Table 6.
Family communication about the diagnosis of CFM
| Caregiver (N = 33) | Adult (N = 8) | |||
|---|---|---|---|---|
| Theme/Sample response | n | % | n | % |
| Positive language and reassurance about CFM | 12 | 36 | -- | -- |
| “he is so handsome just the way he is” (male, age 7) | ||||
| No discussion due to child’s young age | 7 | 21 | -- | -- |
| “we have not said much yet” (male, age 3) | ||||
| Born with CFM | 7 | 21 | 3 | 38 |
| “That he was just born that way” (male, age 5) | ||||
| Future treatment possible/planned | 6 | 18 | -- | -- |
| “that when he was older it would be solved” (male, age 8) | ||||
| Description of size of ears | 5 | 15 | -- | -- |
| “one of his ears is smaller” (male, age 5) | ||||
| Normalization | 5 | 15 | -- | -- |
| “that she is just like everyone else” (female, age 8) | ||||
| Religious | 4 | 12 | -- | -- |
| “that’s just the way God made her” (female, age 3) | ||||
| Family labels of ear | 4 | 12 | -- | -- |
| “quiet ear” (male, age 6) | ||||
| Advising child | 3 | 9 | -- | -- |
| “if there’s a situation where he has difficulty hearing, to let us know so we can help make the adjustment to hear” (male, age 11) | ||||
| Frequency of communication about CFM | 3 | 9 | -- | -- |
| “not a specific moment, we have just always talked about it” (female, age 7) | ||||
| Medical information about CFM | 3 | 9 | -- | -- |
| “we pretty much gave her all the information about what differences she had in her face and spine and what kinds of treatments she would need” (female, age 17) | ||||
| Hearing information | 3 | 9 | -- | -- |
| “that he hears in a different way than we do” (male, age 11) | ||||
| Factual information about CFM | 3 | 9 | 1 | 13 |
| “tell him the truth” (male, age 11) | ||||
| Using literature as a resource | 2 | 6 | -- | -- |
| “there is a special book for kids with this diagnosis” (male, age 10) | ||||
| Communication at a specific age | 2 | 6 | -- | -- |
| “about 4 [years old]” (female, age 9) | ||||
| CFM due to an accident/illness during pregnancy | 1 | 3 | 1 | 13 |
| “there had been a minor accident when he was in the belly of the mother” (male, age 8) | ||||
| Learning process for family | 1 | 3 | -- | -- |
| “It’s a constant learning process for both of us” (male, age 6) | ||||
| Label of birth defect | -- | -- | 1 | 13 |
| “it was called a birth defect” (female adult) | ||||
| Delayed diagnosis | -- | -- | 1 | 13 |
| “I was born in [year] and there wasn’t a lot of [information] out there. [Four years ago] I met with [physician] and he told me that I had grade 3 micotia/[aural] atresia” (female adult) | ||||
| Punishment from God | -- | -- | 1 | 13 |
| “God was punishing your mother for getting pregnant at 17” (female adult) | ||||
| No discussion | -- | -- | 1 | 13 |
| “They never talked about it with me” (female adult) | ||||
| Do not recall | -- | -- | 1 | 13 |
| “cannot recall” (male adult) | ||||