title: Needs of disabled children and their families.
abstract: In the new NHS those who provide services for disabled children need to measure and demonstrate their effectiveness, but there are no easily available outcome measures for use by child development centres and teams. The development of an alternative approach, using a series of statements of good practice, is described. Parents of children with cerebral palsy were asked to participate in semistructured interviews, to ascertain the value and relevance of these quality statements. Parents were most concerned about the standard of news breaking and early follow up, the sharing of information, and the supply and repair of equipment. The findings were used to modify the quality checklist and it is proposed that this should form the basis of a "charter for disabled children and their families'.
authors.affiliation: St George's Hospital, London.
authors.forename: J
authors.initials: J
authors.lastname: Milner
authors.forename: C
authors.initials: C
authors.lastname: Bungay
authors.forename: D
authors.initials: D
authors.lastname: Jellinek
authors.forename: D M
authors.initials: DM
authors.lastname: Hall
mesh_terms: D001294:Attitude to Health; D002547:Cerebral Palsy / Q000628:therapy*; D006233:Persons with Disabilities; D004519:Education, Special; D006266:Health Education; D006301:Health Services Needs and Demand; D008131:London; D008134:Long-Term Care / Q000592:standards; D010290:Parents / Q000193:education / Q000523:psychology*; D011368:Professional-Family Relations; D011785:Quality Assurance, Health Care; D013222:State Medicine / Q000592:standards; D014342:Truth Disclosure