Table 1 Resume of the indication for a communication of the diagnosis
When |
- Communicate the diagnosis as soon as it is reached and inform parents even when the diagnosis is still uncertain - Communicate to both parents at the same time - Dedicate time to answer all parents' questions |
Where - Communicate the diagnosis in presence - Quiet and private setting |
Who |
- Doctors who are up-to-date on the syndrome and have professional experience - It is preferable for gynaecologists and geneticists to be accompanied by paediatricians and/or neonatologists |
How Prenatal diagnosis - Have a positive attitude and extensive knowledge of the condition - Communicates the diagnosis without implying personal judgements - Absolutely avoid expressions that may be offensive and/or obsolete - Use person-centred language - Once the diagnosis has been communicated, stop and ask parents what they know about the syndrome - Balance positive and negative aspects - Inform and briefly describe to parents all three possible choices (continue or terminate the pregnancy and adoption) - Conduct the discussion in a non-directive way - Propose a new meeting after a few days - Offer parents the opportunity to meet other parents - Provide parents with contact details of local and national support groups- Postnatal diagnosis - Congratulate the parents on the birth of their child - It is good to communicate the diagnosis to the parents with the child present; refer to him/her by name and speak in person-centred language - Avoid offensive language and vague or approximate information - The discussion of the comorbidities should be accompanied by the therapeutic possibilities and the achievable outcomes - Provide balanced information - Emphasise your helpfulness and what you, as clinicians, can offer in terms of care and support. Explains to parents the follow-up programmes that are available for their child. - Offer parents the opportunity to meet other parents - Provide parents with contact details of local and national support groups |