Survey for Families of 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 goal is 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 open until 17 June 2024 for
(1) Family Members/Carers 
(2) Disability and Aged Care Support Team Members and Health Professionals 


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.

The Survey will ask questions about:

  1. GENERAL HEALTH AND WELLBEING of the adult with Fragile X syndrome.
  2. EFFECTIVENESS OF EXISTING SUPPORTS for the adult with Fragile X syndrome as they age.
  3. FUTURE PLANNING concerns of families and carers who provide support for people with Fragile X syndrome, 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

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


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.

The 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:  EMAIL  support@fragilex.org.au  OR 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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