title: Isolated thoughts and feelings and unsolved concerns: adolescents' and parents' perspectives on living with type 1 diabetes - a qualitative study using visual storytelling.
abstract: OBJECTIVE
  To explore and describe the experiences of adolescents and their parents living with type 1 diabetes, to identify their needs for support to improve adolescents' self-management skills in the transition from child- to adulthood.
  
  
  BACKGROUND
  Adolescents with type 1 diabetes often experience deteriorating glycaemic control and distress. Parents are important in adolescents' ability to self-manage type 1 diabetes, but they report anxiety and frustrations. A better understanding of the challenges adolescents and parents face, in relation to the daily self-management of type 1 diabetes, is important to improve clinical practice.
  
  
  METHODS
  A qualitative explorative study using visual storytelling as part of individual interviews.
  
  
  METHODS
  A purposive sample of nine adolescents and their parents (seven mothers, six fathers) took photographs illustrating their experiences living with type 1 diabetes. Subsequently, participants were interviewed individually guided by participants' photographs and a semistructured interview guide. Interviews were analysed using thematic analysis.
  
  
  RESULTS
  Four major themes were consistent across adolescents and their parents: (1) striving for safety, (2) striving for normality, (3) striving for independence and (4) worrying about future. Although adolescents and parents had same concerns and challenges living with type 1 diabetes, they were experienced differently. Their thoughts and feelings mostly remained isolated and their concerns and challenges unsolved.
  
  
  CONCLUSIONS
  The concerns and challenges adolescents and their parents face in the transition from child- to adulthood are still present despite new treatment modalities. Parents are fundamental in supporting the adolescents' self-management-work; however, the parties have unspoken concerns and challenges.
  
  
  CONCLUSIONS
  Healthcare providers should address the parties' challenges and concerns living with type 1 diabetes to diminish worries about future including fear of hypoglycaemia, the burden of type 1 diabetes and the feeling of being incompetent in diabetes self-management. It is important to focus on supporting both adolescents and their parents, and to provide a shared platform for communication.
authors.affiliation: Pediatric and Adolescent Department, Nordsjaellands Hospital, Hillerød, Denmark.
authors.forename: Pernille
authors.initials: P
authors.lastname: Castensøe-Seidenfaden
authors.affiliation: Pediatric and Adolescent Department, Nordsjaellands Hospital, Hillerød, Denmark.
authors.forename: Grete
authors.initials: G
authors.lastname: Teilmann
authors.affiliation: Department of Computer Science, University of Copenhagen, Copenhagen, Denmark.
authors.forename: Finn
authors.initials: F
authors.lastname: Kensing
authors.affiliation: Steno Diabetes Center, Gentofte, Denmark.
authors.forename: Eva
authors.initials: E
authors.lastname: Hommel
authors.affiliation: Pediatric Department, Herlev Hospital, Herlev, Denmark.
authors.forename: Birthe Susanne
authors.initials: BS
authors.lastname: Olsen
authors.affiliation: Health Promotion Research, Steno Diabetes Center, Gentofte, Denmark.
authors.forename: Gitte Reventlov
authors.initials: GR
authors.lastname: Husted
mesh_terms: D000293:Adolescent; D000328:Adult; D001007:Anxiety / Q000523:psychology*; D003922:Diabetes Mellitus, Type 1 / Q000523:psychology* / Q000628:therapy; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010781:Photography; D036301:Qualitative Research; D012648:Self Care / Q000523:psychology*
keywords: adolescence; qualitative methods; self-management; transition; type 1 diabetes; visual storytelling