Disease Knowledge and General Self-Efficacy Among Adolescents with Thalassemia Major and Their Parents’ Perspective

Abstract

Thalassemia major can affect physical, psychosocial and economic life of patients and their parents. The aim of the study was to assess the disease knowledge and general self-efficacy among adolescents with Thalassemia major and their parents' perspective with a view to develop an informational booklet on thalassemia. In a cross-sectional study 50 adolescents along with 48 parents were recruited from the hematology day care centre of a tertiary care facility. Ethical clearance from institute ethics committee, written informed consent from parent and assent from the adolescent were taken. Consecutive participants those who consented were enrolled in the study. Adolescents between the age group of 10-18 years, and their parents completed the self-developed subject data sheet, knowledge questionnaire and standardized general self-efficacy tools. The mean knowledge scores of the adolescent and their parents related to thalassemia were 13.9 ± 2.9 and 13.7 ± 3.6 respectively, while the perceived GSE scores of the adolescent along with the parents' perspective were 30.1 ± 6.1 and 29.3 ± 6.5. Positive correlation between the adolescents' knowledge with GSE (r = 0.464, p = 0.007) was observed. The knowledge of the adolescents and their parents showed significant association with the education (p = 0.001, p = 0.002) residence (p = 0.04 and p = 0.01) and parents' employment (p = 0.04). The knowledge of adolescents with thalassemia and their parents is limited. There is need to counsel the adolescents and their parents about the disease and its management in order to improve the GSE of these adolescents.

Nursing Interventions to Improve Quality of Life Among Children and Adolescents with Thalassemia: A Scoping Review

“…Previous studies have shown that adolescents with thalassemia who perform self-care have a higher quality of life compared to adolescents who are unable to perform self-care. 44 , 65 This is supported by other studies which show that adolescents who are able to carry out independent care have a high quality of life. 56 , 76 In addition, other studies also show that there is a relationship between self-care and quality of life in adolescents with thalassemia.…”

“…This is in line with previous studies which show that education about chronic diseases in adolescents can improve the self-care process so that there is an increase in quality of life. 65 , 71 In addition, other studies also show that there is a relationship between knowledge and quality of life for adolescents with thalassemia. 48 , 64 Health Education is provided by nurses regarding various information such as definitions, factors, and independent efforts made in care.…”

“… 62 , 63 This is supported by previous studies which show that parents lack knowledge about thalassemia care, so directions from nurses are needed to increase the role of parents and adolescents themselves in providing care. 60 , 64 , 65 …”

Hubungan Antara Tingkat Kesadaran Orang Tua dengan Perilaku Pencegahan Berulang Thalasemia

“…Data menunjukkan bahwa sebanyak 52,4% ayah dan 78,4% ibu yang memiliki anak dengan thalasemia memiliki pendidikan dasar yang kurang (tidak menempuh pendidikan formal); sebanyak 78,6% dari pasangan tidak menjalani skrining pranikah, dan sebanyak 71,2% pasangan tidak mengetahui tentang thalasemia minor sehingga anak mereka lahir dengan thalasemia mayor (Kalra et al, 2019). Penelitian lain juga mengungkapkan bahwa pengetahuan orang tua tentang thalasemia sangat rendah (Kharyal et al, 2021;Mat et al, 2020). Dengan demikian, maka program pencegahan harus diusulkan selain untuk masyarakat umum dan juga harus diperkuat pada orang tua yang memiliki anak dengan pembawa gen thalassemia dan anak dengan thalassemia.…”

“…Lebih jauh dapat dijelaskan, misalnya orang tua dengan carrier thalassemia lebih memilih untuk diam atau tidak bertindak sama sekali bahkan menentang nasehat petugas kesehatan. Meskipun tidak berhubungan tetapi sebenarnya kesadaran individu sudah ada tetapi belum sampai tindakan, ini dapat terjadi karena sangat bersifat individual, ada faktor intensi dan keyakinan bahwa klien mampu mengontrol kesehatannya sehingga tidak bisa digeneralisir secara umum (Az-zahra et al, 2019;Kharyal et al, 2021;Mardhiyah et al, 2022). Maka untuk itu diperlukan upaya-upaya yang bersifat individual untuk dapat memahami persepsi, nilai, keyakinan dan motivasi klien sehingga mempunyai kesadaran dan dapat berprilaku menunjang pencegahan thalasemia.…”