Even though it is already known that parents of children with developmental delays or disabilities experience higher parenting stress than families of typically developing children, the contributing ...factors need to be analyzed in more detail. The aim of this cross-sectional study was to examine the influence of demographic characteristics on parenting stress from caring for a disabled child and to identify possible protective or additional stressful social factors. A total of 611 mothers and fathers of children with developmental delays, chronic diseases, or disabilities completed two questionnaires during their medical appointments at the Children's Development Center (CDC) of Leipzig University Hospital between June 2020 and February 2021. These consisted of the German versions of the Parenting Stress Index (PSI) and the Impact on Family Scale (IOFS). To determine differences between the various groups, we used parametric and non-parametric tests. Mothers and single parents are significantly more strained than fathers and non-single parents. Parents with vocational training, those who graduated with a higher-level diploma, and those within employment report a higher financial burden. While unemployed and full-time workers experience the lowest stress, parents who work part-time or exclusively take care of their child show higher levels of stress. Looking at the age of the child, parents of children of young primary school age are the most stressed, and those of infants are the least stressed. These findings suggest that mothers and single parents especially should receive more support, and parents need to be provided with more attention during their child's entry into school. Possible limitations and the influence of the COVID-19 pandemic are discussed.
Abstract Purpose Anxiety and depression are frequent comorbidities in people with epilepsy (PWE), but possible gender differences are often neglected. The aim of the present study was to analyze if ...men and women with epilepsy differ with regard to anxiety and depressive symptoms and to identify possible predictors. Methods Adult consecutive PWE ( N = 302; 53% women) completed self-report questionnaires, including the depression module of the Patient Health Questionnaire (PHQ-9), the anxiety module of the Hospital Anxiety and Depression Scale (HADS-A) and the subscales “medication effects” and “seizure worry” of the Patient-weighted Quality of Life in Epilepsy Inventory-31-P (QOLIE-31-P). Results There was no gender difference in extent of anxiety ( p = .532), which was mainly due to higher anxiety levels in men compared to the general population. The gender difference in depressive symptoms was significant ( p = .009), with female patients being more affected. The most important predictors for anxiety and depressive symptoms were detrimental effects of medication (QOL medication effects) and of seizure worry (QOL seizure worry). Moreover, these predictors were more closely associated with anxiety and depressive symptoms in men. Conclusion Future intervention studies could show whether providing more information about the illness and medication effects may improve anxiety and depression. Our results suggest that such interventions should be tailored to the different needs of men and women.
Background
Parents of children with developmental disorders (DD) or disabilities report greater parenting stress than parents of typically developing children. To minimise this stress, stressful ...factors need to be known and stress needs to be recognised early. The present cross‐sectional study aims to systematically assess and compare parenting stress in families of children with various types of disabilities. In addition, the assessment of parenting stress by attending paediatricians will be evaluated.
Methods
We surveyed 611 parents about their parenting stress at the Children's Development Center (CDC). Three questionnaires, including the German versions of the Parenting Stress Index (PSI) and Impact on Family Scale (IOFS), were used to evaluate parenting stress. Furthermore, attending paediatricians assessed of the child's type of disability and their perception of parenting stress in a separate questionnaire.
Results
Fifty‐five percent of all parents reported stress at a clinically relevant level, 65% in the child domain and 39% in the parent domain of the PSI. Parenting stress differed significantly across diagnostic categories (p < 0.01) and was associated with childhood disability related issues of behaviour, sleep or feeding issues. Parenting stress was often underestimated by the paediatricians, especially when the children had disabilities perceived as less severe. In one‐third of parents with clinically relevant total stress, paediatricians reported low stress levels. Parent‐reported financial problems, social isolation, and partnership conflicts were not suspected by paediatricians in ≥85% of cases.
Conclusions
Clinically relevant parenting stress was found more often than in comparable studies. An assessment of parenting stress by paediatricians may be complicated by time constraints in medical appointments, the mainly child‐centred consultation, or restricted expression of parents' stress. Paediatricians should move from a purely child‐centred to a holistic, family‐centred approach to treatment. Routine screening of parenting stress using standardised questionnaires could be helpful to identify affected families.
Germline pathogenic variants in two genes encoding the lysine-specific histone methyltransferase genes SETD1A and SETD2 are associated with neurodevelopmental disorders (NDDs) characterised by ...developmental delay and congenital anomalies. The SETD1A and SETD2 gene products play a critical role in chromatin-mediated regulation of gene expression. Specific methylation episignatures have been detected for a range of chromatin gene-related NDDs and have impacted clinical practice by improving interpretation of variant pathogenicity. To investigate if SETD1A and/or SETD2-related NDDs are associated with a detectable episignature, we undertook targeted genome-wide methylation profiling of > 2 M CpGs using a next generation sequencing based assay. Comparison of methylation profiles in patients with SETD1A variants (n = 6) did not reveal evidence of a strong methylation episignature. Review of the clinical and genetic features of SETD2 patient group revealed that, as reported previously, there were phenotypic differences between patients with truncating mutations (n = 4, Luscan-Lumish syndrome; MIM:616831) and those with missense codon 1740 variants (p.Arg1740Trp (n = 4) and p.Arg1740Gln (n = 2)). Both SETD2 subgroups demonstrated a methylation episignature which was characterised by hypomethylation and hypermethylation events respectively. Within the codon 1740 subgroup, both the methylation changes and clinical phenotype were more severe in those with p.Arg1740Trp variants. We also noted that two of 10 cases with a SETD2-NDD had developed a neoplasm. These findings reveal novel epigenotype-genotype-phenotype correlations in SETD2-NDDs and predict a gain-of-function mechanism for SETD2 codon 1740 pathogenic variants.
The consumption of illegal substances during pregnancy is an increasing social and medical issue. Main substances of prenatal drug exposure are beside tehtrahydrocannabinol (THC), opioids and ...methamphetamine. The effect of these substances on the long-term development of children remains uncertain.
Since 2012 newborn infants born at the university hospital of children at Leipzig which were prenatal exposed to drugs were followed long-term at the out-patient clinic for child protection. For 42 children with prenatal opioid or methamphetamine exposure the developmentent was analysed using the Bayley Scales (BSID III) at the age of 2-3 years. The children were compared with 84 unexposed control children. One case matched to 2 controls, adapted by age, gender, gestational age and birth weight.
Motoric development between prenatal methylamphetamine, opioid exposed children and the control group showed no significant difference. Methylamphetamine exposed children (n=23) At 2 exposure show significantly lower scores in cognition and language (79,1 compared 95,9 of the control group), opioid exposed children have a slight cognitive deficits with a medium score of 91,7 (n=19). 56% of the methamphetamine group were developmentally retarded at the measurement date. Additionally, children had significant lower Bayley Scores which had single parent and/ or low educational and professional qualifications of their caregiver. Both substances increased the risk of postnatal complications to 46-53% despite of similar gestational ages in all groups.
Children with prenatal methamphetamine or opioid exposure seem to have cognition and language deficits at 2 and 3 years of age. Methamphetamine might have a higher negative effect than opioids. The psychosocial risk factors associated with parental drug abuse are important for achieving age-appropriate development.
For several years the German healthy child clinics program has been a highly appreciated preventive measure and is subject to constant development. However, attendance depends on the families' ...sociodemographic situation. Findings are documented in a medical checkup booklet (the so-called Gelbes Heft). Currently, there is no procedure to use the data collected for epidemiological purposes nor to evaluate the pediatric prevention measures in Germany.
Between 2011 and 2016, we recruited 3480 study participants for our population-based cohort study LIFE Child in Leipzig. 90.6 % submitted their check-up booklets which were subsequently scanned, the data was digitalized and transmitted to a computerized form. Furthermore, data on social status (so-called Winkler-Index) were collected for each family using a structured questionnaire. The study population consisted of the families' oldest child for whom both data sets were available.
The transmission of data from the check-up booklets was time-consuming and cost-intensive due to large datasets, uncoded diagnoses as well as the necessity of trained employees for transferring often illegible handwriting. Early diagnostic tests for children enjoy a high level of acceptance among all social classes. With increasing age, attendance rate decreases gradually. Only 83 % of the population with a lower social status attend the U9 test. The documentation of diagnoses in the check-up booklets was implausible because the frequency fluctuated heavily between the different check-up time points. With only less than 2 %, the documentation of psychosocial difficulties in a child was particularly surprising
It is not possible to draw conclusions regarding the prevalence of target diseases from the frequency of documented findings in the check-up booklets. In order to make the data both comparable and evaluable, documentation must be digitalized in the future.
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