Article

PURPOSE: To assess healthcare use and family perception of family-centred care in
children and young adults with severe cerebral palsy (CP) within a geographical
region of the UK. METHOD: Young people (4-27years) with severe forms of CP; Gross
Motor Function Classification System levels IV and V, were recruited via an
established case register. Data were collected in the participant's home using a
standardised background proforma and validated questionnaires. The Measure of
Processes of Care was used to assess the family's perception of family-centred
care. RESULTS: One-hundred and twenty-three children, young people and their
families/guardians participated. Results showed high accessing of specialist
services in childhood with a considerable decrease in young adults. Use of
generalist services remained relatively constant. The reported use of formal
respite services and support groups/youth clubs was relatively poor.
Family-centred care was poor in the area of "providing general information" (2.8
+/- 1.73) but more moderate in the areas of "providing specific information about
the young person" (4.2 +/- 1.94), "enabling and partnership" (4.2 +/- 1.9),
"co-ordinated and comprehensive care" (4.3 +/- 1.95) and "respectful and
supportive care" (4.7 +/- 1.75). CONCLUSIONS: The accessing of specialist
services and respite care notably decreases amongst adolescents with severe forms
of CP and the perception of family-centred care amongst families was fair at
best. In particular, the results highlight the need for families to be provided
with more general information and advice. Implications for Rehabilitation In a
quest to enhance the rehabilitation process in young people with severe forms of
cerebral palsy: Commissioners and service providers need to a adopt a more
rationalised, needs led approach to service provision across the lifespan of
people with severe forms of cerebral palsy, to include an effective and efficient
transitional period. Habilitation specialists working with young adults need to
continue to recognise the importance of family-centred care in managing this
complex and chronic condition. Professionals working within the healthcare system must provide better communication and improve their dissemination of information to the families of children and young people with complex needs.

Langue : ANGLAIS