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Background: In Canada, the British Columbia College of Nurses and Midwives requires baccalaureate registered nurse education programs to deliver a generalist curriculum meeting entry-level competencies. To fulfill this requirement, nursing programs ensure the provision of practice opportunities for hands-on experience with patients of all ages through practicum. Current literature suggests the limited availability of clinical placement opportunities in pediatric settings. This may reduce the opportunity for nursing students to become acquainted with the unique needs of infants, children, and adolescents as part of their nursing education., Aim: This study aimed to explore students' and new graduates' experiences of acute and community pediatric clinical practicum as part of their British Columbia nursing education program., Settings, Participants, and Methods: This study utilized a qualitative descriptive approach. Fifteen online semi-structured interviews were conducted with thirteen undergraduate nursing students and two recent graduates. Participants in this study were distributed across the province of British Columbia, representing the North, the Interior, and the Lower Mainland. Data were analyzed using thematic analysis., Results: The key themes of relational practice and exposure to lived experiences (and their related subthemes) are explored in detail. Both themes encapsulate the importance that nursing students ascribe to the pediatric practicum experience as part of their nursing education., Conclusion: The result of this study deduced that the pediatric practicum experience provided nursing students with learning opportunities they may not get elsewhere such as: building relationships with children, adolescents, and their families within the context of care and developing awareness of the lived experiences of health and illness with each patient encounters. This unique perspective of nursing students may prove valuable for the planning and delivery of clinical learning in nursing education programs., Competing Interests: Declaration of competing interest None., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

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., (© 2024. The Author(s).)

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., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

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. [ABSTRACT FROM AUTHOR]

Introduction: Long-term conditions are a major burden on health systems. One way to facilitate more research and better clinical care among patients with long-term conditions is to collect accurate data on their daily symptoms (patient-generated health data) using wearable technologies. Whilst evidence is growing for the use of wearable technologies in single conditions, there is less evidence of the utility of frequent symptom tracking in those who have more than one condition. Aims: To explore patient views of the acceptability of collecting daily patient-generated health data for three months using a smartwatch app. Methods: Watch Your Steps was a longitudinal study which recruited 53 patients to track over 20 symptoms per day for a 90-day period using a study app on smartwatches. Semi-structured interviews were conducted with a sub-sample of 20 participants to explore their experience of engaging with the app. Results: In a population of older people with multimorbidity, patients were willing and able to engage with a patient-generated health data app on a smartwatch. It was suggested that to maintain engagement over a longer period, more 'real-time' feedback from the app should be available. Participants did not seem to consider the management of more than one condition to be a factor in either engagement or use of the app, but the presence of severe or chronic pain was at times a barrier. Conclusion: This study has provided preliminary evidence that multimorbidity was not a major barrier to engagement with patient-generated health data via a smartwatch symptom tracking app. [ABSTRACT FROM AUTHOR]

Background: Health inequalities in the UK are widening, particularly since the COVID-19 pandemic. Community pharmacies are the most visited healthcare provider in England and are ideally placed to provide and facilitate access to care for those most disadvantaged. Aim: To explore the experiences and needs of community pharmacy teams in providing care for marginalised groups and how this has changed since the COVID-19 pandemic. Design and setting: A qualitative study in community pharmacy and across primary care. Method: Semi-structured interviews were undertaken with members of community pharmacy teams, primary care network (PCN) pharmacists, GPs, and nurses in the North of England. Results: In total, 31 individuals participated in an interview (26 pharmacy staff, three GPs, and two nurses). Most participants acknowledged that their pharmacy had become busier since COVID-19 because of increased footfall compounded by patient difficulties in navigating remote digital systems. Few participants had received any formal training on working with marginalised communities; however, organisational barriers (such as lack of access to translation facilities) combined with interorganisational barriers (such as lack of integrated care) made it more difficult to provide care for some marginalised groups. Despite this, the continuity of care provided by many pharmacies was viewed as an important factor in enabling marginalised groups to access and receive care. Conclusion: There are opportunities to better utilise the skills of community pharmacy teams. Resources, such as access to translation services, and interventions to enable better communication between community pharmacy teams and other primary care services, such as general practice, are essential. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic has caused unprecedented disruption and change to the organisation of primary care, including for people experiencing homelessness who may not have access to a phone. Little is known about whether the recent changes required to deliver services to people experiencing homelessness will help to address or compound inequality in accessing care. Aim: To explore the experience and impact of organisational and technology changes in response to COVID-19 on access to health care for people experiencing homelessness. Design and setting: An action-led and participatory research methodology was employed in three case study sites made up of primary care services delivering care for people experiencing homelessness. Method: Individual semi-structured interviews were conducted with 21 people experiencing homelessness and 22 clinicians and support workers. Interviews were analysed using a framework approach. Results: The move to remote telephone consultations highlighted the difficulties experienced by participants in accessing health care. These barriers included problems at the practice level associated with remote triage as participants did not always have access to a phone or the means to pay for a phone call. This fostered increased reliance on support workers and clinicians working in the community to provide or facilitate a primary care appointment. Conclusion: The findings have emphasised the importance of addressing practical and technology barriers as well as supporting communication and choice for mode of consultation. The authors argue that consultations should not be remote 'by default' and instead take into consideration both the clinical and social factors underpinning health. [ABSTRACT FROM AUTHOR]

Health service settings are increasingly installing digital devices to enable people to engage digitally with multiple processes, including automated 'check-in', as well as collecting feedback on experiences of care. In addition, policy is increasingly driving digital agendas to promote patient engagement with online services, management of health records and routine monitoring. While this tendency towards widespread digital diffusion has been viewed as a means of enabling greater empowerment of patients and improved responsiveness of services to 'patient voice', social scientists have provided critical insights on the use of digital technologies in practice. However, there remains limited understanding of the mechanisms and contexts for digital engagement. In particular, there is a need for further research on the sensory and spatial aspects of engagement that are integral to everyday use (or non-use) of technology in practice. This article reports new insights from detailed qualitative case studies utilising in-depth interviews with patients, carers and staff, in addition to ethnographic observations of different digital modalities and their usage in specific health care contexts. A sociomaterial approach and concepts of affective atmosphere and technogeography are drawn upon to analyse the role of touch and place in the collection of digital feedback in multiple waiting room settings for people with physical and mental health long-term conditions. The findings highlight how barriers to engagement varied by context such as particular concerns about privacy for those with mental health problems and physical and sensory barriers for those with physical impairments. The findings demonstrate how digital inequalities can play out in practice and have implications for the design and development of digital innovations and tackling inequalities that may be associated with implementation of new digital technologies in healthcare. [ABSTRACT FROM AUTHOR]

Abstract Background Telehealth (TH) and telecare (TC) interventions are increasingly valued for supporting self-care in ageing populations; however, evaluation studies often report high rates of non-participation that are not well understood. This paper reports from a qualitative study nested within a large randomised controlled trial in the UK: the Whole System Demonstrator (WSD) project. It explores barriers to participation and adoption of TH and TC from the perspective of people who declined to participate or withdrew from the trial. Methods Qualitative semi-structured interviews were conducted with 22 people who declined to participate in the trial following explanations of the intervention (n = 19), or who withdrew from the intervention arm (n = 3). Participants were recruited from the four trial groups (with diabetes, chronic obstructive pulmonary disease, heart failure, or social care needs); and all came from the three trial areas (Cornwall, Kent, east London). Observations of home visits where the trial and interventions were first explained were also conducted by shadowing 8 members of health and social care staff visiting 23 people at home. Field notes were made of observational visits and explored alongside interview transcripts to elicit key themes. Results Barriers to adoption of TH and TC associated with non-participation and withdrawal from the trial were identified within the following themes: requirements for technical competence and operation of equipment; threats to identity, independence and self-care; expectations and experiences of disruption to services. Respondents held concerns that special skills were needed to operate equipment but these were often based on misunderstandings. Respondents’ views were often explained in terms of potential threats to identity associated with positive ageing and self-reliance, and views that interventions could undermine self-care and coping. Finally, participants were reluctant to risk potentially disruptive changes to existing services that were often highly valued. Conclusions These findings regarding perceptions of potential disruption of interventions to identity and services go beyond more common expectations that concerns about privacy and dislike of technology deter uptake. These insights have implications for health and social care staff indicating that more detailed information and time for discussion could be valuable especially on introduction. It seems especially important for potential recipients to have the opportunity to discuss their expectations and such views might usefully feed back into design and implementation.

Objectives To establish the acceptability and feasibility of collecting daily patient-generated health data (PGHD) using smartphones and integrating PGHD into the electronic health record, using the example of RA. Methods The Remote Monitoring of RA smartphone app was co-designed with patients, clinicians and researchers using qualitative semi-structured interviews and focus groups, including selection of question sets for symptoms and disease impact. PGHD were integrated into the electronic health record of one hospital and available in graphical form during consultations. Acceptability and feasibility were assessed with 20 RA patients and two clinicians over 3 months. A qualitative evaluation included semi-structured interviews with patients and clinicians before and after using the app, and audio-recordings of consultations to explore impact on the consultation. PGHD completeness was summarized descriptively, and qualitative data were analysed thematically. Results Patients submitted data on a median of 91% days over 3 months. Qualitative analysis generated three themes: RA as an invisible disease; providing the bigger picture of RA; and enabling person-centred consultations. The themes demonstrated that the system helped render patients' RA more visible by providing the 'bigger picture', identifying real-time changes in disease activity and capturing symptoms that would otherwise have been missed. Graphical summaries during consultations enabled a more person-centred approach whereby patients felt better able to participate in consultations and treatment plans. Conclusion Remote Monitoring of RA has uniquely integrated daily PGHD from smartphones into the electronic health record. It has delivered proof-of-concept that such integrated remote monitoring systems are feasible and can transform consultations for clinician and patient benefit. [ABSTRACT FROM AUTHOR]

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. [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]

Objectives Recent literature has demonstrated the nature and importance of social networks. This study aimed to understand how support needs of people with long-term conditions change over time and how this influences their ability to self-manage. Methods A longitudinal qualitative design was used to explore changes in individual’s social networks over a period of year. Thirty participants were recruited and completed initial in-depth face-to-face interviews, telephone follow-ups, and final face-to-face interviews. Results Findings illuminated that changes in health and changes in social networks can influence each other. The social networks implicated in the management of long-term conditions change over time at critical moments and can range between positive and negative reciprocal influences with self-management. Network changes, such as the breaking or reconnecting of ties influenced the context of health management and the degree of engagement with self-management activities. Discussion By examining the specific processes of support and resource provision, this study highlights how overtime the variety of relationships and support available implicated in long-term condition management changes. This has implications for the provision of formal support services and the need for a wider range of support to be identified that recognises change in support requirements as self-management strategies evolve. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 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 number of children with complex health care needs continues to rise and they often have prolonged hospital stays with their discharge home being delayed by a range of factors. These delays occur despite the fact that, except in extraordinary circumstances, a child’s home is the most appropriate place for them to receive long-term care. The aim of this qualitative interview-based study was to explore the work of nurses whose main role is supporting children and families move from an institutional place of care to long-term care within the family home. Analysis of interview transcripts was collaborative, interpretive, and thematic. A total of 46 participants (9 nurses and 37 local stakeholders) engaged in the study. Findings reflect the ways in which the nurses facilitated transition of children with complex needs from hospital to home and the journeys the nurses took to develop the skills, knowledge, and networks needed to support this transition. “Knowing the places of care” was fundamental to the success of the nurses’ work. As the nurses’ knowledge of the places (and processes) of care deepened, they were better able to act as informed guides to families and other professionals and to improve care. The nurses’ practice was driven by the belief that the place where care occurs matters. Home was seen as a transformative and sustaining place where caring practices could become incorporated into an environment in which the family could exist and be nurtured together. [ABSTRACT FROM AUTHOR]

Purpose – Given that current policy in the UK is focused on encouraging individuals with long-term health conditions (LTCs) to work wherever possible, the purpose of this paper is to explore employer’s and manager’s perspectives of supporting those with LTCs as any successful workplace engagement will largely be influenced by their readiness to be supportive. Design/methodology/approach – In total, 40 semi-structured in-depth interviews were conducted with employers’ and managers’ from a range of organisations in the north-west of England during the period March 2011 to January 2012. Comparative analysis of the data was guided and informed by grounded theory principles. Findings – All bar one participant typified their role as one of a difficult “balancing” act of additional and often incompatible demands, pressures and feelings. It was evident that coping with this ambivalent situation incurred an emotional consequence for participants. Practical implications – Employers’ and managers’ response to ambivalent feelings may serve to undermine their capacity to translate supportive intentions into tangible action and are thus reflected in employee’s perceptions of unsupportive relations. Developing an intervention to raise awareness of the potential for this situation and subsequent impact on the return to work process would be beneficial for all stakeholders – the government, employees and employers alike. Originality/value – This in-depth study gives voice to employers and managers whose experiences and perceptions of supporting people with LTCs is largely unknown and empirically under-researched. Findings add to the wealth of research from the employee perspective to provide a more nuanced picture of the workplace for those working with and/or supporting those with LTCs. [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]

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain 'hidden carers'. We aimed to explore how carers of people with common long-term conditions ( LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term 'carer' or access for support. We conducted semi-structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement ( PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared-for person. The data were interpreted in terms of types of 'work' undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring 'work'. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self-management of LTCs in the community must be complemented by recognition of this group as potentially 'hidden carers', who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking. [ABSTRACT FROM AUTHOR]

Background and aims: Support of personal recovery represents the aim for many modern mental health services. There is a lack of conceptual clarity around the application of the term however and this is particularly problematic with regard to the personality disorder diagnoses. This study sought to review the existing qualitative methods literature in relation to the experience of personal recovery in personality disorder. Methods: A systematic literature search was conducted. Identified studies were incorporated through meta-synthesis in order to develop higher order descriptive themes representative of the individual experience described within included studies. Results: Three studies were identified and incorporated into the meta-synthesis. Three novel higher order themes were developed: Safety and containment as a prerequisite to recovery, social networks and autonomy in the recovery process and identity construction as a process of change. Conclusion: Personal recovery in personality disorder is revealed as a complex process reflecting both personal and social experiences or desires. These findings have important implications for clinical practice – emphasising the need to work closely with individuals and to develop an understanding of both their social experience and networks. Further research, taking greater account of social context in the recovery process, is necessary. [ABSTRACT FROM AUTHOR]

Background: Despite an increase in mental health innovations designed to increase service user and carer involvement in services, there is evidence that service users and carers are still relatively marginalised. This study aimed to identify key informants operating with knowledge of both policy and practice related to future models of mental health management in order to explore the potential de-implementation of existing care planning and possibilities for the introduction of a training programme designed to implement a new user and carer involved and focussed process of mental health care planning.Methods: 13 semi-structured interviews were carried out with key informants from a range of relevant disciplinary backgrounds and professional roles, who were involved locally and nationally in policy, practice and research. The aim of the interviews was to explore their perspectives on contemporary arrangements for care planning procedures and processes and to identify factors that might promote or inhibit the routine incorporation of user/carer led planning. Findings were compared to data derived from service users, carers and professionals to illuminate added value.Results: Key stakeholders identified elements of the current care planning context that were likely to impact on the implementability of user - focussed care planning. Like other stakeholders, key informants felt that the proposed intervention coalesced with the increasing normalisation of user involvement as appropriate and desirable. Participants added to existing data by illuminating the need for organisational bureaucracy and the legacy of prior mental health policy and historical practice to be considered in implementation. Adequate relationships within the system were considered by all stakeholders to be crucial to successful implementation and key informants discussed how this could be eroded through attempts at practice standardisation and current connectivity and culture within services.Conclusions: The study demonstrated the value of incorporating the perspective of stakeholders not directly involved in service delivery in implementation research designed to inform an intervention at the point of design. Their contribution centred on the identification of factors that appeared not be obvious to those working in the system or emanated from political and policy arenas as well as developing the contextual understanding of themes raised by other stakeholders. [ABSTRACT FROM AUTHOR]

Objectives: To examine the role of community groups to support people living with long-term conditions and the organisational factors that influence this role. Methods: Thirty-three semi-structured interviews were conducted with voluntary group organisers purposefully sampled in Greater Manchester from a local database of community groups. Interviews explored the organisations role in supporting people living with a long-term condition, their social networks and the origins of the groups. Results: Respondents' construed their role in supporting individual capacity for management either explicitly (e.g. providing exercise) or implicitly (e.g. emotional support). This role was influenced by a combination of group ideology, funding and social networks. Analysis highlights the role of the non-clinical setting, the social support provided within the group, as well as organisational processes that influenced their capacity to support people living with long-term conditions. Conclusion: By examining the organisation of voluntary groups, this study highlights the way in which they may support or constrain access to an extended range of support for people with longterm conditions. This paper has implications for commissioning of services by the health service from the third sector because of the differing ideological perspectives and limited operationalcapacity. [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]

Background: Patterns of service delivery and the organisation of Dental General Anaesthesia (DGA) have been found to differ across hospitals. This paper reports on qualitative research aimed to understand the impact of such variation by exploring views and experiences of families receiving care in different hospital sites, as well as dentists involved in referral and delivery of care. Method: Qualitative semi-structured interviews were conducted with 26 people comprising parents (n = 15), dentists working in primary care (n = 6) and operating dentists (n = 5) in relation to DGA. Participants were recruited from areas across the North West of England to ensure a variety referral and treatment experiences were captured. Field notes were made during visits to all settings included in the study and explored alongside interview transcripts to elicit key themes. Results: A variety of positive and negative impacts on children and parents throughout the referral process and operation day were apparent. Key themes established were clustered around three key topics: 1. Organisational and professional concerns regarding referrals, delivery of treatment and prevention. 2. The role of hospital environment and routine on the emotional experiences of children. 3. The influence of the wider social context on dental health. Conclusion: These findings suggest the need and perceived value of: tailored services for children (such as play specialists) and improved information, such as clear guidance regarding wait times and what is to be expected on the day of the procedure. These features were viewed to be helpful in alleviating the stress and anxiety often associated with DGA. While some elements will always be restricted in part to the hospital setting in which they occur, there are several aspects where best practice could be shared amongst hospitals and, where issues such as wait times have been acknowledged, alternative pathways can be explored in order to address areas which can impact negatively on children. [ABSTRACT FROM AUTHOR]

The article discusses a study conducted to analyze experiences and perceptions of prognosis and recovery for those with long-term physical conditions without having any mental illness. It is noted that the study analyzed similarities and differences in the experience of chronic physical and mental health conditions in the context of literature from the mental and physical health fields to add to existing literature in the field.

Aim and objectives. The aim of the study was to explore parents' experiences of and the influences, risks and tensions associated with their child's genital ambiguity and the place reconstructive surgeries had in their lives. Background. Research into the clinical management of disorders of sex development is a complex and growing field of study. A small number of studies have indicated that the decisions parents make with regard to their child's care during infancy are confounded by moral, social and emotional factors which can influence their choices. Design. Narrative methods. Methods. In-depth interviews elicited stories from 10 mothers and five fathers of 11 prepubertal children. Results. A key theme from the data focused on the parents' motivations to protect their child from the real or perceived threats arising from other people's attitudes and responses to their ambiguous genitalia. Several rationales for their protective behaviours were described, which encouraged the parents to actively manage their child's care. Conclusion. The dilemmas that parents face in the complex and challenging situation following the birth of a child with ambiguous genitalia require early support from insightful professionals such as nurses. This support could better prepare the parents to recognise and discuss their protective behaviours and the impact these may have on their child's future. Relevance to clinical practice. These findings draw attention to the parents' need for nurses to be knowledgeable about the impact that disorders of sex development can have on family's emotional, psychosocial well-being and decision-making. Nurses' awareness of the debate surrounding genital surgeries is important if they are to understand the motivations that underpin parents' decision-making and how to support them sensitively. Nurses are the health professionals who have the most consistent direct contact with these families throughout the child's life and, therefore, can provide support in the ongoing decision-making process. [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]

sanders c., carter b. & goodacre l. (2011) Searching for harmony: parents' narratives about their child's genital ambiguity and reconstructive genital surgeries in childhood. Journal of Advanced Nursing 67(9), 2220-2230. Abstract Aim. This paper is a report of a narrative study of parents' experiences of their child's genital ambiguity and the place reconstructive surgeries have in their lives. Background. Increasingly, the use of early reconstructive genital surgery has come under criticism. Few studies have explored parents' inclusion in the surgical decision-making process, their experiences of their child's surgeries or of parenting a child born with ambiguous genitalia. Method. Narrative interviews about parents' experiences of having and caring for a child of uncertain gender and their rationale for reconstructive surgeries were conducted with 15 parents between October 2004 and February 2006. Interviews were recorded, transcribed verbatim and analysed in a narrative analysis framework. Results. Narrative analysis resulted in three increasingly contextual and conceptual levels of stories. Connections between stories gave the basis for the synthesis of the data; interpretation identified three elements of shock, protection and anxiety, which influenced the parents. The parents identified the need for early and ongoing support from healthcare professionals. The parents expected professionals to be knowledgeable about the dilemmas surround disorders of sex development and have experience in managing care for themselves and their child. Conclusion. For the parents seeking a sense of harmony between their child's genital ambiguity and gender during childhood was important. Searching for this harmony became a dynamic and evolving process, which was built on their knowledge and increasing willingness to engage with professionals, negotiate their social worlds, emotional responses and belief systems. [ABSTRACT FROM AUTHOR]

The article focuses on the longitudinal qualitative study that investigates the influences self-management priorities for individuals with multiple long-term conditions. It mentions the effects of multiple conditions on many aspects of people's illness management. It also discusses the results of the study which finds the variable nature of multimorbidity experience and management for patients.

The article focuses on a research study that investigates the observations gathered during diagnosis process in patients suffering from progressive ataxia, which is a rare neurological condition. It mentions the challenges faced by patient and clinicians during the diagnosis of the progressive ataxia by extensive use of finite healthcare resources and also discusses the importance of diagnosis to people with progressive ataxia.

Aims and objectives. This research study explored the factors which influenced the ability of children's nurses to urethrally catheterise children in their care. Background. There is currently limited evidence to inform the clinical skills training of children's nurses and the impact of competencies and other educational documents on practice. The project aimed to use data to inform local service provision and the design and development of future training programmes in an acute paediatric hospital. Design. A mixed method study using questionnaires and focus groups. Methods. Data were obtained through two focus groups ( n = 10) and questionnaires ( n = 34, response rate 88%) with trained children's nurses to explore the influencing factors on their ability to conduct this clinical skill. Results. The children's nurses discussed that barriers to being competent and confident to catheterise included a lack of exposure to the clinical skill, increasing awareness of the role of competencies and litigation and the presence of specialist roles. Current catheterisation training was evaluated positively with most nurses stating their knowledge and clinical skills had increased; despite this only 55% ( n = 18) identified that would feel able to catheterise a child in their care. Conclusions. Comprehensive training of all children's nurses in an acute care setting may not provide a workforce, which is competent and confident in urethrally catheterising children, and resources for training may be more appropriately deployed to ensure the optimum care of children and families. Relevance to clinical practice. This study highlights the difficulties encountered for clinical nurses to remain competent in infrequently used clinical skills. This has relevance to the challenges of providing a multi-skilled workforce in children's nursing. [ABSTRACT FROM AUTHOR]

Background: Electronic health records are widely acknowledged to provide an important opportunity to anonymize patient-level health care data and collate across populations to support research. Nonetheless, in the wake of public and policy concerns about security and inappropriate use of data, conventional approaches toward data governance may no longer be sufficient to respect and protect individual privacy. One proposed solution to improve transparency and public trust is known as Dynamic Consent, which uses information technology to facilitate a more explicit and accessible opportunity to opt out. In this case, patients can tailor preferences about whom they share their data with and can change their preferences reliably at any time. Furthermore, electronic systems provide opportunities for informing patients about data recipients and the results of research to which their data have contributed.Objective: To explore patient perspectives on the use of anonymized health care data for research purposes. To evaluate patient perceptions of a Dynamic Consent model and electronic system to enable and implement ongoing communication and collaboration between patients and researchers.Methods: A total of 26 qualitative interviews and three focus groups were conducted that included a video presentation explaining the reuse of anonymized electronic patient records for research. Slides and tablet devices were used to introduce the Dynamic Consent system for discussion. A total of 35 patients with chronic rheumatic disease with varying levels of illness and social deprivation were recruited from a rheumatology outpatient clinic; 5 participants were recruited from a patient and public involvement health research network.Results: Patients were supportive of sharing their anonymized electronic patient record for research, but noted a lack of transparency and awareness around the use of data, making it difficult to secure public trust. While there were general concerns about detrimental consequences of data falling into the wrong hands, such as insurance companies, 39 out of 40 (98%) participants generally considered that the altruistic benefits of sharing health care data outweighed the risks. Views were mostly positive about the use of an electronic interface to enable greater control over consent choices, although some patients were happy to share their data without further engagement. Participants were particularly enthusiastic about the system as a means of enabling feedback regarding data recipients and associated research results, noting that this would improve trust and public engagement in research. This underlines the importance of patient and public involvement and engagement throughout the research process, including the reuse of anonymized health care data for research. More than half of patients found the touch screen interface easy to use, although a significant minority, especially those with limited access to technology, expressed some trepidation and felt they may need support to use the system.Conclusions: Patients from a range of socioeconomic backgrounds viewed a digital system for Dynamic Consent positively, in particular, feedback about data recipients and research results. Implementation of a digital Dynamic Consent system would require careful interface design and would need to be located within a robust data infrastructure; it has the potential to improve trust and engagement in electronic medical record research. [ABSTRACT FROM AUTHOR]

The internet is increasingly being used as a source of health advice and information by individuals with long term conditions (LTCs). Specifically, online forums allow people to interact with others with similar conditions. However, it is not clear how online health information is assessed by those with LTCs. This study aims to address this gap by exploring how individuals with contested and uncontested LTCs utilise internet forums. Semi-structured interviews were conducted with 20 participants with ME/CFS and 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. The findings indicate that the use of online forums was a complex and nuanced process and was influenced by a number of individual and illness-specific factors. Participants trusted those with similar experiences and perspectives as themselves, while also valuing conventional biomedical information and advice. By accessing support online, forum users were able to draw on a personalised form of support based on the lived experiences of their peers. However, the role of digital literacy in developing and maintaining online relationships must be acknowledged. [ABSTRACT FROM AUTHOR]

Context: Uremic pruritus, or itch, is common in people with chronic kidney disease (CKD) and has a negative impact on their lives and well-being. However, for reasons currently unknown, itch often remains unreported and therefore untreated.Objectives: To explore reasons for underreporting of itch to provide pointers for improving itch reporting and management in people with CKD.Methods: We interviewed adult patients with CKD who self-reported experiencing itching in the last three years (n = 25), nephrologists (n = 10), and nurses (n = 12) from three kidney services in the U.K. Topic guides were informed by previous studies and a theoretical model of self-regulation. We conducted a thematic analysis of verbatim transcripts using framework analysis.Results: We identified the following three main themes reflecting factors that may influence whether itch is reported: knowledge on causes and treatment of itch (lack of awareness of the relationship between itch and CKD, and lack of knowledge of treatment options); attitudes toward importance of itch as a health issue (patients' and clinicians' attitudes); and prompts for itch assessment during consultations (routine practice, itch as a marker, and itch severity).Conclusion: Underreporting of itch is related to patients being unaware of its causes, accepting it as something to live with, prioritizing other health issues, and the length and timing of consultations. Health care professionals' assessment and management of itch vary widely and are not necessarily evidence-based. Better patient information, development of clinical practice guidelines, and incorporation of routine symptom assessments into care may improve itch reporting and management in people with CKD. [ABSTRACT FROM AUTHOR]