Caring for a child with severe intellectual disability in China: the example of Rett syndrome

  • Lim F
  • Downs J
  • Li J
 et al. 
  • 2

    Readers

    Mendeley users who have this article in their library.
  • N/A

    Citations

    Citations of this article.

Abstract

PURPOSE: Rett syndrome is one of several genetic disorders known to cause severe intellectual and physical disability, mostly in girls. Girls affected by Rett syndrome appear to develop normally in the first 6 months of life, after which the usual clinical presentation comprises regression of communication and hand skills, the appearance of hand stereotypies and impaired gait. Intellectual disability affects more than 1.5% of the population of children in developing countries yet we know little about the daily lives and support services available for them and their caregivers. METHOD: This qualitative study explored the daily experiences of 14 mothers and one grandmother caring for a child with Rett syndrome in China via telephone interviews. RESULTS: Participants reported a lack of education, rehabilitation and support services available to them. Limited access to information reduced families' capacity to adequately meet the needs of their child. These gaps were further exacerbated by discrimination and perceived stigma from some members of the community. CONCLUSIONS: Additional support services and educational programs at the governmental level can improve the quality of life of persons with an intellectual disability and their families and programs involving community participation in the care of people with disabilities may help to address discrimination.

Author-supplied keywords

  • *Health Knowledge, Attitudes, Practice
  • *Health Services Needs and Demand
  • *Social Support
  • Adaptation, Psychological
  • Adult
  • Caregivers/*psychology
  • Child, Preschool
  • China
  • Disabled Persons
  • Female
  • Health Services Accessibility
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Needs Assessment
  • Qualitative Research
  • Questionnaires
  • Rett Syndrome/*nursing
  • Severity of Illness Index
  • Social Stigma
  • Stress, Psychological/etiology
  • Telephone

Get free article suggestions today

Mendeley saves you time finding and organizing research

Sign up here
Already have an account ?Sign in

Find this document

Authors

  • F Lim

  • J Downs

  • J Li

  • X H Bao

  • H Leonard

Cite this document

Choose a citation style from the tabs below

Save time finding and organizing research with Mendeley

Sign up for free