Document Type : Original Article
Authors
1 Kasturba Medical college, Mangalore, Manipal Academy of Higher Education, Manipal, Karnataka, India
2 KMC hospitals, Mangalore, Karnataka, India
3 Kasturba Medical College, Mangalore Manipal Academy of Higher Education, Manipal, Karnataka, India
4 Department of Pediatrics, KS Hegde Medical Academy, NITTE University (Deemed to be), Mangalore, Karnataka, India.
Abstract
Background: Thalassemia, an autosomal recessive disorder characterized by decreased hemoglobin chain production manifests as anemia and is typically identified early in life. This study aimed to explore the challenges experienced by adolescents (10-19 years) and young adults (19–25 years) with thalassemia in their daily lives, as well as their attitudes toward their condition. The findings are intended to provide insights that may guide caregivers and healthcare providers in improving holistic care and patient well-being.
Methods: The study was conducted among adolescent and young adult patients with thalassemia major attending the pediatric thalassemia units of two tertiary hospitals. In-depth interviews were conducted, transcribed word by word, and analyzed using content analysis with sequential coding and thematic categorization. Data saturation was achieved after interviews with 21 participants, followed by reflexive analysis.
Results: A total of 21 participants were interviewed, including 12 males. The mean age was 15.61 ± 3.37 years (range: 10-23 years), and the mean body mass index (BMI) was 17.62 ± 2.36 kg/m². Most participants had attained secondary-level education. Four major themes emerged: (1) challenges in daily life, (2) relationships and home environment,(3) treatment and associated difficulties, and(4) attitude towards life and the future.
Conclusion: The participants reported numerous physical and psychological difficulties related to both the disease and its treatment. The predominant challenges included feelings of discrimination due to their condition, frustration at being unable to engage in activities similar to their peers, and the necessity of adjusting their ambitions and lifestyle. Despite these difficulties, many expressed a strong desire to be treated like others and to live a “normal” life.
Keywords
)