HGSA are reaching out to our members regarding an Australia-wide study which is led by Professor Iva Strnadová to examine the perceptions of and experiences with health, health care and genetics in education as reported by parents/ carers of children/ young people with intellectual disability. 

Aims and anticipated outcomes

  • To examine parents’/carers’ perceptions of and experiences with education on health and genetic health literacy education for children/ young people with intellectual disabilities.  
  • To identify barriers and enablers to effective and accessible school-based education on health and genetic health literacy education for children/ young people with intellectual disabilities.  
  • To create resources that will help teachers/ parents to teach students about health care, choices, and genetics, in a way that is inclusive, person-centered and respectful. 
  • It is important for children/ young people with intellectual disability to have the knowledge and the skills to make the health care choices they want. 
  • This has not been previously addressed in the literature, as parents’/carers’ of people with intellectual disability are rarely directly approached in health care research, which leaves their voice not heard.

 

Request for assistance with recruitments 

Health education is the first step in becoming an active participant in one’s health care, and making informed health choices. Recent research shows that people with intellectual disability have the desire and the capability to learn more about their own genetics. 

You can assist in recruiting participants who are parents/carers of children / young people with intellectual disability who currently attend an Australian school, or who finished their schooling in an Australian school within the last 5 years, by sharing our social media advertisements below.

 

Approved by the Human Research Ethics at the University of New South Wales

We have gained approval to conduct and lead this sub study research. Attached are the following documents:

You can read more about GeneEQUAL and our work on the website:www.geneequal.com