Emotional experience in parents of children with Zellweger spectrum disorders: A qualitative study

Zellweger spectrum disorders (ZSDs) are rare, debilitating genetic diseases of peroxisome biogenesis that require constant management and lifelong care. Nevertheless, the experience of family caregivers for children diagnosed with ZSD is not well understood. In this study, we sought to characterize...

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Detalhes bibliográficos
Publicado no:Mol Genet Metab Rep
Main Authors: Bose, Mousumi, Mahadevan, Meena, Schules, Dana R., Coleman, Rory K., Gawron, Kelly M., Gamble, Melissa B., Roullet, Jean-Baptiste, Gibson, K. Michael, Rizzo, William B.
Formato: Artigo
Idioma:Inglês
Publicado em: Elsevier 2019
Assuntos:
Research Paper
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC6377409/
https://ncbi.nlm.nih.gov/pubmed/30815361
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1016/j.ymgmr.2019.100459
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