[HTML][HTML] The opinions and experiences of people with intellectual disability regarding genetic testing and genetic medicine: A systematic review

I Strnadová, SM Nevin, JL Scully, EE Palmer - Genetics in Medicine, 2022 - Elsevier
Purpose Genetic testing is frequently conducted on people with intellectual disability. This
systematic literature review sought to assess what research has been conducted with …

Parenting a child with Down syndrome: A qualitative study on parents' experiences and behaviors from a self-determination theory perspective

EN Desimpelaere, LE De Clercq, B Soenens… - Journal of Pediatric …, 2024 - Elsevier
Purpose Raising a child with Down syndrome (DS) brings unique challenges to parents'
psychological functioning. Extensive quantitative research has shown that these parents …

Down syndrome: Parental experiences of a postnatal diagnosis

FM Grane, F Lynn, J Balfe, E Molloy… - Journal of Intellectual …, 2023 - journals.sagepub.com
Globally it is estimated that Down syndrome occurs in 1 in 800 live births (Bull 2020). It has
also been estimated that the incidence of Down syndrome occurs in 1/444 live births in the …

Parents' experiences of having a child with down syndrome and sleep difficulties

JK Chawla, E Cooke, MC Miguel… - Behavioral Sleep …, 2023 - Taylor & Francis
Objectives Sleep disorders are prevalent in children with Down Syndrome (DS). However,
sleep treatment is not always readily accessed by this group. This study aims to understand …

Stressful experiences and coping strategies of parents of young children with Down syndrome: A qualitative study

P Celik, A Kara Uzun - Journal of Applied Research in …, 2023 - Wiley Online Library
Background Previous studies have focused mostly on the negative experiences of parents of
children with Down syndrome. We aimed to explore both the stressful experiences and …

Caregivers' perceptions and experience of caring for persons with Down syndrome in Kuwait: A qualitative study

A AlShatti, D AlKandari, H AlMutairi… - International Journal …, 2021 - Taylor & Francis
Aim and Objective: This study aimed to explore how caregivers of persons with Down
syndrome (DS) believe caring had an impact on their own lives. A secondary objective was …

[HTML][HTML] Views on disability and prenatal testing among families with Down syndrome and disability activists: A comparative analysis of interviews from Germany and …

T Nov-Klaiman, M Frisman, AE Raz… - Social Science & …, 2022 - Elsevier
The prenatal genetic testing arena has witnessed great changes over the past decades and
has been the focus of extensive discussion of its ethical, legal, and social implications …

Impact of a prenatal screening program on the Down syndrome phenotype: An interrupted time series analysis

EH Steffensen, LH Pedersen, S Lou… - Acta Obstetricia et …, 2023 - Wiley Online Library
Introduction We hypothesized that children with Down syndrome who were born after the
implementation of first‐trimester combined screening for trisomy 13, 18, and 21 and a …

Vocational identity in decision-making for terminating/continuation of pregnancy following non-invasive prenatal testing and hypothetical diagnosis among Japanese …

S Sunagozaka, A Tsutsumi - Plos one, 2024 - journals.plos.org
The use of prenatal testing in Japan is expected to increase. However, there are ethical
concerns regarding pregnancy termination upon the detection of fetal chromosomal …

Women's worries about prenatal screening tests suspected of fetal anomalies: a qualitative study

SM Mirtabar, Z Pahlavan, S Aligoltabar, S Barat… - BMC Women's …, 2023 - Springer
Background Pregnant women with suspected fetal anomalies experience a great deal of
stress following prenatal screening tests. The present study aimed to investigate women's …