title: Medical and social service provision for families of children with NTD.
abstract: The supply of services to the families of children with spina bifida participating in the South Wales longitudinal study was reviewed. Initially general information and contact with other mothers were the commonest needs; as the children grew older the need for practical, material and financial help took priority. Parents were, generally, very satisfied with support provided by hospital staff with whom they had frequent, regular contact. Contact with health visitors and social workers was considered insufficient and unsatisfactory. Mothers of more severely disabled children were most likely to receive visits, but some saw none and contact with the social services decreased as the children got older. The locally organised parents association (SWASBAH) was able to provide information, financial assistance, holiday accommodation, and contact with others in a similar position; all of which were common, but otherwise inadequately met, needs. Despite improvements, particularly in financial benefits, over the course of the study, at 18 years parents appeared largely unsupported as they faced major changes in their children's lives. Throughout the study support from SWASBAH and the interviewer appeared to far outweight the statutory, non-medical, support.
authors.affiliation: Institute of Medical Genetics, University of Wales College of Medicine, Health Park, Cardiff, U.K.
authors.forename: O
authors.initials: O
authors.lastname: Evans
authors.forename: B
authors.initials: B
authors.lastname: Tew
authors.forename: H
authors.initials: H
authors.lastname: Payne
authors.forename: K M
authors.initials: KM
authors.lastname: Laurence
mesh_terms: D000293:Adolescent; D003152:Community Health Nursing; D003258:Consumer Behavior; D005260:Female; D006296:Health Services / Q000600:supply & distribution*; D006798:Housing; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009436:Neural Tube Defects / Q000453:epidemiology / Q000628:therapy*; D011368:Professional-Family Relations; D012931:Social Environment; D012944:Social Support; D016136:Spina Bifida Occulta / Q000453:epidemiology / Q000628:therapy; D014187:Transportation of Patients; D014852:Wales