Participation to Life of Children With Cerebral Palsy

Study Overview
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Brief Summary
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Cerebral Palsy (CP) defined as a group of permanent impairments that is originating from non-progressive disorders that develop in the immature brain. CP leads activity limitations of movement and posture development. Motor problems in CP are usually accompanied by sensory and perceptual disorders, cognitive disorders, communication and behavioral disorders, epilepsy, and secondary musculoskeletal system problems. The first 20 years of life is characterized by rapid growth and specific changes in physical, social, and psychological development. Social participation and independence of children and youth are related to the changes in this period. Participation can be identified as being involved in life situations and it reflects the social aspect of functionality. The problems which can be come across in life situations are identified as participation limitation. In literature, no adequate study has investigated the functional inadequacy, activity and participation of children with CP; this project has been planned in order to specify the importance in rehabilitation interventions more detailed. This project aims to specify whether the functional levels correspond to the activity and participation limitations of children with CP living in Ankara city center and determine the effects of their functional status on activity, participation and quality of life. This investigation will be pioneer in indicating the activity and participation limitations of children with CP. According to the results, these limitations will be overcome and the quality of life of children with CP will be increased. The CP follow-up database in Ankara will be specified so their physical activity and participation levels will be followed periodically and CP profile will be determined in Ankara.

Detailed Description
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Cerebral Palsy (CP) defined as a group of permanent impairments that is originating from non-progressive disorders that develop in the immature brain. CP leads activity limitations of movement and posture development.The first 20 years of life is characterized by rapid growth and specific changes in physical, social, and psychological development. Social participation and independence of children and youth are related to the changes in this period. Participation can be identified as being involved in life situations and it reflects the social aspect of functionality. The problems which can be come across in life situations are identified as participation limitation. In the past, the impairment seen in child was concentrated and child was the passive receptor of treatment. Today, this view is changed and child is the active participant of the treatment of disability. The aim of treatment is identified as increasing the quality of life by supporting the activity and participation according to the priorities of the child and the parent. In literature, no adequate study has investigated the functional inadequacy, activity and participation of children with CP; this project has been planned in order to specify the importance in rehabilitation interventions more detailed. This project aims to specify whether the functional levels correspond to the activity and participation limitations of children with CP living in Ankara city center and determine the effects of their functional status on activity, participation and quality of life. This investigation will be pioneer in indicating the activity and participation limitations of children with CP. According to the results, these limitations will be overcome and the quality of life of children with CP will be increased. The CP follow-up database in Ankara will be specified so their physical activity and participation levels will be followed periodically and CP profile will be determined in Ankara. Moreover, the results of this study will be shared with the Ministry of National Education, the Ministry of Family and Social Policies, and the Ministry of Health and this will bring a different viewpoint to the community-based rehabilitation services in Turkey. Furthermore, this study will be expected to motivate countrywide investigations. In the project, Gross Motor Function Classification System (GMFCS) for the severity of the disability of people with CP, The Measure of Processes of Care (MPOC) for their care process, the Pediatric Outcomes Date Collection (PODCI) Instrument and Pediatric Quality of Life Questionnaire and The Child Health Quality (CHQ PF-50) for their health-related quality of life, the Manual Ability Classification System (MACS) for the manual abilities and the Communication Function Classification System (CFCS) for the communication skill and the Life Habits Questionnaire (LIFE-H) for the participation level and Impact on Family Scale (IPFAM) for family impact will be used and the outcomes will be analyzed by adequate statistical methods. It is intended to be discussed the findings of the project in national and international platforms.

Official Title
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The Investigation of Necessity, Participation to Life of Children With Cerebral Palsy and Their Families

Conditions
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Cerebral Palsy

Intervention / Treatment
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* Other: Assessment via questionnaire


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: To be diagnosed as cerebral palsy Exclusion Criteria: Children whose family didn't accept to participate to study

Ages Eligible for Study
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Minimum Age: 2 Years
Maximum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Intervention/Treatment |
| --- |
|Other: Assessment via questionnaire|All the children will be assessed via assessment questionnaires.|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Life Habits Questionnaire (LIFE-H) | Assessing of the participation level of children | At baseline | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Gross Motor Function Classification System (GMFCS) | Assessing severity of the disability of children | At baseline | 
| Pediatric Outcomes Date Collection (PODCI) (Questionnaire) | Assessing health-related quality of life of children by parent proxy questionnaire | At baseline | 
| Manual Ability Classification System (MACS) | Assessing the manual abilities | At baseline | 
| Communication Function Classification System (CFCS) | Assessing communication skill | At baseline | 
| The Child Health Quality (CHQ PF-50) | Assessing health-related quality of life | At baseline | 
| Pediatric Quality of Life Questionnaire (PedsQL) | Assessing health-related quality of life | At baseline | 
| The Measure of Processes of Care (MPOC) (Questionnaire) | Assessing health care process of children by parent proxy questionnaire | At baseline | 
| Impact on Family Scale (IPFAM) | Assessing family impact | At baseline | 
| Pediatric Evaluation of Disability Inventory | Assessing disability | At baseline | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Participation, Activity, Cerebral Palsy, LIFE Habits (life-H), Gross Motor Function, Health-related Quality of Life, Family