Positive and negative experiences of formal genetic counselling
| No | |||
|---|---|---|---|
| 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 | ||