50 / 72
48
providers in Ireland. This umbrella group collaborated
with organizations supporting children with physi-
cal disabilities and sensory disabilities to develop
cross-disability guidelines.
The National Federation undertook a national quan-
titative and qualitative research project, distributing
a representative survey questionnaire to 184 families
and professionals along with conducting 22 focus
groups (7 with families and 15 with individuals from
medical, nursing, and allied health backgrounds). The
results were as follows:
• A set of evidence-based best practice guidelines
for informing families of their child’s disability.
• A consultation and research report describing the
development of the guidelines.
• A DVD (“Words You Never Forget”) providing parent
stories and professional guidance based on evi-
dence found the consultation and research report.
• A one-hour online-accredited training course for
professionals.
• An informational website
(www.informingfamilies.ie)
for families immediately following the diagnosis of
their child’s disability (in seven languages).
• A report on the outcomes of a pilot implementation
of the guidelines in the southern region of Cork.
• A pilot implementation project for the guidelines
across hospital, community, and disability service
settings in Cork from 2008 to 2010.
An evaluation was carried out on training that was
delivered to 235 participants, including 80 fourth-year
medical students, 130 second-year nursing students
and post-graduate public health nurses, and 25 paedi-
atric and neonatal non-consultant hospital doctors
(junior hospital doctor). Participants were chosen for
the study using an opportunistic, purposive sampling
process.
A training programme is established
Conclusion: The improvements in levels of con dence
and knowledge reported by participants of the train-
ing programme demonstrated the potential bene ts of
providing communication skills training that speci cal-
ly addresses the needs of families at the time of their
child’s diagnosis. The wide range of professionals and
the broad range of experience levels involved in the
disclosure process indicate the need for training to
be delivered across medical, nursing, and allied health
disciplines.
This project has received the “Award for Public Ser-
vice Excellence in 2010” by the Irish Prime Minister.
Implementation of the developed guidelines includes
the following actions:
• Half-day “training of trainers”
• 2 hour on-site training course (e.g., in hospitals,
community health care settings, and universities)
• 1 hour e-learning module
• Tailored training where required
Further, the curriculum includes detailed teaching
on the research findings and resultant best practice
guidelines. A DVD has been produced depicting the
personal stories of two families and their children
as well as 45-minutes of input from a mother of two
children with disabilities on her experiences of being
told the news and her recommendations for how
professionals can best support families at the time of
diagnosis.
Results have improved
Finally, a study on the project’s best practices traced
the convergence between the guidelines and the UN
Convention on the Rights of Persons with Disabilities,
in particular with regard to the provision of positive,
realistic, and hopeful communication. The study
employed a mixed methodology, involving 22 focus
groups and a questionnaire survey of 1,588 profes-
Families cutting the ribbon for the opening of a private room
in Cork University Hospital where they can receive difficult
information and discuss news
According to a recent study,
parents as well as professionals
want to have positive, but also
realistic messages at the time
of diagnosis