Report: Exploring experiences with online peer support programs for the Fragile X community

March 10th, 2023

Access to information about Fragile X, and access to peer support networks and other families are important ways of increasing understanding of Fragile X-associated conditions, to improve quality of life and ensure that the needs of individuals and family members are met.

During the Covid-19 restrictions from March 2020 we had to quickly move away from an in-person approach to our educational and community events. So we focussed on the potential for ONLINE peer support/connections. We initiated group zoom meetings facilitated by our Family Support Counsellor and put together a Webinar/Q&A series featuring specialists in a range of areas related to Fragile X syndrome and the Fragile X premutation.

To help Fragile X Association of Australia better understand whether the online peer support programs we offer are helpful and effective, the Melbourne Disability Institute  funded a study to explore participants’ experiences.  The qualitative study involved 1-hour long interviews, which were undertaken on a voluntary basis by some of our members. The study was exploring their experience with:

1. FX educational webinar series
2.Zoom group peer support sessions
3. Fragile X Australia Facebook discussion group

The report of the findings was published on 9 March 2023 and is available on the Melbourne University website

In summary the findings included:

“Uncertainty and value of shared experiences
The opportunity to participate in online support programs was highly valued. The support and information that participants received helped address feelings of uncertainty about
the future – for themselves and/or for their child/relative with a Fragile X disorder. In  addition, the ability to share experiences with others in similar situations was invaluable.”

Support to navigate healthcare
Participants found it difficult to access care. Participating in online support programs enhanced their confidence and knowledge, particularly regarding how to navigate
healthcare services. Participants used this knowledge to identify and connect with clinicians who have expertise in managing Fragile X disorders.

Advantages being online, but still a place for in-person events
Overall, participants had very positive experiences with the online support programs, valuing their convenience and accessibility. Some felt that participating online was particularly beneficial when they felt anxious or reluctant to contribute (eg they could turn their camera off or leave the session if needed). However, collectively, there was still a desire for in-person programs as many felt it was difficult to create informal personal connections or interpret important non-verbal cues when online.”

The findings from the study will help inform the future direction of the online peer support program offered to our members and others.

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Your generous donation will help FXAA ensure people living with Fragile X are connected, included, understood and empowered. Specifically, your donation (no matter how big or small) will help us maintain and deliver support and connections to the Fragile X community: 1. Counselling support 2. FXAA Helpline - available 5 days per week 3. Webinar program 4. Peer connection and referrals 5. Advocacy work – for example, our Fragile X Care | Adults & Ageing study that we’re undertaking collaboratively with the Centre for Disability Studies is the first Australian study on the support needs, health & wellbeing of adults with Fragile X Syndrome as they age. All support is sincerely appreciated and helps us make a difference.

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