-four individuals who were either eligible for the National Health Service Health Check, living with more than one long-term condition or caring for someone else.Results Participants views regarding online access were categorised into four main themes: awareness, capabilities, consequences and inevitability. Participants felt online access should be better promoted, and suggested a number of additional functions, such as better integration with other parts of the healthcare system. It was felt that online access could improve quality of care (eg, through increased transparency) but also have potential negative consequences (eg, by replacing face to face contact). A move towards more online records access was considered inevitable, but participants noted a need for additional support and training in using the online record, especially to ensure that health inequalities are not exacerbated.Conclusions Discussions with patients and carers about their views of accessing online records have provided useful insights into future directions and potential improvements for this service.

Introduction Patients and carers should be active partners in patient safety with healthcare professionals and be empowered to use personalised approaches to identify safety concerns and work together to prevent them. This protocol paper details a study to examine the feasibility of a multicomponent intervention to involve patients and/or carers in patient safety in primary care in the UK.Methods and analysis This is a two-phase, non-randomised feasibility mixed methods pragmatic study of a patient safety guide for primary care (PSG-PC). 8 general practices will recruit 120 patient and/or carer participants. All patient and/or carer participants will receive the PSG-PC. It will examine the feasibility and acceptability of the PSG-PC in primary care settings in patients aged 18 years or older who attend appointments at general practice with health professionals four or more times per year as either patients or carers. It will identify secondary outcomes for improving patient safety, health status and patient empowerment, and reducing health service utilisation over 6 months between baseline and 6-month follow-ups. The findings will inform whether a main effectiveness trial is feasible and, if so, how it should be designed, and how many patients and practices will be needed. The study will be undertaken between January 2020 and September 2021.Ethics and dissemination Ethical approval was obtained from the National Health Service London-West London and Gene Therapy Advisory Committee Research Ethics Committee (reference: 19/LO/1289). Research findings will be disseminated with participating general practices and shared in a range of different ways to engage different audiences, including presenting at international and national conferences, publishing in open-access, peer-reviewed journals and facilitating dissemination workshops within local communities with patients, carers and healthcare professionals.Trial registration number ISRCTN90222092.

IntroductionThe transition of patients across care settings is associated with a high risk of errors and preventable medication-related harm. Ensuring effective communication of information between health professionals is considered important for improving patient safety. A National Health Service(NHS) organisation in the North West of England introduced an electronic transfer of care around medicines (TCAM) system which enabled hospital pharmacists to send information about patient's medications to their nominated community pharmacy. We aimed to understand the adoption, and the implications for sustainable use in practice of the TCAM service.MethodsWe evaluated the TCAM service in a Clinical Commissioning Group (CCG) and NHS Foundation Trust in Salford, United Kingdom (UK). Participants were opportunistically recruited to take part in qualitative interviews through stakeholder networks and during hospital admission, and included hospital pharmacists, hospital pharmacy technicians, community pharmacists, general practice-based pharmacists, patients and their carers. A thematic analysis, that was iterative and concurrent with data collection, was undertaken using a template approach. The interpretation of the data was informed by broad sociotechnical theory.ResultsTwenty-three interviews were conducted with health care professionals patients and carers. The ways in which the newly implemented TCAM intervention was adopted and used in practice and the perceptions of it from different stakeholders were conceptualised into four main thematic areas: The nature of the network and how it contributed to implementation, use and sustainability; The material properties of the system; How work practices for medicines safety were adapted and evolved; and The enhancement of medication safety activities. The TCAM intervention was perceived as effective in providing community pharmacists with timely, more accurate and enhanced information upon discharge. This allowed for pharmacists to enhance clinical services designed to ensure that accurate medication reconciliation was completed, and the correct medication was dispensed for the patient.ConclusionsBy providing pharmacy teams with accurate and enhanced information the TCAM intervention supported healthcare professionals to establish and/or strengthen interprofessional networks in order to provide clinical services designed to ensure that accurate medication reconciliation and dispensing activities were completed. However, the intervention was implemented into a complex and at times fragmented network, and we recommend opportunities be explored to fully integrate this network to involve patients/carers, general practice pharmacists and two-way communication between primary and secondary care to further enhance the reach and impact of the TCAM service.

Background: Collecting NHS patient experience data is critical to ensure the delivery of high-quality services. Data are obtained from multiple sources, including service-specific surveys and widely used generic surveys. There are concerns about the timeliness of feedback, that some groups of patients and carers do not give feedback and that free-text feedback may be useful but is difficult to analyse. Objective: To understand how to improve the collection and usefulness of patient experience data in services for people with long-term conditions using digital data capture and improved analysis of comments. Design: The DEPEND study is a mixed-methods study with four parts: qualitative research to explore the perspectives of patients, carers and staff; use of computer science text-analytics methods to analyse comments; co-design of new tools to improve data collection and usefulness; and implementation and process evaluation to assess use of the tools and any impacts. Setting: Services for people with severe mental illness and musculoskeletal conditions at four sites as exemplars to reflect both mental health and physical long-terms conditions: an acute trust (site A), a mental health trust (site B) and two general practices (sites C1 and C2). Participants: A total of 100 staff members with diverse roles in patient experience management, clinical practice and information technology; 59 patients and 21 carers participated in the qualitative research components. Interventions: The tools comprised a digital survey completed using a tablet device (kiosk) or a pen and paper/online version; guidance and information for patients, carers and staff; text-mining programs; reporting templates; and a process for eliciting and recording verbal feedback in community mental health services. Results: We found a lack of understanding and experience of the process of giving feedback. People wanted more meaningful and informal feedback to suit local contexts. Text mining enabled systematic analysis, although challenges remained, and qualitative analysis provided additional insights. All sites managed to collect feedback digitally; however, there was a perceived need for additional resources, and engagement varied. Observation indicated that patients were apprehensive about using kiosks but often would participate with support. The process for collecting and recording verbal feedback in mental health services made sense to participants, but was not successfully adopted, with staff workload and technical problems often highlighted as barriers. Staff thought that new methods were insightful, but observation did not reveal changes in services during the testing period. Conclusions: The use of digital methods can produce some improvements in the collection and usefulness of feedback. Context and flexibility are important, and digital methods need to be complemented with alternative methods. Text mining can provide useful analysis for reporting on large data sets within large organisations, but qualitative analysis may be more useful for small data sets and in small organisations. Limitations: New practices need time and support to be adopted and this study had limited resources and a limited testing time. Future work: Further research is needed to improve text-analysis methods for routine use in services and to evaluate the impact of methods (digital and non-digital) on service improvement in varied contexts and among diverse patients and carers. Funding: This project was funded by the NIHR Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 28. See the NIHR Journals Library website for further project information.

Background: People aged ≥ 50 years constitute the fastest-growing group in the prison population of England and Wales. This population has complex health and social care needs. There is currently no national strategy to guide the development of the many-faceted services required for this vulnerable population; therefore, prisons are responding to the issue with a range of local initiatives that are untested and often susceptible to failure if they are not fully embedded in and securely funded as part of commissioned services. Objectives: The objectives were to establish the prevalence of dementia and mild cognitive impairment in prisoners in England and Wales and their health and social care needs; validate the six-item cognitive impairment test for routine use in prisons to aid early and consistent identification of older prisoners with possible dementia or mild cognitive impairment; identify gaps in current service provision; understand the first-hand experiences of prisoners living with dementia and mild cognitive impairment; develop a care pathway for prisoners with dementia and mild cognitive impairment; develop dementia and mild cognitive impairment training packages for staff and prisoners; and produce health economic costings for the care pathway and training packages. Design: This was a mixed-methods study. Setting: The study setting was prisons in England and Wales. Participants: Prisoners aged ≥ 50 years and multiagency staff working in prison discipline and health and social care services took part. Results: Quantitative research estimated that the prevalence rate of suspected dementia and mild cognitive impairment in the prison population of England and Wales is 8%. This equates to 1090 individuals. Only two people (3%) in our sample had a relevant diagnosis in their health-care notes, suggesting current under-recognition of these conditions. The prevalence rate in prisons was approximately two times higher among individuals aged 60–69 years and four times higher among those aged ≥ 70 years than among those in the same age groups living in the community. The Montreal Cognitive Assessment screening test was found to be more effective than the six-item cognitive impairment test assessment in the older prisoner population. Qualitative research determined that staff and prisoners lacked training in knowledge and awareness of dementia and mild cognitive impairment, and this leads to problematic behaviour being viewed as a disciplinary issue rather than a health issue. Local initiatives to improve the lives of prisoners with dementia and mild cognitive impairment are often disadvantaged by not being part of commissioned services, making them difficult to sustain. Multidisciplinary working is hampered by agencies continuing to work in silos, with inadequate communication across professional boundaries. A step-by-step care pathway for prisoners with dementia and mild cognitive impairment was developed, and two tiers of training materials were produced for staff and prisoners. Limitations: Our prevalence rate was based on the results of a standardised assessment tool, rather than on clinical diagnosis by a mental health professional, and therefore it may represent an overestimation. Furthermore, we were unable to distinguish subcategories of dementia. We were also unable to distinguish between a likely diagnosis of dementia and other conditions presenting with mild cognitive impairment, including learning disability, severe depression and hearing impairment. Questionnaires regarding current service provision were collected over an extended period of time, so they do not reflect a ‘snapshot’ of service provision at a particular point. Conclusions: We hypothesise that implementing the step-by-step care pathway and the training resources developed in this study will improve the care of older prisoners with dementia and mild cognitive impairment. Future work: The care pathway and training materials should be evaluated in situ. Alternatives to prison for those with dementia or mild cognitive impairment should be developed and evaluated. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 27. See the NIHR Journals Library website for further project information.

Abstract Background A specialist primary care oral surgery service combined with an electronic referral management and triage system was developed in response to concerns raised around overburdened secondary care services in the UK. Whilst the system has the potential to manage conflicting demand for oral surgery services against an objective need, the new pathway represents a number of challenges to existing working practices and could compromise the sustainability of existing hospital services. The aim of this research was to carry out a qualitative exploration of implementation of a new intervention to gain insight into how these challenges have manifested and been addressed. Methods Views were sought from stakeholders (dentists, hospital staff, commissioners and patients) at various time points over 3 years during and after implementation using semi-structured interviews. Normalization Process Theory informed a qualitative thematic analysis which was carried out using data from interview transcripts to identify important emerging issues. Results Themes emerging from the data were; amenability to change and assimilation into practice (primary care dentists), compliance and governance, changing perceptions of impact (secondary care staff and commissioners) understanding change in service provision and priorities for treatment (patients). The new pathway impacted stakeholders at different stages of implementation. Conclusion Electronic referral management with a primary care advanced service for oral surgery was successfully implemented in a specific area of the UK. The service model evaluated has the potential to be expanded across a wider geographical footprint and to support demand management in other specialist services.

Abstract Background A primary care oral surgery service was commissioned alongside an electronic referral management system in England, in response to rising demand for Oral Surgery services in secondary care. It is important to ensure that standards of quality and safety are similar to those in existing secondary care services, and that the new service is acceptable to stakeholders. The aim of this study is therefore to conduct an in depth case study to explore safety, quality, acceptability and implementation of the new service. Methods This case study draws on multiple sources of evidence to report on the commissioning process, implementation, treatment outcomes and acceptability to patients relating to a new oral surgery service in a primary care setting. A combination of audit data and interviews were analysed. Results Most referrals to the new service consisted of tooth extractions of appropriate complexity for the service. There were issues with lack of awareness of the new service in a primary care setting within referring primary care practices and patients at the start of implementation, however over time the service became a fully integrated part of the service landscape. Complications reported following surgery were low. Conclusion Patients liked the convenience of the new service in terms of shorter waiting time and geographical location and their patient reported experience measures and outcomes were similar to those reported in secondary care. Providing appropriate clinical governance was in place, oral surgery could safely be provided in a primary care setting for patients without complex medical needs. Attention needs to be paid to communication with general dental practices around changes to the service pathway during the early implementation period to ensure all patients can receive care in the most appropriate setting.

Abstract Background In primary care, older patients with multimorbidity (two or more long-term conditions) are especially likely to experience patient safety incidents. Risks to safety in this setting arise as a result of patient, staff and system factors; particularly where these interact or fail to do so. Recent research and policy highlight the important contribution patients can make to improving safety. Older patients with multimorbidity may have the most to gain from increasing their involvement but before interventions can be developed to support them to improve their patient safety, more needs to be known about how this is threatened and how patients respond to perceived threats. We sought to identify and describe threats to patient safety in primary care among older people with multimorbidity, to provide a better understanding of how these are experienced and to inform the development of interventions to reduce risks to patient safety. Methods Twenty-six older people, aged 65 or over, with multimorbidity were recruited to a longitudinal qualitative study. At baseline, data on their health and healthcare were collected through semi-structured interviews. Data were analysed thematically, using a framework developed from a previous synthesis of qualitative studies of patient safety in primary care. Results Threats to patient safety were organised into six themes, across three domains of health and care. These encompassed all aspects of the patient journey, from access to everyday management. Across the journey, many issues arose due to poor communication, and uncoordinated care created extra burdens for patients and healthcare staff. Patients’ sense of safety and trust in their care providers were especially threatened when they felt their needs were ignored, or when they perceived responses from staff as inappropriate or insensitive. Conclusions For older patients with multimorbidity, patient safety is intrinsically linked to the challenges people face when managing health conditions, navigating the healthcare system, and negotiating care. We consider the implications of this for the development of interventions to reduce threats to patient safety. Potential patient-centred mechanisms include providing patients with more realistic expectations for primary care, and supporting them to communicate their needs and concerns more effectively.

Plain English summary There are a growing number of mobile phones, watches and electronic devices which can be worn on the body to track aspects of health and well-being, such as daily steps, sleep and exercise. Dementia researchers think that these devices could potentially be used as part of future research projects, for example to help spot changes in daily activity that may signal the early symptoms of dementia. We asked a range of older people, including people living with dementia and their carers, to participate in interactive discussions about how future participants might find using these devices as part of research projects. We also invited volunteers to borrow a range of devices to test at home, giving them further insights. Discussions revealed that people were generally supportive of this type of research, provided they gave informed consent and that devices were discreet, comfortable and easy to use. They also valued technical support and regular feedback on study progress to encourage ongoing participation. These findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Our work shows that when given the right opportunities, people who are affected by dementia can provide valuable insights that can enhance the design, delivery and quality of future research. Abstract Background Increasingly, researchers are recognising the potential for connected health devices, including smartphones and smartwatches, to generate high resolution data about patterns of daily activity and health outcomes. One aim of the Dementias Platform UK (DPUK) project is to provide researchers with a secure means to collect, collate and link data generated by such devices, thereby accelerating this type of research in the field of dementia. We aimed to involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool, software platform and written guidance to support future studies. Methods Over 30 people attended a series of interactive workshops, drop-in sessions and meetings in Greater Manchester. This included people living with dementia and cognitive impairments, carers and people without memory problems. Discussions were tailored to suit different audiences and focused on the feasibility and acceptability of a range of different wearable devices and research designs. We also invited volunteers to borrow a device to test at home, enabling further insights from hands-on interactions with devices. Results Discussions revealed that people were supportive of connected health dementia research in principle, provided they gave informed consent and that devices were discreet, comfortable and easy to use. Moreover, they recommended technical support and regular feedback on study progress to encourage ongoing participation. Conclusion By using a range of discussion-based and practical activities, we found it was feasible to involve people affected by dementia and use their insights to shape the development of a software platform and device pool to support future connected health dementia research. We recommend that researchers planning such studies in future pay adequate attention to designing suitable participant information, technical support and mechanisms of providing study progress updates to support sustained engagement from participants.

Abstract Background Understandings of personal recovery have emerged as an alternative framework to traditional ideas of clinical progression, or symptom remission, in clinical practice. Most research in this field has focussed on the experience of individuals suffering with psychotic disorders and little research has been conducted to explore the experience of individuals with a personality disorder diagnosis, despite the high prevalence of such difficulties. The nature of the personality disorder diagnosis, together with high prevalence rates in forensic settings, renders the understanding of recovery in these contexts particularly problematic. The current study seeks to map out pertinent themes relating to the recovery process in personality disorder as described by individuals accessing care in either community or forensic settings. Methods Individual qualitative interviews were utilised to explore the lived experience of those receiving a personality disorder diagnosis and accessing mental health care in either community or forensic settings. A thematic analysis was conducted to identify shared concepts and understanding between participants. Results Fourty-one individual participant interviews were conducted across forensic and community settings. Recovery was presented by participants as a developing negotiated understanding of the self, together with looked for change and hope in the future. Four specific themes emerged in relation to this process: 1. Understanding early lived experience as informing sense of self 2. Developing emotional control 3. Diagnosis as linking understanding and hope for change 4. The role of mental health services. Conclusions Through considering personal recovery in personality disorder as a negotiated understanding between the individual, their social networks and professionals this study illustrates the complexity of working through such a process. Clarity of understanding in this area is essential to avoid developing resistance in the recovery process. Understanding of recovery in a variety of diagnostic categories and social settings is essential if a truly recovery orientated mental health service is to be developed.

Abstract Background To explore the current models of practice in centres delivering specialist care for children with disorders of sex development (DSD), an international survey of 124 clinicians, identified through DSDnet and the I-DSD Registry, was performed in the last quarter of 2014. Results A total of 78 (63 %) clinicians, in 75 centres, from 38 countries responded to the survey. A formal national network for managing DSD was reported to exist in 12 (32 %) countries. The paediatric specialists routinely involved in the initial evaluation of a newborn included: endocrinologist (99 %), surgeon/urologist (95 %), radiologist (93 %), neonatologist (91 %), clinical geneticist (81 %) and clinical psychologist (69 %). A team consisting of paediatric specialists in endocrinology, surgery/urology, clinical psychology, and nursing was only possible in 31 (41 %) centres. Of the 75 centres, 26 (35 %) kept only a local DSD registry and 40 (53 %) shared their data in a multicentre DSD registry. Attendance in local, national and international DSD-related educational programs was reported by 69, 78 and 84 % clinicians, respectively. Participation in audits/quality improvement exercises in DSD care was reported by 14 (19 %) centres. In addition to complex biochemistry and molecular genetic investigations, 40 clinicians (51 %) also had access to next generation sequencing. A genetic test was reported to be more preferable than biochemical tests for diagnosing 5-alpha reductase deficiency and 17-beta hydroxysteroid dehydrogenase 3 deficiency by 50 and 55 % clinicians, respectively. Conclusion DSD centres report a high level of interaction at an international level, have access to specialist staff and are increasingly relying on molecular genetics for routine diagnostics. The quality of care provided by these centres locally requires further exploration.

Background: Service users and carers using mental health services want more involvement in their care and the aim of this research programme was to enhance service user and carer involvement in care planning in mental health services. Objectives: Co-develop and co-deliver a training intervention for health professionals in community mental health teams, which aimed to enhance service user and carer involvement in care planning. Develop a patient-reported outcome measure of service user involvement in care planning, design an audit tool and assess individual preferences for key aspects of care planning involvement. Evaluate the clinical effectiveness and the cost-effectiveness of the training. Understand the barriers to and facilitators of implementing service user- and carer-involved care planning. Disseminate resources to stakeholders. Methods: A systematic review, focus groups and interviews with service users/carers/health professionals informed the training and determined the priorities underpinning involvement in care planning. Data from focus groups and interviews were combined and analysed using framework analysis. The results of the systematic review, focus groups/interviews and a review of the training interventions were synthesised to develop the final training intervention. To develop and validate the patient-reported outcome measure, items were generated from focus groups and interviews, and a psychometric analysis was conducted. Patient-reported outcome measure items and a three-round consensus exercise were used to develop an audit tool, and a stated preference survey was undertaken to assess individual preferences for key aspects of care planning. The clinical effectiveness and cost-effectiveness of the training were evaluated using a pragmatic cluster trial with cohort and cross-sectional samples. A nested longitudinal qualitative process evaluation using multiple methods, including semistructured interviews with key informants involved locally and nationally in mental health policy, practice and research, was undertaken. A mapping exercise was used to determine current practice, and semistructured interviews were undertaken with service users and mental health professionals from both the usual-care and the intervention arms of the trial at three time points (i.e. baseline and 6 months and 12 months post intervention). Results: The results from focus groups (n = 56) and interviews (n = 74) highlighted a need to deliver training to increase the quality of care planning and a training intervention was developed. We recruited 402 participants to develop the final 14-item patient-reported outcome measure and a six-item audit tool. We recruited 232 participants for the stated preference survey and found that preferences were strongest for the attribute ‘my preferences for care are included in the care plan’. The training was delivered to 304 care co-ordinators working in community mental health teams across 10 NHS trusts. The cluster trial and cross-sectional survey recruited 1286 service users and 90 carers, and the primary outcome was the Health Care Climate Questionnaire. Training was positively evaluated. The results showed no statistically significant difference on the primary outcome (the Health Care Climate Questionnaire) (adjusted mean difference –0.064, 95% confidence interval –0.343 to 0.215; p = 0.654) or secondary outcomes at the 6-month follow-up. Overall, the training intervention was associated with a net saving of –£54.00 (95% confidence interval –£193.00 to £84.00), with a net quality-adjusted life-year loss of –0.014 (95% confidence interval –0.034 to 0.005). The longitudinal process evaluation recruited 54 service users, professionals and carers, finding a failure of training to become embedded in routine care. Limitations: Our pragmatic study was designed to improve service user and care involvement in care planning among routine community mental health services. We intervened in 18 sites with > 300 care co-ordinators. However, our volunteer sites may not be fully representative of the wider population, and we lacked data with which to compare our participants with the eligible population. Conclusions: We co-developed and co-delivered a training intervention and developed a unidimensional measure of service user and carer involvement in care planning and an audit tool. Despite a high level of satisfaction with the training, no significant effect was found; therefore, the intervention was ineffective. There was a failure of training to become embedded and normalised because of a lack of organisational readiness to accept change. Working with NHS trusts in our ‘Willing Adopters’ programme with enhanced organisational buy-in yielded some promising results. Future work: Research should focus on developing and evaluating new organisational initiatives in addition to training health-care professionals to address contextual barriers to service and carer involvement in care planning, and explore co-designing and delivering new ways of enhancing service users’ and carers’ capabilities to engage in care planning. Trial registration: Current Controlled Trials ISRCTN16488358. Funding: This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 7, No. 9. See the NIHR Journals Library website for further project information.

The COVID-19 pandemic brought about changes to the lives of families with young children. It has been associated with physical and psychological risk, yet the impact on younger children is poorly examined. The aim of this qualitative study was to examine how the COVID-19 pandemic impacted the day-to-day life of parents of young children living in a small northern city in British Columbia, Canada. Ten mothers with children aged 0-5 years participated in a six-week longitudinal study between November 2020 and March 2021. This article presents data from entry and exit interviews that were analysed using Todorov's narrative theory. Three key themes were identified: (1) gaps in health services; (2) gaps in early childhood education and programs; and (3) changes to/lost social interactions. Limited opportunities to engage with providers caused frustration and left parents feeling disempowered or dissatisfied. Family support and well-being were negatively impacted by a loss in social connectivity. Despite unpredictability and worries about child development, most of the mothers found ways to cherish the time to 'stop and refocus'. Overall, the families evidenced resilience, despite a loss in relational habits.

Background: The Salford Integrated Care Programme (SICP) was a large-scale transformation project to improve care for older people with long-term conditions and social care needs. We report an evaluation of the ability of the SICP to deliver an enhanced experience of care, improved quality of life, reduced costs of care and improved cost-effectiveness. Objectives: To explore the process of implementation of the SICP and the impact on patient outcomes and costs. Design: Qualitative methods (interviews and observations) to explore implementation, a cohort multiple randomised controlled trial to assess patient outcomes through quasi-experiments and a formal trial, and an analysis of routine data sets and appropriate comparators using non-randomised methodologies. Setting: Salford in the north-west of England. Participants: Older people aged ≥ 65 years, carers, and health and social care professionals. Interventions: A large-scale integrated care project with three core mechanisms of integration (community assets, multidisciplinary groups and an ‘integrated contact centre’). Main outcome measures: Patient self-management, care experience and quality of life, and health-care utilisation and costs. Data sources: Professional and patient interviews, patient self-report measures, and routine quantitative data on service utilisation. Results: The SICP and subsequent developments have been sustained by strong partnerships between organisations. The SICP achieved ‘functional integration’ through the pooling of health and social care budgets, the development of the Alliance Agreement between four organisations and the development of the shared care record. ‘Service-level’ integration was slow and engagement with general practice was a challenge. We saw only minor changes in patient experience measures over the period of the evaluation (both improvements and reductions), with some increase in the use of community assets and care plans. Compared with other sites, the difference in the rates of admissions showed an increase in emergency admissions. Patient experience of health coaching was largely positive, although the effects of health coaching on activation and depression were not statistically significant. Economic analyses suggested that coaching was likely to be cost-effective, generating improvements in quality of life [mean incremental quality-adjusted life-year gain of 0.019, 95% confidence interval (CI) –0.006 to 0.043] at increased cost (mean incremental total cost increase of £150.58, 95% CI –£470.611 to £711.776). Limitations: The Comprehensive Longitudinal Assessment of Salford Integrated Care study represents a single site evaluation, with consequent limits on external validity. Patient response rates to the cohort survey were

Background: Oral surgery referrals from dentists are rising and putting increased pressure on finite hospital resources. It has been suggested that primary care specialist services can provide care for selected patients at reduced costs and similar levels of quality and patient satisfaction. Research questions: Can an electronic referral system with consultant- or peer-led triage effectively divert patients requiring oral surgery into primary care specialist settings safely, and at a reduced cost, without destabilising existing services? Design: A mixed-methods, interrupted time study (ITS) with adjunct diagnostic test accuracy assessment and health economic evaluation. Setting: The ITS was conducted in a geographically defined health economy with appropriate hospital services and no pre-existing referral management or primary care oral surgery service. Hospital services included a district general, a foundation trust and a dental hospital. Participants: Patients, carers, general and specialist dentists, consultants (both surgical and Dental Public Health), hospital managers, commissioners and dental educators contributed to the qualitative component of the work. Referrals from primary care dental practices for oral surgery procedures over a 3-year period were utilised for the quantitative and health economic evaluation. Interventions: A consultant- then practitioner-led triage system for oral surgery referrals embedded within an electronic referral system for oral surgery with an adjunct primary care service. Main outcome measures: Diagnostic test accuracy metrics for sensitivity and specificity were calculated. Total referrals, numbers of referrals sent to primary care and the cost per referral are reported for the main intervention. Qualitative findings in relation to patient experience and whole-system impact are described. Results: In the diagnostic test accuracy study, remote triage was found to be highly specific (mean 88.4, confidence intervals 82.6 and 92.8) but with lower values for sensitivity. The implementation of the referral system and primary care service was uneventful. During consultant triage in the active phases of the study, 45% of referrals were diverted to primary care, and when general practitioner triage was used this dropped to 43%. Only 4% of referrals were sent from specialist primary care to hospital, suggesting highly efficient triage of referrals. A significant per-referral saving of £108.23 [standard error (SE) £11.59] was seen with consultant triage, and £84.13 (SE £11.56) with practitioner triage. Cost savings varied according the differing methods of applying the national tariff. Patients reported similar levels of satisfaction for both settings, and speed of treatment was their over-riding concern. Conclusions: Implementation of electronic referral management in primary care can lead, when combined with triage, to diversions of appropriate cases to primary care. Cost savings can be realised but are dependent on tariff application by hospitals, with a risk of overestimating where hospitals are using day case tariffs extensively. Study limitations: The geographical footprint of the study was relatively small and, hence, the impact on services was minimal and could not be fully assessed across all three hospitals. Future work: The findings suggest that the intervention should be tested in other localities and disciplines, especially those, such as dermatology, that present the opportunity to use imaging to triage. Funding: The National Institute for Health Research Health Services and Delivery Research programme.

BACKGROUND:Severe mental illness is a major driver of worldwide disease burden. Shared decision-making is critical for high quality care, and can enhance patient satisfaction and outcomes. However, it has not been translated into routine practice. This reflects a lack of evidence on the best way to implement shared decision-making, and the challenges of implementation in routine settings with limited resources. Our aim was to test whether we could deliver a practical and feasible intervention in routine community mental health services to embed shared decision-making for patients with severe mental illness, by improving patient and carer involvement in care planning. METHODS:We cluster randomised community mental health teams to the training intervention or usual care, to avoid contamination. Training was co-delivered to a total of 350 staff in 18 teams by clinical academics, working alongside patients and carers. The primary outcome was the Health Care Climate Questionnaire, a self-report measure of 'autonomy support'. Primary and secondary outcomes were collected by self-report, six months after allocation. FINDINGS:In total, 604 patients and 90 carers were recruited to main trial cohort. Retention at six months was 82% (n = 497). In the main analysis, results showed no statistically significant difference in the primary outcome between the intervention and usual care at 6 months (adjusted mean difference -0.064, 95% CI -0.343 to 0.215, p = 0.654). We found significant effects on only 1 secondary outcome. CONCLUSIONS:An intervention to embed shared decision-making in routine practice by improving involvement in care planning was well attended and acceptable to staff, but had no significant effects on patient outcomes. Enhancing shared decision-making may require considerably greater investment of resources and effects may only be apparent over the longer term.

Type 2 diabetes is impacting millions of people globally; however, many future cases can be prevented through lifestyle changes and interventions. Primary care is an important setting for diabetes prevention, for at-risk populations, because it is a patient's primary point of contact with the health care system and professionals can provide lifestyle counselling and support, as well as monitoring health outcomes. These are all essential elements for diabetes prevention for at-risk adults.To understand the factors related to the delivery and uptake of type 2 diabetes prevention interventions within primary care in higher income countries.For this narrative systematic review, we combined qualitative and quantitative studies of diabetes prevention within a primary care setting for patients at-risk of developing the condition. We used an iterative approach for evidence collection, which included using several databases (MEDLINE, Embase, Pysch info, BNI, SSCI, CINAHL, ASSIA), where we combined diabetes terms with primary care terms. Narrative and thematic synthesis were utilised to identify the prominent themes emerging from the data.A database of 6646 records was screened by the research team, and 18 papers were included. Three major themes were identified in this review. The first theme of context and setting of diabetes progression includes the risk and progression of diabetes, primary care as a setting, and where the responsibility for change is thought to lie. This review also found mixed views on the value of preventative services within primary care. The second theme focused on the various patient factors associated with diabetes prevention such as a patient's motivation to modify their current lifestyle, perceptions and knowledge (or lack thereof) of the impacts of diabetes, lack of follow-up in healthcare settings, and trust in healthcare professionals. The third theme was centred on professional factors impacting on diabetes prevention which included workload, time constraints, resources, self-efficacy and knowledge as well as professionals' perception of patient motivations towards change.This review explored the factors influencing diabetes prevention in primary care, and identified the context of prevention, as well as patient and professional factors related to preventative services being offered in primary care. This systematic review complements previous reviews of real-world settings by exploring the significant factors in prevention, and the findings are relevant to academics, policymakers, patients and practitioners interested in understanding the factors associated with the delivery and uptake of diabetes prevention interventions.

ObjectiveStudies of patient safety in health care have traditionally focused on hospital medicine. However, recent years have seen more research located in primary care settings which have different features compared to secondary care. This study set out to synthesize published qualitative research concerning patient safety in primary care in order to build a conceptual model.MethodMeta-ethnography, an interpretive synthesis method whereby third order interpretations are produced that best describe the groups of findings contained in the reports of primary studies.ResultsForty-eight studies were included as 5 discrete subsets where the findings were translated into one another: patients' perspectives of safety, staff perspectives of safety, medication safety, systems or organisational issues and the primary/secondary care interface. The studies were focused predominantly on issues seen to either improve or compromise patient safety. These issues related to the characteristics or behaviour of patients, staff or clinical systems and interactions between staff, patients and staff, or people and systems. Electronic health records, protocols and guidelines could be seen to both degrade and improve patient safety in different circumstances. A conceptual reading of the studies pointed to patient safety as a subjective feeling or judgement grounded in moral views and with potentially hidden psychological consequences affecting care processes and relationships. The main threats to safety appeared to derive from 'grand' systems issues, for example involving service accessibility, resources or working hours which may not be amenable to effective intervention by individual practices or health workers, especially in the context of a public health system.ConclusionOverall, the findings underline the human elements in patient safety primary health care. The key to patient safety lies in effective face-to-face communication between patients and health care staff or between the different staff involved in the care of an individual patient. Electronic systems can compromise safety when they override the opportunities for face-to-face communication. The circumstances under which guidelines or protocols are seen to either compromise or improve patient safety needs further investigation.

OBJECTIVE:As the global burden of chronic disease rises, policy makers are showing a strong interest in adopting telehealth technologies for use in long term condition management, including COPD. However, there remain barriers to its implementation and sustained use. To date, there has been limited qualitative investigation into how users (both patients/carers and staff) perceive and experience the technology. We aimed to systematically review and synthesise the findings from qualitative studies that investigated user perspectives and experiences of telehealth in COPD management, in order to identify factors which may impact on uptake. METHOD:Systematic review and meta-synthesis of published qualitative studies of user (patients, their carers and clinicians) experience of telehealth technologies for the management of Chronic Obstructive Pulmonary Disease. ASSIA, CINAHL, Embase, Medline, PsychInfo and Web of Knowledge databases were searched up to October 2014. Reference lists of included studies and reference lists of key papers were also searched. Quality appraisal was guided by an adapted version of the CASP qualitative appraisal tool. FINDINGS:705 references (after duplicates removed) were identified and 10 papers, relating to 7 studies were included in the review. Most authors of included studies had identified both positive and negative experiences of telehealth use in the management of COPD. Through a line of argument synthesis we were able to derive new insights from the data to identify three overarching themes that have the ability to either impede or promote positive user experience of telehealth in COPD: the influence on moral dilemmas of help seeking-(enables dependency or self-care); transforming interactions (increases risk or reassurance) and reconfiguration of 'work' practices (causes burden or empowerment). CONCLUSION:Findings from this meta-synthesis have implications for the future design and implementation of telehealth services. Future research needs to include potential users at an earlier stage of telehealth/service development.

Quantitative studies have drawn attention to the patterning of health inequalities in relation to subjective social status (SSS). There is currently little insight into the complexities of the social and biographical aspects that lie behind these findings. Narrative accounts were gathered in a mixed-methods study involving a population of people with coronary heart disease (CHD) and/or diabetes in a region of the United Kingdom with above average levels of socio-economic deprivation. The aim of this secondary qualitative analysis was to examine the accounts of interviewees with low socio-economic status (SES) who ranked themselves either low or high in terms of SSS. The results highlight the multiplicity of adverse circumstances leading to subjective assessments of low SSS. Loss of employment status contributed more to a feeling of being “at the bottom of the ladder” than the symptoms of chronic illness did, perhaps because having somewhere to go is central to the accrual of social, economic, and cultural capital. The narratives of those who ranked themselves highly (in spite of low SES) appeared to have more family and community connections. The findings contribute to theories of socio-economic biographies or trajectories, subjective social status, and engagement with the self-management aspects of chronic illness.

ObjectiveComputerised therapies play an integral role in efforts to improve access to psychological treatment for patients with depression and anxiety. However, despite recognised problems with uptake, there has been a lack of investigation into the barriers and facilitators of engagement. We aimed to systematically review and synthesise findings from qualitative studies of computerised therapies, in order to identify factors impacting on engagement.MethodSystematic review and meta-synthesis of qualitative studies of user experiences of computer delivered therapy for depression and/or anxiety.Results8 studies were included in the review. All except one were of desktop based cognitive behavioural treatments. Black and minority ethnic and older participants were underrepresented, and only one study addressed users with a co-morbid physical health problem. Through synthesis, we identified two key overarching concepts, regarding the need for treatments to be sensitive to the individual, and the dialectal nature of user experience, with different degrees of support and anonymity experienced as both positive and negative. We propose that these factors can be conceptually understood as the 'non-specific' or 'common' factors of computerised therapy, analogous to but distinct from the common factors of traditional face-to-face therapies.ConclusionExperience of computerised therapy could be improved through personalisation and sensitisation of content to individual users, recognising the need for users to experience a sense of 'self' in the treatment which is currently absent. Exploiting the common factors of computerised therapy, through enhancing perceived connection and collaboration, could offer a way of reconciling tensions due to the dialectal nature of user experience. Future research should explore whether the findings are generalisable to other patient groups, to other delivery formats (such as mobile technology) and other treatment modalities beyond cognitive behaviour therapy. The proposed model could aid the development of enhancements to current packages to improve uptake and support engagement.

Objectives: An exploratory investigation of diagnosis and management in progressive ataxias: rare neurological conditions usually affecting balance, mobility and speech. Methods: A longitudinal qualitative study into the experiences of people with ataxia and neurologists. Thematic analysis and follow-up interviews were used to determine diagnosis and management issues over time. Results: People with ataxia recruited via two hospital departments and Ataxia UK were interviewed at baseline (n = 38) and 12-month follow-up (n = 31). Eight consultant neurologists were interviewed once. Patient accounts were diverse, but many expressed frustration at having an incurable condition and dissatisfaction with service outcomes. At follow-up, there was variation in their contact and satisfaction with helping agencies. Service issues regarding continuity of care and the primary/secondary care interface were evident. Neurologists’ accounts also varied. One-half reported that there is nothing that can be done, and one-half favoured specialist referral to increase the likelihood of finding an underlying aetiology within budget constraints. Conclusions: Diagnostic uncertainties existing at baseline remained for patients at follow-up interviews, although some had learned to deal with the uncertainties brought by the diagnosis of a largely untreatable condition. Care pathways only seemed to operate in the case of defined conditions, such as Friedreich’s Ataxia, the most commonly inherited cause. The findings point to a need to develop the evidence base to inform the relative utility of diagnostic procedures in the context of finite resources for patient care and support.

Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances. This is relevant for understanding the division of labour and the meeting of needs for those living with a long-term condition. We therefore took a network approach to explore self-management support conceptualising it as types of illness 'work' undertaken within peoples' social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management. Whilst partners and close family make the highest contributions there is evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples' networks. In networks with 'no partner' other people tend to contribute more in the way of illness related work than in networks with a partner. This indicates a degree of substitutability between differently constituted networks, and that the level and type of input by different members of a network might change according to circumstances. A network perspective offers an opportunity to redress the balance of an exclusively individual focus on self-management because it addresses the broader set of contributions and resources available to people in need of chronic illness management and support.

Background To encourage participation in trials, people need to have a positive experience. However, researchers do not routinely measure participant experience. Our aim is to facilitate routine measurement by developing a measure that captures the participant perspective, in a way that is meaningful, acceptable and useful to trial teams and participants. Methods We conducted a focus group and 25 interviews with trial professionals and trial participants to explore how participant experiences of trials should be measured, and to identify domains and items to include in the measure. Interviewees were also asked to comment on a list of candidate domains and items informed by a previous review of the literature on participant experience measures. Interviews were analysed thematically. Candidate domains and items were incorporated into a draft measure. Cognitive testing was undertaken in two rounds to ensure the items were comprehensible and grounded in participant experience. Results Interviewees and patient and public contributors reported that standardising the measurement of participant experience of trials had the potential to improve trial experience but described issues around the timing of measurement. Cognitive testing highlighted issues with comprehension, recall and response and numerous items were removed or refined. We developed a standard and a short version of the measure for feasibility testing. Conclusions We developed a measure covering important domains of participant experience of trials, which could assist trial teams and participants to improve trial design and enhance delivery of a meaningful participant experience.