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SOFT UK Research

We know that families can often feel isolated and overwhelmed, due to the rareness of Trisomy 13 and 18, their geographically scattered nature, and a lack of knowledge and positive attitudes amongst many medical staff regarding Trisomy conditions.
 
This year SOFT UK commissioned PHD Student, Helen Foster-Collins, to undertake a piece of research to try to better understand what kind of support is required for families who are affected by Trisomy 13 or 18 from clinicians, SOFT UK and other support services.
 
The objective of identifying the support needs of families, in a changing medical landscape, will help to:
 

  • Give SOFT families a voice and help them to share their uniquely expert knowledge with medical clinicians and other families
  • Assist SOFT UK to focus their efforts and funding in the right way, and support grant funding applications in the future
  • Increase research knowledge in what is an underfunded and under researched area 

 

The project was carried out using qualitative methods and SOFT families were consulted about:
 

  • Support received from clinicians, SOFT and any other support services
  • Any gaps which exist in available support
  • What impact they feel these support services would have on their lives

 
Helen's report is now available to read in full and it's findings will be discussed by the Board of Trustees at their next Board Meeting in September.


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