Hope and Quality of Life among Adolescent with Thalassemia: A Cross-sectional Study in Indonesia

Ai Mardhiyah; Henny Suzana Mediani; Santhna Letcmi Panduragan; Iyus Yosep; Linlin Lindayani

doi:10.3889/oamjms.2022.9597

Authors

Ai Mardhiyah Faculty of Nursing, Lincoln University College, Kota Bharu, Malaysia; Department of Pediatric Nursing, Faculty of Nursing, Universitas Padjadjaran, Bandung, Indonesia
Henny Suzana Mediani Department of Pediatric Nursing, Faculty of Nursing, Universitas Padjadjaran, Bandung, Indonesia
Santhna Letcmi Panduragan Faculty of Nursing, Lincoln University College, Kota Bharu, Malaysia
Iyus Yosep Department of Psychiatric Nursing, Faculty of Nursing, Universitas Padjadjaran, Bandung, Indonesia
Linlin Lindayani Sekolah Tinggi Ilmu Keperawatan PPNI Jawa Barat, Bandung, Indonesia

DOI:

https://doi.org/10.3889/oamjms.2022.9597

Keywords:

Adolescents, Empowerment, Family, Hope, Quality of life, Thalassemia

Abstract

Background: Adolescents with thalassemia major had a worse quality of life (QOL) than healthy adolescents. Hope is considered as a protective factor to enhance QOL. The relationship between hope and quality of life in adolescents has been evaluated in various chronic diseases, across multiple countries, cultures, and settings. However studies on exploring the relationship between hope and QOL among adolescents with thalassemia are limited, especially in Indonesia.

Objectives: This study aimed to determine the relationship between hope and QOL among adolescents with thalassemia in Indonesia.

Methods: A cross-sectional study was carried out from April to Juni 2021. The respondents in this study were 120 adolescents who met the criteria (1) they were teenagers (10-19 years old) who received regular blood transfusions, (2) they could write and read, (3) adolescents who are not mentally retarded. Instruments include demographic data sheets, Child Hope Scale (CHS), and TranQOL. Data were analysis using the Pearson correlational test and multiple regression hierarchical analysis.

Results: This study found that 65 (54.17%) were boys, and 55 (45.83%) were girls. About 64.17% had transfusion period for once in 2 - 4 weeks, and 4.17% with comorbidity, and 77.5% having hemoglobin 7 mg/dl. The mean QOL score among adolescents with thalassemia was 47.82 (SD=15.38). Hope and TranQOL scores were positively and strongly associated (r = 0.463, p<0.01). After adjusting for demographic and clinical factors, this finding revealed that hope was significantly and positively associated with QOL in step two. Hope had a significant impact on thalassemic adolescents' QOL (R2 = 0.371, R2 change = 0.239)

Conclusion: Hope is a factor that is related and greatly influences the quality of life of thalassemia survivors so that the development of programs and policies that design the expectations of thalassemia survivors and their families will improve the quality of life of patients with thalassemia.

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