‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases
Author:
Affiliation:
1. School of Nursing and Midwifery, Faculty of Health, Community and Education Mount Royal University Calgary Alberta Canada
Funder
Mount Royal University
Publisher
Wiley
Subject
Public Health, Environmental and Occupational Health
Link
https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.12958
Reference66 articles.
1. Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System
2. The Supportive Care Needs of Parents With a Child With a Rare Disease: A Qualitative Descriptive Study
3. CORD.Canadian Organization of Rare Disorders.2019.https://www.raredisorders.ca. Accessed April 06 2019.
4. Global Genes.Global Genes rare patient advocacy summit.2018.https://globalgenes.org/2019summit. Accessed November 13 2018.
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