AIM The aim of this study was to investigate the acquisition of self-care and mobility skills in children with cerebral palsy (CP) in relation to their manual ability and gross motor function.METHOD Data from the Pediatric Evaluation of Disability Inventory (PEDI) self-care and mobility functional skill scales, the Manual Ability Classification System (MACS), and the Gross Motor Function Classification System (GMFCS) were collected from 195 children with CP (73 females, 122 males; mean age 8y 1mo; SD 3y 11mo; range 3-15y); 51% had spastic bilateral CP, 36% spastic unilateral CP, 8% dyskinetic CP, and 3% ataxic CP. The percentage of children classified as MACS levels I to V was 28%, 34%, 17%, 7%, and 14% respectively, and classified as GMFCS levels I to V was 46%, 16%, 15%, 11%, and 12% respectively. RESULTS Children classified as MACS and GMFCS levels I or II scored higher than children inMACS and GMFCS levels III to V on both the self-care and mobility domains of the PEDI, with significant differences between all classification levels (p<0.001). The stepwise multiple regression analysis verified that MACS was the strongest predictor of self-care skills (66%) and that GMFCS was the strongest predictor of mobility skills (76%). A strong correlation between age and self-care ability was found among children classified as MACS level I or II and between age and mobility among children classified as GMFCS level I. Many of these children achieved independence, but at a later age than typically developing children. Children at other MACS and GMFCS levels demonstrated minimal progress with age.
Self-reported walking ability improved after multilevel surgery and intensive rehabilitation. This result was partly supported by lower energy cost and improved HRQOL. Expectations and satisfaction were fulfilled for the majority of children.
There were no major differences in outcome and expectations between the training programmes. Parents' expectations were mainly directed towards improvement in prerequisites of motor function and mobility skills. The SRIGM confirmed the outcome on the CM.
No major differences were shown between the 2 training programmes. One intensive training period facilitated small improvements in gross motor function. The majority of children had a high consumption of training during the 1-year follow-up and the added value of repeated intensive training periods was limited.
Findings suggest that there is an increased risk for children with functional disabilities other than hearing disabilities in northern Sweden to experience difficulties in various health domains and lowered general health.
This study explored parents' perceptions of the service quality of two intensive training programmes and the association between perceived service quality and predefined influential factors. Parents of 31 males and 19 females with spastic, dyskinetic, and ataxic cerebral palsy (mean age 8y 7mo [SD 3y 7mo]; range 3-16y), and Gross Motor Function Classification System Level I n=1; Level II n=9; Level III n=8; Level IV n=20; and Level V n=12 were included. Functional outcome had been evaluated previously with the clinical measures Gross Motor Function Measure-88, the Pediatric Evaluation of Disability InventoryFunctional Skills, and the Self-reported Individualized Goal Measure, before and after a 4-week intensive training period (ITP). The two training programmes used were Lemo and Move&Walk. After the ITP, a telephone interview was performed with the same cohort, using the Patient perspective On Care and Rehabilitation process. Data on previous experiences, expectations, and severity of disability were collected before the ITP, and data on achieved expectations afterwards. Previous experiences of the training programme, high expectations of improvements, achieved expectations, gross motor capacity improvements, and intensive training at the child and youth rehabilitation centre were associated with increased probability of fulfilment of needs. Severity of disability was associated with decreased probability of fulfilment of needs and functional improvements. Most parents perceived high service quality, and achieved expectations were influenced by high service quality rather than by perceived functional improvements. This suggests that needs other than functional improvements must be explained and acknowledged.The influence of cerebral palsy (CP) on the functioning of the child is highly variable and gives rise to multiple health care needs. [1][2][3] It is generally thought that the child's needs should be seen in the context of the family and should be defined from the perspectives of both the family and the child in collaboration with health care providers. 4,5 The concept of familycentred services, as opposed to a provider-centred approach, is widely accepted and considered the best way to meet different needs. 4,6 When using a family-centred approach, quality evaluations are needed that measure aspects of the process as well as health and functional outcome. 4,7-9 Service quality could be seen as a measure of parents' perceptions of the rehabilitation process; i.e., the performance of health care providers in meeting value-based needs considered to represent important health care needs. 8 To take into account both professional and family perspectives on functional outcomes, traditional clinical measures should be complemented by measures of self-reported individualized goals. 4 Quality evaluations can help parents to make informed choices about which service to use and can help professionals to adapt intervention programmes to the needs of the child and family, thereby constituting a consumer influence on the...
Cerebral palsy (CP) is associated with cognitive impairments, learning difficulties and reduced social participation. Individual assessment is necessary for individually tailored interventions. This paper describes the development of a systematic follow-up programme of cognition, and the challenges of integrating it into the regular follow-up of children with CP. Initiated by the Nordic users' organisations, a group of psychologists proposed a protocol of follow-up of cognition in children with CPthe CP Cog. This protocol consists of neuropsychological instruments covering general cognitive functioning, visuospatial and executive functioning. The article presents a natural experiment describing development and implementation of the cognitive protocol in three Scandinavian countries. This introduction illustrates challenges associated with implementation, especially how the success of the protocol hinges on structural backup within the different countries. In conclusion the CP Cog assessment protocol holds the promise of increasing the awareness among habilitation professionals that children with CP are in need of cognitive evaluation and educational support.
Purpose:The aim was to explore what wants and needs intensive group training (IGT) fulfil for parents to children with CP and what problems that may arise due to participation. Methods:A phenomenograpical approach was used. Semi-structured interviews were conducted to elicit information about what participation means to parents. Results: Five overarching categories expressing positive functions of IGT were identified: IGT as knowledge promotion, as a complementary training resource, as a bracket to ordinary life, as a means to promote relations with therapists, and as a leisure-activity. One category: IGT as risk for ill-being expresses perceived problems. Each category is in turn divided into a number of subconceptions -13 conceptions of this kind were identified. Conclusions: The conceptions express positive and negative functions of IGT as perceived by parents. These functions in turn can be considered as reflections of basic wants and needs. The results demonstrate that IGT have a potential to contribute to feelings of enhanced care competence among parents, of being supported and of increased strength and vitality. All parents didn't have needs of participation in IGT for themselves. There is also a risk that IGT is experienced as an additional burden and may have negative effects on family-functioning.Key words: Cerebral Palsy, Therapeutics, Qualitative research, Conductive Education, Intensive group trainingIn family-centered child and youth habilitation it is believed that the functioning of the child is enhanced in a supportive family and in an ordinary life context [1,2]. Different functional therapy approaches, based on theories of motor control and learning, have evolved within this framework. These approaches do not rule out training in segregated settings adapted for training acitivities, but commonly advocate that habilitation should take place in the ordinary enviroment of the child [3][4][5]. Goals should be set in collaboration with the child and family and accomplishment of tasks should be reached by identifying resources and changing constraints in the child, task, or the environment [5][6][7].Within the Swedish child and youth habilitation intensive group training (IGT) is offered to children with Cerebral Palsy (CP) and their parents. IGT is pursued in segregated contexts and is considered to be a complement to interventions done in the ordinary life environment. Such training is also offered by private caregivers working with conductive education (CE).Typically, IGT help children exercise functional skills or prerequisites for functional skills over a 3-4 week period, with reiteration of movements and activities day after day. The groups are organized according to the child's level of function and age. Participation of parents, close relatives, and/or assistants is desirable or required and is seen as a means to improve their skills in supporting the child in ordinary life. An important target with interventions is to enhance parents' well-being [8] and feelings of competence in supporting...
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