FINAL RESEARCH STAGE IN THE DEVELOPMENT OF A CAREGIVER E-TOOL

My name is Carleen Walsh and I wish to invite caregivers of children affected by ichthyosis to test our new needs assessment e-tool to make sure it is reliable and valid.

 


To improve the success of this study, it is hoped that over 100 caregivers will take part.  This study asks caregivers (parents, grandparents etc) to complete a newly developed assessment tool.  The researchers believe in the construct of ‘prevention is better than cure’ and developed this tool in the hope that it will promote caregiver outcomes by helping to (i) identify caregiver needs and (ii) provide timely supports. One of the researchers was motivated to carry out this research as a fellow caregiver to a little girl with Harlequin Ichthyosis.  She believes that increased awareness and resources can be achieved for our ichthyosis community by improving the recognition of ichthyosis at health policy level.  However, for that to happen, , YOUR support is needed.

Some reasons why you might consider taking part in this research project:

  1. Although the Dermatology Life Quality Index (DLQI) scores place ichthyoses among the skin disorders with the most harmful impact on a patient’s quality of life, there is little literature documenting the impact of ichthyosis on either the patient and/or caregiver.  This is in sharp contrast to many other skin diseases.
  2. Although the nature of ichthyosis means that its management is symptomatic, episodic, unpredictable and often time-consuming, parents often assume nursing roles with little prior training or appropriate supports.
  3. Research emphasises that ichthyosis caregivers require similar systems of monitoring and support as other comparable chronic conditions, such as diabetes and cardiovascular disease. 
  4. Research highlights that delayed (i) identification of caregiver needs and (ii) provision of timely supports seriously compromises the long-term wellbeing of both caregivers and affected children.
  5. With an ever-increasing demand on limited and valuable healthcare resources, there is a need to develop a solution-focused assessment where caregivers can self-report needs and healthcare staff may identify any unmet supportive care needs.

Research Notice: Validation of a needs assessment tool for caregivers of children with ichthyosis

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

  • Are you a family caregiver? For this study a family caregiver can be 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.  We are particularly appealing to males to consider taking part. 
  • Are you responsible for caring for a child diagnosed with ichthyosis. This care is any such care above and beyond what is considered typical for a child unaffected by ichthyosis.
  • Are you aged between 18 years of age or older?
  • Are you fluent in English?
  • You have not taken part in any stage of the research project to date
  • You have access to a laptop, IPad or mobile

If you think you would like to learn more about what is involved in this part of the study, please use the link below.

Participant Information Sheet

If you would like to take part in the study, please use the link below to provide consent.

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 

walsh-c33@ulster.ac.uk 

Bamford Centre for Mental Health and Wellbeing, School of Psychology, Ulster University Coleraine Campus, Cromore Road, 

BT52 1SA, United Kingdom 

g.leavey@ulster.ac.uk 

School of Psychology, Ulster University Coleraine Campus, Cromore Road, 

BT52 1SA, United Kingdom 

m.mclaughlin@ulster.ac.uk  

 

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