Beta talasemi majörlü çocukların güçlendirilmesi
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Dosyalar
Tarih
2019
Yazarlar
Dergi Başlığı
Dergi ISSN
Cilt Başlığı
Yayıncı
Ege Üniversitesi, Sağlık Bilimleri Enstitüsü
Erişim Hakkı
info:eu-repo/semantics/openAccess
Özet
Amaç: Bu araştırmada, 12-18 yaş arası Beta Talasemi Majörlü çocukların hastalık sürecine ilişkin problemleri tanımlanarak, bireyselleştirilmiş güçlendirme eğitimleri ile güçlendirilmeleri amaçlanmıştır.
Yöntem: Bu araştırma, karma tipte bir çalışmadır. Birinci aşama, Beta Talasemi Majörlü çocukların hastalık sürecine ilişkin problem ve gereksinimlerinin belirlenmesi olup; fenomenolojik yöntem kullanılmıştır. İkinci aşamada ise, nitel yöntemle tanımlanan hastalık sürecine ait gereksinim duyulan konuların, güçlendirme modeli kapsamında ele alınmasıdır. Bu gereksinimlere yönelik eğitimin verilmesi ve bireyselleştirilmiş güçlendirme eğitiminin etkinliğinin incelenmesinde nicel yöntem kullanılmıştır. Araştırmanın örneklemini 12-18 yaş arası Beta Talasemi Majörlü 15 çocuk oluşturmuştur. Veriler, bireysel görüşmelerle toplanmıştır. Verilerin toplanma sürecinde, "Tanıtıcı Bilgi Formu", "Yarı Yapılandırılmış Görüşme Formu" ve “Beta Talasemi Majörlü Çocukların Gereksinimlerini Belirleme Soru Formu” kullanılmıştır.
Bulgular: Araştırmada yer alan katılımcıların yaş ortalaması 15.46±0.42’dir. Çocuklarla yapılan görüşmede tedavi süreci, aile süreci ve sosyal hayat olmak üzere üç tema yer almıştır. Beta Talasemi Majörlü çocukların altısı hastalığın genetik geçişli olduğunu bilmediğini, eritrosit transfüzyonundan bir kaç gün önce yorgunluk, baş ağrısı, halsizlik gibi sağlık problemeri yaşadığını ve bu problemleri nasıl yöneteceğini bilemediğini ifade etmiştir. Çocukların 12’sinin demir şelasyon tedavisini ve tümünün de destek tedavisini düzenli olarak kullanmadığı saptanmıştır. Tedavinin yan etkilerini, hastalığın kesin tedavisini ve gelecekteki tedavilerin neler olduğunu bilmedikleri ve beslenme ilkelerine dikkat etmedikleri görülmüştür. Çocukların Beta Talasemi Majör’ün tedavi sürecinin yan etkilerinden dolayı kendilerini mutsuz, üzgün, sinirli, kızgın ve kötü hissettikleri, gelecek kaygısı yaşadıkları saptanmıştır. Bakım sürecinde öncelikli sorumluluğu annelerin üstlendiği görülmüştür. Yanısıra, ailelerin çocuklarına karşı aşırı korumacı tutum sergiledikleri, ekonomik olarak zorlandıkları saptanmıştır. Çocukların ise, hastalığı arkadaşlarından sakladıkları, öğretmenlerine detaylı hastalık bilgisi vermedikleri belirlenmiştir. Benzer şekilde, hastalığın akademik başarılarını ve günlük yaşamlarını etkilediği saptanmıştır. Çocukların ön test gereksinim belirleme soru formu toplam puan ortalaması 30.73±2.38 iken, birinci son testin ilk uygulamasında toplam puan ortalaması 48±3.50 ve ikinci son testin uygulamasında toplam puan ortalaması 47.86±3.52’dir.
Sonuç: Yapılan çalışmanın sonucunda, çocukların hastalık bilgisi, tedavi süreci, anne/baba ilişkisi ve sosyal hayata yönelik gereksinimleri olduğu belirlenmiştir. Bu gereksinimler doğrultusunda verilen bireyselleştirilmiş eğitimin, çocukların güçlendirilmesinde etkili olduğu son test puan ortalamaları ile saptanmıştır.
Aim: In this study, it was aimed to identify the problems related to the disease process of children with Beta Thalassemia Major between the ages of 12 and 18, and to be strengthened that training them with individualized care training. Methods: This research is a mixed type study. In the first stage, it is aimed to determine the problems and needs of children with Beta Thalassemia Major in relation to the disease process; phenomenological method was used. In the second stage, the issues that are required by the qualitative method are discussed within the scope of the empowerment model. The quantitative method was used to provide training for these requirements and to examine the effectiveness of the model. The sample of the study consisted of 15 children with Beta Thalassemia Major aged 12-18 years. Data were collected through individual interviews. In the process of collecting data, “The Introductory Information Form”, “Semi-Structured Interview Form” and “The Determination of the Needs of Children with Beta Thalassemia Major Questionnaire” were used. Results: The mean age of the participants was 15.46 ± 0.42.In the interview with children, three themes were formed: treatment process, family process and social life. Six children with Beta Thalassemia Major stated that they did not know that the disease was genetically inherited and that they had health problems such as fatigue, headache, weakness a few days before erythrocyte transfusion and that they did not know how to manage this problem. It was determined that 12 of the children did not use iron chelation therapy and not all of them regularly. It was observed that they did not know the side effects of treatment, the exact treatment of the disease and what the future treatments were and did not pay attention to the nutrition principles. It was found that the children felt unhappy, sad, angry, angry and bad because of the side effects of Beta Thalassemia Major treatment process and had anxiety about the future. It was seen that the mothers took the primary responsibility during the care process. In addition, it was found that families exhibited excessive protective attitude towards their children and were economically challenged. It was determined that the children were hiding the disease from their friends and did not give detailed disease information to their teachers. Similarly, the disease was found to affect academic achievement and daily life. While the total score average of the pre-test requirement determination questionnaire of the children was 30.73 ± 2.38, the first post-test total score was 48 ± 3.50 and the second post-test mean score was 47.86 ± 3.52. Conclusion: As a result of the study, it was determined that children have information about disease, treatment process, mother/father relationship and social life. According to these requirements, individualized education was found to be effective in empowering children with post-test averages.
Aim: In this study, it was aimed to identify the problems related to the disease process of children with Beta Thalassemia Major between the ages of 12 and 18, and to be strengthened that training them with individualized care training. Methods: This research is a mixed type study. In the first stage, it is aimed to determine the problems and needs of children with Beta Thalassemia Major in relation to the disease process; phenomenological method was used. In the second stage, the issues that are required by the qualitative method are discussed within the scope of the empowerment model. The quantitative method was used to provide training for these requirements and to examine the effectiveness of the model. The sample of the study consisted of 15 children with Beta Thalassemia Major aged 12-18 years. Data were collected through individual interviews. In the process of collecting data, “The Introductory Information Form”, “Semi-Structured Interview Form” and “The Determination of the Needs of Children with Beta Thalassemia Major Questionnaire” were used. Results: The mean age of the participants was 15.46 ± 0.42.In the interview with children, three themes were formed: treatment process, family process and social life. Six children with Beta Thalassemia Major stated that they did not know that the disease was genetically inherited and that they had health problems such as fatigue, headache, weakness a few days before erythrocyte transfusion and that they did not know how to manage this problem. It was determined that 12 of the children did not use iron chelation therapy and not all of them regularly. It was observed that they did not know the side effects of treatment, the exact treatment of the disease and what the future treatments were and did not pay attention to the nutrition principles. It was found that the children felt unhappy, sad, angry, angry and bad because of the side effects of Beta Thalassemia Major treatment process and had anxiety about the future. It was seen that the mothers took the primary responsibility during the care process. In addition, it was found that families exhibited excessive protective attitude towards their children and were economically challenged. It was determined that the children were hiding the disease from their friends and did not give detailed disease information to their teachers. Similarly, the disease was found to affect academic achievement and daily life. While the total score average of the pre-test requirement determination questionnaire of the children was 30.73 ± 2.38, the first post-test total score was 48 ± 3.50 and the second post-test mean score was 47.86 ± 3.52. Conclusion: As a result of the study, it was determined that children have information about disease, treatment process, mother/father relationship and social life. According to these requirements, individualized education was found to be effective in empowering children with post-test averages.
Açıklama
Anahtar Kelimeler
Talasemi, Gereksinim, Bireyselleştirilmiş Eğitim, Güçlendirme, Thalassemia, Requirements, Individualized Education, Empowerment
