Genetics in Medicine Open (Jan 2024)
P480: Parent and healthcare personnel perspectives on challenges to family-centered care for children with inherited metabolic diseases: A qualitative analysis
- Andrea Chow,
- Guylaine D'Amours,
- Isabel Jordan,
- Nicole Pallone,
- Maureen Smith,
- Pranesh Chakraborty,
- Zobaida Al-Baldawi,
- Julie Paradis,
- Jamie Brehaut,
- Alicia Chan,
- Eyal Cohen,
- Sarah Dyack,
- Jane Gillis,
- Sharan Goobie,
- Ian Graham,
- Cheryl Rockman-Greenberg,
- Jeremy Grimshaw,
- Robin Hayeems,
- Michal Inbar-Feigenberg,
- Shailly Jain-Ghai,
- Sara Khangura,
- Jennifer MacKenzie,
- Nathalie Major,
- John Mitchell,
- Stuart Nicholls,
- Amy Pender,
- Murray Potter,
- Chitra Prasad,
- Natalya Karp,
- Andreas Schulze,
- Komudi Siriwardena,
- Kathy Speechley,
- Sylvia Stockler,
- Yannis Trakadis,
- Clara van Karnebeek,
- Jagdeep Walia,
- Kumanan Wilson,
- Brenda Wilson,
- Andrea Yu,
- Beth Potter
Affiliations
- Andrea Chow
- University of Ottawa
- Guylaine D'Amours
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- Isabel Jordan
- Patient partner, British Columbia, Canada
- Nicole Pallone
- Patient partner, Canadian PKU & Allied Disorders Inc, Toronto, Canada
- Maureen Smith
- Patient partner, Canadian Organization for Rare Disorders, Toronto, Canada
- Pranesh Chakraborty
- Children's Hospital of Eastern Ontario, Ottawa, Canada
- Zobaida Al-Baldawi
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- Julie Paradis
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- Jamie Brehaut
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- Alicia Chan
- Department of Medical Genetics, University of Alberta, Edmonton, Canada
- Eyal Cohen
- University of Toronto/Hospital for Sick Children, Toronto, Canada
- Sarah Dyack
- Division of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Canada
- Jane Gillis
- Moffit Cancer Care Center, Tampa, FL
- Sharan Goobie
- Division of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Canada
- Ian Graham
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- Cheryl Rockman-Greenberg
- University of Manitoba, Winnipeg, Canada
- Jeremy Grimshaw
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada
- Robin Hayeems
- University of Toronto/Hospital for Sick Children, Toronto, Canada
- Michal Inbar-Feigenberg
- University of Toronto/Hospital for Sick Children, Toronto, Canada
- Shailly Jain-Ghai
- Department of Medical Genetics, University of Alberta, Edmonton, Canada
- Sara Khangura
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- Jennifer MacKenzie
- McMaster University, Hamilton, Canada
- Nathalie Major
- Children's Hospital of Eastern Ontario, Ottawa, Canada
- John Mitchell
- Montreal Children’s Hospital, Montreal, Canada
- Stuart Nicholls
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada
- Amy Pender
- Hamilton Health Sciences Centre, Hamilton, Canada
- Murray Potter
- Hamilton Health Sciences Centre, Hamilton, Canada
- Chitra Prasad
- Department of Pediatrics, Western University, London, Canada
- Natalya Karp
- Department of Pediatrics, Western University, London, Canada
- Andreas Schulze
- University of Toronto/Hospital for Sick Children, Toronto, Canada
- Komudi Siriwardena
- Department of Medical Genetics, University of Alberta, Edmonton, Canada
- Kathy Speechley
- Western University, London, Canada
- Sylvia Stockler
- Department of Pediatrics, B.C. Children’s Hospital, Vancouver, Canada
- Yannis Trakadis
- Montreal Children’s Hospital, Montreal, Canada
- Clara van Karnebeek
- Department of Pediatrics, Radboud University Medical Center, Nijmegen, The Netherlands
- Jagdeep Walia
- Medical Genetics, Department of Pediatrics, Kingston Health Sciences Centre and Queen’s University, Kingston, Canada
- Kumanan Wilson
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada
- Brenda Wilson
- Faculty of Medicine Division of Community Health and Humanities, Memorial University of Newfoundland
- Andrea Yu
- Children's Hospital of Eastern Ontario, Ottawa, Canada
- Beth Potter
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- Journal volume & issue
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Vol. 2
p. 101379
