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      Living in a care home during COVID-19: a case study of one person living with dementia

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      Quality in Ageing and Older Adults
      Emerald

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          Abstract

          Purpose

          This paper aims to understand the lived experience of a person living with dementia in a care home during the COVID-19 pandemic. It responds to the absence in research of the voices of people with dementia living in care homes during the pandemic.

          Design/methodology/approach

          The paper adopts a single case study design applied thematic analysis to semi-structured interview data to discover the experiences of one person living with dementia in a care home during a period of lockdown.

          Findings

          Five themes reveal how the participant responded to the practical and emotional challenges of the pandemic: autonomy; fears; keeping connected; keeping safe and other people living with dementia. These themes highlight the participant’s ability to adapt, accept and dispute lockdown restrictions, revealing considerable insight into their situation.

          Research limitations/implications

          The pandemic has restricted access to care homes, which informed the single case study design. This approach to the research may restrict the generalisability of the findings. Other researchers are encouraged to include the voices of people with dementia living in care homes in further studies.

          Practical implications

          Implications for practice, presented in this paper, promote quality psychosocial approaches when health-care workers engage with people living with dementia during periods of restricted activity.

          Originality/value

          Unlike other studies about the impact of the pandemic on care homes, this paper explores the experience of the pandemic in care homes from the perspective of a person living with dementia.

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          Most cited references35

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          Using thematic analysis in psychology

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            Clinical characteristics of 113 deceased patients with coronavirus disease 2019: retrospective study

            Abstract Objective To delineate the clinical characteristics of patients with coronavirus disease 2019 (covid-19) who died. Design Retrospective case series. Setting Tongji Hospital in Wuhan, China. Participants Among a cohort of 799 patients, 113 who died and 161 who recovered with a diagnosis of covid-19 were analysed. Data were collected until 28 February 2020. Main outcome measures Clinical characteristics and laboratory findings were obtained from electronic medical records with data collection forms. Results The median age of deceased patients (68 years) was significantly older than recovered patients (51 years). Male sex was more predominant in deceased patients (83; 73%) than in recovered patients (88; 55%). Chronic hypertension and other cardiovascular comorbidities were more frequent among deceased patients (54 (48%) and 16 (14%)) than recovered patients (39 (24%) and 7 (4%)). Dyspnoea, chest tightness, and disorder of consciousness were more common in deceased patients (70 (62%), 55 (49%), and 25 (22%)) than in recovered patients (50 (31%), 48 (30%), and 1 (1%)). The median time from disease onset to death in deceased patients was 16 (interquartile range 12.0-20.0) days. Leukocytosis was present in 56 (50%) patients who died and 6 (4%) who recovered, and lymphopenia was present in 103 (91%) and 76 (47%) respectively. Concentrations of alanine aminotransferase, aspartate aminotransferase, creatinine, creatine kinase, lactate dehydrogenase, cardiac troponin I, N-terminal pro-brain natriuretic peptide, and D-dimer were markedly higher in deceased patients than in recovered patients. Common complications observed more frequently in deceased patients included acute respiratory distress syndrome (113; 100%), type I respiratory failure (18/35; 51%), sepsis (113; 100%), acute cardiac injury (72/94; 77%), heart failure (41/83; 49%), alkalosis (14/35; 40%), hyperkalaemia (42; 37%), acute kidney injury (28; 25%), and hypoxic encephalopathy (23; 20%). Patients with cardiovascular comorbidity were more likely to develop cardiac complications. Regardless of history of cardiovascular disease, acute cardiac injury and heart failure were more common in deceased patients. Conclusion Severe acute respiratory syndrome coronavirus 2 infection can cause both pulmonary and systemic inflammation, leading to multi-organ dysfunction in patients at high risk. Acute respiratory distress syndrome and respiratory failure, sepsis, acute cardiac injury, and heart failure were the most common critical complications during exacerbation of covid-19.
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              What can “thematic analysis” offer health and wellbeing researchers?

              The field of health and wellbeing scholarship has a strong tradition of qualitative research—and rightly so. Qualitative research offers rich and compelling insights into the real worlds, experiences, and perspectives of patients and health care professionals in ways that are completely different to, but also sometimes complimentary to, the knowledge we can obtain through quantitative methods. There is a strong tradition of the use of grounded theory within the field—right from its very origins studying dying in hospital (Glaser & Strauss, 1965)—and this covers the epistemological spectrum from more positivist forms (Glaser, 1992, 1978) through to the constructivist approaches developed by Charmaz (2006) in, for instance, her compelling study of the loss of self in chronic illness (Charmaz, 1983). Similarly, narrative approaches (Riessman, 2007) have been used to provide rich and detailed accounts of the social formations shaping subjective experiences of health and well-being (e.g., Riessman, 2000). Phenomenological and hermeneutic approaches, including the more recently developed interpretative phenomenological analysis (Smith, Flowers, & Larkin, 2009), are similarly regularly used in health and wellbeing research, and they suit it well, oriented as they are to the experiential and interpretative realities of the participants themselves (e.g., Smith & Osborn, 2007). Thematic analysis (TA) has a less coherent developmental history. It appeared as a “method” in the 1970s but was often variably and inconsistently used. Good specification and guidelines were laid out by Boyatzis (1998) in a key text focused around “coding and theme development” that moved away from the embrace of grounded theory. But “thematic analysis” as a named, claimed, and widely used approach really “took off” within the social and health sciences following the publication of our paper Using thematic analysis in psychology in 2006 (Braun & Clarke, 2006; see also Braun & Clarke, 2012, 2013; Braun, Clarke, & Rance, 2014; Braun, Clarke, & Terry, 2014; Clarke & Braun, 2014a, 2014b). The “in psychology” part of the title has been widely disregarded, and the paper is used extensively across a multitude of disciplines, many of which often include a health focus. As tends to be the case when analytic approaches “mature,” different variations of TA have appeared: ours offer a theoretically flexible approach; others (e.g., Boyatzis, 1998; Guest, MacQueen, & Namey, 2012; Joffe, 2011) locate TA implicitly or explicitly within more realist/post-positivist paradigms. They do so through, for instance, advocating the development of coding frames, which facilitate the generation of measures like inter-rater reliability, a concept we find problematic in relation to qualitative research (see Braun & Clarke, 2013). Part of this difference results from the broad framework within which qualitative research is conducted: a “Big Q” qualitative framework, or a “small q” more traditional, positivist/quantitative framework (see Kidder & Fine, 1987). Qualitative health and wellbeing researchers will be researching across these research traditions—making TA a method well-suited to the varying needs and requirements of a wide variety of research projects. Despite the widespread uptake of TA as a formalised method within the qualitative analysis canon, and within health and wellbeing research, we often get emails from researchers saying they have been queried about the validity of TA as a method, or as a method suitable for their particular research project. For instance, we get emails from doctoral students or potential doctoral students, who have been told that “TA isn't sophisticated enough for a doctoral project” or emails from researchers who have been told that TA is only a descriptive or positivist method that requires no interpretative analysis. We get emails from people asking how to respond to reviewer queries on articles submitted for publication, where the validity of TA has been raised. We get so many emails, that we've created a website with answers to many of the questions we get: www.psych.auckland.ac.nz/thematicanalysis. The queries or critiques often reveal a lack of understanding about the potential of TA, and also about the variability and flexibility of the method. They often seem to assume a realist, descriptive method, and a method that lacks nuance, subtlety, or interpretative depth. This is incorrect. TA can be used in a realist or descriptive way, but it is not limited to that. The version of TA we've developed provides a robust, systematic framework for coding qualitative data, and for then using that coding to identify patterns across the dataset in relation to the research question. The questions of what level patterns are sought at, and what interpretations are made of those patterns, are left to the researcher. This is because the techniques are separate from the theoretical orientation of the research. TA can be done poorly, or it can be done within theoretical frameworks you might disagree with, but those are not reasons to reject the whole approach outright. TA offers a really useful qualitative approach for those doing more applied research, which some health research is, or when doing research that steps outside of academia, such as into the policy or practice arenas. TA offers a toolkit for researchers who want to do robust and even sophisticated analyses of qualitative data, but yet focus and present them in a way which is readily accessible to those who aren't part of academic communities. And, as a comparatively easy to learn qualitative analytic approach, without deep theoretical commitments, it works well for research teams where some are more and some are less qualitatively experienced. Ultimately, choice of analytic approach will depend on a cluster of factors, including what topic the research explores, what the research question is, who conducts the research, what their research experience is, who makes up the intended audience(s) of the research, the theoretical location(s) of the research, the research context, and many others. Some of these are somewhat fluid, some are more fixed. Ultimately, we advocate for an approach to qualitative research which is deliberative, reflective, and thorough. TA provides a tool that can serve these purposes well, but it doesn't serve every purpose. It can be used widely for health and wellbeing research, but it also needs to be used wisely. Virginia Braun School of Psychology, The University of AucklandPrivate Bag 92019, Auckland Mail Centre 1142Auckland, New ZealandEmail: v.braun@auckland.ac.nz Victoria Clarke Department of Health and Social Sciences, University of the West of EnglandBristol BS16 1QY, UK
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                Author and article information

                Journal
                Quality in Ageing and Older Adults
                QAOA
                Emerald
                1471-7794
                1471-7794
                June 15 2021
                December 10 2021
                June 15 2021
                December 10 2021
                : 22
                : 3/4
                : 147-158
                Article
                10.1108/QAOA-02-2021-0024
                ff37f7b1-0363-41e3-a5b4-721956e613e1
                © 2021

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