By studying in which cases what decisions has been made we hope to get more insight into the interpretation of the requirements of the Ministry in everyday practise. Furthermore, it is important to know how all persons involved and especially the…
ID
Source
Brief title
Condition
- Neurological disorders congenital
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
1. What are the experiences of parents concerning the decision-making process
leading to the active termination of the life of their child?
2. Do the experiences of parents who agreed to the active termination of the
life of their child differ form the experieces of parents who did not agree?
3. What are the experiences of parents concerning the decision-making process
leading to a positive advise to start treatment?
Secondary outcome
none
Background summary
Between 1992 and 2004 214 neonates with spina bifida were referred to the
Wilhemina Children's Hospital in Utrecht. When a neonate is admitted, all
members of the spina bifida team perform physical examinations and additional
examinations following a protocol during some days. An advise for treatment is
proposed to the parents in a several meetings.
Sometimes a negative advise is given. When parents agree after a period of
reflection, an active termination is proposed. When parents do not agree
treatment is started.
In 1997 the report *Toetsing als Spiegel van de Medische Praktijk* by the
Ministry of Welfare, Health and Cultural Affairs came out. The report contains
recommendations concerning requirements of carefulness that are to be taken
into account when decisions about stopping or not starting treatment or
end-of-life decisions are being made. These requirements form the theoretical
basis for this study. However, they leave space for the own judgement of the
physician and for contribution by the parents. The guidelines are not clear.
There is a need for more knowledge about decision making by physicians and
parents.
Study objective
By studying in which cases what decisions has been made we hope to get more
insight into the interpretation of the requirements of the Ministry in everyday
practise. Furthermore, it is important to know how all persons involved and
especially the parents look back upon the procedure and decision-making in the
Wilhelmina Children*s Hospital.
Study design
A descriptive study will be used to document the medical situation, the
socio-economic status and the result of the decision-making process of all
children (44) that were given a negative advise (regardless of the agreement of
the parents) and of a sample of the children (108) given a positive advise.
Also, the parents are interviewed in an structured manner.
Study burden and risks
We expect parents to relive a difficult period of their past life. By our high
demands on the qualifications of the interviewer we tried to keep the emotional
burden as low as possible. When parents get psychological problems after all,
the study team will take care of the treatment of those problems.
Postbus 85090
3508 AB Utrecht
Nederland
Postbus 85090
3508 AB Utrecht
Nederland
Listed location countries
Age
Inclusion criteria
parents of neonates with spina bifida, born between 1992 and 2004 and treated by the spina bifida team in UMC Utrecht
Exclusion criteria
other malformations than spina bifda
and children with spina bifida sent to the hospital as a second opinion at an older age (> 2 months)
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL12330.041.06 |