ArticleInternational journal of environmental research and public health2018
"Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome.
Article in International journal of environmental research and public health, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers.
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
24 citing papers in PubMed.
- "I felt like a lone ranger": experiences of Australian families living with KIF1A-Associated Neurological Disorder.Journal of community genetics · 2026Article
- Values of Individuals With Rare Genetic Neurodevelopmental Disorders and Their Family/Caregivers in Healthcare: A Scoping Review to Inform Guideline Development.Journal of intellectual disability research : JIDR · 2026Article
- Expert Consensus on Real-World Use of Trofinetide for Rett Syndrome Using a Modified Delphi Method.Annals of the Child Neurology Society · 2026Article
- Diagnostic odyssey and healthcare access challenges in Rett Syndrome: perspectives from Brazilian families.Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo · 2026Article
- Real-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study.Annals of medicine · 2025Article
- Double burdened yet resilient: quality of life of caregivers of people with X-linked hypophosphatemia.JBMR plus · 2025Article
- Caregiver-Reported Economic Impacts of Pediatric Rare Diseases-A Scoping Review.Healthcare (Basel, Switzerland) · 2024Article
- The impact of developmental and epileptic encephalopathies on families: a qualitative study.European journal of pediatrics · 2024Article
- Burden of illness in Rett syndrome: initial evaluation of a disorder-specific caregiver survey.Orphanet journal of rare diseases · 2024Article
- Article
- Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review.Pediatric reports · 2023Review
- Epidemiology and patient journey of Rett syndrome in the United States: a real-world evidence study.BMC neurology · 2023Article
- Quality of life, socioeconomic and psychological concerns in parents of children with tuberous sclerosis complex, STXBP1 and SYNGAP1 encephalopathies: a mixed method study.Frontiers in pediatrics · 2023Article
- "Your Life Turns Upside Down": A Qualitative Study of the Experiences of Parents with Children Diagnosed with Phelan-McDermid Syndrome.Children (Basel, Switzerland) · 2022Article
- Needs of informal caregivers of people with a rare disease: a rapid review of the literature.BMJ open · 2022Review
- Carer burden in rare inherited diseases: a literature review and conceptual model.Orphanet journal of rare diseases · 2022Review
- Parental stress and adjustment in the context of rare genetic syndromes: A scoping review.Journal of intellectual disabilities : JOID · 2022Article
- Gender Differences in Caring for Children with Genetic or Rare Diseases: A Mixed-Methods Study.Children (Basel, Switzerland) · 2022Article
- Navigating the U.S. health insurance landscape for children with rare diseases: a qualitative study of parents' experiences.Orphanet journal of rare diseases · 2021Article
- Evaluating the impact of COVID-19 on rare disease support groups.BMC research notes · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
PubMed holds no abstract for this paper.
Indexed as
Identifiers
What OpenQuestion 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 OpenQuestion graph.