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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.
Developmental Medicine and Child Neurology
|June 1, 1988
Summary
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.