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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 FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Person‐centredness is important in delivering care for long‐term conditions. New models of care aim to co‐ordinate care through integration of health and social care which require new ways of working, often remotely from the patient. Objective: To describe how person‐centred care is enacted within multidisciplinary groups (MDGs) created as part of a new service, integrating health and social care for older people. Methods: We followed the implementation of eight neighbourhood MDGs, observing and interviewing staff from three MDGs at different phases of programme implementation using semi‐structured topic guides. Results: Thirty‐four MDG meetings were observed and 32 staff interviewed. Three core themes were identified which impacted on enactment of person‐centred care: the structural context of MDGs enabling person‐centred care; interaction of staff and knowledge sharing during the MDG meetings; and direct staff involvement of the person outside the MDG discussion. Conclusions: This study provides new insights into attempts to enact person‐centred care within a new model of service delivery. Teams did what they could to enact person‐centred care in the absence of the "real" patient within MDG meetings. They were successful in delivering and co‐ordinating some aspects of care (eg prompting medication reviews, referring to social worker, health improvement and arranging further multidisciplinary team meetings for complex cases). This "absence of patients" and time pressures within the MDGs led to reliance on the "virtual" record, enhanced by additional "soft" knowledge provided by staff, rather than ensuring the patient's voice was included. [ABSTRACT FROM AUTHOR]

Abstract: Background: It has been established that mental health‐care planning does not adequately respond to the needs of those accessing services. Understanding the reasons for this and identifying whose needs care plans serve requires an exploration of the perspectives of service users, carers and professionals within the wider organizational context. Objective: To explore the current operationalization of care planning and perceptions of its function within mental health services from the perspectives of multiple stakeholders. Settings and participants: Participants included 21 mental health professionals, 29 service users and 4 carers from seven Mental Health Trusts in England. All participants had experience of care planning processes within secondary mental health‐care services. Methods: Fifty‐four semi‐structured interviews were conducted with participants and analysed utilizing a qualitative framework approach. Findings: Care plans and care planning were characterized by a failure to meet the complexity of mental health needs, and care planning processes were seen to prioritize organizational agendas and risk prevention which distanced care planning from the everyday lives of service users. Discussion and conclusions: Care planning is recognized, embedded and well established in the practices of mental health professionals and service users. However, it is considered too superficial and mainly irrelevant to users for managing mental health in their everyday lives. Those responsible for the planning and delivery of mental health services should consider ways to increase the relevance of care planning to the everyday lives of service users including separating risk from holistic needs assessment, using support aids and utilizing a peer workforce in this regard. [ABSTRACT FROM AUTHOR]

Abstract: Background: Multimorbidity, defined as the presence of two or more long‐term conditions, is increasingly common in primary care, and patients with multimorbidity may face particular barriers to quality of care and increased safety risks due to the complexity of managing multiple conditions. Consistent with calls to directly involve service users in improving care, we aimed to use design materials to codesign new interventions to improve safety in primary care. Design: We drew on two established methods—accelerated experience‐based codesign and the future workshop approach. We synthesized design materials based on research into the patient experience of safety and multimorbidity in primary care to enable both patients, service users and carers, and primary health‐care professionals to propose interventions to improve care. Results: Both patients and professionals prioritized polypharmacy as a threat to safety. Their recommendations for supportive interventions were consistent with Burden of Treatment theory, emphasizing the limited capacity of patients with multimorbidity and the need for services to proactively offer support to reduce the burden of managing complex treatment regimes. Discussion & Conclusions: The process was feasible and acceptable to participants, who valued the opportunity to jointly propose new interventions. The iterative workshop approach enabled the research team to better explore and refine the suggestions of attendees. Final recommendations included the need for accessible reminders to support medication adherence and medication reviews for particularly vulnerable patients conducted with pharmacists within GP practices. [ABSTRACT FROM AUTHOR]

Context The use of the internet for health information by those with long-term conditions is growing. It has been argued that this represents a form of empowerment by patients, as it enables them to control the content and flow of the information available to them. To explore this, the use of online discussion groups by those with diabetes was examined. Method Semi-structured interviews were conducted with 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely discussion boards, newsletters, and research networks related to diabetes. Results By drawing on the advice, information, and support shared online, participants were empowered to position themselves as active participants in their own health care and to further engage with health-care professionals. Conclusion The findings indicate that forums can play a valuable role in aiding and motivating individuals in the daily management diabetes and highlight how this support is used to complement formal health services. However, more work needs to be carried out to determine to explore when and under what circumstances online support may be particularly beneficial to those with long-term conditions. [ABSTRACT FROM AUTHOR]

ABSTRACT Hypospadias surgery with foreskin reconstruction is an increasingly preferred option for the management of this common condition. The objective of this study was to identify the bacterial flora present before and after cleansing of the prepuce as well as 7 d after surgery. Sixty-three boys aged between 12-14 months, with primary distal hypospadias undergoing tubularized incised plate repair, were recruited between October 2013 and April 2014. Microbiological swabs were taken pre- and post-operatively to identify organisms present under their foreskin at the time of surgery and compared with organisms present 7 d post-operatively at the time of dressing removal. A parent reported wound infection tool was used to explore parents' perception and management of their son's wound 4 weeks following surgery. Bacterial colonization of the penis was common. Routine cleansing with an alcoholic chlorhexidine solution reduced bacterial flora in 82% of boys with a positive preoperative swab result. Post-operative colonization of the penis was found in 93% of patients, wound dressing colonization was common. Two parents' reported concerns regarding their son's wound healing. Topical cleansing at the time of surgery is effective in reducing the number of organisms present under the foreskin. Despite recolonization 7 d after surgery, clinical infection remains uncommon. Complication rate 12 months after surgery was very low <2%. [ABSTRACT FROM AUTHOR]

Background: Whilst there has been a focus on the importance of social support for managing long‐term conditions, there has been little specific focus on the characteristics of social networks that shape self‐management. Policy emphasis is placed on individual responsibility for self‐care, and this influences commissioning of health‐care services. Assumptions are often made by policymakers about accessibility and preference for support and the influence of the social context on chronic illness management. Objective: To examine the social networks of individuals with long‐term conditions and identify how the characteristics of their composition influences support needs. Design, setting and participants: Thirty participants completed initial face‐to‐face in‐depth interviews, telephone follow‐ups and final face‐to‐face interviews in the north‐west of England. A longitudinal qualitative design was used to elicit the subtle changes in relationships over a year. Findings: The findings suggest that the relationships which constitute a social network influence perceived support needs and attitudes to self‐management. The amalgamation of relationships was characterized into three network typologies (family focused, friend focused or health‐care professional focused) according to which types of relationships were dominant. In the absence of support, accounts highlighted a small number of substitutes who could provide support at times of critical need. Discussion: This study challenges the notion of ‘self’‐management as an individual construct as many of the practices of illness management involved the support and/or negotiation of roles with others. By examining the nuances of relationships, this study has highlighted the tacit boundaries of practical and emotional support provision. [ABSTRACT FROM AUTHOR]

The objective of this study is to review published literature on bladder augmentation in children and young adults (C&YA) with a neuropathic bladder following a neural tube defect or spinal cord injury to inform nursing practice and patient education. Medline, Embase, CINAHL, PsycINFO and the British Nursing Index were systematically searched to identify studies. The papers reviewed were case studies and medical note review in single centres regarding outcome and post‐operative complications. This limits the generalisability of the findings surrounding outcome and risk of bladder augmentation surgery in C&YA. Evidence suggests irrigation has a role in ongoing bladder management to reduce complications such as bladder calculi. However, data are sparse regarding both appropriate irrigation solutions and the frequency of irrigation necessary to minimise calculi formation. A statistically significant increase is noted in the risk of perforation following bladder augmentation when associated with bladder neck surgery at the time of primary surgery. Limited evidence exists regarding longer term systemic implications of bladder augmentation, such as malignancy or impact on bone mineral density. None of the studies demonstrated an overall improvement in health‐related quality of life (HRQoL) following bladder augmentation. Discrepancies exist between parental and children's HRQoL scores. Bladder augmentation is clinically the standard surgical treatment used to manage refractory neuropathic bladder. However, current evidence demonstrates no improvements to HRQoL following surgery and also describes various complications. Future research in this area is necessary to explore standards of care and most importantly long‐term outcome measures from the patient and professional perspective. [ABSTRACT FROM AUTHOR]

It is paramount that any child or adolescent with a suspected disorder of sex development ( DSD) is assessed by an experienced clinician with adequate knowledge about the range of conditions associated with DSD. If there is any doubt, the case should be discussed with the regional DSD team. In most cases, particularly in the case of the newborn, the paediatric endocrinologist within the regional team acts commonly as the first point of contact. This clinician should be part of a multidisciplinary team experienced in management of DSD and should ensure that the affected person and parents have access to specialist psychological support and that their information needs are comprehensively addressed. The underlying pathophysiology of DSD and the strengths and weaknesses of the tests that can be performed should be discussed with the parents and affected young person and tests undertaken in a timely fashion. Finally, in the field of rare conditions, it is imperative that the clinician shares the experience with others through national and international clinical and research collaboration. [ABSTRACT FROM AUTHOR]

Introduction: Patient safety research has tended to focus on hospital settings, although most clinical encounters occur in primary care, and to emphasize practitioner errors, rather than patients' own understandings of safety. Objective: To explore patients' understandings of safety in primary care. Methods: Qualitative interviews were conducted with patients recruited from general practices in northwest England. Participants were asked basic socio‐demographic information; thereafter, topics were largely introduced by interviewees themselves. Transcripts were coded and analysed using NVivo10 (qualitative data software), following a process of constant comparison. Results: Thirty‐eight people (14 men, 24 women) from 19 general practices in rural, small town and city locations were interviewed. Many of their concerns (about access, length of consultation, relationship continuity) have been discussed in terms of quality, but, in the interviews, were raised as matters of safety. Three broad themes were identified: (i) trust and psycho‐social aspects of professional–patient relationships; (ii) choice, continuity, access, and the temporal underpinnings of safety; and (iii) organizational and systems‐level tensions constraining safety. Discussion: Conceptualizations of safety included common reliance on a bureaucratic framework of accreditation, accountability, procedural rules and regulation, but were also individual and context‐dependent. For patients, safety is not just a property of systems, but personal and contingent and is realized in the interaction between doctor and patient. However, it is the systems approach that has dominated safety thinking, and patients' individualistic and relational conceptualizations are poorly accommodated within current service organization. [ABSTRACT FROM AUTHOR]

This study explores the ways in which patients make sense of 'safety' in the context of primary medical care. Drawing on qualitative interviews with primary care patients, we reveal patients' conceptualisation of safety as fluid, contingent, multi-dimensional, and negotiated. Participant accounts drew attention to a largely invisible and inaccessible (but taken for granted) architecture of safety, the importance of psycho-social as well as physical dimensions and the interactions between them, informal strategies for negotiating safety, and the moral dimension of safety. Participants reported being proactive in taking action to protect themselves from potential harm. The somewhat routinised and predictable nature of the primary medical care consultation, which is very different from 'one off' inpatient spells, meant that patients were not passive recipients of care. Instead they had a stock of accumulated knowledge and experience to inform their actions. In addition to highlighting the differences and similarities between hospital and primary care settings, the study suggests that a broad conceptualisation of patient safety is required, which encompasses the safety concerns of patients in primary care settings. [ABSTRACT FROM AUTHOR]

Background: Many mental health services now explicitly aim to support personal recovery. Are there special ethical and practical considerations for application of this model in forensic mental health services? Is there, for example, any conflict in this context between personal empowerment and risk management?Aim: Our aim was to develop a model of the personal recovery processes for people needing forensic mental health services.Methods: A systematic literature review was conducted and meta-synthesis applied to data from relevant papers.Results: Five studies were identified through the search process and combined through meta-synthesis. Three key overarching themes were synthesised: safety and security as a necessary base for the recovery process, the dynamics of hope and social networks in supporting the recovery process and work on identity as a changing feature in the recovery process.Conclusions: The themes identified provide for theoretically informed and testable developments in care that could enhance the quality of recovery and rehabilitation for offender patients through explicitly enhancing personal sense of safety, understanding the patient's sense of personal identity and their social networks and transitioning between institutional and community support. [ABSTRACT FROM AUTHOR]

Background Progressive ataxias are neurological disorders affecting balance, co-ordination of movement and speech. Objective A qualitative study was undertaken to discover patients' experiences of ataxia and its symptoms. Participants Thirty-eight people with ataxia recruited from patient support groups and two hospital outpatients departments. Design Cross-sectional qualitative study with thematic analysis. Results These accounts highlight the limits of medicine in the context of a rare, incurable and disabling disorder, and the embodied uncertainties brought by slowly progressive diseases that lie at the boundaries of mainstream medical knowledge. The existential crises faced by people with ataxia are seemingly magnified by sometimes idiopathic aetiologies and the limited number of inherited conditions identifiable by the available genetic tests. Interviewees were drawn into a medical system that was focused mainly on the diagnosis process, with widely varying results. However, when asked, most had rather valued the provision of disability aids and physical therapies. Only one informant reported overcoming the myriad uncertainties of progressive ataxia, and their account supported the notion of 'biographical repair' in chronic illness. Conclusions Clinical uncertainties in ataxia constrained people's attempts to deal with their condition. The construction of the proactive, informed, medical consumer who is assumed to be a partner in care is problematic in the context of a rare and difficult-to-diagnose disease for which there is usually no cure. Service providers should be mindful of the need to manage patient expectations in relation to diagnosis and cure. More focus might usefully be placed on the provision of physical therapies and disability aids. [ABSTRACT FROM AUTHOR]

ABSTRACT The attainment of urinary continence is usually achieved in early childhood, however, many children and young people can experience challenges to their urinary continence during childhood and into adolescence. Urinary incontinence has been linked to physiological comorbidities such as constipation and urinary tract infections and can also affect the social confidence and quality of life for children and young people. The aim of this study was to develop an experience and outcome measure for children and young people who experience lower urinary tract symptoms. A questionnaire-based evaluation to directly consult with young people attending a nurse-led bladder training clinic was used, pre and post treatment session, to evaluate their experiences and reported outcomes. The findings demonstrated that many of the young people reported a good response to bladder training as a resolution or reduction in their urinary symptoms; however, some young people remained reluctant to discuss their continence problems in clinic. The questionnaires highlighted the value they placed on the psychosocial support from the nurses in the clinic and how this in turn influenced their reported self-confidence and ability to manage their condition. Exploring reported experiences and outcomes can be helpful in determining what is important to young people attending a bladder training clinic. This has also highlighted the specific contribution nurses make in the assessment, intervention and management of this group. [ABSTRACT FROM AUTHOR]

Objectives To explore the views of NHS dentists in England regarding reforms, which changed their incentive and payment structure. Methods Semi-structured interviews with 35 dentists, digitally recorded, transcribed verbatim and analysed using a constant comparative method. Results Dentists reported changing their behaviour in response to incentives in ways that were likely to have adverse impacts on patients. There was also a loss of trust in NHS paymasters, as well as a loss of faith in the ability to provide high quality care in NHS dentistry. Conclusions Responses suggest that many dentists were quick to change behaviour following the introduction of a revised contractual structure in 2006. The coalition government in the UK has stated its intention to introduce a new NHS dental contract. Our data suggest that part of the process of changing behaviours, norms and attitudes will require the rebuilding of trust in the NHS amongst NHS dentists, as opposed to merely redesigning incentive structures, though the two are related. [ABSTRACT FROM AUTHOR]

It is paramount that any child or adolescent with a suspected disorder of sex development (DSD) is assessed by an experienced clinician with adequate knowledge about the range of conditions associated with DSD. If there is any doubt, the case should be discussed with the regional team. In most cases, particularly in the case of the newborn, the paediatric endocrinologist within the regional DSD team acts as the first point of contact. The underlying pathophysiology of DSD and the strengths and weaknesses of the tests that can be performed should be discussed with the parents and affected young person and tests undertaken in a timely fashion. This clinician should be part of a multidisciplinary team experienced in management of DSD and should ensure that the affected person and parents are as fully informed as possible and have access to specialist psychological support. Finally, in the field of rare conditions, it is imperative that the clinician shares the experience with others through national and international clinical and research collaboration. [ABSTRACT FROM AUTHOR]

Aim. The aim of this study was to initiate an exploration of parents’ understanding and experiences of their child’s reconstructive genital surgeries for ambiguous genitalia. Background. The determination of gender for a child born with ambiguous genitalia is a complex medical and social process influenced by biological, psychological, social and cultural factors. Two main approaches exist; one promotes interventions (optimal gender policy) while the other suggests delaying interventions (informed consent policy) until the child can contribute to the decision. Methods. An exploratory narrative inquiry design was chosen. Data were collected through narrative interviews with a purposive non-random sample of 10 parents of eight children (aged 0–11 years) who had ambiguous genitalia. Results. Parents’ stories reflected strong protective instincts towards their children along with feelings of shock and disbelief. Parents’ social construction of gender influenced their attitudes and beliefs about their child’s ambiguous genitalia and the need for surgery. Parents’ desired to be ‘good parents’ and do what they perceived as ‘right’ for their child. They considered genital surgery as a necessity primarily relying on medical advice to guide them at times of uncertainty and confusion. Parents rarely shared stories about their child’s surgeries/genitalia outside of the couple relationship and these stories were often referred to as ‘secrets’. Conclusion. Having a child with ambiguous genitalia was perceived as problematic and brought about changes in roles, responsibilities, goals and social status as a parent beyond those usually associated with parenthood. Relevance to clinical practice. These early findings help increase awareness of parents’ experiences and of the problems and emotional challenges that parents face when their child is born with genital ambiguity. [ABSTRACT FROM AUTHOR]