[tri-med] FYI - Acknowledging the extra care parents give their disabled children

I am forwarding this article or URL for your information (FYI) as I believe
it may be of interest and is from a reliable source. As always, check the
information with your own doctor or health care professional before starting
or changing any treatments.

http://www.blackwell-synergy.com/Journals/content/abstracts/cch/2001/27/4/ab
stract_cch178.asp?journal=cch&issueid=6010&artid=114107&cid=cch.2001.1&ftype
=abstracts

Child: Care, Health and Development 27 (4), 307-319
© Blackwell Science Ltd

Acknowledging the extra care parents give their disabled children
K Roberts and and D Lawton

Social Policy Research Unit, University of York, Heslington, York, UK




Summary
Around 150 000 families in the UK care for a severely disabled child under
the age of 16. Many of these families receive assistance from the Family
Fund Trust, which provides grants and information relating to the care of a
severely disabled child. The aim of this study was to identify patterns of
extra care needs among severely disabled children known to the Trust. Extra
care needs are requirements for care not experienced by similarly aged
non-disabled children. The research comprised analysis of 40 000 records
from the Trust database and qualitative exploration of the extra care needs
of disabled children with parents and Trust staff. Although all children
require parenting, the care parents give disabled children generally exceeds
that given to a non-disabled child. Quantitative analysis showed that the
majority of children in the sample required extra assistance or supervision
with multiple areas of daily life. With each of five activities (washing,
dressing, meal times, during the night and keeping occupied), >70% of
children needed extra help and, on average, each child needed extra help or
supervision in six areas of daily life. Cluster analysis indicated
distinctive combinations of extra care needs. Qualitative material indicated
variety in extra care tasks undertaken (physical help, supervision,
guidance) and causal factors (physical limitations, cognitive difficulties,
behavioural problems). The findings confirm that severely disabled children
have considerable extra care needs in many areas of daily life. Parents want
professionals to recognize and offer explicit acknowledgement of the extra
care they give their disabled children.



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