Background: Parents of children with intellectual or developmental disabilities have unique challenges in navigating the developmental period of adolescence. The present study explored the experiences of parents connected with disability services throughout the island of Ireland of parenting their child during adolescence.
Method: Five focus groups were conducted with twenty-five parents of adolescents and young adults with intellectual or developmental disabilities. Parents were asked open-ended questions about their experiences of raising their adolescent child. Transcripts of the focus groups were coded using reflexive thematic analysis.
Results: On the journey from childhood to adolescence parents have to manage a number of different stressors with and for their child. These occur at societal, service provision, familial, and personal levels, with each stressor interacting with others to create vicious circles of struggle.
Conclusions: Parents' struggles are multi-fold, and are not discreet entities that can be separated. The struggle is dynamic and continuous.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.3109/13668250.2022.2057843 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Knowledge of the natural history of deficiency disorder (CDD) is limited to the results of cross-sectional analysis of largely pediatric cohorts. Assessment of outcomes in adulthood is critical for clinical decision-making and future precision medicine approaches but is challenging because of the diagnostic gap and duration of follow-up that would be required for prospective studies. We aimed to delineate the natural history retrospectively from adulthood.
View Article and Find Full Text PDF[SELENON-related myopathy with scoliosis and respiratory failure since early childhood diagnosed through reassessment during pediatric-to-adult healthcare transition: a case report].
Rinsho Shinkeigaku
January 2025
Department of Neurology, The University of Tokyo Hospital.
The patient was a 33-year-old woman with no family history of a similar disorder. At one year of age, she exhibited scoliosis and respiratory failure, necessitating a tracheostomy performed at 5 years of age (1990s). During that time, the patient was provisionally diagnosed with "non-Fukuyama congenital muscular dystrophy" via muscle biopsy.
View Article and Find Full Text PDFBeyond disability: A scientometric review of quality of life in developmental disabilities.
Res Dev Disabil
January 2025
Department of Psychology and Cognitive Science, University of Trento, Rovereto, Italy. Electronic address:
Quality of Life (QoL) is a crucial concept that pertains to an individual's perception of their position in life. In the context of developmental disabilities, QoL is pivotal for improving evidence-based practices, providing support and organizing services for individuals, thereby enabling them to achieve their potential with dignity and equality. Despite its importance, QoL has often not been the primary focus in many studies on developmental disabilities and remains less developed compared to other research areas.
View Article and Find Full Text PDFProtocol for the generation of HLF+ HOXA+ human hematopoietic progenitor cells from pluripotent stem cells.
STAR Protoc
January 2025
Institute for Stem Cell Biology & Regenerative Medicine, Stanford University, Stanford, CA 94305, USA; Department of Developmental Biology, Stanford University, Stanford, CA 94305, USA. Electronic address:
Hematopoietic stem cells (HSCs) generate blood and immune cells. Here, we present a protocol to differentiate human pluripotent stem cells (hPSCs) into hematopoietic progenitors that express the signature HSC transcription factors HLF, HOXA5, HOXA7, HOXA9, and HOXA10. hPSCs are dissociated, seeded, and then sequentially differentiated into posterior primitive streak, lateral mesoderm, artery endothelium, hemogenic endothelium, and hematopoietic progenitors through the sequential addition of defined, serum-free media.
View Article and Find Full Text PDFDevelopmental and Epileptic Encephalopathy: Pathogenesis of Intellectual Disability Beyond Channelopathies.
Biomolecules
January 2025
Institute of Neuroscience, Lobachevsky State University of Nizhny Novgorod, 23 Gagarin Ave., 603022 Nizhny Novgorod, Russia.
Developmental and epileptic encephalopathies (DEEs) are a group of neuropediatric diseases associated with epileptic seizures, severe delay or regression of psychomotor development, and cognitive and behavioral deficits. What sets DEEs apart is their complex interplay of epilepsy and developmental delay, often driven by genetic factors. These two aspects influence one another but can develop independently, creating diagnostic and therapeutic challenges.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!