title: Pathways to diagnosis: a qualitative study of the experiences and emotional reactions of parents of children diagnosed with type 1 diabetes.
abstract: OBJECTIVE
  The aim of this study was to explore from parents' perspectives the circumstances and events which led to their child being diagnosed with type 1 diabetes (T1D). The objective was to understand reasons for delays in seeking treatment and parents' emotional reactions to diagnosis so others can be better informed and supported in future.
  
  
  METHODS
  In-depth interviews with 54 parents of children (aged ≤12 yr) with T1D were conducted. Data analysis used an inductive, thematic approach.
  
  
  RESULTS
  Parents described a 'prompt' and a 'delayed' pathway to their child being diagnosed. Parents who considered the diagnosis to be 'prompt' reported how they, or other people, had recognized their child had developed symptoms of T1D which resulted in a rapid presentation to health care professionals. In contrast, parents who perceived their child's diagnosis to be 'delayed' did not recognize signs of T1D and attributed their child's deteriorating health to other conditions, being out of routines and/or their stage of development. These parents often only sought medical help when symptoms became extreme. All parents were distressed by their child's diagnosis; however, parents in the 'delayed' pathway expressed unresolved feelings of guilt, particularly when their child was diagnosed with diabetic ketoacidosis.
  
  
  CONCLUSIONS
  Parents' and other people's knowledge about T1D can affect the duration between onset of their child's symptoms and diagnosis. Campaigns to raise awareness should ensure that parents are made aware of symptoms and that T1D can develop during childhood. Health care professionals could discuss with parents the events preceding their child's diagnosis to better determine their emotional support needs.
authors.affiliation: Centre for Population Health Sciences, School of Molecular, Genetic and Population Health Sciences, University of Edinburgh Medical School, Edinburgh, UK.
authors.forename: David
authors.initials: D
authors.lastname: Rankin
authors.forename: Jeni
authors.initials: J
authors.lastname: Harden
authors.forename: Norman
authors.initials: N
authors.lastname: Waugh
authors.forename: Kathryn
authors.initials: K
authors.lastname: Noyes
authors.forename: Katharine D
authors.initials: KD
authors.lastname: Barnard
authors.forename: John
authors.initials: J
authors.lastname: Stephen
authors.forename: Kenneth J
authors.initials: KJ
authors.lastname: Robertson
authors.forename: Louise
authors.initials: L
authors.lastname: Bath
authors.forename: Linda
authors.initials: L
authors.lastname: Robertson
authors.forename: Julia
authors.initials: J
authors.lastname: Lawton
mesh_terms: D000328:Adult; D001290:Attitude; D001364:Awareness; D002648:Child; D002675:Child, Preschool; D057210:Delayed Diagnosis / Q000706:statistics & numerical data; D003922:Diabetes Mellitus, Type 1 / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology*; D004644:Emotions; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010465:Perception; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000453:epidemiology
keywords: diabetic ketoacidosis; diagnosis; parents; qualitative research; type 1 diabetes mellitus