ELF shares the views of parents at conference on children’s interstitial lung disease

ELF was invited to speak on the ‘Unmet needs in chILD: the parent/patient perspective’ at the COST Action ENTeR-chILD Conference in Prague, Czech Republic at the beginning of November.

Children’s interstitial lung disease (chILD) is a large group of rare lung conditions found in infants, children and adolescents and at the moment there is relatively little research on them. This conference, funded by COST, was an important opportunity for clinicians to meet and share their ideas and research plans, and to make contacts for future projects. We were delighted to be able to represent the views of parents of children with interstitial lung disease at this inaugural conference in the field.

ELF presented the results of an online international parent survey carried out between August and October 2017. The survey was developed with members of our chILD parent advisory group, which is made up of 10 people from Australia, Denmark, Spain, Germany, Ireland, Israel, UK and USA. It aimed to find out which issues parents think are most important, to inform the work of clinicians in the field. 

We received 153 survey responses from people in 13 countries. Three key findings were that parents need:

  1. More information about the progression of the condition and what the future holds. “We as parents feel helpless because we have no information about the expected illness of our child – there is a lack of information all along the line.”
  2. Greater consistency across the medical profession in diagnosis, treatment and care management. “Care should be automatically multidisciplinary and include social work and/or psychology as standard during diagnosis, at the very least.”
  3. More support in practical day-to-day living and to help deal with anxiety and uncertainty. “Coming home with so much equipment was really scary and intimidating. I found it very hard to sleep at night with worry.”

We are currently working with the chILD parent advisory group and clinicians in the field to develop an information website for parents of children with interstitial lung disease. The website is due to be launched in spring 2018.

Read more about the ENTeR-chILD conference programme and access the conference abstracts.  

For further information please get in touch with Jeanette Boyd.

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