...back to contents
ISIDA Logo National Sudden Infant Death
Model of Care for Professionals
Background

In 1976 a group of parents, each one of whom had lost a child through Sudden Infant Death, came together and formed the Irish Sudden Infant Death Association (ISIDA). The Association adopted 3 broad aims:-

  • to offer support and information to families bereaved by Sudden Infant Death;
  • to provide accurate and up-to-date information on Sudden Infant Death to professionals, the media and the community at large;
  • to promote and support research into the causes and prevention of Sudden Infant Death.

Through its contact with Sudden Infant Death families all over the country, the association quickly came to realise that to ensure that appropriate support services are available , professionals need to be educated about the needs cot death (SIDS) families have when their child dies suddenly and unexpectedly. In the past decade, SIDS parents have actively participated in professionals' training days as part of an ongoing education programme. By sharing their personal stories and experience, awareness of families' needs has been heightened. To complement this, ISIDA produced a Reference Manual for health care and other professionals who might ever be in contact with Sudden Infant Death families(1989). This manual was distributed to all professional bodies and institutions. Readers may be surprised to know that up to 16 different professionals can be in contact with a 'SIDS Family'. For many professionals it may be their first experience of providing care to SIDS families.

Over the past decade only a relatively small number of publications has dealt with the effects of Sudden Infant Death and the positive role the various members of health care services can play. Repeatedly these publications conclude that there is still general dissatisfaction among the bereaved with the standard of support service they receive. Ward et. al. (1986) found that only 57% of parents questioned considered that they had received support from doctors. An Australian study (Cornwell, 1977) found that at least half of the medical practitioners involved did not see the plight of the bereaved parents as within their sphere of professional activity.

 Irish Research

In 1988/89, ISIDA commissioned a study "to examine the quality of health care experienced by families bereaved by Sudden Infant Death in Ireland." The issues researched mainly focussed on health service provision rather than the consequences of SIDS on the family's life. Parents who had experienced a Sudden Infant Death during 1988, and who were subsequently in contact with the Association, were invited to participate in the study. Over 60% participated. Similarly, professionals who had some knowledge of Sudden Infant Death occurring in their areas of practice were invited to take part.

The study (Ungruh et. al.) findings were published in September 1990. A summary of its findings were:
  • Primary health care services, when provided to a high standard, were invaluable to families bereaved by SIDS;
  • In general, parents and professionals agreed that health service provision for parents bereaved by SIDS in Ireland was sparse, uncoordinated and too variable in quality;
  • Parents need a 'reference person' who would be available to listen to them and support them by providing/coordinating all the back-up services they required;
  • Parents need accurate factual information on SIDS from professionals;
  • Professionals need training in information updating and active listening and basic communication skills.


The study recommended four areas for improvement:

  1. Notification of SIDS cases to all professionals involved with the family;
  2. Provision of adequate factual information on SIDS to families and professionals;
  3. Coordination of service provision;
  4. provision of adequate training for primary carers.


more...
...back to contents