Family Experience With Pierre Robin Sequence: A Qualitative Study

Author:

Skirko Jonathan R.1ORCID,Pollard Sarah Hatch1ORCID,Slager Stacey2,Hung Man34,Weir Charlene5

Affiliation:

1. Division of Pediatric Otolaryngology––Head & Neck Surgery, University of Utah and Primary Children’s Hospital, Salt Lake City, UT, USA

2. Department of Pharmacotherapy, University of Utah, Salt Lake City, UT, USA

3. College of Dental Medicine, Roseman University of Health Sciences, South Jordan, UT, USA

4. Department of Orthopaedic Surgery Operations, University of Utah, Salt Lake City, UT, USA

5. Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA

Abstract

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.

Funder

The Primary Children's Foundation

Publisher

SAGE Publications

Subject

Otorhinolaryngology,Oral Surgery

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3