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Disabil Rehabil. 2009;31(22):1828-34. doi: 10.1080/09638280902822286.

Perceptions of family participation among parents of children with cerebral palsy followed from infancy to toddler hood.

Author information

1
Rehabilitation Centre De Hoogstraat, Centre of Excellence for Rehabilitation Medicine Utrecht, The Netherlands. i.rentinck@dehoogstraat.nl

Abstract

BACKGROUND:

Little is known about the way parents of children with cerebral palsy (CP) perceive their involvement in family and personal life situations, also called 'family participation'.

PURPOSE:

To investigate the perception of family participation among parents of preschool children with CP.

METHOD:

Semi-structured interviews were used to describe how parents (n=53) of children with CP (aged 18 months) perceive participation with respect to family activities and their personal activities. In addition, using a combined score of family and personal activities, we investigated the changes of parental (n=36) perceived family participation over time (followed from 18 months onwards until 42 months of age).

RESULTS:

At the child's age of 18 months, a substantial percentage of parents expressed a feeling of being restricted in their family activities (45%) or personal activities (53%). The longitudinal data show that over the 24-month follow-up significant more parents perceived to be restricted in family participation (p = 0.008; Cochran's Q test).

CONCLUSIONS:

A child with CP in a family may lead to parents perceiving restrictions in family participation. These restrictions arise early in the life of a child with CP and may become more prominent as the child grows older.

PMID:
19479504
DOI:
10.1080/09638280902822286
[Indexed for MEDLINE]

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