Literature DB >> 24552497

Pathways to diagnosis: a qualitative study of the experiences and emotional reactions of parents of children diagnosed with type 1 diabetes.

David Rankin1, Jeni Harden, Norman Waugh, Kathryn Noyes, Katharine D Barnard, John Stephen, Kenneth J Robertson, Louise Bath, Linda Robertson, Julia Lawton.   

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. 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.
© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Entities:  

Keywords:  diabetic ketoacidosis; diagnosis; parents; qualitative research; type 1 diabetes mellitus

Mesh:

Year:  2014        PMID: 24552497     DOI: 10.1111/pedi.12124

Source DB:  PubMed          Journal:  Pediatr Diabetes        ISSN: 1399-543X            Impact factor:   4.866


  13 in total

1.  'Much more convenient, just as effective': Experiences of starting continuous glucose monitoring remotely following Type 1 diabetes diagnosis.

Authors:  Molly L Tanenbaum; Dessi P Zaharieva; Ananta Addala; Priya Prahalad; Julie A Hooper; Brianna Leverenz; Ana L Cortes; Nora Arrizon-Ruiz; Erica Pang; Franziska Bishop; David M Maahs
Journal:  Diabet Med       Date:  2022-08-08       Impact factor: 4.213

2.  Diabetes-Specific Self-Compassion: A New Measure for Parents of Youth With Type 1 Diabetes.

Authors:  Molly L Tanenbaum; Rebecca N Adams; Jessie J Wong; Korey K Hood
Journal:  J Pediatr Psychol       Date:  2020-06-01

3.  Depression as a predictor of hypoglycemia worry in parents of youth with recent-onset type 1 diabetes.

Authors:  Andrew McConville; Amy E Noser; Eve-Lynn Nelson; Mark A Clements; Shideh Majidi; Susana R Patton
Journal:  Pediatr Diabetes       Date:  2020-05-29       Impact factor: 4.866

4.  'I was ready for it at the beginning': Parent experiences with early introduction of continuous glucose monitoring following their child's Type 1 diabetes diagnosis.

Authors:  Molly L Tanenbaum; Dessi P Zaharieva; Ananta Addala; Jessica Ngo; Priya Prahalad; Brianna Leverenz; Christin New; David M Maahs; Korey K Hood
Journal:  Diabet Med       Date:  2021-04-21       Impact factor: 4.359

5.  Family adjustment to diabetes diagnosis in children: Can participation in a study on type 1 diabetes genetic risk be helpful?

Authors:  Laura B Smith; Xiang Liu; Suzanne Bennett Johnson; Roy Tamura; Helena Elding Larsson; Simi Ahmed; Riitta Veijola; Michael J Haller; Beena Akolkar; William A Hagopian; Marian J Rewers; Jeffrey Krischer; Andrea K Steck
Journal:  Pediatr Diabetes       Date:  2018-05-02       Impact factor: 3.409

6.  "Keeping it on your radar"-assessing the barriers and facilitators to a timely diagnosis of type 1 diabetes in childhood: A qualitative study from the early detection of type 1 diabetes in youth study.

Authors:  Julia Townson; Dunla Gallagher; Laura Cowley; Susan Channon; Michael Robling; David Williams; Clare Hughes; Simon Murphy; Lesley Lowes; John W Gregory
Journal:  Endocrinol Diabetes Metab       Date:  2017-12-18

7.  Mothers' Experiences of Maze Path of Type 1 Diabetes Diagnosis in Children.

Authors:  Maryam Khandan; Batool Tirgari; Farokh Abazari; Mohammad Ali Cheraghi
Journal:  Ethiop J Health Sci       Date:  2018-09

8.  Diabetic Ketoacidosis at Manifestation of Type 1 Diabetes in Childhood and Adolescence—Incidence and Risk Factors.

Authors:  Hugo Segerer; Michael Wurm; Julia M Grimsmann; Beate Karges; Andreas Neu; Marina Sindichakis; Katharina Warncke; Axel Dost; Reinhard W Holl
Journal:  Dtsch Arztebl Int       Date:  2021-06-04       Impact factor: 5.594

9.  Parents' information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study.

Authors:  David Rankin; Jeni Harden; Norman Waugh; Kathryn Noyes; Katharine D Barnard; Julia Lawton
Journal:  Health Expect       Date:  2014-07-29       Impact factor: 3.377

10.  Lived Experiences of Mothers with Diabetic Children from the Transfer of Caring Role.

Authors:  Maryam Khandan; Farokh Abazari; Batool Tirgari; Mohammad Ali Cheraghi
Journal:  Int J Community Based Nurs Midwifery       Date:  2018-01
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