Wellbeing toolkit for all EB parents

This project will develop a self-help toolkit to support wellbeing in parents of children with EB.

Man in shirt and suit jacket looking at the camera.

Prof Andrew Thompson works at the School of Psychology, Cardiff University, UK, on this project to design, produce and test a self-help toolkit for parents caring for children with EB. Mindfulness and self-compassion-based techniques have already shown to be helpful for parents of children with other skin conditions and may be included. The final product will be based on specific needs identified by EB parents and doctors through focus groups. It will be tested by comparing outcomes for two groups of parents: those who have tried the toolkit and those who have not.

About our funding:

Research leader	Prof Andrew Thompson
Insitution	School of Psychology, Cardiff University, UK
Type of EB	All types of EB
Patient involvement	Focus groups, toolkit trial
Funding amount	£153,696
Project length	2.5 years
Start date	20 December 2023
DEBRA internal ID	GR000052

Latest progress summary:

Due 2025.

About our researchers:

Lead researcher:

Professor Andrew Thompson is a registered Consultant Clinical Psychologist and a registered Health Psychologist. He is currently the NHS Programme Director of the South Wales Clinical Psychology training programme based at Cardiff University. Before taking this position, he worked at the University of Sheffield as Director of Clinical Psychology Training Research and ran an NHS psychodermatology Improving Access to Psychological Therapies (IAPT) service. Prof Thompson has a background in researching conditions that affect appearance, focusing on skin conditions. He was the lead psychological advisor for the All Party Parliamentary Group on Skin Diseases (APPGS) and an author of the 2020 mental health report produced by the APPGS.

Co-researchers:

Dr Faith Martin is a registered clinical and health psychologist. She has worked with people affected by long-term conditions in both clinical practice and her research. She has co-developed self-management resources to support a wide range of users, including people affected by cancer, parents of young people with cancer, parents of young people with autism, and parents of young people who self-harm. This has included leading and contributing the development of ”HOPE” digital self-management interventions that are in use by Macmillan Cancer Support and NHS England in the South West (Long COVID). Her interest in supporting parents began when setting up a clinic to support parents of children with muscle wasting conditions and working in liaison mental health at the children’s hospital in Bristol. She is a Senior Lecturer in the School of Psychology, Cardiff University, where her research focuses on supporting parents of young people with mental health problems.

Dr Olivia Hughes completed a PhD which focused on mindfulness-based support for children and families affected by skin conditions. Olivia is a Trustee to Skin Care Cymru and participated in the Welsh Senedd Cross Party Group on Skin. She is a Patient Associate Editor with the British Journal of Dermatology and produces plain language summaries of research articles published in the journal. She is also a patient representative for the British Association of Dermatologists Biologics and Immunomodulators Register (BADBIR) and she has supported the work of the Global Atlas for Atopic Dermatitis.

Why this research is important:

The project will fill an important gap in psychological support resources and aims to provide parents of children with EB a set of therapeutic techniques to manage the stresses associated with providing care for a child with a chronic and life-long skin condition. Further, the project will shed light on whether supporting parents could have a beneficial secondary outcome for children with skin conditions themselves.

Prof Thompson

Researcher’s abstract:

Grant title: Developing a self-help toolkit for supporting wellbeing in parents of children with Epidermolysis Bullosa (EB).

Epidermolysis Bullosa (EB) is a group of blistering skin conditions, characterised by pain and itching. Caring for a child with EB can be associated with stress, linked with the condition itself, and application of treatments. Guidelines produced by DEBRA International highlight the need for parental support, and this has been reiterated during our contact with clinicians and parent members of DEBRA UK. However, there is a lack of accessible psychological support available.

The aim of this research is to produce and test a self-help toolkit to reduce parental stress.

The project will take a ‘person-based approach’ of involving expert stakeholders and will follow Medical Research Council guidelines. The design of the toolkit will be based on needs identified by consulting with parents of children with EB and will draw upon interventions recommended within the literature and by expert clinicians. The intervention is likely to include mindfulness and self-compassion-based techniques, which have already shown some success with parents of children with other skin conditions. As parental stress is known to be associated with child quality of life, we predict there is potential for indirect child benefit, and we will test this in an online survey.

Focus groups with expert clinicians and parents will inform the development of the toolkit, and the intervention will be tested by comparing the results of two groups of parents (those who have tried the toolkit, and those who have not) to determine its ability to reduce parental stress, distress, and increase child quality of life.
This project will provide a lasting resource that DEBRA UK can host on their website.

The applicants have experience of working with a range of health and skin-related charities and creating resources that have been utilised beyond study completion (e.g., the Pulmonary Hypertension Association UK, https://www.phauk.org/support/support-for-anxiety/overcoming-worry-anxiety-a-self-help-programme-for-people-with-ph/.

We would work in partnership with DEBRA UK, taking a person-based approach, to create an evidence-based parental ‘toolkit’ to reduce parental stress and distress. The proposed project will:
(1) examine the association between mindfulness and parental stress (and other variables) which will enable a greater understanding as to whether mindfulness based parental interventions have the potential to reduce parental stress;
(2) gain detailed information on the needs of families living with EB, so as to add to the literature and clarify the issues that the toolkit would need to address; and
(3) create and test a novel self-help parental toolkit that will be in the form of a downloadable interactive pdf.
Psychological therapeutic approaches incorporating mindfulness have been applied with other conditions, and have been previously used to reduce parental stress. However, this research will be the first project, to investigate the use of a mindfulness-based toolkit with parents of children affected by EB. As a result of the lack of support for families living with EB, this project is important in expanding the accessible support that might be provided by DEBRA. Reducing levels of stress in parents is likely to have beneficial effects for child quality of life, and we will test this.

The project has since its conception sought to have a high level of PPI. The lead applicant has met on several occasions with members of DEBRA UK and is supervising a postgraduate project examining parental and sibling experience of living with EB. Feedback gained from these meetings has informed the choice of topic and the methods that will be used within the proposed research. To guide the ongoing management of this project, a formal PPI steering group will be established. The research team will assemble a panel of experts by experience (both healthcare professionals and families) to consult on the choice of methods to be used and on the final research proposal prior to ethical approval being sought. In addition, the methodological framework that will be used will take a recognised approach to intervention development that places emphasis on having a high level of end user involvement (known as the ‘person based approach’). The toolkit that will be built will be informed by data and feedback obtained from focus groups with experts by experience. Involving healthcare professionals will allow the researchers to gather in-depth data surrounding the impact and experience of providing care to a child with EB, that will enable identification of parental needs, and views on what should be included in the toolkit. Whilst including parents in the design stage of the project will ensure the final intervention has relevance to the real lives of families affected by EB.

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Researcher’s progress update: