“You Have to Sit and Explain it All, and Explain Yourself.” Mothers’ Experiences of Support Services for Their Offspring with a Rare Genetic Intellectual Disability Syndrome

@article{Griffith2010YouHT,
  title={“You Have to Sit and Explain it All, and Explain Yourself.” Mothers’ Experiences of Support Services for Their Offspring with a Rare Genetic Intellectual Disability Syndrome},
  author={Gemma Maria Griffith and Richard P Hastings and Susie Nash and Michael Petalas and Chris David Oliver and Patricia Howlin and Joanna Moss and Joseph Petty and Penelope Tunnicliffe},
  journal={Journal of Genetic Counseling},
  year={2010},
  volume={20},
  pages={165-177}
}
The experiences of mothers of adult offspring with Angelman, Cornelia de Lange, or Cri du Chat syndrome have not been previously explored in research. The current study focuses on experiences with social and medical services and the impact the rareness of an adult offspring’s syndrome has on the experiences of mothers. Eight mothers of adults with Angelman, Cornelia de Lange, or Cri du Chat syndrome were interviewed. Thematic Content Analysis was used to interpret the interviews. Four themes… CONTINUE READING
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