ArticleThe Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association2020
Family Experience With Pierre Robin Sequence: A Qualitative Study.
Article in The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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
5 citing papers in PubMed.
- Health-related quality of life in children with Robin sequence following Tübingen palatal plate treatment in infancy.Archives of disease in childhood · 2026Article
- Descriptive Summary and Experience Introducing the Orthodontic Airway Plate to Treat Upper Airway Obstruction for Infants With Robin Sequence.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026Article
- Comparative Effectiveness of Preepiglottic Baton Plates and Mandibular Distraction in Infants with Robin Sequence.Plastic and reconstructive surgery · 2025Article
- Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks.BMC pediatrics · 2023Article
- Customized Pre-Epiglottic Baton Plate-A Practical Guide for Successful, Patient-Specific, Noninvasive Treatment of Neonates With Robin Sequence.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2021Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
objectiveTo identify concepts and constructs important to parents of children with Pierre Robin Sequence (PRS).
designQualitative study.
settingAll children received some care at a tertiary hospital with additional care at outside facilities. Interviews were conducted in nonclinical locations, including remote locations.
participantsParents of children <5 years old with a diagnosis of PRS. Prior treatments included observation, positioning, nasal trumpet, mandibular distraction osteogenesis, tracheostomy, and gastrostomy.
interventionSemi-structured interviews with individuals (4) and with groups (focus groups, 4) were conducted using open-ended questions and non-leading prompts. Transcripts were analyzed with iterative open and axial coding. Concepts and constructs were identified and refined into codes and central themes. Interviews were conducted until thematic saturation was achieved.
resultsSixteen parents were interviewed. Their experiences were coded into 5 main themes, which can be summarized as: (1) child's symptoms/well-being, (2) parents' grief/isolation, (3) family stress, (4) relationships with providers, and (5) psychological and technical growth. Difficulty with feeding, weight gain, and breathing problems were core physical issues described by participants with associated intense fear. Participants described frustration from not only lack of care coordination, slow diagnoses, and poor communication but also gratitude for providers who served as advocates. Participants described gradual development of knowledge/competencies.
conclusionsFamilies of children with PRS have experiences that profoundly affect their lives. Child's physical symptoms/well-being and parents' psychosocial well-being provide content for a future PRS-specific quality-of-life instrument. Concepts that emerged also provide a framework to improve parents' experience and enhance their children's quality of care.
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Registered trials
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