Possible predictive factors by ICF component at baseline.

Possible predictive factors by ICF component at baseline.

Source publication
Article
Full-text available
Purpose: To determine childhood predictors of participation in domestic life and interpersonal relationships of young adults with cerebral palsy (CP). Materials and methods: This 13-year follow-up of an existing cohort (baseline age 9–13 years) included 67 young adults with CP (age 21–27 years). The Vineland adaptive behavior scales (VABS) and Life...

Contexts in source publication

Context 1
... experienced by 33% of individuals, with a mean score of 8.6 (2.0) on the Life-H. Table 2 presents the (modelled) baseline factors. Within each ICF component, the significant predictors are presented for each of the four participation outcome measures. ...
Context 2
... present results and interpretations focused on the strongest childhood activity and participation factors only, although several subdomains were strongly associated with the outcomes. The results categorised by ICF domain of the activity and participation component can provide additional insight into these other associations (Table 2). Finally, it should be noted that our analyses cannot ascertain causal relationships, and intervention studies are needed to determine whether rehabilitation treatment aimed at improving motor capacity, activity and participation in childhood indeed results in improved participation as a young adult. ...

Similar publications

Article
Full-text available
Intellectual disability (ID) affects the functioning of adaptive behavior and social skills (SS). One way to increase SS can be through parental involvement, as long as parents have sufficient educational social skills (ESS) to favor SS teaching. The objective was to evaluate and compare the ESS of parents of children with and without ID, and to in...

Citations

... Phipps et al. [44] reported that more severe levels of gross motor dysfunction resulted in lower levels of self-care, mobility, and social function and in increased levels of caregiver assistance. Gorp et al. [45] stated that lower motor capacity predicted decreased future participation of social activity in children with CP. Similarly, the present study showed that children with higher gross motor function levels were more physically active and social. ...
Article
Full-text available
Objective To investigate the effects of fatigue, gross motor function, and gender on participation in life situations of school-aged children with cerebral palsy (CP) from a parental perspective. Methods The study included 209 children with CP aged between 5 and 13 years (mean age, 8.06 ± 2.41 years; girls, 45.5%) and their parents. Fatigue, gross motor function, and participation status were evaluated with the Pediatric Quality of Life (PedsQL), Gross Motor Function Classification System (GMFCS), and the Assessment of Life Habits (Life-H) questionnaire, respectively. The effects of fatigue, gross motor function, and gender on participation were investigated with linear regression analysis. Results According to parental reports, 79.9% of the children had fatigue. Children in all GMFCS levels experienced fatigue. Fatigue and GMFCS levels were dependent variables, and therefore only simple linear regression analyses were performed. Fatigue explained 38–43% of the variances in daily activities, social roles, and total Life-H scores, while gross motor function explained 48–65% of the variances in scores (p < 0.001). Gender had no effect on participation scores (p > 0.05). Conclusion More than two thirds of the school-aged children with CP had fatigue. Fatigue and poor gross motor function had a negative effect on participation in daily activities and social roles.
... From balance to locomotion to fine motor tasks like drawing, grasping, or cutting food, children grow, learn, and improve their performance continuously. Children with CP who have limited motor capacity and manual ability are at risk for restrictions in participation in domestic life and interpersonal relationships in adolescence and adulthood [11]. ...
Article
Full-text available
Purpose: Motor learning interventions for children with cerebral palsy (CP) that elicit relatively permanent and transferable improvements in motor skill capability are essential. Knowledge is needed about the augmented feedback forms that most effectively promote this. This review aims to collect and analyze the current evidence for the effectiveness of different forms of feedback for motor learning in children with CP to improve motor task performance. Methods: PubMed, PsycInfo, and Cochrane Library were searched to identify relevant studies. Studies were included if (1) they were conducted in children with CP or compared children with CP to TD children and (2) a form of augmented feedback related to a motor task was administered. Results: Initially, 401 records were identified for screening. Ultimately, 12 articles were included in the review. The evidence thus far supports the expectancy that children with CP generally benefit from feedback provided during or after performing a movement task. Conclusion: Due to the heterogeneity of existing studies, it is difficult to draw firm conclusions regarding relative effectiveness of feedback forms. This review showed that more high-quality research is warranted on the effectiveness of specific feedback forms on motor learning in children with CP.Implications for RehabilitationChildren with CP benefit from several forms of knowledge of performance or knowledge of results feedback provided during or after performing a movement task.Feedback should not be provided with every performed trial.Feedback frequency can best be reduced by letting children determine after which trials they want feedback.Learning curves under similar feedback conditions varied largely between children, warranting tailor-made forms of feedback to be applied during motor learning and rehabilitation.
... Furthermore, children with CP are excluded from participation in activities of daily living from an early age, mainly due to their disabilities in the motor condition (Barna et al. 1980). This situation may lead to the development of egocentric behaviors and deficient social skills, which in turn may induce social isolation, victimization, and less friendships, sociability and leadership in these children (Stang et al. 2020;van Gorp et al. 2019;Whitney et al. 2019;Voyer et al. 2018;Lindsay and McPherson 2012;Vles et al. 2012;Nadeau and Tessier 2009;Imms 2008). According to this view, almost 50% of individuals with CP have shown social and emotional disorders that require mental health specialized attention (Levy-Zaks et al. 2014;Parkes et al. 2008;Nadeau and Tessier 2006;Adegboye et al. 2017;Goodman and Graham 1996;Weber et al. 2016). ...
Article
Full-text available
Emotion knowledge has not been explored in children with cerebral palsy (CP). To evaluate differences in emotion knowledge between children with CP and their typically developing peers (TDP), and explore its associations with affective regulation and behavioral psychopathology. 36 Children with CP and 45 TDP completed the Emotion Matching Task (emotion knowledge); their parents completed the Emotion Regulation Checklist and Child Behavior Checklist (emotional regulation and lability; psychopathological behaviors). Children with CP made more mistakes in emotion knowledge tasks, had lower emotional regulation and higher behavioral problems than their TDP. Emotion knowledge showed a positive correlation with emotional regulation and a negative correlation with behavioral problems, predicting psychopathological behaviors. Greater attention to emotion knowledge in children with CP could improve adjustment at social and behavioral functioning.
... 4 Known determinants of functioning of people with CP are the level of gross motor functioning, manual ability, speech impairments, and intellectual functioning. 5,6 Intellectual disability is present in about 49% to 51% of children and adolescents with CP. 7,8 Intellectual disability limits daily activities, 9 and social participation is more strongly influenced by intellectual disability than by the level of gross motor functioning. 10 Therefore, it is important to specifically examine the relevant aspects of functioning of adults with and without intellectual disability. ...
Article
Full-text available
Aim To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. Method We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers. Results In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I–IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III–V) participated. We identified 132 unique second‐level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services. Interpretation Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP.
... The substantial continuity of problems with pain, fatigue, and psychological issues (especially depression [2,9]) identified in childhood and adolescence has been acknowledged as important, but still little analyzed in any depth. There is a lack of data on patients' personal and environmental features [10], and particularly on their family dynamics [10], which confirms yet again the need for a more holistic approach to their care already from childhood. In the light of these considerations, we report a multicenter study financed by Mariani Foundation conducted by sections of the Italian Network for Cerebral Palsy (ITA-NET-CP) on a sample of more than a hundred individuals with CP. ...
... The substantial continuity of problems with pain, fatigue, and psychological issues (especially depression [2,9]) identified in childhood and adolescence has been acknowledged as important, but still little analyzed in any depth. There is a lack of data on patients' personal and environmental features [10], and particularly on their family dynamics [10], which confirms yet again the need for a more holistic approach to their care already from childhood. In the light of these considerations, we report a multicenter study financed by Mariani Foundation conducted by sections of the Italian Network for Cerebral Palsy (ITA-NET-CP) on a sample of more than a hundred individuals with CP. ...
... There is no general consensus on how much participation is influenced by more or less severe motor function impairment. There is a greater homogeneity of the data concerning the association between participation and intellectual disability or epilepsy [10,21,22]. ...
Article
Full-text available
Cerebral palsy (CP) is still the most common cause of disability developing in infancy. How such a complex disorder affects adult life raises important questions on the critical issues to consider and the most appropriate care pathway right from early childhood. We conducted a multicenter study on a sample of 109 individuals with CP followed up from infancy and recalled for an assessment at ages ranging between 18 and 50 years (mean age 26 years). Semi-structured interviews and specific questionnaires (SF36, LIFE-H and Hollingshead Index) were conducted to assess general psychological state, quality of life, and socio-economic conditions. Our findings showed a globally positive perception of quality of life, albeit with lower scores for physical than for mental health. Our cases generally showed good scores on participation scales, though those with more severe forms scored lower on parameters such as mobility, autonomy, and self-care. These findings were investigated in more depth in interviews, in which our participants painted a picture showing that gradual improvements have been made in several aspects over the years, in the academic attainment and employment, for instance. On the downside, our sample reported persistent limitations on autonomy in daily life. As for the more profound psychological domain, there was evidence of suffering due to isolation and relational difficulties in most cases that had not emerged from the questionnaires. Our data have possible implications for the management of CP during childhood, suggesting the need to avoid an exclusive focus on motor function goals, and to promote strategies to facilitate communication, participation, autonomy, and social relations.
... The support model considers five elements in assessing the individual's support needs (Thompson et al., 2004): personal competence (defined as intellectual and adaptive behavioral skills), the number and complexity of environments in which the person participates, the number and complexity of activities, the presence of exceptional medical needs, and the presence of exceptional behavioral needs. Thus, one individual may have higher support needs than another because of additional medical and behavioral needs or the existence of restricted environments for participation (van Gorp et al., 2019;van Timmeren et al., 2017;Zijlstra & Vlaskamp, 2005). Furthermore, persons with medical and behavioral needs might require greater support than those with fewer limitations, including a wider range of resources to be deployed. ...
... However, the influence of low-medium levels of needs appears to be dependent on the situation since it was significant only in some support domains. Thus, we identified that the greatest impact of behavioral needs was in the areas of Social and School participation, in which the relationship with peers is also the most common behavioral difficulty among children with higher impairments (Parkes et al., 2008;van Gorp et al., 2019). ...
Article
Full-text available
Background/aims: Medical and behavioral needs are relevant in organizing and providing support strategies that improve the quality of life for children, along with their families. The present study aims to examine the impact of medical and behavioral needs on the need for support of children with disabilities. Methods: Health and education professionals were interviewed using the Supports Intensity Scale-Children's version to estimate the support needs of 911 children and adolescents (5-16 years) with an intellectual disability, including 55.32% with an additional disability. For data analysis, a model for measuring support needs was specified, consisting of seven support needs factors and three method factors. In estimating the model, four groups of medical and behavioral needs were considered. The factor scores' means of the groups were compared through t-tests. Results: Medical and behavioral needs had an impact on overall support needs. Differences were found in all support domains for medical needs. The greatest influence of behavioral needs was found in the Social and School participation areas but was indistinguishable between the mild and moderate levels of needs. Conclusions: Medical and behavioral needs greatly affect the need for support in a child's daily life, so they need to be considered a priority for support services. The importance of standardized assessments is emphasized to help develop support strategies.
... The support model considers five elements in assessing the individual's support needs (Thompson, Bryant, et al., 2004): personal competence (defined as intellectual and adaptive behavioral skills), the number and complexity of environments in which the person participates, the number and complexity of activities, the presence of exceptional medical needs, and the presence of exceptional behavioral needs. Thus, one individual may have higher support needs than another because of additional medical and behavioral needs or the existence of restricted environments for participation (van Gorp et al., 2019;van Timmeren et al., 2017;Zijlstra & Vlaskamp, 2005). Furthermore, persons with medical and behavioral needs might require greater support than those with fewer limitations, including a wider range of resources to be deployed. ...
... However, the influence of lowmedium levels of needs appears to be dependent on the situation since it was significant only in some support domains. Thus, we identified that the greatest impact of behavioral needs was in the areas of Social and School participation, in which the relationship with peers is also the most common behavioral difficulty among children with higher impairments (Parkes et al., 2008;van Gorp et al., 2019). ...
Thesis
The current paradigms for addressing disability assume an ecological-contextual approach, where support moderates a person’s interaction with their environment. Support needs arise in that interaction. The support needs profile serves to guide the design and implementation of intervention strategies that improve the person’s functioning in their context. This Doctoral Thesis aims to analyze the support needs of young people with intellectual and motor disabilities, considering their level of motor functioning (first study), their differences with a group with intellectual disability (second study), and the effect of exceptional medical and behavioral needs (third study). Toward this end, the support needs of youths with motor disabilities, mainly cerebral palsy, have been assessed by using the Supports Intensity Scale for Children and Adolescents (SIS-C). The results suggest that the model for measuring support needs is generalizable to this group. However, (a) support needs are influenced by levels of motor functioning, showing a ceiling effect on the highest values of the variable; (b) the effect of motor impairments interacts with cognitive functioning levels; and (c) the presence of medical and behavioral needs is related to higher scores on support needs. The main implications for practice and research are the urgency of analyzing greater support needs and the importance of developing strategies that improve people’s functioning in different areas of their lives. Keywords: support, support needs, intellectual disability, motor disability, assessment, SIS
Article
INTRODUCTION: Cerebral palsy (CP) is one of the most common causes of disability in children. The use of clinical tools that will allow the prediction of results is necessary for the medical rehabilitation of children with CP. Although clinical and socio-economic factors that determine the prognosis of rehabilitation and further social adaptation of patients with CP are being actively investigated, predictors that help predict the effectiveness of medical rehabilitation measures are not yet identified. AIM: To determine the predictors of the effectiveness of medical rehabilitation in children with CP using anamnesis, scales, and questionnaire data. MATERIALS AND METHODS: The study involved 29 children (average age, 5.4 1.1 years) with various forms of CP who underwent medical rehabilitation in inpatient and outpatient conditions within 12 months. Before and after rehabilitation courses, all patients, apart from general somatic-clinical and neurological examinations, underwent tests that use specialized questionnaires and scales and evaluation using the International Classification of Functioning, Disability and Health (ICF) Core Sets for children and adolescence with cerebral palsy. The patients were arranged into groups depending on the presence of improvement determined using the author-developed criterion: reduction of the determinant level relative to function and activity and participation components of ICF by a minimum of at least one point in three domains. Various uni- and multivariate logistic regression models were used to evaluate the prognostic significance of history, scales, and questionnaire data. Receiver operating characteristic curves were constructed to determine the threshold values of quantitative parameters optimal for predicting a certain treatment outcome. RESULTS: The Gross Motor Function Measure 88 score of 82.1% before the rehabilitation measures indicated a positive rehabilitation prognosis. ICF domains b760 control of voluntary movement functions, d415 maintaining a body position, and d710 basic interpersonal relations are predictors of the effectiveness of rehabilitation in patients with a CP with determinant level 1. CONCLUSION: The results demonstrated that higher parameters of motor and coordination functions and higher levels of interpersonal interactions of children with ICP are significant predictors of the effectiveness of rehabilitation.
Article
Full-text available
Background Assessing prognosis of self-care and mobility capabilities in children with cerebral palsy (CP) is important for goal setting, treatment guidance and meaningful professional-caregiver conversations. Aims Identifying factors associated with changes in self-care and mobility capabilities in regular outpatient multidisciplinary paediatric CP rehabilitation care. Methods and Procedures Routinely monitored longitudinal data, assessed with the Paediatric Evaluation of Disability Inventory (PEDI-Functional-Skills-Scale, FSS 0-100) was retrospectively analysed. We determined contributions of age, gross-motor function, bimanual-arm function, intellectual function, education type, epilepsy, visual function, and psychiatric comorbidity to self-care and mobility capability changes (linear-mixed-models). Outcomes and Results For 90 children (53 boys), in all Gross-Motor-Function-Classification-System (GMFCS) levels, 272 PEDI’s were completed. Mean PEDI-FSS-scores at first measurement (median age: 3,2 years) for self-care and mobility were 46.3 and 42.4, and mean final FSS-scores respectively were 55.1 and 53.1 (median age: 6,5 years). Self-care capability change was significantly associated with age (2.81, p<0.001), GMFCS levels III-V (-9.12 to -46.66, p<0.01), and intellectual impairment (-6.39, p<0.01). Mobility capability change was significantly associated with age (3.25, p<0.001) and GMFCS levels II-V (-6.58 to -47.12, p<0.01). Conclusions and Implications Most important prognostic factor for self-care and mobility capabilities is GMFCS level, plus intellectual impairment for self-care. Maximum capability levels are reached at different ages, which is important for individual goal setting and managing expectations.
Book
Full-text available
SUMMARY / Cerebral palsy is a well-recognized, heterogeneous condition persisting through the lifespan. In many individuals with cerebral palsy, motor disorders are associated by other comorbidities, including disturbances of sensation, perception, cognition and communication, epilepsy, emotional, behavioural and secondary musculoskeletal problems. Children with cerebral palsy face various challenges that can manifest in different ways over the life course, such as reduced and less diverse participation in daily activities at home, school and in the community, when compared to peers.In the International Classification of Functioning, Disability, and Health (ICF), participation is defined as a person’s “involvement in life situations”, reflecting the interaction of the person, activity and environment. However, little is known on the participation of children with disabilities in developing countries with fewer resources, such as Serbia. This study aimed to examine the characteristics of community participation of children with cerebral palsy in comparison to their peers with typical development and the effect of the environment on this participation, from the perspective of parents. The results of our study confirmed that the overall participation of children with cerebral palsy in the community was lower in comparison to the participation of children with typical development. Children with cerebral palsy participated in fewer activities, less frequently and were involved to a lesser extent. Differences were also evident at the level of individual activity types. Higher frequency, greater involvement level and a broader variety of activities were the desired types of change, as reported by parents. Parents of children with cerebral palsy highlighted engaging in activities that were beneficial for functional, motor and health status of the child, that were involving social interaction and communication and those providing children with the opportunities to develop social skills. By comparing the structures of environmental factors, the results of our study indicated more barriers and fewer facilitators in the group of children with cerebral palsy. Additionally, the environment was overall less supportive, environmental factors were rated less often as helpful in the child’s participation, and community resources were less available and/or adequate. For most children with cerebral palsy, barriers included physical and cognitive demands of typical community-based activities, as well as the physical layout of community settings. On the other hand, the supports included attitudes and actions of other members of the community towards the child, relationships with peers and social demands of typical activities. A lack of more adequate services was confirmed. Functional limitations children with cerebral palsy (gross motor, fine manual and intellectual functioning) were associated with the lower involvement in community-based activities. Activities affected by functional limitations were unstructured and organized physical activities, getting together with other children, and to a lesser extent, community events, neighbourhood outings, overnight visits or trips and extracurricular classes and lessons. Children with cerebral palsy with more severe levels of intellectual disability were at increased risk of fewer supporting factors and collectively less support and help from the environment. New findings may aid the identification of families with a child with cerebral palsy who may need interventions to improve children's participation in the community environment. KEY WORDS: participation, disability studies, International Classification of Functioning, Disability and Health, disability, children with cerebral palsy, involvement, barriers, environment, community-based activities