Table 9.
Ongoing questions of caregivers and adults with CFM about the diagnosis
| Caregiver (n = 27) | Adult (n = 6) | |||
|---|---|---|---|---|
| Theme/Sample response | n | % | n | % |
| Etiology | 11 | 41 | 1 | 17 |
| “what caused it” (female, age 3) | ||||
| Well informed currently | 4 | 15 | -- | -- |
| “I know everything including new research and improved devices” (male, age 10) | ||||
| Treatment guidance and prognosis | 4 | 15 | 3 | 50 |
| “I wish I knew definitively when is the best and most appropriate age for having jaw distraction” (male, age 5) | ||||
| Recurrence information | 3 | 11 | -- | -- |
| “Will a second child be born with this? Will his children have a probability of being born this way?” (male, age 3 months) | ||||
| Clarify CFM features | 2 | 7 | -- | -- |
| “if he has a canal” (male, age 6 months) | ||||
| How to help their child | 2 | 7 | -- | -- |
| “how to help a young girl cope with looking different then her peers” (female, age 17) | ||||
| Understand child’s experience | 2 | 7 | -- | -- |
| “I want to know what he feels without the right ear and know what he is going through…I wish I could experience it” (male, age 6 months) | ||||
| Nothing | 2 | 7 | 1 | 17 |
| “can’t think of anything” (male, age 9) | ||||
| Learning more as a child develops | 1 | 4 | -- | -- |
| “unfortunately a lot of this diagnosis depends on waiting to see the development of the child” (male, age 7) | ||||
| Progress in prenatal diagnosis | 1 | 4 | -- | -- |
| “Why can’t an ultrasound detect microtia and see that the ear is not growing properly?” (male, age 1) | ||||
| Normed data to use as point of comparison | 1 | 4 | -- | -- |
| “I’d like metrics…such as ‘based on head circumference, the typical child’s jaw would be XX mm wide and XX mm long…here are the corresponding percentiles’ kind of like height and weight” (female, age 2) | ||||
| Accurate and timely information | -- | -- | 2 | 33 |
| “I didn’t know it had a name until I was 29, just be upfront with it all” (female adult) | ||||