Diagnosis
|
Positive
| Explanation about genetic mechanisms | 9 |
Ability to establish cause | 5 |
Absolution from self-blame | 3 |
Full explanation of possible cause | 2 |
Reassurance that impairment is not associated with other problems | 2 |
Reassurance that impairment was not genetic | 2 |
Learned a little more about possible cause | 1 |
Reassurance that the impairment was not due to rubella | 1 |
Negative
| Unable to establish a cause or mechanism | 16 |
Unable to reassure and dispel feelings of self-blame/guilt | 3 |
Recurrence risks |
Positive
| Given recurrence risks | 12 |
Negative
| Unable to give meaningful recurrence risks | 3 |
Led to termination of subsequent pregnancy | 2 |
Other information
|
Positive
| Instigation of further investigations or referrals | 4 |
Confirmation of previous assumptions and beliefs | 3 |
Prognosis | 1 |
Negative
| Vague and not well informed | 8 |
Lack of investigation (“unscientific”) | 5 |
Difficult to understand | 2 |
No information about research | 2 |
Logistics/practicalities
|
Positive
| Opportunity for follow up | 5 |
Opportunity to ask questions | 4 |
Sufficient time made available for appointment | 1 |
Negative
| No follow up | 6 |
Insufficient time made available for appointment | 2 |
Difficulty or delay in getting genetic counselling | 2 |
Too early (genetic counselling too close to diagnosis) | 1 |
Small consulting room | 1 |
Poor “deaf awareness” | 1 |
Other statements
|
Positive
| Counsellors interested in family, kind and/or concerned to help | 9 |
Information presented in an easy to understand and interesting way | 9 |
Comprehensive/holistic | 2 |
Geneticist having positive attitude to condition | 1 |
Advice about how to cope with child's special needs | 1 |
Negative
| General (not informative, “not impressed”, “negative attitude”, etc) | 10 |
Tedious repetition of questions previously answered | 1 |
Some hostility to having answers questioned | 1 |
Children not keen on blood tests | 1 |
Shown “syndrome horror book” | 1 |