Journal article
Functioning, participation, and quality of life in children with intellectual disability: an observational study
K Williams, P Jacoby, A Whitehouse, R Kim, A Epstein, N Murphy, S Reid, H Leonard, D Reddihough, J Downs
Developmental Medicine and Child Neurology | WILEY | Published : 2021
DOI: 10.1111/dmcn.14657
Abstract
Aims: To investigate associations between functioning, community participation, and quality of life (QoL) and identify whether participation mediates the effects of functioning on QoL. Method: The caregivers of 435 children (211 females, 224 males; mean age 12y; SD 3y 11mo; age range 5–18y) with intellectual disability and autism spectrum disorder, cerebral palsy, Down syndrome, or Rett syndrome reported on their child’s functioning (dependence for managing personal needs, mobility, communication, eye contact when speaking), frequency of participation, and QoL. Linear regression and mediation analyses were used to evaluate the relationships between child functioning, participation, and QoL. ..
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Awarded by National Institutes of Health
Funding Acknowledgements
We extend our thanks to the families for their participation in this study. This study is currently funded by the National Health and Medical Research Council (no. 1103745). We acknowledge the support of Dr Emma Glasson, who supported the recruitment of families from the Western Australia Autism Registry. The Victorian Cerebral Palsy Register receives funding from the Victorian Department of Health and Human Services and from the Victorian Government's Operational Infrastructure Support Program for support of register staff. The authors acknowledge the support of Disability Services Commission WA in establishing the Down syndrome database, and community organizations Developmental Disability WA and the Down Syndrome Association of Western Australia for their support. We thank the Australian Paediatric Surveillance Unit and the Rett Syndrome Association of Australia for their ongoing support in case ascertainment for the Australian Rett Syndrome Database. The Australian Rett Syndrome Study was previously supported by the National Institutes of Health grant no. 5R01HD043100-05 and National Health and Medical Research Council project grant nos. 303189 and 1004384. AW and HL are each supported by a Senior Research Fellowship from the National Health and Medical Research Council (nos. 1077966 and 1117105 respectively). Dinah Reddihough is funded by a University of Melbourne Award. The funders of this research have had no roles in the study design, data collection, data analysis, manuscript preparation, and/or decision to publish.