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"Kirkpatrick, Susan"
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Pre-symptomatic detection of COVID-19 from smartwatch data
2020
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.
Analysis of physiological and activity data from consumer smartwatches enables real-time detection, often before symptom onset, of COVID-19, as well as other respiratory illnesses and stress inducers.
Journal Article
Narrative interviewing
2016
Introduction
Narrative interviews place the people being interviewed at the heart of a research study. They are a means of collecting people’s own stories about their experiences of health and illness. Narrative interviews can help researchers to better understand people’s experiences and behaviours. Narratives may come closer to representing the context and integrity of people’s lives than more quantitative means of research.
Methodology
Researchers using narrative interview techniques do not set out with a fixed agenda, rather they tend to let the interviewee control the direction, content and pace of the interview. The paper describes the interview process and the suggested approach to analysis of narrative interviews, We draw on the example from a study that used series of narrative interviews about people’s experiences of taking antidepressants.
Limitations
Some people may find it particularly challenging to tell their story to a researcher in this way rather than be asked a series of questions like in a television or radio interview. Narrative research like all qualitative research does not set out to be generalisable and may only involve a small set of interviews.
Journal Article
Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement
by
Robert, Glenn
,
Locock, Louise
,
Sturmey, Gordon
in
Collaboration
,
Data analysis
,
Engagement (Philosophy)
2019
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.
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.
Journal Article
Non-Focal Neurological Symptoms Associated with Classical Presentations of Transient Ischaemic Attack: Qualitative Analysis of Interviews with Patients
by
Lasserson, Daniel S.
,
Giles, Matthew F.
,
Kirkpatrick, Susan
in
Aged
,
Aged, 80 and over
,
Articulation Disorders - pathology
2013
Improving the recognition of transient ischaemic attack (TIA) at initial healthcare contact is essential as urgent specialist assessment and treatment reduces stroke risk. Accurate TIA detection could be achieved with clinical prediction rules but none have been validated in primary care. An alternative approach using qualitative analysis of patients' experiences of TIA may identify novel features of the TIA phenotype that are not detected routinely, as such techniques have revealed novel early features of other important conditions such as meningococcaemia. We sought to determine whether the patient's experience of TIA would reveal additional deficits that can be tested prospectively in cohort studies to determine their additional diagnostic and prognostic utility at the first healthcare contact.
Qualitative semi-structured interviews with 25 patients who had experienced definite TIA as determined by a stroke specialist; framework analysis to map symptoms and key words or descriptive phrases used against each individual, with close attention to the detail of the language used. All interview transcripts were reviewed by a specialist clinician with experience in TIA/minor stroke. Patients described non-focal symptoms consistent with higher function deficits in spatial perception and awareness of deficit, as well as feelings of disconnection with their immediate surroundings. Of the classical features, weakness and speech disturbance were described in ways that did not meet the readily recognisable phenotype.
Analysis of patients' narrative accounts reveals a set of overlooked features of the experience of TIA which may provide additional diagnostic utility so that providers of first contact healthcare can recognise TIA more easily. Future research is required in a prospective cohort of patients presenting with transient neurological symptoms to determine how frequent these features are, what they add to diagnostic information and whether they can refine measures to predict stroke risk.
Journal Article
Response to “comments on: involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement
2019
Availability of data and materials Not applicable.
Journal Article
“This illness diminishes me. What it does is like theft”: A qualitative meta‐synthesis of people's experiences of living with asthma
2018
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.
Journal Article
Untimely illness: When diagnosis does not match age‐related expectations
2018
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.
Journal Article
Starting antidepressant use: a qualitative synthesis of UK and Australian data
2015
ObjectiveTo explore people's experiences of starting antidepressant treatment.DesignQualitative interpretive approach combining thematic analysis with constant comparison. Relevant coding reports from the original studies (generated using NVivo) relating to initial experiences of antidepressants were explored in further detail, focusing on the ways in which participants discussed their experiences of taking or being prescribed an antidepressant for the first time.Participants108 men and women aged 22–84 who had taken antidepressants for depression.SettingRespondents recruited throughout the UK during 2003–2004 and 2008 and 2012–2013 and in Australia during 2010–2011.ResultsPeople expressed a wide range of feelings about initiating antidepressant use. People's attitudes towards starting antidepressant use were shaped by stereotypes and stigmas related to perceived drug dependency and potentially extreme side effects. Anxieties were expressed about starting use, and about how long the antidepressant might begin to take effect, how much it might help or hinder them, and about what to expect in the initial weeks. People worried about the possibility of experiencing adverse effects and implications for their senses of self. Where people felt they had not been given sufficient time during their consultation information or support to take the medicines, the uncertainty could be particularly unsettling and impact on their ongoing views on and use of antidepressants as a viable treatment option.ConclusionsOur paper is the first to explore in-depth patient existential concerns about start of antidepressant use using multicountry data. People need additional support when they make decisions about starting antidepressants. Health professionals can use our findings to better understand and explore with patients’ their concerns before their patients start antidepressants. These insights are key to supporting patients, many of whom feel intimidated by the prospect of taking antidepressants, especially during the uncertain first few weeks of treatment.
Journal Article
Modelling Successful Self-Management in Adults With Cystic Fibrosis: Vicarious Self-Efficacy From Videos of ‘People Like Me’
by
Drabble, Sarah J
,
Whelan, Pauline
,
Wildman, Martin J
in
Activities of daily living
,
Adults
,
Collaboration
2022
BackgroundSelf-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’.MethodologyOne-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.ResultsIn 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.ConclusionsThe 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.
Journal Article