Understanding the experiences and needs of individuals with Spinal Muscular Atrophy and their parents: a qualitative study

@inproceedings{Qian2015UnderstandingTE,
  title={Understanding the experiences and needs of individuals with Spinal Muscular Atrophy and their parents: a qualitative study},
  author={Ying Qian and Sarah McGraw and J. P. Henne and Jill Jarecki and Kenneth Hobby and W S Yeh},
  booktitle={BMC neurology},
  year={2015}
}
BACKGROUND The clinical features of SMA, which range along a spectrum of severity, are relatively well described. In contrast, the literature on how individuals with SMA and their families experience this condition is limited. To address this gap, we undertook a qualitative study with individuals affected by SMA Types I, II and III, parents of those affected, and clinicians. METHODS We completed 16 focus group sessions and 37 interviews in the US with 96 participants including: 21 with… CONTINUE READING

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