2009 Fragile X Family Survey Australia / New Zealand reports
The Fragile X Association of Australia and NZ Fragile X Trust (now Fragile X New Zealand) conducted the first national survey of Fragile X families in Australia and New Zealand in 2009. It was carried out in collaboration with Dr Don Bailey and Dr Melissa Raspa from the United States and replicated their US survey of 2006.
Survey recruitment in Australia and New Zealand posed a major challenge as there were no national databases of families affected by FXS and confidentiality guidelines precluded any individual or group from sharing names and contact information with the project team without parent permission. Therefore, various strategies were used to inform people about the survey and encourage them to enrol and participate.
The questionnaire was in two parts. The first covered ‘family items’ concerning the support, education and social experiences in caring for a FX member of the family. The second part dealt with ‘child items’ covering learning experiences (social and educational) of the FX child. For adults it covered topics about employment, training, living and caring arrangements. There was also an opinions section in the questionnaire.
A total of 113 households representing 289 children responded to the survey. Sixteen households were from New Zealand and 97 from Australia. Of the Australian respondents, 43 were from NSW, 28 from Victoria and 25 from other states/territories. Some of the major findings on education, employment, living arrangements, social and financial impacts on households and respondents were reported in earlier FXAA Newsletters.
Three separate reports are attached below as one document.
(1) Major Findings from a 2009 Parent/Carers’ Survey provides a summary of major findings from the survey. This report draws particular attention to what families experienced as a general lack of awareness among professionals about Fragile X, and the challenges respondents faced with issues such as medical diagnosis, education and employment.
(2) Health Impact and Other Consequences focuses specifically on health impact and consequences of FX-associated Disorders. Findings are reported here on the age of diagnosis and co-occurring conditions such as FXTAS and FKPOI and attitudes to screening, as well as raising implications for public policy.
(3) Understanding the Nature and Consequences presents a shorter, summarised version, of the material covered in Health Impact and Other Consequences.