Health literacy in parents of children with Down syndrome
| Date | 07 May 2024 |
| Pages | 88-97 |
| DOI | https://doi.org/10.1108/AMHID-10-2023-0038 |
| Published date | 07 May 2024 |
| Author | Gülfer Akça,Aslihan Sanri,Unal Akca |
Health literacy in parents of children with
Down syndrome
Gülfer Akça, Aslihan Sanri and Unal Akca
Abstract
Purpose –This study aims to evaluatethe health literacy level of the parents of children diagnosedwith
Down syndrome(DS) within one institution in Turkey.
Design/methodology/approach –A cross-sectional survey measuring demographics, information of
the child and the parent and health literacy was administered to participants. The health literacy levels
in the study were measured with the European Health Literacy Scale (EHLS), which consists of 47
questions.
Findings –Of the 65 participants who completed the questionnaire, 56.9% were mothers, 68.1%
were diagnosed in the neonatal outpatient clinic examination after birth, and 58.5% stayed in the
neonatal intensive care unit after birth. The mean score of the IHLS scale was 25.06 66.59. Of the
parents, 63.1% were found to be inadequate, 18.5% problematic-limited, and 18.5% adequate
health literate. Any parent with excellent health literacy level was identified. High education level
(p<0.001), high income level (p<0.001), living in the city center (p<0.05), planned pregnancy
(p<0.05) and being a health worker (p<0.001) were found to be statistically significant with a
high EHSL score.
Research limitations/implications –The presence of Down syndrome(DS) in achild also necessitates
ongoing monitoring for a range of conditions, including eye diseases and heart disease.Some surgical
procedures,such as heart or gastrointestinal surgeries,may also be required. Additionally,the child may
requirethe administration of various medications.Finally, due to the potential lifelongneed for assistance,
the child may require the support of an adult throughout their lifetime. This is because of the child’s
inability to liveindependently due to their mental state.Therefore, parent education is the most important
issue in the follow-upof the disease.
Practical implications –To the best of the authors’ knowledge, this is the first study to determine that parents
of children diagnosed with DS have very limited knowledge of the disease and health literacy. Explanation of
current diseases, treatments and training of parents should also be included in genetic counseling.
Social implications –DS is a chromosomaldisease that requires multidisciplinarycare. Parents have to
know the courseof the disease and its complications.
Originality/value –The findings of this study indicate that parents of children with Down syndrome
exhibit a profound lack of knowledge regarding the nature of their child’s condition and the available
healthcare options. It is therefore imperative that genetic counseling incorporates an explanation of the
diagnoseddiseases, treatments, and educationalresources for parents.
Keywords Down syndrome, Trisomy 21, Genetic counseling, Parent education, Informed consent,
Health literacy
Paper type Research paper
What is known about this topic: Down syndrome is a chromosomal disease that
requires multidisciplinary care. Parents have to know the course of the disease
and its complications.
What this paper adds to the topic: To the best of the authors’ knowledge, this is the first
study to determine that parents ofchildren with Down syndrome have very limited
knowledge of the disease and health literacy. Explanation of current diseases, treatments
and training of parents should also be includedin genetic counseling.
Gu
¨lfer Akc¸a is based at
Department of Pediatrics,
Faculty of Medicine,
Samsun University, Canik,
Turkey. Aslihan Sanri is
based at Department of
Pediatric Genetics, Faculty
of Medicine, Samsun
University, Canik, Turkey.
Unal Akca is based at
Department of Pediatric
Neurology, Faculty of
Medicine, Samsun
University, Canik, Turkey.
Received 18 October 2023
Revised 11 February 2024
Accepted 7 April 2024
PAGE 88 jADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES jVOL. 18 NO. 22024, pp. 88-97,©Emerald Publishing Limited, ISSN 2044-1282 DOI 10.1108/AMHID-10-2023-0038
Get this document and AI-powered insights with a free trial of vLex and Vincent AI
Get Started for FreeStart Your Free Trial of vLex and Vincent AI, Your Precision-Engineered Legal Assistant
-
Access comprehensive legal content with no limitations across vLex's unparalleled global legal database
-
Build stronger arguments with verified citations and CERT citator that tracks case history and precedential strength
-
Transform your legal research from hours to minutes with Vincent AI's intelligent search and analysis capabilities
-
Elevate your practice by focusing your expertise where it matters most while Vincent handles the heavy lifting
Start Your Free Trial of vLex and Vincent AI, Your Precision-Engineered Legal Assistant
-
Access comprehensive legal content with no limitations across vLex's unparalleled global legal database
-
Build stronger arguments with verified citations and CERT citator that tracks case history and precedential strength
-
Transform your legal research from hours to minutes with Vincent AI's intelligent search and analysis capabilities
-
Elevate your practice by focusing your expertise where it matters most while Vincent handles the heavy lifting
Start Your Free Trial of vLex and Vincent AI, Your Precision-Engineered Legal Assistant
-
Access comprehensive legal content with no limitations across vLex's unparalleled global legal database
-
Build stronger arguments with verified citations and CERT citator that tracks case history and precedential strength
-
Transform your legal research from hours to minutes with Vincent AI's intelligent search and analysis capabilities
-
Elevate your practice by focusing your expertise where it matters most while Vincent handles the heavy lifting
Start Your Free Trial of vLex and Vincent AI, Your Precision-Engineered Legal Assistant
-
Access comprehensive legal content with no limitations across vLex's unparalleled global legal database
-
Build stronger arguments with verified citations and CERT citator that tracks case history and precedential strength
-
Transform your legal research from hours to minutes with Vincent AI's intelligent search and analysis capabilities
-
Elevate your practice by focusing your expertise where it matters most while Vincent handles the heavy lifting
Start Your Free Trial of vLex and Vincent AI, Your Precision-Engineered Legal Assistant
-
Access comprehensive legal content with no limitations across vLex's unparalleled global legal database
-
Build stronger arguments with verified citations and CERT citator that tracks case history and precedential strength
-
Transform your legal research from hours to minutes with Vincent AI's intelligent search and analysis capabilities
-
Elevate your practice by focusing your expertise where it matters most while Vincent handles the heavy lifting