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The basic care needs of profoundly mentally retarded children with multiple handicaps
B Hagberg1, K Edebol-Tysk, B Edström
1Department of Paediatrics II, Ostra Sjukhuset, Goteborg, Sweden.
Insights
Severely multi-impaired children with profound intellectual disability require lifelong, intensive baby-like care and medical support. Normalization schemes are unrealistic for these children when home care is not possible.
Area of Science:
- Pediatrics
- Developmental Disabilities
- Child Neurology
Background:
- A small minority of children exhibit severe multiple impairments and profound intellectual disability.
- These children present unique and complex care challenges requiring specialized medical and social support.
Purpose of the Study:
- To analyze the ability profiles, etiological patterns, and basic care needs of severely multi-impaired children with profound intellectual disability.
- To evaluate the long-term care requirements and integration possibilities for this specific pediatric population.
Main Methods:
- Analysis of a population-based care-load study (1980-81) of 53 children and adolescents (IQ < 50).
- Review of 10 years of clinical experience from a pediatric multi-impairment unit.
- Cross-sectional consensus evaluation of children in care in August 1986.
Main Results:
- Identified distinct ability profiles and etiological patterns in this cohort.
- Determined significant and continuous basic care needs, including lifelong baby-like care.
- Highlighted the necessity of ongoing medical support and specialized services.
Conclusions:
- These children constitute a long-term pediatric care group requiring continuous, lifelong support.
- Home-based care is crucial; if not feasible, integration into normalization schemes is unrealistic.
- Residential and social integration, along with participation in traditional training programs, may not be achievable for all.
Abstract:
The ability profiles, aetiological patterns and basic care needs for a small minority of the most seriously multi-impaired and profoundly mentally handicapped children were analysed. The analyses were based on (1) a care-load study (1980-81) of a population-based series of 53 children and adolescents born in 1966-76, representing the most profoundly retarded third of those with and IQ less than 50 in the city of Gothenburg, and (2) 10 years clinical experience of a paediatric multi-impairment unit, including a cross-sectional consensus evaluation of the children being cared for in August 1986. It is concluded that these children represent a long-term paediatric care-group in need of continuous and life-long baby-care, with access to medical support and service. When it is not possible to care for these children in their own homes, it cannot be realistically expected that they can be included in a normalisation scheme, implying that they can become integrated residentially and socially in society and participate in traditional training-school programmes.