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Journals / Güncel Hemşirelik Araştırmaları Dergisi / 2026 / Cilt: 6 Sayı: 2

The Experience of Adolescents and Young Adults Living with Hereditary Angioedema

Herediter Anjiyoödem ile Yaşayan Ergenlerin ve Genç Yetişkinlerin Deneyimleri

Emine Geçkil(Necmettin Erbakan Üniversitesi Hemşirelik Fakültesi)0000-0003-3947-285X
Raheleh Sabetsarvestanı(Necmettin Erbakan Üniversitesi Hemşirelik Fakültesi)0000-0002-1097-7056
Semra Köse(Necmettin Erbakan Üniversitesi Hemşirelik Fakültesi)0000-0003-3828-8874
Havva Bozkurt Alan(NECMETTİN ERBAKAN ÜNİVERSİTESİ)
Pages
92–104
Publication Date
2026-08-29
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AI Summary & Key Takeaways

AI Insight
⚡ TL;DR(Too Long; Didn't Read)

Their resilience should be recognized, and tailored support should be provided by healthcare professionals, along with advocacy for policies that nurture their growth and a brighter future.

📌 3 Key Takeaways

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Objective & Hypothesis:Introduction: Hereditary Angioedema (HAE) is a rare genetic disorder characterized by recurring episodes of submucosal and subcutaneous edema, posing significant physical, emotional, and psychological challenges to patients' well-being.
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Key Findings & Data:Methods: A descriptive qualitative study with a content analysis approach was undertaken in 2023.
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Conclusion & Impact:Their resilience should be recognized, and tailored support should be provided by healthcare professionals, along with advocacy for policies that nurture their growth and a brighter future.
🔬Design:Araştırma Makalesi
📍Scope:2023 Verileri
⚙️Variables:Ergen · Genç yetişkinler · Hemşirelik

Abstract

Introduction: Hereditary Angioedema (HAE) is a rare genetic disorder characterized by recurring episodes of submucosal and subcutaneous edema, posing significant physical, emotional, and psychological challenges to patients' well-being. Purpose: This study aims to explore the experiences of adolescents and young adults living with HAE through a qualitative inquiry. Methods: A descriptive qualitative study with a content analysis approach was undertaken in 2023. Semi-structured interviews were conducted with all nine adolescents and young adults diagnosed with HAE in the daily intravenous immunoglobulin clinic of a Turkish hospital. The MAXDA10 program was used to store and analyze data. Results: The participant’s average age was 21.11±5.51 years. A main theme, ‘navigating the journey of life with hereditary angioedema,’ was identified, along with two subthemes: ‘navigating the uphill journey of life with HAE’ (grasping physical-psychosocial issues, living under the shadow of fear and death, being chained to one’s city, being ever-ready and vigilant, striving to persuade the healthcare team, facing setbacks in education and career, and struggling to attain optimal growth and development) and ‘navigating the downhill journey of life with HAE’ (family backing, embracing the condition, and being empowered by knowing a rare disease). Conclusion : The experience of adolescents and young adults was found to be comparable to navigating a challenging journey through life, involving both uphill struggles and downhill moments. Their resilience should be recognized, and tailored support should be provided by healthcare professionals, along with advocacy for policies that nurture their growth and a brighter future.

Özet

Giriş: Herediter Anjiyoödem (HAÖ), tekrarlayan submukozal ve subkutan ödem ataklarıyla karakterize nadir bir genetik hastalıktır ve hastaların refahı için fiziksel, duygusal ve psikolojik zorluklar önemlidir. Amaç: Bu çalışma, HAÖ ile yaşayan ergen ve genç yetişkinlerin deneyimlerini nitel bir araştırma yoluyla incelemeyi amaçlamaktadır. Yöntemler: İçerik analizi yaklaşımıyla 2023 yılında tanımlayıcı nitel bir çalışma yürütülmüştür. Türkiye'deki bir hastanenin günübirlik intravenöz immunoglobulin kliniğinde HAÖ tanısı konan dokuz ergen ve genç yetişkinin tamamı ile yarı yapılandırılmış görüşmeler gerçekleştirilmiştir. Verileri depolamak ve analiz etmek için MAXDA10 programı kullanılmıştır. Sonuçlar: Katılımcıların ortalama yaşı 21,11±5,51 yıldı. "Herediter anjiyoödemle yaşam yolculuğunda yol almak" ana temasını ve " Herediter anjiyoödemle ile yaşamın zorlu yolculuğunda yol almak" (fiziksel-psikososyal sorunlarla başa çıkmak, korku ve ölüm gölgesinde yaşamak, şehre zincirlenmek, her zaman hazır ve tetikte olmak, sağlık ekibini ikna etmeye çalışmak, eğitim ve kariyerde aksiliklerle karşılaşmak ve optimum büyüme ve gelişmeye ulaşmak için mücadele etmek) ve "HAE ile yaşamın zorlu yolculuğunda yol almak" (aile desteği, durumu benimsemek ve nadir görülen bir hastalığın bilgisiyle güçlenmek) olmak üzere iki alt tema bulunmuştur. Sonuç: Bulgular ergenlerin ve genç yetişkinlerin deneyimlerinin, zorlu mücadeleler ve inişli çıkışlı anlarla karşılaştıkları zorlu bir yaşam yolculuğuna benzetilebileceğini ortaya koymuştur. Dayanıklılıklarını kabul ederek, sağlık profesyonelleri olarak onlara özel destek sağlamalı ve büyümelerini ve daha aydınlık bir geleceklerini sağlayan politikalar savunulabilir.

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Cite This Article

Geçkil, E., Sabetsarvestanı, R., Köse, S., Alan, H. B. (2026). The Experience of Adolescents and Young Adults Living with Hereditary Angioedema. Güncel Hemşirelik Araştırmaları Dergisi, Cilt: 6 Sayı: 2, 92–104. https://doi.org/10.65673/jcnr.1794983

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