Patient-driven healthcare recommendations for adults with esophageal atresia and their families.
作者： Chantal A. ten Kate , André B. Rietman , Lieke S. Kamphuis , Saskia Gischler , Demi Lee
DOI: 10.1016/J.JPEDSURG.2020.12.024
关键词:
摘要: Background: Adults with esophageal atresia (EA) require a multidisciplinary follow-up approach, taking into account gastroesophageal problems, respiratory problems and psychosocial wellbeing. Too little is known about the full scope of these individuals’ healthcare needs. We aimed to map all medical needs adults EA their family members, formulate recommendations for daily practice. Methods: A qualitative study was performed, using data from recorded semi-structured interviews two focus groups, one consisting adult patients (n = 15) members 13). After verbatim transcription computerized thematic analysis, results were organized according International Classification Functioning, Disability Health. Ethical approval had been obtained. Results: Healthcare described through 74 codes, classified 20 themes. Most important findings included impact gastrointestinal pulmonary on life, long-term emotional distress parents need standardized program during both child- adulthood. Conclusion: The groups revealed numerous physical mental health as well social difficulties, that attention different providers. have formulated several physicians may use in follow-up.
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