Communicating With Families31
| At diagnosis, immediate advice remains pertinent regarding the need to: | |
| • first, congratulate the family | |
| • have infant present; refer to infant by name | |
| • use a respectful bedside manner | |
| • time discussion after labor is complete and as soon as diagnosis is suspected (not necessarily confirmed) | |
| • have a support person present for mother, father, and family members as appropriate | |
| • use a cohesive, physician-led team approach | |
| Helpful discussion will include: | |
| • up-to-date, accurate information | |
| • a balanced approach rather than relying on personal opinions and experience | |
| • person-first language (ie, child with Down syndrome)32 ; | |
| • connection to other parents and resource groups | |
| • discussion of life potentials for people with Down syndrome | |
| Share with families the interplay within families and individual perspectives: | |
| • individuals with Down syndrome: nearly 99% indicated that they were happy with their lives, and 97% liked who they are and encouraged health care professionals to value them, emphasizing that they share similar hopes and dreams as people without Down syndrome33 ; | |
| • parents: 79% felt their outlook on life was more positive because of people with Down syndrome31 ; | |
| • siblings: 88% felt that they were better people because of their siblings with Down syndrome33 ; | |
| • a majority of families report unanimous feelings of love and pride | |
| • positive themes dominate modern families34 | |
| At diagnosis, immediate advice remains pertinent regarding the need to: | |
| • first, congratulate the family | |
| • have infant present; refer to infant by name | |
| • use a respectful bedside manner | |
| • time discussion after labor is complete and as soon as diagnosis is suspected (not necessarily confirmed) | |
| • have a support person present for mother, father, and family members as appropriate | |
| • use a cohesive, physician-led team approach | |
| Helpful discussion will include: | |
| • up-to-date, accurate information | |
| • a balanced approach rather than relying on personal opinions and experience | |
| • person-first language (ie, child with Down syndrome)32 ; | |
| • connection to other parents and resource groups | |
| • discussion of life potentials for people with Down syndrome | |
| Share with families the interplay within families and individual perspectives: | |
| • individuals with Down syndrome: nearly 99% indicated that they were happy with their lives, and 97% liked who they are and encouraged health care professionals to value them, emphasizing that they share similar hopes and dreams as people without Down syndrome33 ; | |
| • parents: 79% felt their outlook on life was more positive because of people with Down syndrome31 ; | |
| • siblings: 88% felt that they were better people because of their siblings with Down syndrome33 ; | |
| • a majority of families report unanimous feelings of love and pride | |
| • positive themes dominate modern families34 | |