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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 To investigate organisational factors influencing the implementation challenges of redesigning services for people with long term conditions in three locations in England, using remote care (telehealth and telecare). Methods Case-studies of three sites forming the UK Department of Health’s Whole Systems Demonstrator (WSD) Programme. Qualitative research techniques were used to obtain data from various sources, including semi-structured interviews, observation of meetings over the course programme and prior to its launch, and document review. Participants were managers and practitioners involved in the implementation of remote care services. Results The implementation of remote care was nested within a large pragmatic cluster randomised controlled trial (RCT), which formed a core element of the WSD programme. To produce robust benefits evidence, many aspect of the trial design could not be easily adapted to local circumstances. While remote care was successfully rolled-out, wider implementation lessons and levels of organisational learning across the sites were hindered by the requirements of the RCT. Conclusions The implementation of a complex innovation such as remote care requires it to organically evolve, be responsive and adaptable to the local health and social care system, driven by support from front-line staff and management. This need for evolution was not always aligned with the imperative to gather robust benefits evidence. This tension needs to be resolved if government ambitions for the evidence-based scaling-up of remote care are to be realised.

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.

Abstract Background Patients with long-term conditions are increasingly the focus of quality improvement activities in health services to reduce the impact of these conditions on quality of life and to reduce the burden on care utilisation. There is significant interest in the potential for self-management support to improve health and reduce utilisation in these patient populations, but little consensus concerning the optimal model that would best provide such support. We describe the implementation and evaluation of self-management support through an evidence-based 'whole systems' model involving patient support, training for primary care teams, and service re-organisation, all integrated into routine delivery within primary care. Methods The evaluation involves a large-scale, multi-site study of the implementation, effectiveness, and cost-effectiveness of this model of self-management support using a cluster randomised controlled trial in patients with three long-term conditions of diabetes, chronic obstructive pulmonary disease (COPD), and irritable bowel syndrome (IBS). The outcome measures include healthcare utilisation and quality of life. We describe the methods of the cluster randomised trial. Discussion If the 'whole systems' model proves effective and cost-effective, it will provide decision-makers with a model for the delivery of self-management support for populations with long-term conditions that can be implemented widely to maximise 'reach' across the wider patient population. Trial registration number ISRCTN: ISRCTN90940049

Abstract Background Increasing the effective targeting and promotion of self-care support for long-term conditions requires more of a focus on patient contexts and networks. The aim of this paper is to describe how within a programme of research and implementation, social networks are viewed as being centrally involved in the mobilisation and deployment of resources in the management of a chronic condition. This forms the basis of a novel approach to understanding, designing, and implementing new forms of self-management support. Methods Drawing on evidence syntheses about social networks and capital and the role of information in self-management, we build on four conceptual approaches to inform the design of our research on the implementation of self-care support for people with long-term conditions. Our approach takes into consideration the form and content of social networks, notions of chronic illness work, normalisation process theory (NPT), and the whole systems informing self-management engagement (WISE) approach to self-care support. Discussion The translation and implementation of a self-care agenda in contemporary health and social context needs to acknowledge and incorporate the resources and networks operating in patients' domestic and social environments and everyday lives. The latter compliments the focus on healthcare settings for developing and delivering self-care support by viewing communities and networks, as well as people suffering from long-term conditions, as a key means of support for managing long-term conditions. By focusing on patient work and social-network provision, our aim is to open up a second frontier in implementation research, to translate knowledge into better chronic illness management, and to shift the emphasis towards support that takes place outside formal health services.

Abstract Background Total joint replacement (TJR) of the hip or knee for osteoarthritis is among the most common elective surgical procedures. There is some inequity in provision of TJR. How decisions are made about who will have surgery may contribute to disparities in provision. The model of shared decision-making between patients and clinicians is advocated as an ideal by national bodies and guidelines. However, we do not know what happens within orthopaedic practice and whether this reflects the shared model. Our study examined how decisions are made about TJR in orthopaedic consultations. Methods The study used a qualitative research design comprising semi-structured interviews and observations. Participants were recruited from three hospital sites and provided their time free of charge. Seven clinicians involved in decision-making about TJR were approached to take part in the study, and six agreed to do so. Seventy-seven patients due to see these clinicians about TJR were approached to take part and 26 agreed to do so. The patients' outpatient appointments ('consultations') were observed and audio-recorded. Subsequent interviews with patients and clinicians examined decisions that were made at the appointments. Data were analysed using thematic analysis. Results Clinical and lifestyle factors were central components of the decision-making process. In addition, the roles that patients assigned to clinicians were key, as were communication styles. Patients saw clinicians as occupying expert roles and they deferred to clinicians' expertise. There was evidence that patients modified their behaviour within consultations to complement that of clinicians. Clinicians acknowledged the complexity of decision-making and provided descriptions of their own decision-making and communication styles. Patients and clinicians were aware of the use of clinical and lifestyle factors in decision-making and agreed in their description of clinicians' styles. Decisions were usually reached during consultations, but patients and clinicians sometimes said that treatment decisions had been made beforehand. Some patients expressed surprise about the decisions made in their consultations, but this did not necessarily imply dissatisfaction. Conclusions The way in which roles and communication are played out in decision-making for TJR may affect the opportunity for shared decisions. This may contribute to variation in the provision of TJR. Making the importance of these factors explicit and highlighting the existence of patients' 'surprise' about consultation outcomes could empower patients within the decision-making process and enhance communication in orthopaedic consultations.

Abstract Background In chronic disease management, patients are increasingly called upon to undertake a new role as lay tutors within self-management training programmes. The internet constitutes an increasingly significant healthcare setting and a key arena for self-management support and communication. This study evaluates how a new quasi-professional health workforce – volunteer tutors – engage, guide and attempt to manage people with long-term conditions in the ways of 'good' self-management within the context of an online self-management course. Methods A qualitative analysis of postings to the discussion centre of 11 online classes (purposively selected from 27) run as part of the Expert Patients Programme. Facilitators (term for tutors online) and participants posted questions, comments and solutions related to self-management of long-term conditions; these were subjected to a textual and discursive analysis to explore: a) how facilitators, through the internet, engaged participants in issues related to self-management; b) how participants responded to and interacted with facilitators. Results Emergent themes included: techniques and mechanisms used to engage people with self-management; the process facilitators followed – 'sharing', 'modelling' and 'confirming'; and the emergence of a policing role regarding online disclosure. Whilst exchanging medical advice was discouraged, facilitators often professed to understand and give advice on psychological aspects of behaviour. Conclusion The study gave an insight into the roles tutors adopt – one being their ability to 'police' subjective management of long-term conditions and another being to attempt to enhance the psychological capabilities of participants.

Child death overview panels (CDOPs) were set up in the United Kingdom following the confidential enquiry into maternal and child health. Their scope is to identify learning points and modifiable factors that focus on improving services and prevent further deaths. In the light of UK national review and subsequent legislative changes to local safeguarding arrangements, we wanted to share the lessons learnt from our local network study during this time of transition. At times of system change, organizational memory can be eroded, which results in lost opportunities to further strengthen multi-agency working in practice. Overall, our local study highlighted key learning points which could be of use in emergent safeguarding partnerships. Professionals need to continue to actively pursue and create opportunities to collect and collate comprehensive data and promote collaborative multi-agency arrangements. Panels need to be responsive to all partners involved in the safeguarding process, which includes parents. A level of reciprocity needs to be nurtured for safeguarding panel members and acute care providers to work in ways which promote learning, consider emotional support systems and explore ways to define and mobilize knowledge that can inform the safeguarding process and prevent future avoidable child deaths. [ABSTRACT FROM AUTHOR]

Cardiovascular disease (CVD) is a leading cause of mortality and morbidity worldwide, accounting for more than 17.3 million deaths each year. There is growing evidence to suggest CVD is beginning to rise in certain populations, including younger and female populations. This paper explores CVD risk in women with Congenital Adrenal Hyperplasia (CAH), a rare and lifelong condition that is characterized by a range of autosomal recessive inherited enzyme deficiencies that impact cortisol biosynthesis pathways. Women with CAH may be particularly vulnerable to poor outcomes due to the influence of existing gender disparities that impact CVD recognition and outcomes, as well as the increased cardiometabolic risks that exist as a result of CAH. Attempts to mitigate and prevent cardiometabolic risks in women living with CAH are discussed, emphasizing targeted, patient-centred and interdisciplinary supports to improve patient outcomes and health-related quality of life. Nurses are in a unique position to support the cardiovascular health of women with CAH. [ABSTRACT FROM AUTHOR]

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]