From diagnosis to routine care in type 1 diabetes in children: Parents’ experiences

Having a child who lives with a Type 1 Diabetes (T1D) can represent a high burden for parents. The objective of our study is to identify and analyze the main challenges expressed by parents so that health care services better meet the needs of parents of T1D children. Semi-structured interviews were...

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Autores principales:	Géraldine Heilporn, Maude Laberge, André Côté, Monia Rekik
Formato:	article
Lenguaje:	EN
Publicado:	The Beryl Institute 2019
Materias:	parents’ experiences type 1 diabetes care trajectory qualitative study Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/3b90e2e47ef54bbe9ccd79e44c74ddb6
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spelling	oai:doaj.org-article:3b90e2e47ef54bbe9ccd79e44c74ddb62021-11-15T04:28:53ZFrom diagnosis to routine care in type 1 diabetes in children: Parents’ experiences2372-0247https://doaj.org/article/3b90e2e47ef54bbe9ccd79e44c74ddb62019-11-01T00:00:00Zhttps://pxjournal.org/journal/vol6/iss3/6https://doaj.org/toc/2372-0247Having a child who lives with a Type 1 Diabetes (T1D) can represent a high burden for parents. The objective of our study is to identify and analyze the main challenges expressed by parents so that health care services better meet the needs of parents of T1D children. Semi-structured interviews were conducted with parents of 19 T1D children regarding detection and diagnosis, initial management at the hospital, post-discharge adaptation including daycare or school reintegration, and long-term T1D monitoring. Data analysis was performed following an inductive approach. The results showed a lack of knowledge regarding T1D in the society, especially for parents and educators. Furthermore, most parents felt overwhelmed at the hospital, and not ready for the intense self-management education (SME). They suggested it could be split over an extended period and discussed from a more practical perspective. Parents’ burden is highest in the post-discharge adaptation stage especially for school reintegration, management of blood glucose levels and calculation of carbohydrates. Finally, returning to a social life was difficult, but contacts with diabetic families was a relief. In conclusion, the SME ought to be flexible and adapted to parents' needs. Spreading it over a longer period would ease families’ experience. Efforts should also be made to alleviate the parents’ burden on the post-discharge adaptation perceived as the most difficult stage, especially for school reintegration where training and resources on T1D should be given to key staff. Public education campaigns would raise awareness and ensure better knowledge of T1D by general population. <strong>Experience Framework</strong> This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Quality%20%26%20Clinical%20Excellence%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-QualityClinicalExcellence">Access other resources</a> related to this lens.</li> </ul>Géraldine HeilpornMaude LabergeAndré CôtéMonia RekikThe Beryl Institutearticleparents’ experiencestype 1 diabetescare trajectoryqualitative studyMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2019)
institution	DOAJ
collection	DOAJ
language	EN
topic	parents’ experiences type 1 diabetes care trajectory qualitative study Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	parents’ experiences type 1 diabetes care trajectory qualitative study Medicine (General) R5-920 Public aspects of medicine RA1-1270 Géraldine Heilporn Maude Laberge André Côté Monia Rekik From diagnosis to routine care in type 1 diabetes in children: Parents’ experiences
description	Having a child who lives with a Type 1 Diabetes (T1D) can represent a high burden for parents. The objective of our study is to identify and analyze the main challenges expressed by parents so that health care services better meet the needs of parents of T1D children. Semi-structured interviews were conducted with parents of 19 T1D children regarding detection and diagnosis, initial management at the hospital, post-discharge adaptation including daycare or school reintegration, and long-term T1D monitoring. Data analysis was performed following an inductive approach. The results showed a lack of knowledge regarding T1D in the society, especially for parents and educators. Furthermore, most parents felt overwhelmed at the hospital, and not ready for the intense self-management education (SME). They suggested it could be split over an extended period and discussed from a more practical perspective. Parents’ burden is highest in the post-discharge adaptation stage especially for school reintegration, management of blood glucose levels and calculation of carbohydrates. Finally, returning to a social life was difficult, but contacts with diabetic families was a relief. In conclusion, the SME ought to be flexible and adapted to parents' needs. Spreading it over a longer period would ease families’ experience. Efforts should also be made to alleviate the parents’ burden on the post-discharge adaptation perceived as the most difficult stage, especially for school reintegration where training and resources on T1D should be given to key staff. Public education campaigns would raise awareness and ensure better knowledge of T1D by general population. <strong>Experience Framework</strong> This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Quality%20%26%20Clinical%20Excellence%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-QualityClinicalExcellence">Access other resources</a> related to this lens.</li> </ul>
format	article
author	Géraldine Heilporn Maude Laberge André Côté Monia Rekik
author_facet	Géraldine Heilporn Maude Laberge André Côté Monia Rekik
author_sort	Géraldine Heilporn
title	From diagnosis to routine care in type 1 diabetes in children: Parents’ experiences
title_short	From diagnosis to routine care in type 1 diabetes in children: Parents’ experiences
title_full	From diagnosis to routine care in type 1 diabetes in children: Parents’ experiences
title_fullStr	From diagnosis to routine care in type 1 diabetes in children: Parents’ experiences
title_full_unstemmed	From diagnosis to routine care in type 1 diabetes in children: Parents’ experiences
title_sort	from diagnosis to routine care in type 1 diabetes in children: parents’ experiences
publisher	The Beryl Institute
publishDate	2019
url	https://doaj.org/article/3b90e2e47ef54bbe9ccd79e44c74ddb6
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From diagnosis to routine care in type 1 diabetes in children: Parents’ experiences

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