title: An e-health intervention to support the transition of young people with long-term illnesses to adult healthcare services: Design and early use.
abstract: Co-design information and website to support adolescents and young adults with long-term illnesses in their transition to adult healthcare.
  
  
  
  A participatory iterative process involving a survey (n=207), twenty-one interviews, six participatory workshops, six video recordings, two advisory groups, and a co-design group to identify needs and preferences for e-health and information provision, was used to develop an appropriate intervention.
  
  
  
  Adolescents and young people expressed preferences for information that was trustworthy, empowering, colorful, easily downloaded online and written using non-patronizing language. They desired video testimonials of experiences from young adults who had transitioned to adult healthcare and wanted advice about becoming more independent, managing their condition, preparing for the transition, and information about medications and the differences between child and adult healthcare. They also wanted information about the location and configuration of adult healthcare, key hospital personnel, and frequently asked questions.
  
  
  
  The participatory iterative process led to the development of an online resource specifically tailored to the adolescents and young people's transition needs and information preferences. Preliminary feedback indicates that it is a valued resource.
  
  
  
  The www.SteppingUP.ie website has the potential to help prepare its target population group for the transition to adult healthcare.
authors.affiliation: Trinity College Dublin, School of Nursing & Midwifery, 24, D'Olier Street, Dublin 2, Ireland. Electronic address: coynei@tcd.ie.
authors.forename: I
authors.initials: I
authors.lastname: Coyne
authors.affiliation: Trinity College Dublin, School of Nursing & Midwifery, 24, D'Olier Street, Dublin 2, Ireland. Electronic address: prizemag@tcd.ie.
authors.forename: G
authors.initials: G
authors.lastname: Prizeman
authors.affiliation: Trinity College Dublin, School of Nursing & Midwifery, 24, D'Olier Street, Dublin 2, Ireland. Electronic address: Aisling.Sheehan@tcd.ie.
authors.forename: A
authors.initials: A
authors.lastname: Sheehan
authors.affiliation: Trinity College Dublin, School of Nursing & Midwifery, 24, D'Olier Street, Dublin 2, Ireland. Electronic address: hmalone@tcd.ie.
authors.forename: H
authors.initials: H
authors.lastname: Malone
authors.affiliation: Florence Nightingale Faculty of Nursing & Midwifery, King's College London, London, United Kingdom. Electronic address: alison.while@kcl.ac.uk.
authors.forename: A E
authors.initials: AE
authors.lastname: While
mesh_terms: D000293:Adolescent; D016497:Adolescent Health Services; D000328:Adult; D002908:Chronic Disease / Q000628:therapy*; D003142:Communication; D054626:Consumer Health Information / Q000379:methods*; D003266:Continuity of Patient Care; D006301:Health Services Needs and Demand; D006801:Humans; D016247:Information Storage and Retrieval; D020407:Internet; D008297:Male; D010353:Patient Education as Topic; D057240:Patient Preference; D012648:Self Care; D012944:Social Support; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care; D055815:Young Adult
keywords: Adolescents; Engagement; Information; Patient-centered communication; Self-management; Transition; Young adults