Introduction
During 1992, 1993 and 1994, newly bereaved parents/carers who participated
in ISIDA's epidemiology survey were requested to answer questions regarding
the support and service they received at the time of their baby's death
and in the immediate period following. This survey was part of on-going
research projects carried out by ISIDA's Naional Sudden Infant Death Register.
Over the three years, 100 parents/carers whose babies died suddenly and
unexpectedly participated in this 'Support Evaluation Survey'. The breakdown
of the Health Board Area participation is as follows:
Health Board Area
Eastern
North Eastern
South Eastern
Southern
Midland
Western
Mid Western
North Western |
Total
Number
59
13
14
17
6
14
16
3 |
Questionnaires
completed
46
6
10
11
3
12
10
2 |
A total of 36 hospitals throughout Ireland were involved in the 100 cases
of sudden and unexpected deaths that were reported to the Register.
Following post-mortem, a cause of death was identified in three cases.
A further case occurred outside the Republic of Ireland, although the
family returned home immediately after the post-mortem.
The majority of interviews were carried out in the parents'/carers' home.
The format of the questionnaire was semi-structured and comprised of three
parts:
A. Background Information
B. Service Performance . .
C. Service Utilisation. . . . . .
. . .
A summary of the survey findings are outlined below under section headings:
- Hospital Services
- Community Services
- ISIDA Services
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1. Hospital Service
Evaluation of the service parents received at the hospital highlights
a number of important points.
- In 10% of cases, the infant was pronounced dead by non-medical staff
- In 25% of cases where the infant was pronounced dead at the hospital,
parents were not allowed or encouraged to hold their baby before he/she
was taken away.
- A special room for the parents and baby was only provided in 48%
of cases.
- 19% of families were taken directly to the mortuary when they arrived
at the hospital.
- 21% of parents reported that for them the conditions in the hospital
were awful, poor, or fair.
- 12% of parents stated that they were not given privacy in the hospital
when they first arrived there.
- Less than half (46%) of hospital staff offered to take a photograph
of the infant for the parents.
Following post-mortem
- 52% of parents saw their baby in the mortuary following post-mortem.
- 39% of parents stated that, when they saw their baby, he/she was
in a coffin, or on a trolley or slab.
- A third of the parents were not allowed to hold their baby again.
Information
- While details about the post-mortem examination were explained to
the parents by a variety of people, for seven parents no-one explained
the procedure to them.
- 45% of parents were not offered the opportunity to speak to a Consultant
about their baby's death.
- Less than a fifth (18%) of the hospitals provided parents with a
copy of ISIDA's booklet of information on SIDS and bereavement entitled
'A Precious Past, A Hopeful Future').
While the majority of parents stated that they found the hospital
staff helpful, 14% stated that they were not helpful to them.
Post-mortem Information
- Less than a fifth of the parents were given the opportunity to speak
to a pathologist.
- A third of the parents did not have the post-mortem results explained
to them by anyone.
- Only seven pathologists explained the results to the parents.
- 56% of the parents stated that they would like to have a copy of
the post-mortem report, yet only 13% were invited to receive a copy.
more statistics...
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