ArticleThe Journal of craniofacial surgery2018
In Their Own Words: Caregiver and Patient Perspectives on Stressors, Resources, and Recommendations in Craniofacial Microsomia Care.
Article in The Journal of craniofacial surgery, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 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
13 citing papers in PubMed, 27 citations in OpenAlex.
- Experiences of family caregivers regarding the health of children with congenital craniofacial anomalies in Colombia.PLOS global public health · 2026Article
- Embarking on a Treatment Journey: Experiences of Caregivers of Young Children With Craniofacial Microsomia.The Journal of craniofacial surgery · 2025Article
- A Conceptual Thematic Framework of Psychological Adjustment in Caregivers of Children with Craniofacial Microsomia.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2025Article
- Surgical decision-making regarding hearing and ear reconstruction in craniofacial microsomia: Exploring caregiver narratives.Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery · 2025Article
- Psychosocial Experiences of Spanish-Speaking Parents of Children With Craniofacial Microsomia.The Journal of craniofacial surgery · 2025Article
- Establishing an International Interdisciplinary Research Network in Craniofacial Microsomia: The CARE Program.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2024Article
- School participation among young people with craniofacial microsomia and other childhood-onset disabilities.Developmental medicine and child neurology · 2024Article
- Early Experiences of Parents of Children With Craniofacial Microsomia.Journal of obstetric, gynecologic, and neonatal nursing : JOGNN · 2024Article
- Breaking the silence: A qualitative exploration of parental perspectives of children with Goldenhar Syndrome.Heliyon · 2024Article
- Psychosocial and Health-Related Experiences of Individuals With Microtia and Craniofacial Microsomia and Their Families: Narrative Review Over 2 Decades.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2023Review
- Community participation in youth with craniofacial microsomia.Disability and rehabilitation · 2022Article
- Parental Reports of Intervention Services and Prevalence of Teasing in a Multinational Craniofacial Microsomia Pediatric Study.The Journal of craniofacial surgeryArticle
- Caregiver Perspectives on School Participation Among Students With Craniofacial Microsomia.The American journal of occupational therapy : official publication of the American Occupational Therapy AssociationArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 4 institutions in 2 countries.
Funding
Abstract
This study describes stressors, resources, and recommendations related to craniofacial microsomia (CFM) care from the perspective of caregivers of children with CFM and adults with CFM to inform improved quality of healthcare delivery. A mixed method design was used with fixed-response and open-ended questions from an online survey in English. The survey included demographics, CFM phenotypic information, and items about CFM-related experiences across settings. Themes were identified by qualitative analysis of responses to open-ended questions. Respondents (n = 51) included caregivers (n = 42; 90% mothers) and adults with CFM (n = 9; 78% female), who had a mean age of 45 ± 6 years. Most children were male (71%) with an average age of 7 ± 4 years. Respondents were primarily white (80%), non-Hispanic (89%), from the United States (82%), had a college degree (80%), and had private health insurance (80%). Reflecting the high rate of microtia (84%) in the sample, themes centered on the impact of hearing difficulties across settings with related language concerns. Negative social experiences were frequently described and school needs outlined. Multiple medical stressors were identified and corresponding suggestions included: providers need to be better informed about CFM, treatment coordination among specialists, and preference for a family-centered approach with reassurance, empathy, and clear communication. Advice offered to others with CFM included positive coping strategies. Overall, caregivers' and patients' responses reflected the complexity of CFM treatment. Incorporating these perspectives into routine CFM care has the potential to reduce family distress while improving their healthcare.
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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.