Problemi non correnti
La famiglia del bambino con bisogni speciali
THE FAMILY OF THE CHILD WITH SEVERE DISABILITY
BRUNO SACHER
UOC di Pediatria, Ospedale S. Antonio, San Daniele del Friuli (UD)
Settembre 2004 - pagg. 492 -498
Abstract
Children with disabilities and their families experience a wide array of problems. In order to
better respond to their needs, 81 families have been studied, by collecting and analysing both
quantitative and qualitative information. A number of problems emerge from this analysis:
poor communication between the health and social services, the parents, poor links with
and support by the community; disparity in attention experienced by the siblings and consequent
unease and uncertainties; parents feeling overwhelmed and left alone. Paediatricians
and other health professionals need to be aware of all these aspects and to get more involved
in the coordination and facilitation of integrated care to the families of children with severe
disability.
Parole chiave
Suggerite dall'AI
Classificazione MeSH
Bibliografia
1. Taylor EH. Understanding and helping families
with neurodevelopmental and neuropsychiatric
special needs. Ped Clin, North Am
1995;42:143-51.
2. Hutton JL, Cooke T, Pharoah OD. Effect of severity of disability on survival in north east England cerebral palsy cohort. Arch Dis Child 2000;83:468-74.
3. Crichton JU, Mackinnon M, White CP. The life-expectancy of persons with cerebral palsy. Develop Med Child Neurology 1995;37:567- 76.
4. Mahon M, Kibirige MS. Patterns of admissions for children with special needs to the pediatric assessment unit. Arch Dis Child 2004; 89:165-69.
5. Dosa NP, Boeing NM, Kanter RK. Excess risk of severe illness in children with chronic health conditions. Pediatrics 2001;107:499-504
6. Roberts K, Lawton D. Acknowledging the extra care parents give their disabled child. Child: Care, Health and Development 2001;27 (4):307-19.
7. de Geeter KI, Poppes P, Vlaskamp C. Parents as experts: the position of parents of children with profound multiple disabilities. Child: Care, Health and Development 2002; 28(6):443-53.
8. Larsson M. Organising habilitation services: team structures and family participation. Child: Care, Health and Development 2002; 26(6):501-14.
9. Law M, Hanna S, King G, Hurley P, King S, Kertoy M. Factors affecting family-centred service delivery for children with disabilities. Child: Care, Health and Development 2003; 29:357-66.
10. Moore B, Tonniges FT. The Every Child Deserves a Medical Home “Training Program: More Than a Traditional Continuing Medical Education Course”. Pediatrics 2004; 113 (suppl. May):1479-84.
11. Neville B. Tertiary paediatrics needs a disability model. Arch Dis Child 2000;83:35-8.
12. Committee on Children With Disabilities. American Academy of Paediatrics. Role of the Pediatrician in Family-Centred Early Intervention Services. Pediatrics 2001;107(5): 1155-57.
13. Gupta VB, O’Connor KG, Quezada Gomez C. Care Coordination Services in Pediatric Practices. Pediatrics 2004;113(suppl. May): 1517-21.
14. Marchetti F, Nigro M, Marfisi RM, Albertone A, Tognoni G, Bonati M, et al. Le malattie croniche in pediatria. Epidemiologia clinica e assistenziale. Medico e Bambino 1994;2:24-31.
15. Marchetti F, Bonati M, Marfisi RM, La Gamba G, Biasini GC, Tognoni G on the behalf of the Italian Collaborative Group on Paediatric Chronic Diseases. Parental and primary care physicians’ views on the management of chronic diseases. Acta Paediatr 1995; 84:1165-72.
2. Hutton JL, Cooke T, Pharoah OD. Effect of severity of disability on survival in north east England cerebral palsy cohort. Arch Dis Child 2000;83:468-74.
3. Crichton JU, Mackinnon M, White CP. The life-expectancy of persons with cerebral palsy. Develop Med Child Neurology 1995;37:567- 76.
4. Mahon M, Kibirige MS. Patterns of admissions for children with special needs to the pediatric assessment unit. Arch Dis Child 2004; 89:165-69.
5. Dosa NP, Boeing NM, Kanter RK. Excess risk of severe illness in children with chronic health conditions. Pediatrics 2001;107:499-504
6. Roberts K, Lawton D. Acknowledging the extra care parents give their disabled child. Child: Care, Health and Development 2001;27 (4):307-19.
7. de Geeter KI, Poppes P, Vlaskamp C. Parents as experts: the position of parents of children with profound multiple disabilities. Child: Care, Health and Development 2002; 28(6):443-53.
8. Larsson M. Organising habilitation services: team structures and family participation. Child: Care, Health and Development 2002; 26(6):501-14.
9. Law M, Hanna S, King G, Hurley P, King S, Kertoy M. Factors affecting family-centred service delivery for children with disabilities. Child: Care, Health and Development 2003; 29:357-66.
10. Moore B, Tonniges FT. The Every Child Deserves a Medical Home “Training Program: More Than a Traditional Continuing Medical Education Course”. Pediatrics 2004; 113 (suppl. May):1479-84.
11. Neville B. Tertiary paediatrics needs a disability model. Arch Dis Child 2000;83:35-8.
12. Committee on Children With Disabilities. American Academy of Paediatrics. Role of the Pediatrician in Family-Centred Early Intervention Services. Pediatrics 2001;107(5): 1155-57.
13. Gupta VB, O’Connor KG, Quezada Gomez C. Care Coordination Services in Pediatric Practices. Pediatrics 2004;113(suppl. May): 1517-21.
14. Marchetti F, Nigro M, Marfisi RM, Albertone A, Tognoni G, Bonati M, et al. Le malattie croniche in pediatria. Epidemiologia clinica e assistenziale. Medico e Bambino 1994;2:24-31.
15. Marchetti F, Bonati M, Marfisi RM, La Gamba G, Biasini GC, Tognoni G on the behalf of the Italian Collaborative Group on Paediatric Chronic Diseases. Parental and primary care physicians’ views on the management of chronic diseases. Acta Paediatr 1995; 84:1165-72.