Marjolijn Ketelaar

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

To investigate the relations between changes in motor capacity (can do, in standardized environment), motor capability (can do, in daily environment), and motor performance (does do, in daily environment) among children with cerebral palsy (CP). Prospective longitudinal study. After baseline measurements (at the age of 18 mo, 30 mo, 5 y, 7 y, 9 y, 11 y, or 13 y), 2-year follow-up measurements were performed. Change scores were calculated, and Pearson correlations were used for change score relations. Outpatient clinic. Toddlers, school-age children, and adolescents with CP (N=321; 200 boys, 121 girls). Levels of severity according to the Gross Motor Function Classification System included level I (42%), level II (15%), level III (17%), level IV (13%), and level V (13%). Not applicable. Change in motor capacity was assessed with the Gross Motor Function Measure-66. Changes in motor capability and motor performance were assessed with the Pediatric Evaluation of Disability Inventory us...

To (1) determine the long-term trajectory of health-related quality of life (HRQOL) for the dimensions of physical complaints and motor, psychological, and social functioning for groups of individuals with cerebral palsy (CP) aged 1 to 24 years; (2) assess the variability in HRQOL within individuals with CP over time; (3) assess the variability in HRQOL between individuals with CP; and (4) compare the HRQOL in individuals with CP to reference data of typically developing individuals. Multicenter prospective longitudinal study. Rehabilitation departments of 3 university medical centers and various rehabilitation centers in The Netherlands. Dutch individuals with CP (N=424; age, 1-24y). Not applicable. The HRQOL dimensions of physical complaints and motor, psychological, and social functioning. Each individual visited the rehabilitation department for 3 or 4 measurements. The time between measurements was 1 or 2 years. Individuals with CP experience an HRQOL that, on average, remains fairly stable over time. Variability in HRQOL within individuals with CP was similar to that within typically developing individuals. Variability between individuals with CP could be explained by type of CP (motor functioning), Gross Motor Function Classification System level (physical complaints and motor and social functioning), and intellectual disability (physical complaints and social functioning). Finally, individuals with CP experienced a lower HRQOL than did typically developing individuals, especially for the dimensions of motor and social functioning. Many changes take place in the psychosocial development of the individual with CP, which accordingly change their expectations and those of their caregivers, peers, and professionals. As a result, perceived physical complaints and motor, psychological, and social functioning remain fairly stable over many years.

A major focus of rehabilitation is that of optimizing patients' activities. Learning and teaching are key elements in this respect, but raise important questions: what do rehabilitation professionals know with respect to learning and teaching, what do they do, and what do they need? This paper discusses the issue of learning and teaching in rehabilitation practice, and introduces the concept of learning styles. This concept, new in the field of rehabilitation, but well-known in other areas, is presumed to benefit both patients and professionals, as it allows teaching strategies to be matched to individual patients. As a consequence, the process of learning may be more efficient and optimizing activities may be more effective.

To investigate parental reactions following the diagnosis of cerebral palsy (CP) in their young children. In this cross-sectional study, 51 parents of children with CP (mean age = 18.5 months, SD = 1.5) completed the Reaction to Diagnosis Interview, assessing their personal reactions to their children's diagnosis. Relationships between these reactions and the severity of CP in terms of motor abilities and the child's cognitive functioning, as well as coping of parents and perceived social support, were investigated using univariate and multivariate logistic regression analyses. Thirty-nine parents (77%) were classified as "resolved." Multivariate regression analysis revealed that severity of CP was associated with an "unresolved" status. The majority of parents of children with CP have come to terms with this diagnosis by the time their children is 18 months old. The child's gross motor limitations seem to represent an important factor explaining negative parental reactions at this time.