Heart 1998;80:286-291 ( September )
Severe brain injury after cardiac surgery in children: consequences for the family and the need for assistance
a Clinical Audit
Department, Royal Brompton Hospital, Sydney Street, London SW3 6NP, UK, b Department of Paediatric
Cardiology, Royal Brompton Hospital
Correspondence to: Dr Shinebourne.
Accepted for publication 30 March 1998
Objective
To
identify the short and longer term needs of parents whose children
sustain severe brain injury after cardiac surgery and to determine what
further measures could be of use to the family after such a catastrophe.
DesignQualitative
analysis of data generated by semistructured interviews and a series of
self report questionnaires.
SettingTertiary
cardiothoracic referral centre.
SubjectsGroup 1: four
sets of parents (eight individuals) whose children had suffered severe
brain injury after heart surgery; group 2: four sets of parents (seven
individuals) caring for children with acute brain injury from other causes.
ResultsThe data
provide evidence of social, emotional, physical, practical, and
financial difficulties. After the children suffered brain injury
following cardiac surgery their parents did not receive information,
support, and practical assistance as early as they needed it.
ConclusionsAlthough a
small population was studied, it would seem that a structured, planned
health care service response to this devastating event is not
established; therefore, the needs of these parents are not well met.
The parents and our inquiries suggest that a coordinator who is not
attached to the hospital where brain injury occurred might optimally
fulfil this role.
© 1998 by Heart
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