‘Eczema shouldn’t control you; you should control eczema’: qualitative process evaluation of online behavioural interventions to support young people and parents/carers of children with eczema

Author:

Greenwell Kate1ORCID,Sivyer Katy1ORCID,Howells Laura2ORCID,Steele Mary3ORCID,Ridd Matthew J4ORCID,Roberts Amanda2,Ahmed Amina2,Lawton Sandra5ORCID,Langan Sinéad M6ORCID,Hooper Julie3ORCID,Wilczynska Sylvia3,Leighton Paul2ORCID,Griffiths Gareth7ORCID,Sach Tracey8ORCID,Little Paul3ORCID,Williams Hywel C2ORCID,Thomas Kim S2ORCID,Yardley Lucy19ORCID,Santer Miriam3ORCID,Muller Ingrid3ORCID

Affiliation:

1. Centre for Clinical and Community Applications of Health Psychology, Faculty of Environmental and Life Sciences, University of Southampton , Southampton , UK

2. Centre of Evidence Based Dermatology, Lifespan and Population Health, School of Medicine, University of Nottingham , Nottingham , UK

3. Primary Care Research Centre, Primary Care, Population Sciences and Medical Education Unit, Faculty of Medicine, University of Southampton , Southampton , UK

4. Population Health Sciences, University of Bristol , Bristol , UK

5. Department of Dermatology, Rotherham NHS Foundation Trust , Rotherham , UK

6. Faculty of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine , London , UK

7. Southampton Clinical Trials Unit, University of Southampton , UK

8. Health Economics Group, Norwich Medical School, University of East Anglia, Norwich Research Park , Norwich , UK

9. School of Psychological Science, University of Bristol , Bristol , UK

Abstract

Abstract Background There is a lack of well-conducted randomized controlled trials evaluating the effectiveness of theory-based online interventions for eczema. To address these deficiencies, we previously developed and demonstrated the effectiveness of two online behavioural interventions: Eczema Care Online for parents/carers of children with eczema, and Eczema Care Online for young people with eczema. Objectives To explore the views and experiences of people who have used the Eczema Care Online interventions to provide insights into how the interventions worked and identify contextual factors that may impede users’ engagement with the interventions. Methods Qualitative semistructured interviews were conducted with 17 parents/carers of children with eczema and 17 young people with eczema. Participants were purposively sampled from two randomized controlled trials of the interventions and recruited from GP surgeries in England. Transcripts were analysed using inductive thematic analysis, and intervention modifications were identified using the person-based approach table of changes method. Results Both young people and parents/carers found the interventions easy to use, relatable and trustworthy, and perceived that they helped them to manage their eczema, thus suggesting that Eczema Care Online may be acceptable to its target groups. Our analysis suggested that the interventions may reduce eczema severity by facilitating empowerment among its users, specifically through improved understanding of, and confidence in, eczema management, reduced treatment concerns, and improved treatment adherence and management of irritants/triggers. Reading about the experiences of others with eczema helped people to feel ‘normal’ and less alone. Some (mainly young people) expressed firmly held negative beliefs about topical corticosteroids, views that were not influenced by the intervention. Minor improvements to the design and navigation of the Eczema Care Online interventions and content changes were identified and made, ready for wider implementation. Conclusions People with eczema and their families can benefit from reliable information, specifically information on the best and safest ways to use their eczema treatments early in their eczema journey. Together, our findings from this study and the corresponding trials suggest wider implementation of Eczema Care Online (EczemaCareOnline.org.uk) is justified.

Funder

National Institute for Health and Care Research

Programme Grants for Applied Research

NIHR Biomedical Research Centre

NIHR Applied Research Collaboration West

Wellcome Senior Clinical Research fellowship

Wellcome Trust

Department of Health and Social Care

Publisher

Oxford University Press (OUP)

Subject

Dermatology

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