Workstream 3 addresses the third objective of the programme: to develop online behavioural interventions to support eczema self-care for patients and parents/carers.
This work has been published:
https://doi.org/10.1136/bmjopen-2021-056867.42
https://doi.org/10.3399/BJGP.2021.0503.35
https://doi.org/10.1186/s40900-019-0169-8.43
Workstream 3.1: intervention planning
Aim
- To develop online behavioural interventions to support eczema management in (1) young people aged 13–25 and (2) parents/carers of children aged 0–12 with eczema using theory-, evidence-, and person-based approaches.
Methods
Two complex behavioural interventions were developed to support eczema management: one for young people aged 13–25 with eczema (intervention – young people) and one for parents and carers of children aged 0–12 with eczema (intervention – parent/carer). The interventions were online and developed using theory-, evidence- and person-based approaches.44,45 Full details of the development of our programme theory and interventions have previously been published.35,42
Intervention planning was carried out alongside our systematic review of the qualitative literature and qualitative studies reported in workstream 1 and the systematic reviews of TCS safety and effectiveness reported in workstream 2 to guide our programme theory, identify relevant intervention components and characteristics and ensure treatment information was evidence-based. This evidence guided decisions regarding the intervention’s target behaviours and provided us with an in-depth understanding of the key issues, needs and behavioural challenges of our two target groups (young people and parents/carers).
Intervention development group
As reported in Greenwell et al.,42 intervention planning and development were guided by a multidisciplinary intervention development group, which comprised 18 members including PPI contributors, dermatologists, a nurse consultant, researchers with an interest in eczema, GPs, health psychologists and experts in intervention development, writing patient-friendly health information and long-term conditions in adolescents. Through regular meetings and reviewing documents, this group guided the design of the research, helped with the interpretation of the research findings, and provided detailed feedback on the intervention plans, written content, website design and prototypes for both online interventions. Two mothers of children and young people with eczema (one of whom had eczema herself and helps run an eczema support group) were part of our multidisciplinary intervention development group. We also sought additional PPI feedback on the intervention content and design from two young people with eczema and a panel of PPI contributors with an interest in skin research, most of whom had experience of eczema, and some were aged 18–25. Further details of how contributions from public contributors and other stakeholders complemented the person-based approach have been published.43
Defining intervention target behaviours
The multidisciplinary intervention development group agreed that ECO would aim to reduce eczema severity by supporting young people with eczema and parents/carers of children with eczema to:
- increase their use of emollients to maintain skin hydration and prevent flare-up
- improve their use of TCSs or topical calcineurin inhibitors (TCIs) through reactive applications of these treatments in response to flare-ups or, where appropriate, regular intermittent (‘weekend’) preventative applications of TCSs or TCIs if emollients are insufficient as maintenance therapy
- improve their management of irritants and triggers
- improve their emotional management
- reduce scratching.
The use of emollients and TCSs/TCIs was identified as core behaviours that would likely have the greatest effect on eczema severity. Therefore, intervention content relating to these behaviours was deemed the most important.
Developing an intervention plan
Consistent with the person-based approach,44 our in-depth understanding of young people with eczema and parents/carers of children with eczema informed the development of guiding principles (see Appendix 2, Tables 2 and 3), which outlined key intervention objectives and the design features that will address these.46 A list of potential barriers and facilitators to the target behaviours was also identified from this evidence base and from consultation with the multidisciplinary intervention development group and additional PPI representatives. A behavioural analysis (see Appendix 3, Tables 4 and 5) outlined the intervention components that were added to address each of the identified barriers and facilitators for each target behaviour and these components were mapped onto behaviour change theoretical frameworks to describe the planned intervention content and identify hypothesised mechanisms of action. The behaviour change techniques taxonomy classifies intervention content by their behaviour change techniques, the smallest component for changing behaviour.47 The behaviour change wheel was used to classify the source (a component of the COM-B model hypothesised to influence behaviour; capability, opportunity, motivation) and function (e.g. ‘education’, ‘persuasion’) of each individual or group of behaviour change techniques.48 We also mapped the behaviour change techniques onto their theoretical constructs (e.g. ‘knowledge’, ‘skills’) using the theoretical domains framework,49 which is recommended for use alongside the behaviour change wheel. To illustrate key elements of the intervention’s programme theory, two logic models (see Appendix 1, Figures 7 and 8) were developed to illustrate how the intervention components, theoretical constructs (intervention processes) and key behaviours (purported mediators) influence the intervention outcomes (eczema severity).
Workstream 3.2: intervention development
As published in Sivyer et al.35 and Greenwell et al.,42 once intervention planning was complete, we started developing two interventions: one for young people with eczema and one for parents/carers of children with eczema. Creating the intervention prototype was done in several stages. Guided by our target behaviours, guiding principles and qualitative research, the multidisciplinary intervention development group agreed the topics of the intervention modules and videos to be created. We then wrote page content and video scripts, and circulated them to the multidisciplinary intervention development group for comment to ensure it was evidence-based and medically accurate, and the advice was clear and feasible. Positive and negative feedback was entered into the person-based approach table of changes,50 and potential changes were discussed, agreed and prioritised. We tested either the video scripts, audio recordings of the scripts or a storyboard or prototype of the video with young people and parents/carers using think-aloud interviews, and these were also reviewed by a PPI panel. Once the written intervention content and videos were finalised, we created a working prototype of the intervention using the LifeGuide software (University of Southampton, Hampshire, UK),51 which was reviewed by our PPI contributors and further optimised through qualitative think-aloud interviews with young people with eczema and parents/carers of children with eczema. The final videos were created by an external video creator.
Description of interventions
We developed two online behavioural interventions using LifeGuide software (www.lifeguideonline.org). Interventions were thoroughly tested to ensure functionality across different types of devices (computers, mobile phones, tablets). A modular intervention was developed with sections focusing on topics related to eczema including treatment use, lifestyle and environment and psychosocial issues (e.g. stress). Users were initially guided through a short introductory module, which had three key purposes:
- To establish credibility of the intervention.
- To explain eczema and the skin barrier.
- To briefly explain key treatments (emollients and TCSs) and how to use them.
This aimed to ensure users had the basic knowledge/skills for managing eczema. A key aspect of the intervention was the terminology developed for describing emollients, which we called ‘moisturising creams’, and TCSs, which we called ‘flare control creams’. These terms were explored throughout the qualitative research and with PPI in this programme to reflect parents’/carers and young people’s own terminology for eczema treatments, often referring to all treatments as ‘creams’ and not understanding the difference between emollients and TCSs. The intention behind using the terminology ‘moisturising creams’ and ‘flare control creams’ was to help make clear their different purposes, particularly the role of TCS and TCIs in treating eczema flare-ups.
At the end of the introduction, users could take a brief eczema assessment to assess their or their child’s eczema, the results of which then recommended one of two core modules: ‘getting control using flare control creams’ or ‘keeping control using moisturising creams’. These provided more information about treatments, addressed common concerns, and provided information and photos/video demonstrations of how best to use treatments. Additional modules were provided through drop-down menus to allow users to access a range of topics. These included managing irritants and triggers (‘what can make eczema worse’), managing the impact of eczema (‘itch, stress, and sleep’), and other treatments and related issues (‘more about treatments’). While similar topics were covered in the young people and parent/carer interventions, their content often deferred to include information relevant and meaningful to that age group. For parents/carers, these also included information on co-management (‘help your child manage eczema’), and for young people, we included additional content on cosmetics, make-up and shaving and finances.
A key design principle of both interventions was that users may not have a lot of time to spend on the intervention and so the content was designed to be helpful, relatable and interesting even if someone only had a few minutes to spend on it. Another key design feature was the use of quotes from other young people or parents/carers sharing their experiences of eczema and eczema management advice throughout the intervention. To ensure inclusivity, images and descriptions of eczema included different skin tones. See Appendix 2, Tables 2 and 3 for full details of guiding principles for intervention design. Template for Intervention Description and Replication checklist is given in Report Supplementary Material 2.
Intervention optimisation
Qualitative think-aloud interviews were carried out with a wide range of target users to ensure the interventions were accessible, easy to use, relatable and meaningful. We also used the think-aloud interviews to elicit feedback on aspects like new terminology (moisturising creams and flare control creams) and design features like the quiz for recommending topics.
Face-to-face think-aloud interviews were conducted between October 2018 and April 2019. Participants were recruited through mail-outs from eight GP practices in the South of England. Participants needed to be aged 13–25 years or have a child aged 0–12 years with diagnosed eczema and with one or more eczema prescriptions in the previous 12 months. Participants (or legal guardians of 13- to 15-year-olds) received an invitation pack, including an information sheet, and a reply slip to express interest in the study. To gather a diverse range of views and cover a range of developmental stages, participants were purposively sampled on the child or young person’s age, gender, eczema severity and geographical location. Selected participants were invited to a face-to-face and consented before the interview.
Key findings
Think-aloud interviews were conducted with 25 parents and carers and 28 young people that lasted 45–90 minutes and involved think-aloud techniques where participants were asked to use sections of the intervention as they usually would while saying all their thoughts out loud. Interviews were audio-recorded and transcribed verbatim. Data were analysed concurrently to the interviews using a table of changes,50 in which all positive and negative comments were collated, and potential changes identified and prioritised in terms of feasibility and importance of changes in increasing acceptability and feasibility of the intervention. Minor changes to the intervention were agreed within the intervention development team with key issues discussed with stakeholders to support reflexivity and medical accuracy of modified intervention content. Interviews were carried out iteratively, with feedback from earlier interviews informing modifications to optimise the intervention, and later interviews using revised prototype interventions to seek feedback on modifications.
Views of the prototype were generally positive, particularly the new terminology for eczema treatments, the wide variety of topics covered, and the videos, and tips. Participants found the information and advice clear, easy to follow, helpful and relatable. They particularly found the quotes and advice from others like them helpful. Young people and parents/carers found the information about the safety of TCSs reassuring.
Young people found the facts about how common it is to still have symptoms at their age reassuring, personal and it made them feel less alone. Young people valued that the advice focused on living well with eczema, rather than focusing solely on medical treatments. Most young people explained how they learnt something new about eczema and its management from the part of the website they used, with some explaining that intervention helped address the knowledge gaps from childhood.
Parents/carers however felt the content was lengthy and repetitive, and wanted quicker access to the main modules. A key issue was that many parents/carers initially felt the content was not relevant to them if they had been looking after their child’s eczema for a while. Despite this, when going through the content participants still identified things that they had not known, such as why and how emollients help keep eczema under control and how to correctly apply treatments (e.g. using TCS until 2 days after the eczema flare-up clears, applying topical treatments in the direction of hair growth). Parents/carers also felt they had gained useful practical tips they had never tried before, such as putting creams in the fridge to make them cool to soothe itching or setting reminders on phones.
Modules were streamlined and made more interactive to increase user choice and autonomy using optional click-outs and pop-ups. In particular, the core content in the introductory module was cut from 21 to 9 short pages. Readability was improved on individual pages by: (1) highlighting key messages using bold text; (2) using bullet points; and (3) separating text using boxes. Signposting, quotes and tips were added to the introductory module and first page of the core modules to emphasise that:
- the website provided up-to-date information about eczema and its treatments
- core modules would be basic at the start but then progress
- even parents/carers who had been caring for their child’s eczema for a while had learnt new things.
Conclusion
Two interventions were rigorously developed following complementary theory-, evidence- and person-based approaches to intervention development helped ensure the intervention was acceptable and engaging to a sample of young people with eczema and parents and carers of children with eczema. Our multidisciplinary intervention development group, including PPI, ensured that the content was evidence-based, that advice was feasible, and that the perspectives of families and people living with eczema were considered throughout the whole development process.
The interventions were subsequently evaluated for their clinical and cost-effectiveness, as described in Workstream 4.