Table 2

Positive and negative experiences of formal genetic counselling

Positive Explanation about genetic mechanisms9
Ability to establish cause5
Absolution from self-blame3
Full explanation of possible cause2
Reassurance that impairment is not associated with other problems2
Reassurance that impairment was not genetic2
Learned a little more about possible cause1
Reassurance that the impairment was not due to rubella1
Negative Unable to establish a cause or mechanism16
Unable to reassure and dispel feelings of self-blame/guilt3
Recurrence risks
Positive Given recurrence risks12
Negative Unable to give meaningful recurrence risks3
Led to termination of subsequent pregnancy2
Other information
Positive Instigation of further investigations or referrals4
Confirmation of previous assumptions and beliefs3
Negative Vague and not well informed8
Lack of investigation (“unscientific”)5
Difficult to understand2
No information about research2
Positive Opportunity for follow up5
Opportunity to ask questions4
Sufficient time made available for appointment1
Negative No follow up6
Insufficient time made available for appointment2
Difficulty or delay in getting genetic counselling2
Too early (genetic counselling too close to diagnosis)1
Small consulting room1
Poor “deaf awareness”1
Other statements
Positive Counsellors interested in family, kind and/or concerned to help9
Information presented in an easy to understand and interesting way9
Geneticist having positive attitude to condition1
Advice about how to cope with child's special needs1
Negative General (not informative, “not impressed”, “negative attitude”, etc)10
Tedious repetition of questions previously answered1
Some hostility to having answers questioned1
Children not keen on blood tests1
Shown “syndrome horror book”1