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 |