Background: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of neurodevelopmental disorders without yet having a formal diagnosis.
Aim: This study aims to deepen our understanding of the need for support among families with young children with neurodevelopmental difficulties. Specifically, it explores parents' perspectives concerning their children, life circumstances, and emotional experiences in parenting.
Methods And Procedures: Qualitative semi-structured interviews were conducted with ten parents of children aged 2.5-5 years, referred to a child psychologist due to reported neurodevelopmental difficulties. The interviews were transcribed and analysed using qualitative content analysis.
Outcomes And Results: Two themes, each containing four and three categories, respectively, emerged in the analysis: Parenting our child with neurodevelopmental difficulties is tough in so many ways and Prevent, manage and make up like a Pro.
Conclusion And Implications: The parents express very similar challenges, difficulties and problems as parents of children with diagnosed neurodevelopmental disorders. The main difference lies in the lack of accessible support or help for these parents.
What This Paper Adds: This study provides insights into how parents of children with suspected neurodevelopmental difficulties perceive their child and their overall life circumstances. The narratives show the challenges these parents face due to their children's multifaceted difficulties, leading to a need for multi-disciplinary support from professionals. The narratives also illustrate the strong emotions that arise in parenting, which in itself indicates a need for support. The study also provides further support for the importance of parents connecting with others facing similar life circumstances. The families often feel isolated despite the need for increased informal support in terms of more adults being involved with the children.
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http://dx.doi.org/10.1016/j.ridd.2024.104825 | DOI Listing |
Case Rep Genet
January 2025
Medical Investigation of Neurodevelopmental Disorders (MIND) Institute, University of California, 2825 50th Street, Davis, Sacramento 95817, California, USA.
Fragile X syndrome (FXS) presents with autism spectrum disorder (ASD), intellectual disability, developmental delay, seizures, hypotonia during infancy, joint laxity, behavioral issues, and characteristic facial features. The predominant mechanism is due to CGG trinucleotide repeat expansion of more than 200 repeats in the 5'UTR (untranslated region) of (Fragile X Messenger Ribonucleoprotein 1) causing promoter methylation and transcriptional silencing. However, not all patients presenting with the characteristic phenotype and point/frameshift mutations with deletions in have been described in the literature.
View Article and Find Full Text PDFFront Psychiatry
January 2025
Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.
Introduction: Early life exposure to adversity and stress has been shown to sensitize young people to later negative life events (LEs), leading to increased susceptibility to mental health problems. We explored this question by testing whether exposure to severe institutional deprivation moderated the effect of adolescent exposure to LE on early adult depression and anxiety. To test the specificity of these effects, we contrasted the effects on these outcomes with neuro-developmental problems (autism and disinhibited social engagement), known from previous studies to be associated with deprivation from early childhood.
View Article and Find Full Text PDFFront Psychiatry
January 2025
School of Education Science, Jiangsu Normal University, Xuzhou, China.
Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by significant impairments in social interaction, often manifested in facial recognition deficits. These deficits hinder individuals with ASD from recognizing facial identities and interpreting emotions, further complicating social communication. This review explores the neural mechanisms underlying these deficits, focusing on both functional anomalies and anatomical differences in key brain regions such as the fusiform gyrus (FG), amygdala, superior temporal sulcus (STS), and prefrontal cortex (PFC).
View Article and Find Full Text PDFClin Genet
January 2025
Clinical and Molecular Genetics Area, Vall d'Hebron Hospital, Medicine Genetics Group, Vall d'Hebron Research Institute (VHIR), Barcelona, Spain.
Bainbridge-Ropers Syndrome (BRPS) is a genetic condition resulting from truncating variants in the ASXL3 gene. The clinical features include neurodevelopmental and language impairments, behavioral issues, hypotonia, feeding difficulties, and distinctive facial features. In this retrospective study, we analyzed 22 Spanish individuals with BRPS, aiming to perform a detailed clinical and molecular description and establish a genotype-phenotype correlation.
View Article and Find Full Text PDFArch Dis Child Fetal Neonatal Ed
January 2025
Department of Paediatrics and Child Health, INFANT Centre, University College Cork, Cork, Ireland
Objective: To determine survival and neurodevelopmental outcomes in the Hypotension in Preterm (HIP) trial.
Design: Prospective follow-up of infants enrolled in randomised controlled trial.
Participants: 58 infants born before 28 weeks of gestation with low mean arterial blood pressure.
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