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

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作者单位: Faculty of Medicine, School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H 8M5, Canada. [1] Ottawa Hospital Research Institute, Ottawa, ON, Canada. [2] Newborn Screening Ontario, Children's Hospital of Eastern Ontario (CHEO), Ottawa, ON, Canada. [3] Department of Pediatrics, Dalhousie University and IWK Health Centre, Halifax, NS, Canada. [4] University of British Columbia, BC Children's Hospital, Vancouver, BC, Canada. [5] Department of Pediatrics and Child Health, University of Manitoba and Children's Hospital Research Institute of Manitoba, Winnipeg, MB, Canada. [6] Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada. [7] Program in Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada. [8] University of Alberta, Stollery Children's Hospital, Edmonton, AB, Canada. [9] Division of Clinical and Metabolic Genetics, University of Toronto and The Hospital for Sick Children, Toronto, ON, Canada. [10] Medical Genetics, Department of Pediatrics, CHU Sainte-Justine, Montréal, QC, Canada. [11] McGill University Health Centre, The Montreal Children's Hospital, Montréal, QC, Canada. [12] Genetics, Metabolism and Paediatrics, London Health Sciences Centre, Western University, London, ON, Canada. [13] University of Calgary, Alberta Children's Hospital, Calgary, AB, Canada. [14] Department of Paediatrics, Western University, London, ON, Canada. [15] Queen's University, Kingston General Hospital, Kingston, ON, Canada. [16] Faculty of Medicine, School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H 8M5, Canada. bpotter@uottawa.ca. [17]
DOI 10.1186/s13023-016-0548-2
PMID 27927250
发布时间 2018-11-13
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Orphanet journal of rare diseases

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