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Internalizing the threat of risk-a qualitative study about adolescents' experience living with screening-detected celiac disease 5 years after diagnosis

Nordyke, Katrina; Rosen, Anna; Emmelin, Maria LU and Ivarsson, Anneli (2014) In Health and Quality of Life Outcomes 12.
Abstract
Background: Mass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved. Methods: Adolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years... (More)
Background: Mass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved. Methods: Adolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years after diagnosis. A qualitative content analysis resulted in a theme and categories that describe the experience living with screening-detected CD five years after diagnosis. Results: The overall theme - Internalizing the threat of risk - illustrates that being detected through screening and the internalized threat of future health complications have impacted how these adolescents felt about the diagnosis, coped with the gluten-free diet (GFD), and thought about CD screening. This theme is supported by four categories: maintaining an imposed disease identity describes how they continued to define their diagnosis in relation to the screening. They also expressed moving from forced food changes to adapted diet routines by describing habits, routines, coping strategies, and the financial burden of the GFD. They had enduring beliefs of being spared negative consequences, however, even after five years, some doubted they had CD and worried that being detected and eating a GFD might not be beneficial, i.e. continuing to fear it is "all in vain". Conclusions: There was maintenance and evolution in the perceptions, practices, and beliefs of the adolescents after five years. Some have adjusted to the disease and adapted new habits and coping strategies to deal with the GFD, while others still doubt they have CD or that being detected was beneficial. The transition to adapting to the disease and GFD is ongoing, illustrating the importance of providing ongoing support for those with screening-detected CD as they adjust to this chronic disease and the GFD. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Adolescents, Celiac disease, Gluten-free diet, Narratives, Qualitative, research, Screening
in
Health and Quality of Life Outcomes
volume
12
publisher
BioMed Central
external identifiers
  • wos:000338314500001
  • scopus:84903888419
ISSN
1477-7525
DOI
10.1186/1477-7525-12-91
language
English
LU publication?
yes
id
4ef04708-0ee6-4eec-8ccd-26751b423325 (old id 4605807)
date added to LUP
2014-09-04 12:23:56
date last changed
2017-04-02 03:50:33
@article{4ef04708-0ee6-4eec-8ccd-26751b423325,
  abstract     = {Background: Mass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved. Methods: Adolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years after diagnosis. A qualitative content analysis resulted in a theme and categories that describe the experience living with screening-detected CD five years after diagnosis. Results: The overall theme - Internalizing the threat of risk - illustrates that being detected through screening and the internalized threat of future health complications have impacted how these adolescents felt about the diagnosis, coped with the gluten-free diet (GFD), and thought about CD screening. This theme is supported by four categories: maintaining an imposed disease identity describes how they continued to define their diagnosis in relation to the screening. They also expressed moving from forced food changes to adapted diet routines by describing habits, routines, coping strategies, and the financial burden of the GFD. They had enduring beliefs of being spared negative consequences, however, even after five years, some doubted they had CD and worried that being detected and eating a GFD might not be beneficial, i.e. continuing to fear it is "all in vain". Conclusions: There was maintenance and evolution in the perceptions, practices, and beliefs of the adolescents after five years. Some have adjusted to the disease and adapted new habits and coping strategies to deal with the GFD, while others still doubt they have CD or that being detected was beneficial. The transition to adapting to the disease and GFD is ongoing, illustrating the importance of providing ongoing support for those with screening-detected CD as they adjust to this chronic disease and the GFD.},
  articleno    = {91},
  author       = {Nordyke, Katrina and Rosen, Anna and Emmelin, Maria and Ivarsson, Anneli},
  issn         = {1477-7525},
  keyword      = {Adolescents,Celiac disease,Gluten-free diet,Narratives,Qualitative,research,Screening},
  language     = {eng},
  publisher    = {BioMed Central},
  series       = {Health and Quality of Life Outcomes},
  title        = {Internalizing the threat of risk-a qualitative study about adolescents' experience living with screening-detected celiac disease 5 years after diagnosis},
  url          = {http://dx.doi.org/10.1186/1477-7525-12-91},
  volume       = {12},
  year         = {2014},
}