For many years ISIDA sought the establishment of a National SIDS Register
and, at the time of publishing the Ungruh report (1990), further representation
was made to the Minister for Health. In 1991, it was agreed to establish
a comprehensive SIDS Register (to be funded initially for a three year
period). In January 1992 the collection of detailed information on each
SIDS case in Ireland commenced. This included the gathering of epidemilogical
data and the evaluation (by parents) of the service they received from
professionals. To complement this work, ISIDA formed an Information Committee,
comprised of parental and professional representatives. It was agreed
to assess the findings of the 'support evaluation' after three years data
collection. It was further agreed that ISIDA's education service (provision
of literature and speakers on SIDS), which was already in existence, would
continue in the interim period.
Over the three year period, 1992, 1993, and 1994, newly bereaved parents
and guardians who participated in the Register's epidemiology survey were
requested to provide further information regarding the support and the
services they received at the time of their child's death and in the period
immediately after it. A total of one hundred (100) parents/guardians whose
babies died during this period participated. Participants were distributed
throughout the country's eight Health Board areas, involving a total of
thirty-six urban and rural hospitals. Details of the study findings are
outlined in Appendix A. Sadly, this report clearly indicated that while
some parents had experienced excellent support and care by professionals,
parents in general were dissatisfied with the immediate and on-going
support they received. A summary of the study's findings were:
- Parents/familes were repeatedly the recipients of poor quality
care;
- The sharing of up-to-data information on SIDS was often withheld;
- There was a distinct lack of coordination among professionals
in caring for SIDS families
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Future
Direction
These findings are of grave concern to ISIDA at this time, following almost
20 years of active campaigning for improvements in services. It is particularly
worrying that the provision of poor quality service to parents is not
confined to any single professional category and is also widespread throughout
the country. While recognising that there is no perfect model of care
tailor-made to meet each individual parent and family need, good practice
can and should be attained. Research informs us that the quality of care
provided by professionals significantly affects the way in which the family
begins to cope with the death of their child. Experience by way of feedback
from many parents tells us that poor quality care often stems from lack
of updated information and basic training in active listening and communication
skills. In response ISIDA has devised a 'National Sudden Infant Death
Model of Care for Professionals'. The ' SIDS Model of Care' incorporating
all professionals, is endorsed by the Department of Health. ISIDA requests
that the 'Model of Care' be implemented immediately by professional bodies,
institutions, and of course individuals who might be called upon to help,
often for the first time.
ISIDA's
Service for Professionals
To complement this Model of Care, ISIDA provides an Information
Hotline for Professionals (available 24 hours a day, 7 days
a week). By phoning this hotline professionals can receive up-to-date
information about the procedures they need to follow when they encounter
the sudden and unexpected death of an infant and practical guidelines
to assist them in supporting the family involved. Access to this
hotline is available by phoning the National SIDS Register at
087-423777
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