ArticleInternational journal of environmental research and public health2020
Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation.
Article in International journal of environmental research and public health, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 3 of them syntheses that pooled it.
What it found
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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.
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Who cites it
29 citing papers in PubMed, 3 syntheses or guidelines pooled it, 58 citations in OpenAlex.
- Care of Infants and Children with Tracheostomies: An Official American Thoracic Society Clinical Practice Guideline.American journal of respiratory and critical care medicine · 2025Guideline
- Assessing Psychological Harms on Parents and Primary Caregivers of Children Living with a Rare Disease: A Systematic Review of the Scope and Validity of Surveys Utilized.Clinical child and family psychology review · 2025Pooled it
- Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis.International journal of environmental research and public health · 2023Pooled it
- "If I go down, if I crumble, then everybody does" - identity crisis and emotional strain in parents of children with rare and undiagnosed conditions: a qualitative study.Orphanet journal of rare diseases · 2026Article
- Coping with the challenges of caregiving: A qualitative exploration of the experiences of family caregivers of children with rare diseases in South Africa.Journal of genetic counseling · 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
- The relationship between stress, anxiety, and health literacy in parents of children with chronic gastroenterological diseases: a multi-center cross-sectional study.BMC public health · 2025Article
- Quality of Life Among Family Caregivers of Individuals With Rare Diseases: Web-Based Population Study on the Validity and Reliability of the Polish World Health Organization Quality of Life-BREF Questionnaire.JMIR public health and surveillance · 2025Article
- 18q Deletion (de Grouchy Syndrome) in Rural Romania: A Case Report and Healthcare System Challenges.Reports (MDPI) · 2025Article
- Severe cognitive disability, medically complex children and long-term ventilation.Monash bioethics review · 2025Article
- Post-traumatic growth and influencing factors of parents with children with Duchenne muscular dystrophy: a cross-sectional survey study.Italian journal of pediatrics · 2025Article
- The Family Stress Model in families of children with rare diseases: a cross-sectional multilevel path analysis for understanding family dynamics.Frontiers in public health · 2025Observational
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- "In God We Trust": An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland.Journal of religion and health · 2024Article
- Experiences of quality of life and access to health services among rare disease caregivers: a scoping review.Orphanet journal of rare diseases · 2024Article
- Health-Related Quality of Life and Mental Health of Parents of Children with Pediatric Abdominal Tumors.Children (Basel, Switzerland) · 2024Article
- Burden, social support, and coping strategies in family caregivers of individuals receiving home mechanical ventilation: a cross-sectional study.BMC nursing · 2024Article
- Stigma associated with genetic testing for rare diseases-causes and recommendations.Frontiers in genetics · 2024Review
- Predictors of overload in parents of children with neuromuscular diseases.Frontiers in neurology · 2024Article
- Psychosocial impacts of caring for a child with a genetic disorder in Accra, Ghana.Journal of community genetics · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
(1) Parents caring for children and adolescents with rare diseases fear the long-term progression of the child's disease and the loss of their parental role. The aim of this study was to examine the quality of life, mental health and associated protective factors of mothers and fathers caring for children with rare diseases requiring mechanical long-term ventilation. (2) In a cross-sectional design, data on quality of life, mental health, coping mechanisms, social support and family functioning from
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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 OpenQuestion graph.