Background: Parents of disabled children experience some special problems in their lives. It is reported that the parents of disabled children experience a very high level of stress.
Objectives: This study aims to determine the situations in which the parents experience higher levels of stress; to investigate the relation between the levels of stress, depression and anxiety.
Material And Methods: This cross-sectional study was conducted with parents whose children attend a Special Education and Rehabilitation Centre. The total number of parents was 156 and 127 (81.4%) of them voluntarily participated in this study. A questionnaire form, consisting of questions regarding the socio-demographic characteristics of disabled children and of their parents, was given to the participants. Additionally, the participants were asked to score 10 possible stressful situations (financial problems, relations with other people, having limited free time, not to be able to participate in social activities, etc.) on a scale of 0-10 points. Moreover, psychometric scales such as Beck Depression Inventory (BDI) and Spielberger State Trait Anxiety Inventory (STAI) were applied to the participants.
Results: The mean BDI (SD) score was found to be 14.9 (10.9). The mean STAI-state and STAI-trait scores were 55.1 ± 12.2 and 48.6 ± 8.8, respectively. Among the stressful experiences, the parents gave the highest points to 'attitudes of society towards disabled people', 'having limited free time' and 'financial problems' (Top three situations). In multiple analyses, it was found that by employing the BDI there was a relation between financial problems (ß: 0.32, p < 0.01), a decrease in relations with other people (ß: 0.21, p < 0.05), having limited free time (ß: -0.19, p < 0.05) and insufficiency of physical structures (ß: 0.21, p < 0.05). The relations between financial problems (ß: 0.31, p < 0.01) and being an individual who has close relations with disabled person other than his/her parents (ß: 0.27, p < 0.01) were defined employing the STAI-state as effective variables. 'Negative attitudes of society towards disabled people' (ß: 0.29; p < 0.01) were defined employing the STAI-trait as the only effective variable.
Conclusion: Financial problems are the most important factors that affect the psychology of the parents of disabled people. Social programmes that support the parents in respect of both financial matters and home-care facilities should be set up.
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http://dx.doi.org/10.3109/09638281003763804 | DOI Listing |
J Autism Dev Disord
December 2024
Catalight Research Institute, Walnut Creek, CA, US.
Parental stress can be debilitating for parents and their families. This is particularly true for parents who have a child with autism spectrum disorder (ASD) or other intellectual and developmental disability (I/DD). Effective screening and measurement of parental stress leads to accurate and effective intervention.
View Article and Find Full Text PDFAnn Med
December 2025
Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.
Purpose: This study describes the experience of parents of children with developmental and epileptic encephalopathies (DEE) and how the disease impacts their daily lives.
Materials And Methods: A descriptive qualitative study was conducted using purposeful sampling. Twenty-one parents of children with DEEs caused by SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included.
Eur J Neurol
January 2025
Service de Génétique Médicale, CHU Bordeaux, Bordeaux, France.
Purpose: Heterozygous pathogenic variants in SPAST are known to cause Hereditary Spastic Paraplegia 4 (SPG4), the most common form of HSP, characterized by progressive bilateral lower limbs spasticity with frequent sphincter disorders. However, there are very few descriptions in the literature of patients carrying biallelic variants in SPAST.
Methods: Targeted Sanger sequencing, panel sequencing and exome sequencing were used to identify the genetic causes in 9 patients from 6 unrelated families with symptoms of HSP or infantile neurodegenerative disorder.
BMC Musculoskelet Disord
December 2024
Physical medicine & rehabilitation research center, School of medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
Background: Pompe disease is a glycogen storage disease primarily affecting striated muscles. Despite its main manifestation in muscles, patients with Pompe disease may exhibit non-muscle symptoms, such as hearing loss, suggesting potential involvement of sensory organs or the nervous system due to glycogen accumulation.
Aims: This study aimed to evaluate the presence of concomitant small and large fiber neuropathy in patients with Pompe disease.
Sci Rep
December 2024
School of Health and Medical Science, Centre for Health Research, University of Southern Queensland, Toowoomba, Australia.
Delays in development that occur during early childhood can have long-lasting consequences, potentially leading to poor academic achievement. Research has shown that the human immunodeficiency virus can have neurotropic effects, which may impact the development of the brain in infected children. However, there is a scarcity of evidence regarding developmental delays among children with human immunodeficiency virus in the study area.
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