In 2004 the National Federation of Voluntary Bodies, with support from the Health Services National Partnership Forum, began a partnership project to develop national best practice guidelines for informing families of their child’s disability. The project was initiated in response to feedback from many parents to National Federation member organisations, that the news of their child’s disability had been conveyed insensitively or in inappropriate environments; and that their experience of being told the news had caused additional distress at the time of disclosure. Similarly, feedback from professionals delivering the news indicated that they felt there was an absence of training and clear guidance available to support those undertaking the sensitive and challenging task of giving a family the news that their child has a disability.
The Guidelines for Informing Families of their Child’s Disability were developed through a wide ranging consultation and research process and were launched on 3rd December 2007, by Minister for Health and Children, Mary Harney. The Guidelines are currently being implemented on a pilot basis in the Cork region, and this implementation will be evaluated to inform national roll out of the Guidelines.
Following the successful launch in 2007 of the Informing Families Project there has been overwhelming welcome and endorsement of the Guidelines from all key parent and professional stakeholders, with national and international interest continuing to develop. Work has been undertaken to utilise a wide range of opportunities to publicise the Guidelines at a national level, thus allowing the evidence-based best practice recommendations to be made available to professionals requiring support in this area. This dissemination has in turn led to strong demand for the Guidelines from medical, nursing and allied health professionals and from hospitals and organisations throughout the country.
At a local level in the Cork Region there has been significant engagement from a substantial range of organisations and individuals who are working in partnership to implement the Guidelines on the ground in a pilot project and thus to provide learning to inform national roll-out. Through a representative Steering Committee and a series of Working Groups a range of initiatives have already taken place and are in planning to ensure that professionals receive the necessary support to empower them to make effective use of the best practice guidelines when supporting families at the time of their child’s diagnosis.
The National Federation of Voluntary Bodies gratefully acknowledges the significant and generous support of the Health Services National Partnership Forum in its work with the Informing Families Project to date, and in facilitating the progress of a project which has benefit for parents and professionals at the very sensitive time of a the diagnosis of a child’s disability.
- The Informing Families Guidelines can be dowloaded here
- The Informing Families Consultation & Research Report can be downloaded here
- An update of the Informing Families Project and the Cork Implementation Pilot Project can be downloaded here.
For futher information on the Informing Families Project, please contact Alison Harnett, Project Co-Ordinator, National Federation of Voluntary Bodies, Tel: 091-792316, Email: alison.harnett@fedvol.ie.
Project Updates
(30 September 2009)
A presentation on the National Best Practice Guidelines for Informing Families of their Child's Disability was made to the Institute of Obstetricians and Gynaecologists on 25 September 2009.
(15 May 2009)
National Best Practice Guidelines for Informing Families of their Child's Disability presented at joint Irish and Welsh Paediatric Societies Meeting, Fota Island Cork
(14 May 2009)
'Train the Trainers' workshop for Informing Families of their Child's Disability held in Ballincollig, Cork