Longitudinal effects of caregiving on parental well-being: the example of Rett syndrome, a severe neurological disorder

European Child & Adolescent Psychiatry
Yuka MoriHelen Leonard

Abstract

Little longitudinal research has examined parental well-being in those with a child with specific genetic developmental disorder although the associated severe neurological impairments and multiple physical comorbidities likely place substantial burden of caregiving on the parent. We aimed to examine longitudinally the well-being of parents of individuals included in the Australian Rett Syndrome Database over the period from 2002 to 2011 using the Short Form 12 Health Survey. Residential remoteness, the child being a teenager at baseline, having frequent sleep disturbances or behavioural problems, and the type of MECP2 gene mutation were each associated with later poorer parental physical well-being scores. Being a single parent or on a low income was also associated with later poorer physical well-being, while the child having enteral feeding was associated with later poorer emotional well-being. Both the physical and emotional well-being of the parent improved if the child was living in out-of-home care. Our findings suggest that some opportunities do exist for clinicians to help optimise parental well-being. Being alert to the possibility and need for management of a child's sleep or emotional disturbance is important as is ...Continue Reading

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Citations

Aug 28, 2020·Journal of Medical Genetics·Jonathan MendozaHelen Leonard
Feb 4, 2021·Ciência & saúde coletiva·Tiago Jessé Souza de Lima, Luana Elayne Cunha de Souza
Mar 28, 2021·European Child & Adolescent Psychiatry·Franziska DegenhardtJohannes Hebebrand
Sep 29, 2020·BMJ Paediatrics Open·Cary FuTimothy Benke
Apr 20, 2021·Journal of Intellectual Disabilities : JOID·Jacqueline Fitzgerald, Louise Gallagher

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