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      ‘It's like the bad guy in a movie who just doesn't die’: a qualitative exploration of young people's adaptation to eczema and implications for self‐care†

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          Summary

          Background

          Eczema is a common childhood inflammatory skin condition, affecting more than one in five children. A popular perception is that children ‘outgrow eczema’, although epidemiological studies have shown that, for many, eczema follows a lifelong episodic course.

          Objectives

          To explore the perceptions of young people about the nature of their eczema and how these perceptions relate to their self‐care and adapting to living with eczema.

          Methods

          This is a secondary inductive thematic analysis of interviews conducted for Healthtalk.org. In total 23 interviews with young people with eczema were included. Of the 23 participants, 17 were female and six male, ranging from 17 to 25 years old.

          Results

          Participants generally experienced eczema as an episodic long‐term condition and reported a mismatch between information received about eczema and their experiences. The experience of eczema as long term and episodic had implications for self‐care, challenging the process of identifying triggers of eczema flare‐ups and evaluating the success of treatment regimens. Participants’ experiences of eczema over time also had implications for adaptation and finding a balance between accepting eczema as long term and hoping it would go away. This linked to a gradual shift in treatment expectations from ‘cure’ to ‘control’ of eczema.

          Conclusions

          For young people who continue to experience eczema beyond childhood, a greater focus on self‐care for a long‐term condition may be helpful. Greater awareness of the impact of early messages around ‘growing out of’ eczema and provision of high‐quality information may help patients to manage expectations and support adaptation to treatment regimens.

          What's already known about this topic?

          • There is a common perception that people ‘grow out of’ eczema, but for many people eczema follows a lifelong episodic course.

          • Qualitative work has shown that parents can find that being told their child will grow out of eczema is dismissive, and that they have difficulty with messages about ‘control not cure’ of eczema.

          • It is unclear how young people perceive their eczema and the implications of this perception for their adaptation and self‐care.

          What does this study add?

          • The message that many people ‘grow out of’ eczema has a potentially detrimental effect for young people where the condition persists.

          • This has implications for young people's perceptions of their eczema, their learning to self‐care and how they adapt to living with eczema and eczema treatments.

          What are the clinical implications of this work?

          • Clinicians need to promote awareness among young people that eczema is a long‐term episodic condition in order to engage them with effective self‐care.

          • Young people transitioning to self‐care need evidence‐based information that is specific and relatable to them.

          Abstract

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          Most cited references18

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          The sociology of chronic illness: a review of research and prospects

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            Clinical practice. Atopic dermatitis.

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              The prevalence of atopic dermatitis beyond childhood: A systematic review and meta‐analysis of longitudinal studies

              Abstract Background There are sparse and conflicting data regarding the long‐term clinical course of atopic dermatitis (AD). Although often described as a childhood disease, newer population‐based estimates suggest the prevalence of pediatric and adult disease may be similar. Methods Our objective was to determine whether there is a decline in the prevalence of AD in population‐based cohorts of patients followed longitudinally beyond childhood. We conducted a systematic review and meta‐analysis including studies assessing AD prevalence across 3 or more points in time. The primary outcome was weighted overall risk difference (percentage decrease in AD prevalence). Results Of 2080 references reviewed, 7 studies with 13 515 participants were included. Participants were assessed at 3‐6 time points, ranging from age 3 months to 26 years. The percentage decrease in prevalence after age 12 was 1%, which was not significantly different from zero (95% confidence interval −2%‐5%). Similar results were found with other age cut‐offs. Conclusion The prevalence of AD in longitudinal birth cohort studies is similar in childhood and adolescence/early adulthood.
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                Author and article information

                Contributors
                d.ghio@soton.ac.uk
                Journal
                Br J Dermatol
                Br. J. Dermatol
                10.1111/(ISSN)1365-2133
                BJD
                The British Journal of Dermatology
                John Wiley and Sons Inc. (Hoboken )
                0007-0963
                1365-2133
                28 July 2019
                January 2020
                : 182
                : 1 ( doiID: 10.1111/bjd.v182.1 )
                : 112-118
                Affiliations
                [ 1 ] Primary Care and Population Science, Faculty of Medicine University of Southampton Southampton U.K
                [ 2 ] Centre for Clinical and Community Applications of Health Psychology Faculty of Social and Human Sciences University of Southampton Southampton U.K
                [ 3 ] Centre of Evidence Based Dermatology School of Medicine University of Nottingham Nottingham U.K
                [ 4 ] Nuffield Department of Primary Care Health Sciences Radcliffe Observatory Quarter Woodstock Road Oxford OX2 6GG U.K
                [ 5 ] Faculty of Epidemiology & Population Health London School of Hygiene and Tropical Medicine London U.K
                [ 6 ] Health Data Research U.K. London U.K
                Author notes
                [*] [* ] Correspondence

                Daniela Ghio.

                E‐mail: d.ghio@ 123456soton.ac.uk

                Author information
                https://orcid.org/0000-0002-0580-0205
                https://orcid.org/0000-0001-5041-2095
                https://orcid.org/0000-0001-7264-5260
                Article
                BJD18046
                10.1111/bjd.18046
                6972719
                31021418
                84d50606-754e-4711-918a-e1c118186e13
                © 2019 The Authors. British Journal of Dermatology published by John Wiley & Sons Ltd on behalf of British Association of Dermatologists.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 23 April 2019
                Page count
                Figures: 1, Tables: 0, Pages: 7, Words: 5668
                Funding
                Funded by: Programme Grants for Applied Research , open-funder-registry 10.13039/501100007602;
                Award ID: RP‐PG‐0216‐20007
                Funded by: Wellcome Trust , open-funder-registry 10.13039/100004440;
                Award ID: 205039/Z/16/Z
                Funded by: Health Data Research UK
                Award ID: LOND1
                Funded by: NIHR Research for Patient Benefit
                Award ID: PB‐PG‐0213‐30006
                Categories
                Qualitative and Outcomes Research
                Original Articles
                Qualitative and Outcomes Research
                Custom metadata
                2.0
                January 2020
                Converter:WILEY_ML3GV2_TO_JATSPMC version:5.7.5 mode:remove_FC converted:21.01.2020

                Dermatology
                Dermatology

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