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Pathways to diagnosis: a qualitative study of the experiences and emotional reactions of parents of children diagnosed with type 1 diabetes
Author(s) -
Rankin David,
Harden Jeni,
Waugh Norman,
Noyes Kathryn,
Barnard Katharine D,
Stephen John,
Robertson Kenneth J,
Bath Louise,
Robertson Linda,
Lawton Julia
Publication year - 2014
Publication title -
pediatric diabetes
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.678
H-Index - 75
eISSN - 1399-5448
pISSN - 1399-543X
DOI - 10.1111/pedi.12124
Subject(s) - medicine , type 1 diabetes , feeling , thematic analysis , diabetic ketoacidosis , affect (linguistics) , health professionals , qualitative research , pediatrics , health care , developmental psychology , psychiatry , diabetes mellitus , psychology , social psychology , social science , communication , sociology , economic growth , economics , endocrinology
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. Discussion 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.