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A Letter from the Mother of a Child with Jeune Syndrome: A Qualitative Analysis.

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Title: A Letter from the Mother of a Child with Jeune Syndrome: A Qualitative Analysis.
Authors: Özer Özlü, Nazife Gamze1 (NURSE) nazifegamze.ozerozlu@deu.edu.tr, Akcay Didisen, Nurdan2 (NURSE), Vural, Fatma1 (NURSE), İslamoğlu, Ayşe3 (AUTHOR)
Source: Clinical Pediatrics. Mar2026, Vol. 65 Issue 3, p373-380. 8p.
Subject Terms: *Psychological resilience, *Qualitative research, *Attitudes of mothers, *Mainstreaming in special education, *Psychological adaptation, *Child nutrition, *Developmental disabilities, *Child care, *Mother-child relationship, *Family support, *Written communication, Chest abnormalities, Home care services, Patients' families, Postoperative care, Medical personnel, Optimism, Extremities (Anatomy), Rare diseases, Congenital disorders, Thematic analysis, Psychology of mothers, Convalescence, Phenomenology, Motherhood, Artificial feeding, Multiple human abnormalities, Hope, Genetic testing
Geographic Terms: Türkiye
Abstract: This study explored a mother's experience of caring for her child with Jeune syndrome through a phenomenological qualitative approach using letter writing. Data were analyzed inductively, and four major themes emerged: challenges and successes in medical treatment, emotional resilience and family dynamics, overcoming developmental and educational barriers, and hopes and aspirations for the future. The mother described interactions with health care providers, her child's surgeries, treatments, and postoperative care. She emphasized the importance of family support, emotional struggles, and concerns about her child's future health. Developmental delays, social difficulties, and limited access to formal education were noted. Future plans involved tracheostomy closure, dietary improvements, and genetic testing. Despite these challenges, the mother remained hopeful, emphasizing her child's postoperative recovery and potential for greater independence. This analysis highlights the struggles, victories, and aspirations of a mother facing a rare disease and offers inspiration to others in similar circumstances. [ABSTRACT FROM AUTHOR]
Copyright of Clinical Pediatrics is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Education Research Complete
FullText Text:
  Availability: 0
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DbLabel: Education Research Complete
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PubType: Academic Journal
PubTypeId: academicJournal
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  Data: A Letter from the Mother of a Child with Jeune Syndrome: A Qualitative Analysis.
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  Data: This study explored a mother's experience of caring for her child with Jeune syndrome through a phenomenological qualitative approach using letter writing. Data were analyzed inductively, and four major themes emerged: challenges and successes in medical treatment, emotional resilience and family dynamics, overcoming developmental and educational barriers, and hopes and aspirations for the future. The mother described interactions with health care providers, her child's surgeries, treatments, and postoperative care. She emphasized the importance of family support, emotional struggles, and concerns about her child's future health. Developmental delays, social difficulties, and limited access to formal education were noted. Future plans involved tracheostomy closure, dietary improvements, and genetic testing. Despite these challenges, the mother remained hopeful, emphasizing her child's postoperative recovery and potential for greater independence. This analysis highlights the struggles, victories, and aspirations of a mother facing a rare disease and offers inspiration to others in similar circumstances. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Clinical Pediatrics is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=ehh&AN=191330773
RecordInfo BibRecord:
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    Identifiers:
      – Type: doi
        Value: 10.1177/00099228251394489
    Languages:
      – Code: eng
        Text: English
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        PageCount: 8
        StartPage: 373
    Subjects:
      – SubjectFull: Psychological resilience
        Type: general
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Attitudes of mothers
        Type: general
      – SubjectFull: Mainstreaming in special education
        Type: general
      – SubjectFull: Psychological adaptation
        Type: general
      – SubjectFull: Child nutrition
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      – SubjectFull: Developmental disabilities
        Type: general
      – SubjectFull: Child care
        Type: general
      – SubjectFull: Mother-child relationship
        Type: general
      – SubjectFull: Family support
        Type: general
      – SubjectFull: Written communication
        Type: general
      – SubjectFull: Chest abnormalities
        Type: general
      – SubjectFull: Home care services
        Type: general
      – SubjectFull: Patients' families
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      – SubjectFull: Postoperative care
        Type: general
      – SubjectFull: Medical personnel
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      – SubjectFull: Optimism
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      – SubjectFull: Extremities (Anatomy)
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      – SubjectFull: Rare diseases
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      – SubjectFull: Congenital disorders
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      – SubjectFull: Thematic analysis
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      – SubjectFull: Psychology of mothers
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      – SubjectFull: Motherhood
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      – SubjectFull: Artificial feeding
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      – SubjectFull: Multiple human abnormalities
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      – SubjectFull: Hope
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      – SubjectFull: Genetic testing
        Type: general
      – SubjectFull: Türkiye
        Type: general
    Titles:
      – TitleFull: A Letter from the Mother of a Child with Jeune Syndrome: A Qualitative Analysis.
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            NameFull: Özer Özlü, Nazife Gamze
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            – D: 01
              M: 03
              Text: Mar2026
              Type: published
              Y: 2026
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