Date: 04/06/2022

About the project

Skin disease is one of the world’s leading causes of disease burden. It has similar costs and prevalence rates compared to heart disease and diabetes. Children, living with rare and chronic skin diseases, are increasingly being discharged from hospital to be cared for at home by ‘informal’ caregivers.

Informal caregivers are unpaid caregivers and include parents, siblings and grandparents.  Caring for children affected with rare skin disease requires physical, intellectual and emotional stamina.

Ichthyosis is one such rare, genetic, incurable skin disease. Ichthyosis has been shown to have one of the most harmful impacts on a patient’s quality of life.  International policy and guidance recommend that informal caregivers of children affected with skin disease should have access to regular and appropriate assessment of their needs.

However, research highlights that there is a lack of available and useful needs assessment tools.

This three-year research project aims to develop an accessible and solution-focused model of assessment which would allow ichthyosis caregivers to self-report their needs and choose their own solutions. This may improve caregiver self-esteem, life satisfaction and overall ability to cope.

In the absence of useful assessment tools, healthcare professionals are unable to identify, triage or support the unmet needs of ichthyosis caregivers.  To inform this research at each stage, international collaborative partnerships were established with caregivers, affected adults, academics, healthcare clinicians, relevant voluntary caregiving organisations and health policy advisors.

The research uses a mixed-methods approach and involves three stages:

• Stage 1 - Development of items to be included in the draft NAT-IC using a hybrid of literature and caregiver feedback from international qualitative study.
• Stage 2 - Refinement of items for inclusion in the NAT-IC using an international e-Delphi study approach using both an expert and caregiver group.
• Stage 3 - Testing of the NAT-IC for validity and reliability with international ichthyosis caregivers.

What stage is the research at currently?

Stage 1 and Stage 2 have now been completed. We sincerely thank all those caregivers and experts who contributed to this project to date.

We hope to be able to advertise Stage 3 of the project in May 2021 via two online ichthyosis support groups, the Ichthyosis Support Group (ISG) and the Foundation for Ichthyosis and Related Skin Types (FIRST).   We would appreciate if you would share this webpage to help raise awareness of this research project among caregivers, support groups, researchers and healthcare professionals.

If you are an informal caregiver (parent, grandparent, sibling) for a child (any age) affected with any type of ichthyosis, it is our hope that you will consider taking part in this research study (June-August 2021). For anyone looking for more information on this project, please contact Carleen Walsh at:

• Email - walsh-c33@ulster.ac.uk
• Twitter - @CARLEENWALGAL

About the researcher

Carleen’s professional background includes working within the pharmaceutical sector as a Biomedical scientist and more recently teaching both at second and third level for the past fifteen years.

Carleen attributes her motivation for carrying out this research to her personal experience of caregiving for her own child affected by ichthyosis. She discovered that although caregiving for a child with a rare and chronic skin disease was extremely rewarding and fulfilling, it had the potential to become overwhelming without timely identification of unmet needs.

The Bamford Centre provided Carleen with an opportunity to focus her research on developing the first supportive care needs assessment e-tool for ichthyosis caregivers.  The aim of this tool is to allow caregivers to express their needs, which will hopefully help inform the delivery of key supports and services.

Carleen remains active in advocating for caregivers of children affected with skin disease and her research has received international attention and support from dermatological support groups, dermatology consultants, health policy advisors and caregivers.

Carleen has presented her research at international caregiver, dermatological, psychiatry and global pharmaceutical leadership conferences.  Additional funding for her research has been secured in recognition of her outstanding academic contribution to date during this project (Broadening Horizons Bursary 2019).

Investigators

• Professor Gerard Leavey (Principal Investigator, The Bamford Centre)
• Dr. Marian Mc Laughlin (Senior Psychology Lecturer, Ulster University)
• Carleen Walsh (PhD Researcher, The Bamford Centre)