ArticleScientific reports2025
Perception of psychosocial burden in mothers of children with rare pediatric neurological diseases.
Article in Scientific reports, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Use of Wearable Sensors in Angelman Syndrome: A Systematic Review.Journal of intellectual disability research : JIDR · 2026Pooled it
- Comparison of parental caregivers and associated factors with caregiver burden in rare paediatric diseases.Orphanet journal of rare diseases · 2026Article
- Cocreation of Digital Outcome Measures for Dravet Syndrome: Multistage Co-Design Feasibility Study.Journal of participatory medicine · 2026Article
- Recommendations for the use of clinical outcome assessments in rare disease drug development.EClinicalMedicine · 2026Review
- Cross-attention guided explainable deep transformer model for multi-level classification of rare neurological disorders using MRI images.Scientific reports · 2026Article
- Association between a diagnostic journey in Angelman syndrome and caregivers' quality of life.Journal of neurodevelopmental disorders · 2026Article
- Article
- Social support and maternal caregiving burden in families of children with Angelman syndrome in China: the mediating role of self-stigma.BMC psychology · 2026Article
- Assessing Quality of Life in PACS1 Syndrome Using the KidsLife Scale from Mothers' and Fathers' Perspectives.Behavioral sciences (Basel, Switzerland) · 2026Article
- Beyond illness severity: transdiagnostic cognitive vulnerabilities as independent predictors of psychological distress in parents of children with rare genetic disorders.Frontiers in psychiatry · 2026Article
- Measuring economic burden in families of individuals with Angelman Syndrome in Poland: a caregivers' survey.Orphanet journal of rare diseases · 2025Article
- Parental Stress and Family Quality of Life in Families of Individuals Living With Angelman Syndrome.Journal of intellectual disability research : JIDR · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Parenting a child with rare paediatric neurological diseases (RPNDs) severely affects parents' quality of life and the caregiver burden. Since mothers tend to be the primary caregivers more often, this study focuses on previously unexplored experiences of mothers of four RPNDs: 22q11.2 deletion syndrome (22q11.2DS), Angelman syndrome (AS), Dravet syndrome (DS) and Williams syndrome (WS). A cross-sectional survey of 302 mothers revealed that, while caring for RPND children seriously impacts well-being and stress in all mothers, there also exist some significant differences in diagnostic experiences, quality of life and the caregiver burden across conditions. DS and AS mothers reported difficulties in the access to and reimbursement for modern genetic testing and psychological support. DS and WS mothers were concerned over the impact of the delayed diagnosis on unnecessary hospitalisations and medication in their children. 22q11.2DS mothers felt more supported than others. While DS and AS mothers reported a greater burden in caregiving and reduced quality of life, WS mothers reported significantly lower burdens and higher scores across all quality-of-life domains. Mothers' financial well-being, employment status and early diagnosis significantly influenced their experiences. These findings underscore the need for tailored support for RPND mothers, with a focus on early diagnosis and financial and psychological help.
Indexed as
Identifiers
What Socratic holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.