EFFECTIVENESS OF INDIVIDUALIZED EMPOWERMENT EDUCATION ON CHILDREN WITH BETA-THALASSEMIA MAJOR: A MIXED-METHOD STUDY

Year 2022, Volume: 5 Issue: 3, 720 - 734, 26.12.2022

Atiye Karakul , Selmin Şenol

https://doi.org/10.52538/iduhes.1199266

Abstract

Bu çalışmada, Beta Talasemi Majörlü 12-18 yaş çocukların hastalık süreci ile ilgili gereksinimlerinin belirlenmesi ve bu gereksinimlere yönelik verilen bireyselleştirilmiş güçlendirme eğitiminin etkinliğinin incelenmesi amaçlanmıştır. Bu araştırma karma tipte bir çalışmadır. İlk aşamada BTM'li çocukların hastalık süreci ile ilgili sorunlarının ve ihtiyaçlarının belirlenmesi amaçlanmış olup, fenomenolojik yöntem kullanılmıştır. İkinci aşamada, tek grupta ön/son test kontrollü yarı deneysel yöntem kullanılmıştır. Verilerin toplanmasında, "Tanıtıcı Bilgi Formu", "Yarı Yapılandırılmış Görüşme Formu" ve “Beta Talasemi Majörlü Çocukların Gereksinimlerini Belirleme Soru Formu” kullanılmıştır. İlk aşamada: tedavi süreci, aile süreci ve sosyal yaşam olmak üzere üç tema oluşturulmuştur. Çocuklar eritrosit transfüzyonu öncesi yorgunluk, baş ağrısı, halsizlik gibi sağlık sorunları yaşadıklarını belirtmişlerdir. Ayrıca çocuklar hastalıkla ilgili damgalanma nedeniyle kendilerini mutsuz, üzgün ve öfkeli hissettiklerini ifade etmiştir. Güçlendirme eğitiminin etkinliğinin değerlendirildiği ikinci aşamada ise güçlendirme eğitimi ön test, birinci son test ve ikinci son test toplam puan ortalamaları arasında istatistiksel olarak anlamlı bir fark bulunmuştur(X 2 =26.00, p<.001). Yapılan çalışmanın sonucunda, bireyseeştirilmiş güçlendirme eğitiminin çocukların hastalık bilgisi, tedavi süreci, anne/baba ilişkisi ve sosyal hayata yönelik gereksinimleri üzerine olumlu etkisi olduğu belirlenmiştir.

Keywords

Beta Talasemi Major, Güçlendirme, Bireyselleştirilmiş Eğitim, Mix-Metod

EFFECTIVENESS OF INDIVIDUALIZED EMPOWERMENT EDUCATION ON CHILDREN WITH BETA-THALASSEMIA MAJOR: A MIXED-METHOD STUDY

Abstract

In this study, it was aimed to identify the problems related to the disease process of 12-18 years old children with Beta-Thalassemia Major and to examine the effectiveness of individualized empowerment education regarding these needs. This research is a mixed-type study. In the first stage, it is aimed to determine the problems and needs of children with BTM in relation to the disease process; the phenomenological method was used. In the second stage, the pre/post-test controlled quasi-experimental method was used in a single group. "Descriptive Information Form", "Semi-Structured Interview Form" and "Questionnaire for Determining the Needs of Children with Beta Thalassemia Major" were used to collect data. The first stage, three themes were formed: treatment process, family process, and social life. Children stated that they had health problems such as fatigue, headache, weakness before erythrocyte transfusion. Also, the children felt unhappy, sad, and angry because of disease-related stigma. In the second stage, a statistically significant difference was found between the total mean scores of the empowerment education pre-test, first post-test and second post-test(X 2 =26.00, p<.001). As a result of the study, it was determined that individualized empowerment education had a positive effect on children's knowledge of the disease, treatment process, mother/father relationship and social life needs.

Keywords

Beta Thalassemia Major, Empowerment, Individualized Education, Children, Mixed-Method

References

• Aydınok, Y., Oymak, Y., Atabay, B., Aydoğan, G., Yeşilipek, A., Ünal, S., ... & Evim, M. S. (2018). A National Registry of Thalassemia in Turkey: demographic and disease characteristics of patients, achievements, and challenges in prevention. Turkish Journal of Hematology, 35(1), 12-18.
• Ceylan, S. S., Çetinkaya, B., Karabudak, S. S., Becit, N., & Kahraman, S. (2018). Examining the factors affecting quality of life of children and adolescents with Beta-Thalassemia. Journal of Dr. Behcet Uz Children's Hospital, 8(1), 15-22.
• Cheuk, D. K. L.,Mok, A. S. P., Lee, A. C. W., Chiang, A. K. S., Ha, S. Y., Lau, Y. L., &Chan, G. C. F. (2008). Quality of life in patients with transfusion-dependent thalassemia after hematopoietic SCT. Bone Marrow Transplantation, 42(5), 319.
• Chong, L. T.,Chong, M. C., Tang, L. Y., Ramoo, V., Chui, P. L., &Hmwe, N. T. T. (2019). The relationship between psychological distress and religious practices and coping in malaysian parents of children with Thalassemia. Journal of Pediatric Nursing, 48, 15-20.
• Chordiya, K.,Katewa, V., Sharma, P., Deopa, B., &Katewa, S. (2018). Quality of life (QoL) and the factors affecting it in transfusion-dependent thalassemic children. The Indian Journal of Pediatrics, 85(11), 978-983.
• Colaizzi P. Psychological research as the phenomenologist views it. In: Valle RS, King M, editors. Existential phenomenological alternatives for psychology. NewYork: Oxford University Press;1978.
• Erdoğan, S., Nahcivan, N., & Esin, M. N. (Eds.). (2014). Research in nursing: process, practice and critical. Nobel Booksore
• Fergus, N. (2002). An overview of thalassemia for parents adopting internationally. International Adoption Health and Medicine, 5(1), 1-15.
• Gharaibeh, H., Barqawi, M. A., Al-Awamreh, K., & Al Bashtawy, M. (2018). Clinical burdens of β-Thalassemia Major in affected children. Journal of pediatri chematology/oncology, 40(3), 182-187.
• Grewal N K.,Sodhi C, &Sobti P. (2017).To study the quality of life and its relation with socioeconomic status in thalassemic adolescents in a tertiary care center. CHRISMED Journal of Health and Research, 4, 33-37.
• Hakeem, G. L. A.,Mousa, S. O., Moustafa, A. N., Mahgoob, M. H., & Hassan, E. E. (2018). Health-related quality of life in pediatric and adolescent patients with transfusion-dependent ß-thalassemia in upper Egypt (single center study). Health and Quality of Life Outcomes, 16(1), 59,1-9.
• Hossain, M. S., Hasan, M. M., Raheem, E., Islam, M. S., Al Mosabbir, A., Petrou, M., ... & Siddiqee, M. H. (2020). Lack of knowledge and misperceptions about thalassaemia among college students in Bangladesh: a cross-sectional baseline study. Orphanet journal of rare diseases, 15(1), 1-10.
• Ismail, D. K., El-Tagui, M. H., Hussein, Z. A., Eid, M. A., & Aly, S. M. (2018). Evaluation of health-related quality of life and muscular strength in children with beta thalassemia major. Egyptian Journal of Medical Human Genetics, 19(4), 353-357.
• Kumar, N., Turbitt, E., Biesecker, B. B., Miller, I. M., Cham, B., Smith, K. C., & Rimal, R. N. (2019). Managing the need to tell: Triggers and strategic disclosure of thalassemia major in Singapore. American Journal of Medical Genetics Part A, 179(5), 762-769.
• Mansoor, S.,Othman, Z., Othman, A., &Husain, M. (2018). A descriptive study on quality of life among adolescents with beta-thalassemia major in themaldives. International Medical Journal, 25(4), 211-214.
• Moghadam, M. P.,Nourisancho, H., Shahdadi, H., Shahraki, S., Azarkish, B., &Balouchi, A. (2016). Effects of home-care training on the self-efficacy of patients with beta thalassemia major. Materiasocio-medica, 28(5), 357-360.
• Molazem, Z.,Noormohammadi, R., Dokouhaki, R., Zakerinia, M., &Bagheri, Z. (2016). The effects of nutrition, exercise, and a praying program on reducing ıron overload in patientswith beta-thalassemi amajor: A randomized clinical trial. Iranian Journal of Pediatrics, 26(5), 1-9. Mufti, G. E. R.,Towell, T., &Cartwright, T. (2015). Pakistani children’s experiences of growing up with beta-thalassemia major. Qualitative Health Research, 25(3), 386-396.
• Origa R. (2017). β-Thalassemia. Gene Med, 19(6), 609-19.
• Roghani, A.,Khan, N., Shah, I., Khan, S., Taj, A. S., &Yousafzai, Y. M., (2018). Quality of life and its determinants in transfusion dependent thalassemia. Pakistan Journal of Physiology, 14(3), 64-67.
• Shafie, A. A., Chhabra, I. K., Wong, J. H. Y., Mohammed, N. S., Ibrahim, H. M., & Alias, H. (2020). Health-Related quality of life among children with transfusion-dependent thalassemia: a cross-sectional study in Malaysia. Health and quality of life outcomes, 18, 1-11.
• Shahraki-vahed, A.,Firouzkouhi, M., Abdollahimohammad, A., &Ghalgaie, J. (2017). Lived experiences of Iranian parents of beta-thalassemia children. Journal of Multidisciplinary Healthcare, 10, 243-251.
• Shamsi, A., Amiri, F., Ebadi, A., &Ghaderi, M. (2017). The effect of partnership care model on mental health of patients with thalassemia major. Depression Research and Treatment, 1-7.
• Shosha, G. A, & Al Kalaldeh, M. (2018). Challenges of having a child with thalassaemia major: a phenomenological study. Journal of Research in Nursing, 23(1), 9-20.
• Speziale, H., Streubert, H. & Carpenter, D. Qualitative research in nursing: Advancing the humanistic imperative. Lippincott Williams & Wilkins;2011.
• Tarakmeh, T., Alaee Karahroudy, F., & Ghasemi, E. (2018). Evaluation of the Effect of Self-care Education on the Self-efficacy of Adolescents with Thalassemia Major. Scientific Journal of Nursing, Midwifery and Paramedical Faculty, 4(2), 59-70.
• Zakiyah, I., Mediani, H. S., & Mardiah, W. (2018). Literature Review: Stress and Mother Life Quality with Thalassemia Children Major Ages 0–18 Years. Journal of Nursing Care, 1(3), 238-245.