Guidelines devised to help convey disability diagnosis

BREAKING THE news to a parent that their child has been diagnosed with a disability is no easy task, but a new set of tools urges health professionals that realistic, positive messages and hope should be given with the diagnosis – not merely the worst-case scenario.

Alison Harnett, Informing Families project co-ordinator, explained that many parents felt the news of their child’s disability had been conveyed insensitively or in inappropriate environments which had caused them additional distress at the time of disclosure.

National Best Practice Guidelines for Informing Families of their Child’s Disability were developed by the National Federation of Voluntary Bodies and launched by Minister for Health and Children, Mary Harney, in December 2007.

For the past two years, the Informing Families project has been involved in a two-year pilot implementation of the guidelines in the Cork region.

Ms Harnett said that through the pilot project in the Cork region a range of valuable tools and materials had been developed which could now be rolled out around the State to support the implementation of best practice when informing and supporting families of children with disabilities.

The tools, which include an information website to support parents and professionals (informingfamilies.ie) and an e-learning module for health professionals, were launched recently at University College Cork by John Moloney, Minister for Equality, Disability and Mental Health.

Ms Hartnett said: “In our research, over 90 per cent of parents and health professionals said parents should be given positive messages and hope when being given the news of their child’s disability, but less than 48 per cent of parents say this actually happened.

“Professionals do need to be honest but they can also be positive and realistic. One example is by saying: ‘We will be with you all the way’.”

The guidelines advise that disclosure must be tailored to the emotional needs of each individual family and the emphasis should be on the child first and the disability second.