Changing needs for children and adults with spina bifida and hydrocephalus in Northern Ireland
Authors: Marie McGonnell
Background
The needs of persons born with spina bifida (SB) and /or
hydrocephalus (H) may change with age. The Association for
Hydrocephalus and Spina Bifida (ASBAH) has in response to this
sought the views of persons with SB and /or H on its Northern
Ireland database, to identify what the different needs may
be. The results indicate that with the transition from
childhood to adulthood there is a change in the perceived need.
Materials and Methods
Postal questionnaire sent out from ASBAH to all persons with SB
and /or H on its Northern Ireland database
Results
770 questionnaires were distributed and 134 (17%) were
returned. 98 adults (M:F 45:51) and 36 children (M:F 18:18)
responded. The main issues raised by the adults were personal
care and support 12.5%, problems with accessibility 12.5%,
increased benefits/better income 15%, transport difficulties 20%,
finding employment 5%, help socialising 12.5% and adaptations and
equipment 10% Within the children's responses, the main
issues identified were personal care and support 17%, problems with
accessibility 17%, increased benefits 17%, transport 17%, better
medical care 10%, lack of friends 10%, help socialising 6%,
and adaptations and equipment 6%. In both groups these
needs were identified as areas where study days would be of benefit
to both children, their parents and to adults.
Conclusions
This survey confirms that as persons born with SB and /or H move
from childhood to adulthood there is a perceived change in their
needs that has to be addressed. The changing need is a
reflection of the difficulties in maintaining a position within
society when born with SB and /or H. It identifies areas
where services should meet this changing need
Medical Adviser, Association for Spina Bifida and
Hydrocephalus, PO Box 132, Cushendall, County Antrim,
BT44 0WA
E-mail mariem@asbah.org
