Online survey for caregivers of children affected with ichthyosis

Carleen Walsh is a PhD researcher under the supervision of Professor Gerard Leavey and Dr. Marian McLaughlin. She is also a fellow ichthyosis caregiver, inviting caregivers of children affected with ichthyosis to take part in an online survey. You will be asked to rate how important each of the statements are and how helpful each of the suggested supports are.  These statements were identified by ichthyosis caregivers internationally as part of an earlier study.  Caregivers who previously took part in the focus groups or interviews are encouraged to take part in this online survey. 

We would like to hear from you if you can say yes to all the following questions: 

• Are you responsible for caring for a child diagnosed with ichthyosis? (care which is above and beyond what is needed for an unaffected child)
• Are you a family caregiver? (a parent, sibling, grandparent, foster parent, guardian, adoptive parent who currently provides daily care for a child of any age, diagnosed with any form of ichthyosis)    
• Are you 18 years of age or older?
• Are you a member (female or male) of ISG or FIRST?  
• Would you like to be contribute towards the development of the first needs assessment e-tool for ichthyosis caregivers? 
• Do you have access to a laptop, IPad or phone and 15-20 minutes available to complete the survey? 

As literature around caregiving highlights that males are unrepresented in such research, we are asking males to consider contributing to this online survey. 

To learn more about what is involved in this study and/or provide consent, please right-click on the electronic links below to open each hyperlink. Caregivers who provide consent will be individually emailed a copy of the online survey.  

Participant Information Sheet

Consent Form - Online Survey 

If you need to contact the research team for further information:  

Carleen Walsh	Professor Gerard Leavey	Dr. Marian McLaughlin
PhD Researcher, Bamford Centre for Mental Health and Wellbeing, School of Psychology, Ulster University Coleraine Campus, Cromore Road,  BT52 1SA, United Kingdom  [email protected]	Bamford Centre for Mental Health and Wellbeing, School of Psychology, Ulster University Coleraine Campus, Cromore Road,  BT52 1SA, United Kingdom  [email protected]	School of Psychology, Ulster University Coleraine Campus, Cromore Road,  BT52 1SA, United Kingdom  [email protected]