Journal article
‘It's especially good just to know that you're not the only one’: a qualitative study exploring experiences with online peer support programmes for the Fragile X community
T Haber, L Davies, RS Hinman, KL Bennell, W Bruce, L Jewell, A Borda, BJ Lawford
Journal of Intellectual Disability Research | WILEY | Published : 2025
DOI: 10.1111/jir.13188
Abstract
Background: Accessing peer support can be difficult for people with, or carers of people with, inherited intellectual disabilities. One way to improve access is to provide services online, yet few studies have explored people's experiences with online peer support programmes. We aimed to explore experiences with such programmes for communities affected by fragile X-associated conditions. Methods: Qualitative study involving individual semi-structured interviews with 16 people with, or carers of people with, a fragile X-associated condition (n = 4 adult premutation carriers; n = 12 parents/carers of children/adults), who participated in at least one of three online peer support programmes: ed..
View full abstractGrants
Awarded by National Health and Medical Research Council
Funding Acknowledgements
This study is funded by a Melbourne Disability Institute grant. R. S. H. is supported by a National Health & Medical Research Council Fellowship(#1154217) and KLB by a NHMRC Investigator Fellowship (#1174431).