ABSTRACT
Children with multiple disabilities present complex management problems, both for their families and for the professionals involved in their care. For any one child, the list of functional and medical problems that need to be addressed is frequently reflected in an even longer list of involved professionals, leading to conflicting advice and problems in co-ordination of care. A hierarchical model for assessment and management is proposed, which highlights the interdependency of apparently different areas of functioning. The model aims to assist both parents and professionals in determining priorities, to improve interdisciplinary working, and to underpin staff training. Illustrative case studies indicate the importance of resolving issues in areas such as visual functioning, positioning and nutrition before integrated functions such as communication skills can be addressed successfully.
Subject(s)
Developmental Disabilities/diagnosis , Developmental Disabilities/therapy , Disabled Children , Health Status , Hearing Disorders/diagnosis , Hearing Disorders/therapy , Psychomotor Disorders/diagnosis , Psychomotor Disorders/therapy , Vision Disorders/diagnosis , Vision Disorders/therapy , Child , Child Nutritional Physiological Phenomena/physiology , Child, Preschool , Female , Humans , Infant , Male , Patient Care Team , Professional-Family Relations , Severity of Illness IndexABSTRACT
Seven patients with osteogenesis imperfecta who have undergone humeral rodding were reviewed. Satisfactory functional results were obtained in six of seven patients. We discuss the indications for surgery in our unit, the complications, and the results in comparison with those of other centres.
Subject(s)
Bone Nails , Humerus/surgery , Osteogenesis Imperfecta/surgery , Adolescent , Adult , Child , Child, Preschool , Female , Humans , Humerus/abnormalities , Humerus/diagnostic imaging , Male , Radiography , Recurrence , Treatment OutcomeABSTRACT
We report a postal survey of 59 families of children with osteogenesis imperfecta. From the 51 replies we collected data on developmental milestones and walking ability and related them to the Sillence and the Shapiro classifications of osteogenesis imperfecta. Twenty-four of the patients had been treated by intramedullary rodding. Both classifications helped to predict eventual walking ability. We found that independent sitting by the age of ten months was a predictor for the use of walking as the main means of mobility with 76% attaining this. Of the patients who did not achieve sitting by ten months, walking became the main means of mobility in only 18%. The developmental pattern of mobility was similar in the rodded and non-rodded patients.
Subject(s)
Developmental Disabilities/etiology , Movement Disorders/etiology , Osteogenesis Imperfecta/classification , Osteogenesis Imperfecta/complications , Walking , Adolescent , Age Factors , Child , Child, Preschool , Female , Humans , Internal Fixators , Male , Motor Skills , Osteogenesis Imperfecta/surgery , Predictive Value of Tests , Prognosis , Surveys and QuestionnairesABSTRACT
This paper describes the organisation and procedures of the Communication Aids Centre for children at the Wolfson Centre, London, including a model for assessment and recommendation of appropriate aids, such as symbol charts, switches and speech synthesisers. Of the children seen over an 18-month period, most had cerebral palsy and two-thirds were wheelchair-dependent. Almost half were assessed before the age of five years. A detailed follow-up of nine children is presented which reveals how long children may have to wait for the provision of an aid in the UK. Possible problems in establishing use of an aid are discussed; these include inadequate training of children and their communication partners. Suggestions for future improvements of communication-aids services are explored.
Subject(s)
Communication Aids for Disabled , Disabled Persons , Adolescent , Apraxias/rehabilitation , Cerebral Palsy/rehabilitation , Child , Child, Preschool , Eligibility Determination , Follow-Up Studies , Humans , Neurologic ExaminationABSTRACT
Three hundred and seventy-five families replied to a questionnaire about the use of their disabled children's wheelchairs. Many problems were found, such as difficulty in folding the chair and placing it in the car boot and difficulty in using pulbic transport. These families need adequate guidance to anticipate and deal with the problems. Provision of a wheelchair does not solve the mobility problems. The parents are faced with the task of transporting both the disabled child and the wheelchair whenever they want to use their own car or public transport. Ease of folding and lightness are important criteria for wheelchairs carried by cars. Parents need careful guidance about selecting suitable cars and also need to be shown how to lift the chairs without endangering their backs. Such advice should be provided by every wheelchair clinic and assessment and rehabilitation certre.
Subject(s)
Disabled Persons , Wheelchairs , Adolescent , Automobiles , Child , Environment Design , Humans , Locomotion , Railroads , TravelABSTRACT
In a follow-up study from a children's wheelchair clinic the delivery times for 120 wheelchairs ordered during 1973--7 were analysed. Delivery delays were considerable: only 22 of the 120 chairs were delivered within one month and 69 within three months, while 21 took over six months to arrive. Factors such as the type of chair ordered, the need for modifications, and the centre handling the transaction did not influence delivery time. Administrative delays may be an important contributory factor.
