الفهرس 
INTRODUCTIONOnly 14 pages are availabe for public view
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Abstract
The importance assigned to cerebral palsy is attributed to its severity, the burden it places on affected children, their families and societies and its high frequency as a cause of severe activity limitation in childhood.
The aim of the present study was to improve the quality of care provided for children with cerebral palsy attending Alexandria University Children’s Hospital to fully meet the guideline targets.
The study was conducted on 88 children of different forms of CP with an age ranged from 1 to 12 years .The children were selected from those attending Neurology and Physical Medicine Clinics in Alexandria University Children’s Hospital.
Demographic data showed male predominance (61.4%) among studied children. Regarding etiology of CP among studied children 12.5% were due to prenatal causes, 52.3% were due to perinatal causes and 21.6% were due to postnatal causes. as regard type of CP bilateral spastic was the most common type (62.5%).
As regards associated impairments. more than half of studied children had cognitive and communication disorders, epilepsy was present in more than one third of studied children (38.6%), behavioral abnormalities were reported in 28.4% of cases, visual impairment was reported in 17 % of cases, hearing impairment was associated with CP in 9 % of the children, and a large proportion of children with CP (62.5%) had other co- morbid conditions like feeding problems, sleeping disorders, drooling, bladder dysfunction and bowel disorders. Regarding socio- demographic characteristics of studied children, most of parents were illiterate or had poor education and belonging to lower socioeconomic groups.
Regarding to conformity to generic care standards of integrated care pathways through caregivers’ interview using a structured quality assessment tool; in the present study the majority of caregivers of studied children were not satisfied with various criteria of the healthcare provided to their children including the identification of the different needs of the child (e.g. mental, emotional, educational, and social needs) instead of just the physical needs. Also the majority of caregivers were not satisfied with information they received about CP (e.g., causes, how it progress, and the future), interventions and services and how to contact with other partner agencies. The majority of caregivers reported that they were not satisfied with their active involvement and shared decisions making regarding the care plan of their children. In the present study the majority of caregivers (86.9%) reported that the planned outcomes of their children are not achieved, this means that the healthcare provided in Alexandria University Children’s Hospital is deficient and needs improvement in many aspects.
Regarding to conformity to generic care standards of integrated care pathways through records review. It revealed that the majority of items of the structured assessment tool were not recorded including current, past intervention, additional co-morbidities, medications decisions and admission information.
In the present study a structured quality assessment tool was used, which is staff self-assessment questionnaire of Pediatric Neurology Residents and Physical Medicine Residents. It indicates strengths and weaknesses in care giving to children with CP and their families and it measures staff members’ perceptions of their performance. It revealed that most of care providers were not satisfied with many aspects of healthcare including provision of information and advice about CP for caregivers. Also they were not satisfied with absence of co-operation with other partner agencies and absence of structured care plan to every child with CP in the hospital.
The present study assessed general satisfaction of caregivers of children with CP with the health services provided to their children in our hospital regarding number of items including waiting time, waiting place, availability of facilities, cost of services, careful listening of doctors, problems discussion and amount of explanation about their children and overall impression about services received by their children. It was found that the majority of caregivers were uncertain of the efficiency of care regarding most of items however about two thirds of caregivers were unsatisfied with waiting place.