Supporting the Fragile X Community Virtually: What works?

Fragile X syndrome is a genetic disorder caused by a change to a gene on the X chromosome. The syndrome is the most common inherited cause of intellectual disability and causes a wide range of physical, developmental, behavioural, and emotional difficulties in those who are affected. Carriers for Fragile X (known as ‘Fragile X premutation carriers’) can also be affected by Fragile-X associated conditions, which may include a range of physical, psychosocial and emotional symptoms.

Information about Fragile X disorders can be complex, requiring an understanding of genetics and various associated health issues. As such, education for people and families affected by Fragile X disorders is important and can help increase knowledge in managing the disorders, improve quality of life, and ensure the needs of all family members are met.

Access to peer support networks and contact with other families affected by Fragile X disorders is also important. Families of those with Fragile X disorders can face a lifetime of caretaking challenges, and peer support can help facilitate the sharing of resources and ideas, and provide emotional support. Although education and peer support are important for the Fragile X community, many people do not have easy access to such networks. Since COVID-19, the Fragile X Association of Australia has introduced a number of online peer support group programs for its members and the wider Australian Fragile X community to complement an existing online discussion group.

To better understand the experiences of community members who participated in these programs, and whether they are of value or not, we undertook a qualitative research project. The aim of this study was to explore experiences of people with Fragile X syndrome, Fragile X premutation carriers, and their families/carers with Fragile X-specific online peer support programs.

Read the report.
Access the visual summary. 

Research Team:

Dr Belinda Lawford, Centre for Health, Exercise & Sports Medicine at the University of Melbourne

Community Partner:

Fragile X Association of Australia  (FXAA)