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The emotional well-being of parents with children at genetic risk for type 1 diabetes before and during participation in the POInT-study

Houben, Janne ; Janssens, Martha ; Winkler, Christiane ; Besser, Rachel Elizabeth Jane ; Dzygalo, Katarzyna ; Fehn, Annika ; Hommel, Angela ; Lange, Karin ; Elding Larsson, Helena LU and Lundgren, Markus LU , et al. (2022) In Pediatric Diabetes 23(8). p.1707-1716
Abstract

Introduction: This study examined the emotional impact that parents experience when confronted with an increased genetic risk of type 1 diabetes (T1D) in their child. Population-based screening of neonates for genetic risk of chronic disease carries the risk of increased emotional burden for parents. Methods: Information was collected using a well-being questionnaire for parents of infants identified as having an increased risk for T1D in a multinational research study. Parents were asked to complete this questionnaire after they were told their child had an increased risk for T1D (Freder1k-study) and at several time points during an intervention study (POInT-study), where oral insulin was administered daily. Results: Data were... (More)

Introduction: This study examined the emotional impact that parents experience when confronted with an increased genetic risk of type 1 diabetes (T1D) in their child. Population-based screening of neonates for genetic risk of chronic disease carries the risk of increased emotional burden for parents. Methods: Information was collected using a well-being questionnaire for parents of infants identified as having an increased risk for T1D in a multinational research study. Parents were asked to complete this questionnaire after they were told their child had an increased risk for T1D (Freder1k-study) and at several time points during an intervention study (POInT-study), where oral insulin was administered daily. Results: Data were collected from 2595 parents of 1371 children across five countries. Panic-related anxiety symptoms were reported by only 4.9% after hearing about their child having an increased risk. Symptoms of depression were limited to 19.4% of the parents at the result-communication visit and declined over time during the intervention study. When thinking about their child's risk for developing T1D (disease-specific anxiety), 47.2% worried, felt nervous and tense. Mothers and parents with a first-degree relative (FDR) with T1D reported more symptoms of depression and disease-specific anxiety (p < 0.001) than fathers and parents without a FDR. Conclusion: Overall, symptoms of depression and panic-related anxiety are comparable with the German population. When asked about their child's risk for T1D during the intervention study, some parents reported disease-specific anxiety, which should be kept in mind when considering population-based screening. As certain subgroups are more prone, it will be important to continue psychological screening and, when necessary, to provide support by an experienced, multidisciplinary team.

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author collaboration
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
emotional well-being, genetic risk, parents, prevention, type 1 diabetes
in
Pediatric Diabetes
volume
23
issue
8
pages
10 pages
publisher
Wiley-Blackwell
external identifiers
  • pmid:36323590
  • scopus:85144588619
ISSN
1399-543X
DOI
10.1111/pedi.13448
language
English
LU publication?
yes
id
ea6bcb1b-974f-4cab-a905-4b936df183f6
date added to LUP
2023-01-09 13:27:39
date last changed
2024-06-27 14:14:45
@article{ea6bcb1b-974f-4cab-a905-4b936df183f6,
  abstract     = {{<p>Introduction: This study examined the emotional impact that parents experience when confronted with an increased genetic risk of type 1 diabetes (T1D) in their child. Population-based screening of neonates for genetic risk of chronic disease carries the risk of increased emotional burden for parents. Methods: Information was collected using a well-being questionnaire for parents of infants identified as having an increased risk for T1D in a multinational research study. Parents were asked to complete this questionnaire after they were told their child had an increased risk for T1D (Freder1k-study) and at several time points during an intervention study (POInT-study), where oral insulin was administered daily. Results: Data were collected from 2595 parents of 1371 children across five countries. Panic-related anxiety symptoms were reported by only 4.9% after hearing about their child having an increased risk. Symptoms of depression were limited to 19.4% of the parents at the result-communication visit and declined over time during the intervention study. When thinking about their child's risk for developing T1D (disease-specific anxiety), 47.2% worried, felt nervous and tense. Mothers and parents with a first-degree relative (FDR) with T1D reported more symptoms of depression and disease-specific anxiety (p &lt; 0.001) than fathers and parents without a FDR. Conclusion: Overall, symptoms of depression and panic-related anxiety are comparable with the German population. When asked about their child's risk for T1D during the intervention study, some parents reported disease-specific anxiety, which should be kept in mind when considering population-based screening. As certain subgroups are more prone, it will be important to continue psychological screening and, when necessary, to provide support by an experienced, multidisciplinary team.</p>}},
  author       = {{Houben, Janne and Janssens, Martha and Winkler, Christiane and Besser, Rachel Elizabeth Jane and Dzygalo, Katarzyna and Fehn, Annika and Hommel, Angela and Lange, Karin and Elding Larsson, Helena and Lundgren, Markus and Roloff, Frank and Snape, Matthew and Szypowska, Agnieszka and Weiss, Andreas and Zapardiel-Gonzalo, Jose and Zubizarreta, Nicole and Ziegler, Anette Gabriele and Casteels, Kristina}},
  issn         = {{1399-543X}},
  keywords     = {{emotional well-being; genetic risk; parents; prevention; type 1 diabetes}},
  language     = {{eng}},
  number       = {{8}},
  pages        = {{1707--1716}},
  publisher    = {{Wiley-Blackwell}},
  series       = {{Pediatric Diabetes}},
  title        = {{The emotional well-being of parents with children at genetic risk for type 1 diabetes before and during participation in the POInT-study}},
  url          = {{http://dx.doi.org/10.1111/pedi.13448}},
  doi          = {{10.1111/pedi.13448}},
  volume       = {{23}},
  year         = {{2022}},
}