Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods

Author:

Epstein Amy1,Leonard Helen1,Davis Elise2,Williams Katrina3,Reddihough Dinah3,Murphy Nada1,Whitehouse Andrew1,Downs Jenny14

Affiliation:

1. Telethon Kids Institute, The University of Western Australia; Perth Western Australia Australia

2. The Jack Brockhoff Child Health and Wellbeing Program; Melbourne School of Population and Global Health; The University of Melbourne; Melbourne Victoria Australia

3. Department of Developmental Medicine; Royal Children's Hospital; Melbourne Victoria Australia

4. School of Physiotherapy and Exercise Science; Curtin University; Perth Western Australia Australia

Funder

National Institute of Health

National Health and Medical Research Council project

University of Western Australia

Department of Health Merit Award

Victorian Health Promotion Public Health Fellowship

National Health and Medical Research Council

Publisher

Wiley

Subject

Genetics(clinical),Genetics

Reference43 articles.

1. Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG-binding protein 2;Amir;Nat Genet,1999

2. Gastrointestinal dysmotility in Rett syndrome;Baikie;J Pediatr Gastroenterol Nutr,2014

3. Using a large international sample to investigate epilepsy in Rett syndrome;Bao;Dev Med Child Neurol,2013

4. Development of children's concepts of illness;Bibace;Pediatrics,1980

5. The impacts of nature experience on human cognitive function and mental health;Bratman;Ann N Y Acad Sci,2012

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