Modelling Successful Self-Management in Adults With Cystic Fibrosis: Vicarious Self-Efficacy From Videos of 'People Like Me'.

Background Self-efficacy is an important determinant of treatment adherence, and peer modelling of success can provide vicarious self-efficacy. A series of patient stories ('talking heads' videos) were developed with people with cystic fibrosis (CF) as part of the CFHealthHub multi-component adherence intervention, aiming to demonstrate success with daily therapy in 'people like me'. Methodology One-to-one semi-structured interviews exploring patients' experiences, barriers and facilitators of nebuliser adherence were audio and video-recorded between October 2015 and August 2016. Interview transcripts were reviewed to identify descriptions of problem-solving and sustained treatment success. Positive stories potentially providing vicarious descriptions of success were selected as video clips. Results In total, 14 adults with CF were recruited from five UK CF centres. Each participant contributed a median of five (interquartile range: 3-6) video clips, and a total of 57 unique clips were uploaded onto the CFHealthHub digital platform. Nine of those clips spanned two categories, hence, there were 66 clips across 16 categories. Conclusions The videos were well received though some adults were concerned that comparisons with peers might create anxiety by highlighting the possibility of future decline or current relative underperformance. It is important to sensitively support choice when providing resources aiming to increase vicarious self-efficacy. Our experience may guide the development of similar videos for people with other long-term conditions.

Caring for care: Online feedback in the context of public healthcare services.

People increasingly provide feedback about healthcare services online. These practices have been lauded for enhancing patient power, choice and control, encouraging greater transparency and accountability, and contributing to healthcare service improvement. Online feedback has also been critiqued for being unrepresentative, spreading inaccurate information, undermining care relations, and jeopardising professional autonomy. Through a thematic analysis of 37 qualitative interviews, this paper explores the relationship between online feedback and care improvement as articulated by healthcare service users (patients and family members) who provided feedback across different online platforms and social media in the UK. Online feedback was framed by interviewees as, ideally, a public and, in many cases, anonymous 'conversation' between service users and healthcare providers. These 'conversations' were thought of not merely as having the potential to bring about tangible improvements to healthcare, but as in themselves constituting an improvement in care. Vital to this was the premise that providing feedback was an enactment of care - care for other patients, certainly, but also care for healthcare as such and even for healthcare professionals. Ultimately, feedback was understood as an enactment of care for the National Health Service (NHS), as symbolically encompassing all of the above. Putting these findings in dialogue with STS scholarship on care, we argue that, in this context, the provision of online feedback can be understood as a form of care that is, simultaneously, both directed at healthcare (in the round, including patients, professionals, services, organisations, and, of course, health itself) and part of healthcare. We conceptualise this as 'caring for care'. This conceptualization moves beyond dominant framings of online feedback in terms of 'choice' and 'voice'. It embeds online feedback within pre-existing healthcare systems, relations and moral commitments, foregrounds the mutuality of care relations, and draws attention to the affective labour of feedback practices.

Pre-symptomatic detection of COVID-19 from smartwatch data.

Consumer wearable devices that continuously measure vital signs have been used to monitor the onset of infectious disease. Here, we show that data from consumer smartwatches can be used for the pre-symptomatic detection of coronavirus disease 2019 (COVID-19). We analysed physiological and activity data from 32 individuals infected with COVID-19, identified from a cohort of nearly 5,300 participants, and found that 26 of them (81%) had alterations in their heart rate, number of daily steps or time asleep. Of the 25 cases of COVID-19 with detected physiological alterations for which we had symptom information, 22 were detected before (or at) symptom onset, with four cases detected at least nine days earlier. Using retrospective smartwatch data, we show that 63% of the COVID-19 cases could have been detected before symptom onset in real time via a two-tiered warning system based on the occurrence of extreme elevations in resting heart rate relative to the individual baseline. Our findings suggest that activity tracking and health monitoring via consumer wearable devices may be used for the large-scale, real-time detection of respiratory infections, often pre-symptomatically.

Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement.

PLAIN ENGLISH SUMMARY: Patient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse 'data' (which in this paper means written copies of interviews with patients about their experiences). We were working with sets of interviews with 1) young people with depression and 2) people with experiences of stroke. We were looking for key themes that it would be useful for the NHS to know about, and we developed short films which healthcare staff can use to think about how to make care more patient-centred. We wanted to see what user involvement in this analysis would bring, and how best to achieve it practically.After the researcher team had analysed the interviews, we ran two one-day workshops with people with relevant experience as a patient/service user or carer. We gave them some brief training in how to analyse interviews and how they might be used for improving the quality of care. Then we looked at extracts from the interviews, and discussed whether people could see the same themes as the researcher.People identified similar themes to the researcher, but also identified new details the researcher had missed. However, they felt reading large amounts of text was not the best way to use their time and experience. Instead they recommended that a better approach would be for a researcher to meet with a group of users at the start of analysis, to discuss what to look out for. ABSTRACT: Background Patient or user involvement in health research is a well-established principle. However, involvement is often limited to advising on research questions and design, leaving researchers to complete data collection and analysis. Involvement in data analysis is one of the most challenging, least well-explored aspects of involvement. Qualitative interview data forms high volumes of rich, complex material which can be daunting to work with.Analysing narrative interviews with patients is central to a patient-centred quality improvement method called experience-based co-design. The analysis identifies 'touchpoints' - key moments of healthcare experiences - and leads to the production of a 'trigger film' to spark codesign discussions between patients and staff. We wanted to see what user involvement in this analysis would bring, and how best to achieve it. Methods As part of a wider secondary analysis study to create new trigger films, we re-analysed interview transcripts on experiences of young people with depression and experiences of stroke. We then ran two workshops with people with relevant lived experience, working with extracts from the same materials after brief training. Results People involved in the workshops identified similar themes to the researcher, but also brought some new insights. While they engaged easily with the materials selected, we under-estimated how much time it would take people to work through these. Discussion and sharing experiences and perspectives were highly valued in the first workshop. In the second workshop, we therefore started with group discussion, based on people's own experience, of what they thought the touchpoints would be, and later viewed a draft trigger film together to see how it compared. Conclusions Those involved felt that while analysing transcripts was possible in small quantities, it was not best use of their time. We suggest that conversation, rather than data, is at the heart of user involvement in analysis. One way to retain the value of lived experience in the analytic process, without over-burdening people with data, is to elicit user reflections on their experience at the start of analysis, and use this as a guide to direct both researcher and service user attention during the remainder of the process.

" I've said I wish I was dead, you'd be better off without me": A systematic review of people's experiences of living with severe asthma.

OBJECTIVE: Our aim was to conduct a systematic review and synthesis of qualitative evidence exploring the lived experience of adults with severe asthma. DATA SOURCES: We searched MEDLINE via OvidSP, PsycINFO via OvidSP, PubMed, CINAHL, EMBASE, Sociological Abstracts, Google Scholar, the journals Qualitative Health Research and Qualitative Research, and a study of experiences of living with asthma by the Health Experiences Research group. STUDY SELECTIONS: Studies were included if they used qualitative methods and explored the subjective experiences of adults (≥18 years) with a clear diagnosis of severe asthma. RESULTS: From 575 identified studies, five met the inclusion criteria. Synthesis revealed an overarching theme of efforts that people living with severe asthma engage in to achieve personal control over their condition. Individuals 'strive for autonomy' through dealing with symptoms and treatment, acquiring knowledge, making decisions and reclaiming identity. CONCLUSION: This systematic review found a paucity of qualitative studies reporting on people's perspectives of living with severe asthma, and a focus on clinical rather than personal issues. Our synthesis reveals that severe asthma was disempowering, and a threat to identity and life roles. What was important to people living with severe asthma was striving to achieve a greater level of personal control over their condition, but these efforts received little support from their healthcare providers. Thus, more attention should be paid to understanding the self-management strategies and personal goals of people living with severe asthma. This may assist in designing interventions to better support patient self-management and improve health outcomes.

Barriers to a software reminder system for risk assessment of stroke in atrial fibrillation: a process evaluation of a cluster randomised trial in general practice.

BACKGROUND: Oral anticoagulants reduce the risk of stroke in patients with atrial fibrillation (AF), but are underused. AURAS-AF (AUtomated Risk Assessment for Stroke in AF) is a software tool designed to identify eligible patients and promote discussions within consultations about initiating anticoagulants. AIM: To investigate the implementation of the software in UK general practice. DESIGN AND SETTING: Process evaluation involving 23 practices randomly allocated to use AURAS-AF during a cluster randomised trial. METHOD: An initial invitation to discuss anticoagulation was followed by screen reminders appearing during consultations until a decision had been made. The reminders required responses, giving reasons for cases where an anticoagulant was not initiated. Qualitative interviews with clinicians and patients explored acceptability and usability. RESULTS: In a sample of 476 patients eligible for the invitation letter, only 159 (33.4%) were considered suitable for invitation by their GPs. Reasons given were frequently based on frailty, and risk of falls or haemorrhage. Of those invited, 35 (22%) started an anticoagulant (7.4% of those originally identified). A total of 1695 main-screen reminders occurred in 940 patients. In 883 instances, the decision was taken not to initiate and a range of reasons offered. Interviews with 15 patients and seven clinicians indicated that the intervention was acceptable, though the issue of disruptive screen reminders was raised. CONCLUSION: Automated risk assessment for stroke in atrial fibrillation and prompting during consultations are feasible and generally acceptable, but did not overcome concerns about frailty and risk of haemorrhage as barriers to anticoagulant uptake.

A licence to drive? Neurological illness, loss and disruption.

The sense of freedom and independence that being able to drive generates may be taken for granted by many until it is threatened by illness. Drawing on the 'mobility turn' in social sciences that emphasises the social and emotional significance of the car (Sheller and Urry , ), this article presents secondary analysis of narratives of driving and its significance across four neurological conditions (epilepsy, Parkinson's disease, transient ischaemic attack and motor neurone disease). Taking an interactionist approach we explore how the withdrawal of a driving licence can represent not just a practical and emotional loss of independence, but also loss of enjoyment; of a sense and feeling of 'normal' adulthood and social participation; and of an identity (in some cases gendered) of strength and power. Conversely the ability to keep driving can maintain an unbroken thread of narrative, for example enabling people with speech difficulties to feel and look normal behind the wheel. Moments of pleasure and normality illuminate the importance of examining the micro-strands of disruption illness can cause.

Untimely illness: When diagnosis does not match age-related expectations.

BACKGROUND: We explore the concept of "untimely diagnosis," where the onset of a long-term condition occurs at a life stage which does not conform to traditional expectations, focusing on two conditions (asthma and arthritis) typically associated with a particular life stage (childhood and older adulthood, respectively). Previous literature has focused on the meaning of chronic illness in terms of life history, and the biographical lens has been used in various ways to make sense of the experience. Less attention has been paid to the condition onset when it seems dissonant with chronological age. METHODS: Secondary analysis of two qualitative data sets (total 58 interviews) exploring the experiences of people with adult-onset asthma and young people diagnosed with arthritis. Data from the original interview transcripts relating to diagnosis and symptom recognition were re-analysed using a "candidacy" framework to examine how age and diagnosis intersect. RESULTS: People did not always assert their candidacy for either condition because of pre-conceived expectations around age. Similarly, health professionals sometimes failed to recognize patients' candidacy, instead pursuing "age-plausible" possibilities. In some cases, participants were proactive in suggesting a diagnosis to the health professional where diagnosis was delayed. CONCLUSION: The diagnosis of adult-onset asthma, and arthritis in young people, may be regarded as "untimely." We suggest that being diagnosed with what is perceived to be a "childhood" condition in adulthood, or "an older person's" condition in childhood, may be viewed as a "biographical paradox" and an "untimely breach" to the expected order.

"This illness diminishes me. What it does is like theft": A qualitative meta-synthesis of people's experiences of living with asthma.

BACKGROUND: What matters to people in their everyday experiences of living with asthma is influenced by a diverse range of personal, social, medical and environmental factors. Previous reviews of the asthma literature have largely focused on medical aspects of asthma or specific population groups with particular needs. OBJECTIVE: To identify, describe and synthesize from the available qualitative literature the views and experiences of adults living with asthma. METHOD: We systematically searched for qualitative studies reporting on the personal experience of living with asthma. A meta-synthesis approach was used to analyse and interpret the data. Key themes relating to personal perspectives on asthma were identified and grouped into overarching concepts. RESULTS: We identified 26 studies. There was a paucity of literature on the physical burden of asthma symptoms and the role of social support. Our synthesis generated a central concept of the "work" associated with living with asthma: work was of a personal nature, and at times an intensely emotional experience. Individuals tailored their behaviour in response to demands of the physical and social environment, including interactions with health-care professionals. CONCLUSION: This is the first systematic review of the qualitative literature reporting on people's own perspectives of living with asthma. Our findings draw attention to the nuances and sensitivities surrounding patient experiences of self-management. Medical care is a central plank of managing chronic conditions, but our health-care systems are now expected to deliver patient-centred care. Considering the broader aspects of asthma management, beyond that of symptoms and treatment, will help to facilitate comprehensive care.