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    Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome

    80180.pdf (544.1Kb)
    Access Status
    Open access
    Authors
    Strugnell, A.
    Leonard, H.
    Epstein, A.
    Downs, Jennepher
    Date
    2019
    Type
    Journal Article
    
    Metadata
    Show full item record
    Citation
    Strugnell, A. and Leonard, H. and Epstein, A. and Downs, J. 2019. Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome. Disability and Rehabilitation.
    Source Title
    Disability and Rehabilitation
    DOI
    10.1080/09638288.2019.1610801
    ISSN
    0963-8288
    Faculty
    Faculty of Health Sciences
    School
    School of Physiotherapy and Exercise Science
    URI
    http://hdl.handle.net/20.500.11937/80098
    Collection
    • Curtin Research Publications
    Abstract

    Purpose: Rett syndrome (RTT) is a rare neurodevelopmental disorder mainly affecting females and is caused by a mutation in the MECP2 gene. Recent research identified the domains of quality of life (QOL) important for children with RTT but there has been no investigation of domains important for adults. This qualitative study explored QOL in adults with RTT and compared domains with those previously identified for children. Methods: The sample comprised parents and/or primary caregivers of 20 adults, aged 18–38 years, who were registered with the Australian Rett Syndrome Database. Semi-structured telephone interviews were conducted to investigate aspects of life that were observed to be satisfying or challenging. Data were analyzed using directed content analysis, based on existing QOL domains for children with RTT that related to health and wellbeing, daily activities, and community immersion and services. Results: Each of the domains identified for children with RTT was represented in the adult dataset, with no new domains emerging. Conclusion: This is the first study to identify QOL domains important for adults with RTT. Health and therapy needs are ongoing during adulthood but services may be limited. Findings will guide choice of an appropriate QOL measure for this group.IMPLICATIONS FOR REHABILITATION Knowing the important domains of quality of life enables clinicians and service providers to systematically review and address key management issues. Despite a high level of dependency and sometimes poor health, parent caregivers perceive potential for strong quality of life in adulthood. Services that maintain functional skills and health throughout the lifespan are valued for their support of quality of life in adults with Rett syndrome.

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