Developing and testing the Eczema Care Online Toolkit
This 5-year research programme consists of several interlinked projects to develop, test and roll-out a novel online toolkit that has been designed to support people living with eczema to manage their eczema more effectively and to ensure that they feel supported and knowledgeable about their treatments.
The Eczema Care Online Toolkit has been designed to support two main groups of people:
- Families of children with eczema
- Teenagers and young adults who are transitioning to self-care of their eczema.
In developing the toolkit, we have spoken around 200 children and young people with eczema as well as parents and carers of children with eczema to find out what is important to them and understand their experiences of living with eczema. They have helped us to design the online toolkit to make sure that it provides the kind of information and resources that people living with eczema need, and have helped us to ensure that the information is easily understood and engaging.
The toolkit consists of various sections that people can access as they wish and includes videos that explain what eczema is and how the treatments work.
Key information included in the toolkit
The online toolkits aim to help people manage eczema through:
- Regular use of emollient moisturisers and appropriate use of flare control creams (usually topical corticosteroids)
- Avoiding eczema irritants and triggers
- Minimising scratching
- Help managing difficult emotions
The toolkits support young people and families with eczema by building on aspect like knowledge, confidence and self-belief, social support, and factors in the environment to promote good eczema self-care.
The toolkits take people through a brief section of core information before giving access to the main menu with the choice of topics that are important to young people and families with eczema. These topics include:
Views of those using the toolkit:
"I thought I knew how to look after my child’s eczema, but I learned so many new things from ECO about how to keep eczema under control – things I would have never thought of!”
- from a parent/carer
"ECO has given be a lot more confidence about my eczema and I’m now not as embarrassed about it. What I took away from it is that eczema shouldn’t control you - you should control your eczema.”
- from a young person
- eczema treatments
- infections
- talking to your healthcare professional
- diet and allergy
- sleep and itch
- physical activity
- coping with stress and transitioning to self-care
The toolkit for young people also includes topics that are especially important to this group, such as information about finances, school, university, or work and cosmetics.
The toolkit for parents includes extra information important to families such as transitioning to co-management, dealing with child resistance and managing your child’s eczema at nursery and school. The intervention also contains a series of animated videos.
Testing the toolkit
Over the last year we have been testing the toolkit in clinical trials that have included parents and carers of 340 children with eczema and 337 young people with eczema. We are following the families and young people up for a further year to see whether or not using the online toolkit helps to improve their eczema.
Status: results of the clinical trials should be available in 2023