A voluntary umbrella group is urging guidelines for doctors delivering sensitive news to parents. Kitty Holland reports
It is probably one of the most momentous events in a parent's life. But it is too often delivered in rushed, jargon-filled few minutes by a doctor, whose bleeper may be calling him to a ward round, in a corridor offering neither privacy nor dignity.
Just how the news that their child has a disability is broken to parents depends as much on luck as anything, according to Brian O'Donnell, chief executive of the National Federation of Voluntary Bodies (NFVB).
The manner in which hearing the news is experienced - whether it be one where negative or positive feelings are to the fore - may affect the family for a long time after.
And while some healthcare professionals understand the importance of engaging with parents at this crucial moment with sensitivity, others do not.
One woman, who was in contact with the NFVB, told how she received the news from a consultant that her son had been born with Downs Syndrome and a heart defect. The consultant sat her down and proceeded to tell her: "You've got a double whammy with this one." And then she was sent home with him.
Twenty years on, that moment of terror, grief and overwhelming worry still haunts her, despite the fact that, with the support of voluntary organisations and the health services, her son leads a full and contented life.
With a concerned eye to stories such as her's the NFVB is embarking on a process to draw up guidelines on how to break the news to parents that their child has a disability. Mr O'Donnell says the guidelines should be drawn up and published in the next 12 to 18 months.
Some research has been done on the issue here and internationally, and some bodies such as An Bord Altranais have internal guidelines. However, there remain no universal guidelines here.
The NFVB is at the early stages of drawing up the guidelines and has just begun inviting representatives of the nursing, obstetric, psychiatric, social work and therapeutic professions - "and most importantly parents" to a multi-disciplinary steering committee. They will examine international research as well as gather first hand experience and views, says Mr O'Donnell.
"We are hoping the guidelines will go into all maternity and children's hospitals, GPs' surgeries, health centres - anywhere where professionals might find themselves in the position of having to bring this sort of news to a parent or guardian. We'd also hope they'd be taken up in the medical training colleges," says Mr O'Donnell.
He is clear that, though the news that your child is disabled is never good, the emphasis should not be on the 'bad'.
"The accent should be on the positive, that the child has a future and that there are supports. The accent should be on the positive."
While stressing the views he expresses are his at this stage, there are obvious, sensitive steps anyone who has to bring news of a disability should take. "Privacy is one of the things to ensure its done with dignity." Such important and distressing news should not be delivered in public.
"There's also the issue of who is there when the news is delivered. Is the whole family there? Are both parents? People can react very irrationally. I have heard cases where the father blames the mother. There can be long -term impacts on the relationship between the parents. It's terribly complex."
Doctors should take time with the parents and ensure they are not going to be interrupted, he says. If a phone is ringing or their bleeper going throughout the conversation, the parents are unlikely to feel there is space for them to express their concerns.
On timing, he says parents should not be kept waiting all day for a meeting with their child's doctor, especially if they suspect the news is likely to be painful. Medical jargon should be avoided, he says. "It's important that the information is given clearly.
Mr O'Donnell says parents should be reassured they can come back, that their changing needs will be supported, and that they will be listened to.
The NFVB can be contacted on 091-792316