Are family-centred principles, functional goal setting and transition planning evident in therapy services for children with cerebral palsy?

BACKGROUND: Family-centred service, functional goal setting and co-ordination of a child's move between programmes are important concepts of rehabilitation services for children with cerebral palsy identified in the literature. We examined whether these three concepts could be objectively identified in programmes providing services to children with cerebral palsy in Alberta, Canada. METHODS: Programme managers (n= 37) and occupational and physical therapists (n= 54) representing 59 programmes participated in individual 1-h semi-structured interviews. Thirty-nine parents participated in eleven focus groups or two individual interviews. Evidence of family-centred values in mission statements and advisory boards was evaluated. Therapists were asked to identify three concepts of family-centred service and to complete the Measures of Process of Care for Service Providers. Therapists also identified therapy goals for children based on clinical case scenarios. The goals were coded using the components of the International Classification of Functioning Disability and Health. Programme managers and therapists discussed the processes in their programmes for goal setting and for preparing children and their families for their transition to other programmes. Parents reflected on their experiences with their child's rehabilitation related to family-centredness, goal setting and co-ordination between programmes. RESULTS: All respondents expressed commitment to the three concepts, but objective indicators of family-centred processes were lacking in many programmes. In most programmes, the processes to implement the three concepts were informal rather than standardized. Both families and therapists reported limited access to general information regarding community supports. CONCLUSION: Lack of formal processes for delivery of family-centred service, goal-setting and co-ordination between children's programmes may result in inequitable opportunities for families to participate in their children's rehabilitation despite attending the same programme. Standardized programme processes and policies may provide a starting point to ensure that all families have equitable opportunities to participate in their child's rehabilitation programme.

How well are we doing? Families of adolescents or young adults with cerebral palsy share their perceptions of service delivery.

PURPOSE: The satisfaction of families of adolescents and young adults with a diagnosis of cerebral palsy with the service delivery they had experienced in the areas of health, education, recreation, employment, housing and transportation was examined. Common themes across the six service areas were identified. METHOD: Forty-nine adolescents (13-15 years) and 39 young adults (19-23 years) and their families rated their satisfaction with services and then participated in semi-structured interviews to discuss their experiences. RESULTS: Using a constant comparative method of analysis, common themes were identified from the transcribed interviews. Four themes were identified and named: caring and supportive people; fighting and fatigue; communication/information; and disability awareness. CONCLUSIONS: Families continue to experience dissatisfaction and frustration with service delivery in the six areas examined. Both bureaucratic structure and attitudes of service providers contribute to their dissatisfaction.

Changing philosophical perspectives on the management of children with physical disabilities--their effect on the use of powered mobility.

PURPOSE: Over the past decade, the emergence of a new philosophical framework has influenced approaches to service delivery in paediatric rehabilitation. Traditional approaches focused on the attainment of typical movement patterns as the ultimate goal of intervention. By contrast, contemporary approaches to intervention encourage children with physical disabilities to use their most efficient movement strategies to explore their environment and participate in meaningful activities. METHODS/RESULTS: Factors that facilitated this change in approaches to intervention are explored and include: the disability movement; the evolution of models of disablement; the shift from a medical model to a family-centred model of health care service provision; the emergence of a new theory to explain motor development and increased availability and quality of assistive technology. CONCLUSION: The clinical implications of this philosophical shift for the use of powered mobility with children with physical disabilities are explored. A collaborative approach to working with families throughout the process of selecting mobility options for their children is discussed.

Are families with adolescents and young adults with cerebral palsy the same as other families?

This study compared adolescents with cerebral palsy (CP) and their families to adolescents without physical disabilities and their families as the child enters and leaves adolescence (age ranges 13 to 15 years and 19 to 23 years). Families of 90 individuals with CP (42 females, 48 males) and 75 individuals without physical disabilities (34 females, 41 males) participated. They completed the Family Assessment Device, Life Situation Survey, Multidimensional Scale of Perceived Social Support, and Future Questionnaire. There were few differences in family functioning, life satisfaction, or perceived social support between the groups. Expectations of young adults with CP and parents of both adolescents and young adults regarding future independence and success were lower than the expectations of the control group. While the group results emphasize similarities between families during the two stages of adolescence, individual families and individual family members report specific challenges.

Inter-rater reliability of formally trained and self-trained raters using the Edmonton Functional Assessment Tool.

The primary objective of this study was to determine the inter-rater reliability of the revised version of the Edmonton Functional Assessment Tool (EFAT-2). A second objective was to determine whether both formally trained and self-trained therapists had an acceptable level of inter-rater reliability. The EFAT-2 was administered to consenting palliative care patients by one of two independent physical therapist rater pairs; one pair self-trained (R1, R2) and the other formally trained (R3, R4). The intraclass correlation [ICC (1,1)] for R1, R2 was 0.97 [95% confidence interval (CI) 0.94-0.99] and for R3, R4 was 0.95 (95% CI 0.90-0.98). The standard error of measurement was 1.09 and 1.44, respectively. The Kappa statistic for the rater pairs on individual EFAT items ranged from 0.17 to 0.96. The results suggest that both formally trained and self-trained therapists obtain an acceptable level of inter-rater reliability when using the EFAT-2.

Intra-individual stability of rate of gross motor development in full-term infants.

The purpose of this study was to evaluate the intra-individual stability of gross motor scores obtained by normally developing full-term infants on the Alberta Infant Motor Scale (AIMS). The gross motor skills of 47 infants were assessed monthly in their homes by pairs of physical therapists. Infants were followed from two weeks of age until they achieved independent walking. A developmental pediatrician assessed each infant at 18 months of age, and classified the infant's gross motor skills as normal, suspicious or abnormal. Only the data of infants receiving a normal classification at 18 months were included in the analyses (n = 45). Individual infants' percentile ranks varied considerably from month to month, with no systematic pattern of change noted across infants. As a group, the mean percentile range over 13 assessments was 66.78 (S.D. 13.47). Fourteen infants (31.1%) received a score below the 10th percentile on at least one occasion. The results suggest that normally developing infants are not stable in the rate of emergence of gross motor skills. This instability has implications for infant screening programs, and supports the premise of serial assessments to identify accurately those infants with a motor delay.

Assessment of gross motor skills of at-risk infants: predictive validity of the Alberta Infant Motor Scale.

The Alberta Infant Motor Scale (AIMS) is a norm-referenced measure of infant gross motor development. The objectives of this study were: (1) to establish the best cut-off scores on the AIMS for predictive purposes, and (2) to compare the predictive abilities of the AIMS with those of the Movement Assessment of Infants (MAI) and the Peabody Developmental Gross Motor Scale (PDGMS). One hundred and sixty-four infants were assessed at 4 and 8 months adjusted ages on the three measures. A pediatrician assessed each infant's gross motor development at 18 months as normal, suspicious, or abnormal. For the AIMS, two different cut-off points were identified: the 10th centile at 4 months and the 5th centile at 8 months. The MAI provided the best specificity rates at 4 months while the AIMS was superior in specificity at 8 months. Sensitivity rates were comparable between the two tests. The PDGMS in general demonstrated poor predictive abilities.

Early predictors of functional independence 2 years after spinal cord injury.

OBJECTIVE: To determine: (1) how well factors measured at admission to an acute care facility predict functional independence measure (FIM) scores, use of personal care assistance, and wheelchair ownership 2 years after traumatic spinal cord injury (SCI); (2) the extent that factors measured during inpatient stay add to these predictions; and (3) if FIM scores differ through use of assistance and wheelchair ownership 2 years after SCI. DESIGN: Prospective, longitudinal. SETTING: Tertiary care acute, rehabilitation hospitals and home settings. PATIENTS: One hundred sixty SCI admissions. MAIN OUTCOME MEASURES: FIM, use of personal care assistance (yes/no), and wheelchair ownership (manual/electric/none) 2 years after SCI. RESULTS: Year 2 FIM scores were highly correlated (> or = .68) to the ASIA admission and discharge light touch, pin prick, and motor scores. Admission neurological status and age accounted for 65% of year 2 FIM score variance. Adding hospital events and the discharge ASIA motor score increased prediction to 76% of the variance. A separate regression model using only year 2 neurological scores and age accounted for 73% of the total FIM variance. Discriminant function analysis indicated 86% correct classification regarding use of personal care assistance and 88% correct classification of wheelchair ownership. Using a separate cross-validation sample, overall classification accuracy for assistance was 80% and wheelchair ownership 67%. FIM scores were significantly lower in assistance users (78 +/- 24) than nonusers (120 +/- 8) and were significantly different between wheelchair ownership groups: manual (103 +/- 21), electric (61 +/- 15), and none (125 +/- 2). CONCLUSIONS: Late disability can be predicted using early impairment measures. The FIM prediction from variables measured during the early treatment phase was as good as prediction based on concurrent measures.

The use of waterbeds for very low-birthweight infants: effects on neuromotor development.

One hundred and seven infants aged < 32 weeks of gestation were stratified according to birthweight and randomly assigned to either a waterbed group (N = 53) or a mattress group (N = 54). All the infants were assessed on removal from the surface: 68 infants at 40 weeks gestation and 52 infants at four, eight, 12 and 18 months adjusted age. At the 18-month assessment, outcome was classified as normal, suspicious or abnormal. There were no significant differences between the groups at any age. The results suggest that the use of the waterbed as a positional surface in the neonatal intensive-care unit has no influence on the motor development of very low-birthweight infants.

Construction and validation of the Alberta Infant Motor Scale (AIMS).

The Alberta Infant Motor Scale (AIMS), an observational assessment scale, was constructed to measure gross motor maturation in infants from birth through independent walking. Based upon the literature, 58 items were generated and organized into four positions: prone, supine, sitting and standing. Each item describes three aspects of motor performance--weight-bearing, posture and antigravity movements. Content validation of the instrument was accomplished through a mail survey of Canadian pediatric physical therapists and consultation with an international panel of experts. Five hundred and six infants, age-stratified from birth through 18 months, participated in the reliability and validity testing of the AIMS. In addition, 20 infants who were experiencing abnormal motor development and 50 infants at risk for motor disorders were assessed and compared with the results of the full-term sample. Results to be presented include: 1) test-retest and inter-rater reliability estimates; 2) correlations between the AIMS and the Bayley and Peabody motor scores; and 3) scaling of the items along the age continuum for normal motor development.

Early developmental screening: sensitivity and specificity of chronological and adjusted scores.

The motor development of 75 preterm infants was assessed at 4 months chronological and 4 months adjusted ages using the Movement Assessment of Infants (MAI). Infants were followed until 18 months old when neurological and motor outcomes were assessed by a developmental pediatrician, and outcomes were classified as normal, suspicious, or abnormal. Sensitivity, specificity, and positive and negative predictive values were calculated at the two points in time using a variety of cutoff MAI scores. At 4 months, the practice of adjusting for prematurity resulted in the better combination of screening rates for the detection of both neurologically abnormal and neurologically abnormal/suspicious children. To obtain comparable rates, different cutoff MAI scores were used to identify the neurologically abnormal versus the neurologically abnormal/suspicious children. The optimal combination of sensitivity, specificity, positive and negative predictive values varies according to the age of assessment, the disorders being identified, and the cutoff scores employed.

Serial magnetic resonance imaging in neonatal hypoxic-ischemic encephalopathy.

We prospectively performed magnetic resonance imaging (MRI) studies during the neonatal period, and at 4 and 8 months of age, on 15 term infants with hypoxic-ischemic encephalopathy, and compared the results with their neurodevelopmental outcome at 18 months of age. Cerebral palsy developed in nine infants, two infants were classified as having abnormalities of tone and delayed motor milestones that were suggestive of cerebral palsy, and four infants were normal. Structural abnormalities, delayed myelination, or a combination of the two were detected with MRI at 8 months of age in all nine infants with later development of cerebral palsy. Three of the four normal infants and one infant with suggestive abnormalities had normal serial MRI findings. Each of the remaining two infants (one normal, one with suggestive abnormalities) had isolated persistent ventricular dilation on all three MRI studies. Our results suggest that 8 months appears to be the earliest time at which MRI findings correlate well with later adverse neurodevelopmental outcome in this population.