1. Callaway, E . Time to use the p-word? Coronavirus enters dangerous new phase. Nature. Published online February 25, 2020. DOI:
10.1038/d41586-020-00551-1 Google Scholar |
Crossref2. Remuzzi, A, Remuzzi, G. COVID-19 and Italy: what next? Lancet. 2020;395(10231):1225-1228. DOI:
10.1016/S0140-6736(20)30627-9 Google Scholar |
Crossref |
Medline3. Hollander, JE, Carr, BG. Virtually perfect? Telemedicine for Covid-19. N Engl J Med. 2020;382(18):1679-1681. DOI:
10.1056/NEJMp2003539 Google Scholar |
Crossref |
Medline4. Wechsler, LR . Advantages and limitations of teleneurology. JAMA Neurol. 2015;72(3):349-354. DOI:
10.1001/jamaneurol.2014.3844 Google Scholar |
Crossref |
Medline5. Public Health Agency of Canada . Vulnerable populations and COVID-19. Accessed January 10, 2020. Accessed August 13, 2020.
https://www.canada.ca/en/public-health/services/publications/diseases-conditions/vulnerable-populations-covid-19.html.
Google Scholar6. Tezer, H, Demirdag, TB. Novel coronavirus disease (COVID-19) in children. Turk J Med Sci. 2020(50):592-603.
Google Scholar |
Crossref |
Medline7. Oualha, M, Bendavid, M, Berteloot, L, et al. Severe and fatal forms of COVID-19 in children. Arch Pédiatr. 2020;27(5):235-238. DOI:
10.1016/j.arcped.2020.05.010 Google Scholar |
Crossref |
Medline8. Adang, LA, Sherbini, O, Ball, L, et al. Revised consensus statement on the preventive and symptomatic care of patients with leukodystrophies. Mol Genet Metab. 2017;122(1–2):18-32. DOI:
10.1016/j.ymgme.2017.08.006 Google Scholar |
Crossref |
Medline9. Van Haren, K, Bonkowsky, JL, Bernard, G, et al. Consensus statement on preventive and symptomatic care of leukodystrophy patients. Mol Genet Metab. 2015;114(4):516-526.
Google Scholar |
Crossref |
Medline10. Vanderver, A, Prust, M, Tonduti, D, et al. Case definition and classification of leukodystrophies and leukoencephalopathies. Mol Genet Metab. 2015;114(4):494-500. 2015/02/05 ed. DOI:
10.1016/j.ymgme.2015.01.006 Google Scholar |
Crossref |
Medline11. Costello, DJ, Eichler, AF, Eichler, FS. Leukodystrophies: classification, diagnosis, and treatment. Neurologist. 2009;15(6):319-328. DOI:
10.1097/NRL.0b013e3181b287c8 Google Scholar |
Crossref |
Medline12. Kay-Rivest, E, Khendek, L, Bernard, G, Daniel SJ. Pediatric leukodystrophies: the role of the otolaryngologist. Int J Pediatr Otorhinolaryngol. 2017;101:141-144. 101. 2017/10/02 ed. DOI:
10.1016/j.ijporl.2017.07.039 Google Scholar |
Crossref |
Medline13. Izquierdo, R, Morin, PC, Bratt, K, et al. School-centered telemedicine for children with type 1 diabetes mellitus. J Pediatr. 2009;155(3):374-379. DOI:
10.1016/j.jpeds.2009.03.014 Google Scholar |
Crossref |
Medline14. Burke, BL, Hall, RW, Section on Telehealth Care. Telemedicine: pediatric applications. Pediatrics. 2015;136(1):e293-308.
Google Scholar |
Crossref15. Romano, MJ, Hernandez, J, Gaylor, A, Howard S, Knox R. Improvement in asthma symptoms and quality of life in pediatric patients through specialty care delivered via telemedicine. Telemed J E Health. 2001;7(4):281-286. DOI:
10.1089/15305620152814683 Google Scholar |
Crossref |
Medline16. Bélanger, L, Marquis, JG, Mercier, AM. 2013. La communauté de pratique québécoise en évaluation de l’expérience patient: une expertise à partager! Le Point en administration de la santé et des services sociaux.
Google Scholar17. Russell, S . Patients’ experiences: top heavy with research. Research Matters. Published 2013. Accessed August 11, 2020.
http://www.research-matters.com.au/publications/PatientsExperiencesReview.pdf Google Scholar18. Green, J, Thorogood, N. Qualitative Methods for Health Research. 3rd ed. Introducing Qualitative Methods. Sage; 2014.
Google Scholar19. DiCicco-Bloom, B, Crabtree, BF. The qualitative research interview. Med Educ. 2006;40(4):314-321. DOI:
10.1111/j.1365-2929.2006.02418.x Google Scholar |
Crossref |
Medline |
ISI20. Harper, D, Thompson, AR. Qualitative Research Methods in Mental Health and Psychotherapy: A Guide for Students and Practitioners. 1st ed. John Wiley & Sons, Ltd; 2012. DOI:
10.1002/9781119973249 Google Scholar |
Crossref21. Tong, A, Sainsbury, P, Craig, J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357. Oxford Academic: DOI:
10.1093/intqhc/mzm042 Google Scholar |
Crossref |
Medline |
ISI22. Palinkas, LA, Horwitz, SM, Green, CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health. 2015;42(5):533-544. DOI:
10.1007/s10488-013-0528-y Google Scholar |
Crossref |
Medline |
ISI23. Patton, MQ . Qualitative Research & Evaluation Methods: Integrating Theory and Practice. 4th ed. Sage Publications; 2014.
Google Scholar24. Hennink, MM, Kaiser, BN, Marconi, VC. Code saturation versus meaning saturation: how many interviews Are enough? Qual Health Res. 2017;27(4):591-608.
Google Scholar |
SAGE Journals |
ISI25. Braun, V, Clarke, V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101. DOI:
10.1191/1478088706qp063oa Google Scholar |
Crossref26. NVivo . 1999. English. QSR International.
Google Scholar27. Welsh, E . Dealing with data: using NVivo in the qualitative data analysis process. Forum Qual Soc Res. 2002;3(2):2. DOI:
10.17169/fqs-3.2.865 Google Scholar |
Crossref28. Glaser, BG, Strauss, AL. The constant comparative method of qualitative analysis. Soc Problems. 1965;12(4):436-445. DOI:
10.2307/798843 Google Scholar |
Crossref29. Gouvernement du Quebec . 2020. Service employment paycheque: an arrangement for the delivery of home care support services
. Accessed August 13, 2020.
https://www.quebec.ca/en/family-and-support-for-individuals/assistance-and-support/service-employment-paycheque-an-arrangement-for-the-delivery-of-home-care-support-services/ Google Scholar30. Baumbusch, J, Mayer, S, Sloan-Yip, I. Alone in a crowd? Parents of children with rare diseases’ experiences of navigating the healthcare system. J Genet Couns. 2019;28(1):80-90. DOI:
10.1007/s10897-018-0294-9 Google Scholar |
Crossref31. Dellve, L, Samuelsson, L, Tallborn, A, Fasth A, Hallberg LR. Stress and well-being among parents of children with rare diseases: a prospective intervention study. J Adv Nurs. 2006;53(4):392-402. DOI:
10.1111/j.1365-2648.2006.03736.x Google Scholar |
Crossref |
Medline32. Dermer, E, Spahr, A, Tran, LT, et al. Stress in parents of children with genetically determined leukoencephalopathies: a pilot study. J Child Neurol. 2020;35(13):901-907. DOI:
10.1177/0883073820938645 Google Scholar |
SAGE Journals33. Cardinali, P, Migliorini, L, Rania, N. The caregiving experiences of fathers and mothers of children with rare diseases in Italy: challenges and social support perceptions. Front Psychol. 2019;10:1780. DOI:
10.3389/fpsyg.2019.01780 Google Scholar |
Crossref |
Medline34. Pelentsov, LJ, Fielder, AL, Laws, TA, Esterman AJ. The supportive care needs of parents with a child with a rare disease: results of an online survey. BMC Fam Pract. 2016;17(1):88. DOI:
10.1186/s12875-016-0488-x Google Scholar |
Crossref |
Medline35. Hooshmand, M, Foronda, C. Comparison of telemedicine to traditional face-to-face care for children with special needs: a quasiexperimental study. Telemed J E Health. 2018;24(6):433-441. DOI:
10.1089/tmj.2017.0116 Google Scholar |
Crossref |
Medline36. Stuckey, R, Domingues-Montanari, S. Telemedicine is helping the parents of children with neurodevelopmental disorders living in remote and deprived areas. Paediatr Int Child Health. 2017;37(3):155-157. DOI:
10.1080/20469047.2017.1315914 Google Scholar |
Crossref |
Medline37. Haimi, M, Brammli-Greenberg, S, Waisman, Y, Baron-Epel O. Physicians’ experiences, attitudes and challenges in a pediatric telemedicine service. Pediatr Res. 2018;84(5):650–656. DOI:
10.1038/s41390-018-0117-6 Google Scholar |
Crossref |
Medline
Comments (0)