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Published on: September 19, 2019
Family Experience With Pierre Robin Sequence: A Qualitative Study
Jonathan R Skirko1, Sarah Hatch Pollard1, Stacey Slager2
1Division of Pediatric Otolaryngology--Head & Neck Surgery, University of Utah and Primary Children's Hospital, Salt Lake City, UT, USA.
Insights
Parents of children with Pierre Robin Sequence (PRS) experience significant challenges including child well-being and parental isolation. Understanding these concepts can improve care and quality of life for PRS families.
Area of Science:
- Pediatric Health
- Genetics and Rare Diseases
- Qualitative Research
Background:
- Pierre Robin Sequence (PRS) presents complex challenges for affected children and their families.
- Understanding parental perspectives is crucial for comprehensive care and support.
Purpose of the Study:
- To identify key concepts and constructs important to parents of children diagnosed with Pierre Robin Sequence (PRS).
- To inform the development of a PRS-specific quality-of-life instrument.
- To establish a framework for improving the experience of families affected by PRS.
Main Methods:
- Qualitative study employing semi-structured interviews with parents of children under 5 with PRS.
- Iterative open and axial coding of interview transcripts to identify themes.
- Thematic saturation was achieved through 16 parent interviews.
Main Results:
- Five main themes emerged: child's symptoms/well-being, parental grief/isolation, family stress, provider relationships, and psychological/technical growth.
- Core physical issues included feeding, weight gain, and breathing difficulties, causing intense fear.
- Parents reported frustration with care coordination and communication, alongside gratitude for supportive providers.
Conclusions:
- Family experiences with PRS profoundly impact their lives.
- Identified concepts are vital for developing a PRS-specific quality-of-life instrument.
- Findings offer a framework to enhance parental experience and children's quality of care.
Objective:
To identify concepts and constructs important to parents of children with Pierre Robin Sequence (PRS).
Design:
Qualitative study.
Setting:
All children received some care at a tertiary hospital with additional care at outside facilities. Interviews were conducted in nonclinical locations, including remote locations.
Participants:
Parents of children <5 years old with a diagnosis of PRS. Prior treatments included observation, positioning, nasal trumpet, mandibular distraction osteogenesis, tracheostomy, and gastrostomy.
Intervention:
Semi-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.
Results:
Sixteen 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.
Conclusions:
Families 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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