Survey for Service Providers supporting Adults with Fragile X syndrome | invitation to participate

May 1st, 2024

Fragile X Care | Adults & Ageing is the first Australian study on the support needs, health & wellbeing of adults with Fragile X syndrome as they age.  We’re undertaking this study in collaboration with Centre for Disability Studies, a not-for-profit research affiliate of the University of Sydney.  The study is supported by a philanthropic grant.

Our shared goal is ambitious – to enhance quality of life for adults with Fragile X syndrome as they age.

First of all, we need to gather information that will help us:
1.    Build a picture of the current and future needs of adults with Fragile X syndrome in Australia
2.    Understand any gaps in supports or services
3.    Create free online education resources for disability, aged care & health teams about Fragile X syndrome
4.   Advocate for policy and practice developments across relevant support and care settings.

Invitation to participate in surveys which are open until 17 June 2024.
(1)  Survey for for Disability and Aged Care Support Team members and Health professionals
(2)  Survey for Family Members/Carers 


SURVEY FOR DISABILITY SUPPORT AND AGED CARE TEAMS AND HEALTH PROFESSIONALS
PEOPLE WHOSE WORK INVOLVES PROVIDING DISABILITY, AGED CARE OR HEALTH SUPPORT TO ADULTS WITH FRAGILE X SYNDROME ARE INVITED TO PARTICIPATE.

This includes disability support workers, therapists, aged care staff, health professionals – who might be employed by organisations, or work independently.

This Survey will ask questions about:

  1. SUPPORTS you provide to adults with Fragile X syndrome
  2. HEALTH AND SOCIAL SERVICES accessed by adults with Fragile X syndrome
  3. FACTORS THAT MAKE A DIFFERENCE to the supports, and
  4. YOUR UNDERSTANDING OF FRAGILE X SYNDROME and interest in learning more

Please read the Participant Information Sheet for more information about the survey, and how the results will be used:
FX Survey_Participant Information Statement_Workforce

TO COMPLETE THIS SURVEY
 
=> ONLINE  – CLICK HERE
=> PAPER VERSION –  contact us and we’ll post the Survey to you

CONTACT US:  by Email support@fragilex.org.au  or call 1300 394 636


SURVEY FOR FAMILY MEMBERS
Parents or other members of a family of an adult (aged 18 or over) who has Fragile X syndrome are invited to participate.

This Survey will ask questions about:

  1. GENERAL HEALTH AND WELLBEING of people with Fragile X syndrome as they age.
  2. EFFECTIVENESS OF EXISTING SUPPORTS for people with Fragile X syndrome as they age.
  3. FUTURE PLANNING concerns of families and carers who provide support for people with Fragile X syndrome as they age, and
  4. ANY GAPS IN SUPPORTS OR SERVICES which may impede best outcomes in care.

Please read the Participant Information Sheet for more information about the survey, and how the results will be used: FX Survey_Participant Information Statement_Families

TO COMPLETE THE SURVEY  FOR FAMILY MEMBERS
=> ONLINE    |   CLICK HERE
=>  PAPER VERSION                        |   Contact us and we’ll post the Survey to you
=>  BY PHONE CALL                          |   Contact us to arrange a call with our Family Support Counsellor  or a member of the Research Team at Centre for Disability Studies

CONTACT US:  by EMAIL  support@fragilex.org.au  OR by PHONE   1300 394 636


We’re so pleased to be undertaking this important study with Centre for Disability Studies (CDS), a team with tremendous experience in the area of intellectual disability and ageing.

The work has been made possible by a philanthropic grant from the HENROTH Group, for which Fragile X Association of Australia is deeply thankful.

#fragilexcare

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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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