%0 Journal Article
%T Experiences of caregivers of children with inherited metabolic diseases: a qualitative study
%A Anne-Marie Laberge
%A Beth K. Potter
%A Brenda J. Wilson
%A Cheryl Greenberg
%A Chitra Prasad
%A Doug Coyle
%A Ian D. Graham
%A Jagdeep Walia
%A Jane Gillis
%A John J. Mitchell
%A Jonathan B. Kronick
%A Julian Little
%A Kathy N. Speechley
%A Komudi Siriwardena
%A Kumanan Wilson
%A Kylie Tingley
%A Laure Tessier
%A Monica Lamoureux
%A Nataliya Yuskiv
%A Pranesh Chakraborty
%A Rebecca Sparkes
%A Robin Z. Hayeems
%A Sara D. Khangura
%A Sarah Dyack
%A Sarah Wafa
%A Shabnaz Siddiq
%A Shailly Jain-Ghai
%A Sylvia Stockler
%A Yannis Trakadis
%A on behalf of the Canadian Inherited Metabolic Diseases Research Network (CIMDRN)
%J Archive of "Orphanet Journal of Rare Diseases".
%D 2016
%R 10.1186/s13023-016-0548-2
%X 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 family life, and interactions with the health care system
%K Experiences with care
%K Inherited metabolic diseases
%K Family support
%K Coping
%K Qualitative research
%U https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5142351/