The American Journal of Medical Genetics
This report argues that mutual respect should structure the relationship between geneticists and the parents of children with undiagnosed conditions. A panel of three mothers is interviewed as geneticists seek to improve the productivity of their discussions with families. The two main themes examined are those of respect and language. In terms of the latter, the article argues the need successfully to balance easy-to-understand language with the need to express the full extent of the medical situation. It subsequently advises the importance of people skills in overcoming this trade-off.
However, perhaps the most central point the report makes is the need to respect the parent's own knowledge and research of their child's situation. It subsequently makes the profound point that case comparison cannot be fully helpful in such scenarios.
Author: American College of Medical Genetics and Genomics (ACMG), Article first published online: 15 NOV 2015
Publisher: Developmental Medicine & Child Neurology. Opened up at request from SNJ via patientINFORM partnership
Volume 167, Issue 7, pages 8-9, July 2015.
- http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37196/abstract
- Access the pdf here: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37196/pdf
[Editor's note: Our SNJ columnist and Just Bring The Chocolate blogger, Renata Blower, was recently instrumental in launching the first dedicated nursing role for undiagnosed children at the Great Ormond Street Hospital, funded by the Roald Dahl's Marvellous Children's Charity ]
