Experiences of caregivers of children with inherited metabolic diseases: a qualitative study

BACKGROUND: We sought to understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMD) in order to inform strategies for supporting patients and their families. We investigated their experiences regarding the management of disease, its impact on child and famil...

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Bibliografiske detaljer
Udgivet i:Orphanet J Rare Dis
Main Authors: Siddiq, Shabnaz, Wilson, Brenda J., Graham, Ian D., Lamoureux, Monica, Khangura, Sara D., Tingley, Kylie, Tessier, Laure, Chakraborty, Pranesh, Coyle, Doug, Dyack, Sarah, Gillis, Jane, Greenberg, Cheryl, Hayeems, Robin Z., Jain-Ghai, Shailly, Kronick, Jonathan B., Laberge, Anne-Marie, Little, Julian, Mitchell, John J., Prasad, Chitra, Siriwardena, Komudi, Sparkes, Rebecca, Speechley, Kathy N., Stockler, Sylvia, Trakadis, Yannis, Wafa, Sarah, Walia, Jagdeep, Wilson, Kumanan, Yuskiv, Nataliya, Potter, Beth K.
Format: Artigo
Sprog:Inglês
Udgivet: BioMed Central 2016
Fag:
Research
Online adgang:https://ncbi.nlm.nih.gov/pmc/articles/PMC5142351/
https://ncbi.nlm.nih.gov/pubmed/27927250
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-016-0548-2
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