title: Transition into adult healthcare services in Scotland: findings from a study concerning service users at the Scottish Spina Bifida Association.
abstract: OBJECTIVE
  Literature on interventions that enable young people with spina bifida and/or hydrocephalus to have smooth transition, into adult healthcare services, stress the need for the process to start early and to include all family members. The study reported here was set to quantify and articulate the experiences of service users who are or due to be going through the transition process in Scotland today.
  
  
  RESULTS
  Focus group sessions, in the North of Scotland and in the 'Central Belt', captured rich qualitative data. A survey, sent to eligible participants on the Spina Bifida National database, offered complimentary data source. Despite the fact that the number of returned questionnaires was low (n = 20), data analysis identified a number of core recurring themes. These include issues concerning Communications, Respect, Choice and Control. Findings suggest that there is a significant chasm between the political rhetoric and the reality faced by young people with spina bifida moving to adult healthcare services.
  
  
  CONCLUSIONS
  A possible way to facilitate successful transition of young people is using personal healthcare information as the locus for needed change. More research is needed to ascertain whether a 'Person-Centred Record', which is set to empower young people on their transition pathway, is an appropriate transition tool.
authors.affiliation: Lecturer, Nursing Studies, The University of Edinburgh Medical School, UK sharon.levy@ed.ac.uk.
authors.forename: Sharon
authors.initials: S
authors.lastname: Levy
authors.affiliation: Chief Executive, Scottish Spina Bifida Association, UK.
authors.forename: Andrew H D
authors.initials: AH
authors.lastname: Wynd
authors.affiliation: Professor of Surgical Paediatrics (Child Health), University of Glasgow, UK.
authors.forename: Robert
authors.initials: R
authors.lastname: Carachi
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D003695:Delivery of Health Care / Q000458:organization & administration*; D005260:Female; D006297:Health Services Accessibility / Q000458:organization & administration*; D006301:Health Services Needs and Demand; D006801:Humans; D006849:Hydrocephalus / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D008297:Male; D015397:Program Evaluation; D036301:Qualitative Research; D011787:Quality of Health Care / Q000592:standards; D012606:Scotland / Q000453:epidemiology; D016135:Spinal Dysraphism / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D011795:Surveys and Questionnaires; D013997:Time Factors; D060305:Transition to Adult Care / Q000458:organization & administration
keywords: Neurological conditions; person-centred record; transition; young people