Families caring for children with disabilities face particular challenges and demands compared to those caring for children without disabilities. Evidence suggests that there is considerable variation in how caregivers of children with disabilities adapt to their caregiving demands and stressors. The different adaptations to the children with disabilities may cause different impacts on the health and well-being of caregivers. This paper provides a brief overview of the literature on the impact of caring for children with disabilities on the health and quality of life of caregivers and the factors related to the health outcomes and quality of life. A literature search was conducted by using various electronic databases, including PsychINFO, ScienceDirect, ProQuest, and MEDLINE using specific key terms. Thirty-one articles published in peer-review journals from the last six years (2009-2014) were reviewed. Most of the studies were quantitative studies. Factors discussed that impact on caregivers' health and quality of life include the caregivers' sociodemographic background and child's disability-related factors. Several mediators and moderators including coping strategies, social support, parental stress, self-esteem and self-efficacy are described in this paper. This review highlighted the importance of these factors to better understand the complex nature of stress processes and the caregivers' adaptations to their children's disabilities.
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http://dx.doi.org/10.1016/j.ajp.2016.07.007 | DOI Listing |
Eur J Pediatr
January 2025
CESTA VON, Bratislava, Slovakia.
Unlabelled: High rates of childhood neurodisability are reported among the Roma, Europe's largest ethnic minority community. Interventions targeting early child development (ECD) during the first 2 years of life can improve neurodevelopmental outcomes in vulnerable children; however, evidence from Roma preschoolers is scarce. In a quasi-experimental observational study, we compared neurodevelopmental outcomes at age 2 years, measured on the INTERGROWTH-21st Project Neurodevelopmental Assessment (INTER-NDA), between Roma children receiving a community-based ECD intervention (RI, n = 98), and age- and sex-matched Roma and non-Roma children (RC, n = 99 and NRC, n = 54, respectively) who did not receive the intervention in Eastern Slovakia.
View Article and Find Full Text PDFPediatrics
January 2025
Complex Care, Division of General Pediatrics, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
Pediatric home health care represents a vital system of care for children with disability and medical complexity, encompassing services provided by family caregivers and nonfamily home health care providers and the use of durable medical equipment and supplies. Home health care is medically necessary for the physiologic health of children with disability and medical complexity and for their participation and function within home, school, and community settings. While the study of pediatric home health care in the United States has increased in the last decade, its research remains primarily methodologically limited to observational studies.
View Article and Find Full Text PDFTurk J Pediatr
December 2024
Department of Pediatric Neurology, Ankara Bilkent City Hospital, Ankara Yildirim Beyazit University Faculty of Medicine, Ankara, Türkiye.
Background: Metoclopramide, a dopamine antagonist employed for its antiemetic effects, can precipitate neuropsychiatric adverse effects, including extrapyramidal symptoms and, in a few instances, acute psychosis. Although there have been reports of metoclopramide-induced psychosis in elderly individuals, there is no documentation of such incidents in children as far as we are aware.
Case Presentation: This case report describes an 11-year-old girl with a history of mild intellectual disability and attention deficit hyperactivity disorder, managed with 10 mg of methylphenidate daily.
Ther Adv Rare Dis
January 2025
SynGAP Research Fund, 2856 Curie Pl., San Diego, CA 92122, USA.
-related disorder (SRD) is a developmental and epileptic encephalopathy caused by a disruption of the gene. At the beginning of 2024, it is one of many rare monogenic brain disorders without disease-modifying treatments, but that is changing. This article chronicles the last 5 years, beginning when treatments for SRD were not publicly in development, to the start of 2024 when many SRD-specific treatments are advancing.
View Article and Find Full Text PDFBMJ Open
December 2024
Centre for Rehabilitation and Ageing Research, University of Nottingham, Nottingham, UK.
Objective: To codesign and develop an intervention to promote participation and well-being in children and young people (CYP) with acquired brain injury (ABI) and family caregivers.
Design: A complex intervention development study including a scoping review, mixed-methods study, co-design workshop and theoretical modelling.
Setting: Community-dwelling participants in one geographical region of the UK.
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