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Associations between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study
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Mackay, Jessica; Nixon, Gillian M.; Lafferty, Antony R.; Ambler, Geoff; Kapur, Nitin; Bergman, Philip B.; Schofield, Cara; Seton, Chris; Tai, Andrew; Tham, Elaine; Vora, Komal; Crock, Patricia; Verge, Charles; Musthaffa, Yassmin; Blecher, Greg; Caudri, Daan; Leonard, Helen; Jacoby, Peter; Wilson, Andrew; Choong, Catherine S.; Downs, Jenny – Journal of Autism and Developmental Disorders, 2022
Prader-Willi syndrome (PWS) is a rare genetic disorder characterised by neurodevelopmental delays, hyperphagia, difficulties with social communication and challenging behaviours. Individuals require intensive supervision from caregivers which may negatively affect caregiver quality of life. This study used data collected in the Australasian PWS…
Descriptors: Caregivers, Genetic Disorders, Intellectual Disability, Developmental Disabilities
Use of Equipment and Respite Services and Caregiver Health among Australian Families Living with Rett Syndrome
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Urbanowicz, Anna; Downs, Jenny; Bebbington, Ami; Jacoby, Peter; Girdler, Sonya; Leonard, Helen – Research in Autism Spectrum Disorders, 2011
This study assessed factors that could influence equipment and respite services use among Australian families caring for a girl/woman with Rett syndrome and examined relationships between use of these resources and the health of female caregivers. Data was sourced from questionnaires completed by families (n=170) contributing to the Australian…
Descriptors: Mothers, Physical Health, Caregivers, Respite Care
Physical and Mental Health of Mothers Caring for a Child with Rett Syndrome
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Laurvick, Crystal L.; Msall, Michael E.; Silburn, Sven; Bower, Carol; de Klerk, Nicholas; Leonard, Helen – Journal of the American Academy of Child & Adolescent Psychiatry, 2007
Objectives: Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome. Methods: We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental component summary scores as the outcome measures of interest. Mothers (n = 135) of children with Rett…
Descriptors: Physical Health, Family Needs, Child Behavior, Mothers