This study is now closed.

A fellow ichthyosis Mum has been funded to undertake the creation of the first needs assessment tool for ichthyosis caregivers. Carleen is a fellow ichthyosis Mum/caregiver and a PhD researcher with Ulster University.

For this study, a caregiver is anyone who provides daily care over what is ‘typical’ for a child. She would prefer that the development of this assessment tool is informed by experts i.e. YOU the caregivers to children with ichthyosis.

This cannot happen without your willingness to informally chat with her, either in a group or individual setting.

It is hoped that through international caregiver collaboration that an assessment tool will be developed, which may be used in the future by healthcare teams to support families during their continuum of care.  Healthcare teams often state that they cannot assess caregiver needs due to the lack of appropriate assessment tools. To date, no such tool has been validated to assess caregiver needs.  

There are some key questions we need to ask before you continue – can you answer yes to all the following questions?

  • Are you or were you responsible for managing the daily well-being of the child diagnosed with ichthyosis?
  • Are you aged 18 years of age or above?
  • Are you a member of the Ichthyosis Support Group or the Foundation for Ichthyosis and Related Skin Types?

Research shows that males are unrepresented in research relating to caregiving, so this study would particularly like to encourage you to participate.   

  • Are you fluent in English?
  • You do not suffer from a cognitive impairment, an intellectual disability or mental illness.  In order to prevent any potential distress to vulnerable participants we ask you not to participate if you have a cognitive impairment, an intellectual disability or mental illness.

To read the full Information Sheet please click here.

If you have any questions, please contact the researcher at walsh-c33@ulster.ac.uk

If you think you would like to take part in this research, please click here to complete a short survey and to give your consent.

Thank you!

Carleen Walsh, PhD Researcher (Bamford Centre of Mental Health and Wellbeing, Ulster University, Cromore Road, Coleraine BT52 1SA, United Kingdom