52 / 72
50
sionals and 584 families. The study found that a large
majority of parents and professionals supported the
recommendation of providing families with positive,
realistic, and hopeful messages at the time of diag-
nosis, but fewer than half of the parents surveyed
reported receiving communication of this type.
The ndings indicated that some professionals
struggle with fears of providing ‘false hope’, a fear of
litigation, and a lack of training when communicating
with parents about their child’s condition. However,
the research also identi ed positive and hopeful
messages that are not in con ict with providing
honest and realistic communication. These include
acknowledging the dignity and worth of the child as
an individual, indicating that there is help available for
parents, and informing families about the spectrum
of possible outcomes for their child rather than the
worst-case scenario.
FUNDING:
Public funding has been obtained
The Health Services National Partnership Forum and
the Health Services Executive in Ireland funded the
original project to develop the evidence-based best
practice guidelines for informing families of their
child’s disability. Moreover, funding has been provided
by the Department of Health to support and facilitate
the future national implementation of the guidelines
through a National Lottery Funding grant scheme.
OUTLOOK:
Ready for further dissemination
The guidelines are available for further dissemination
in any country for which they are deemed useful and
there has already been significant interaction with or-
ganisations in Finland, Austria and Germany in relation
to these best practice guidelines. There is no charge
for use of any of the materials as it is the intention of
the National Federation of Voluntary Bodies to share
this evidence-based guidance as widely as possible in
order to promote supportive experiences for families
everywhere.
Going forward, it is expected that professionals who
inform families about their child’s disability will have
access to evidence-based best practice guidelines,
and that families will have the most supportive possi-
ble experience. This will establish strong parent-pro-
fessional trust, which will in turn support engagement
with early intervention supports.
FACTS AND FIGURES:
A mandatory course for
paediatricians how to inform families
All paediatricians in Ireland who wish to be-
come consultant doctors must provide a cer-
tificate of completion of the Informing Families
e-learning training with their application. The
Royal College of Physicians of Ireland intro-
duced this measure in 2013.
Training has been provided to:
• Trainee paediatricians at the Royal College
of Physicians of Ireland
• Fourth-year medical students in University
College Cork
• Second-year nursing, midwifery, and
post-graduate public health nurse students
in University College Cork
• First-year post-graduate medical students
in University College Limerick (since 2009)
• Post-graduate nursing students on the
Children’s Palliative Care module in Trinity
College Dublin (since 2007)
How doctors, nurses and staff are trained