Self-management experiences of school-aged children with thalassemia and the roles of caregivers and nurses in supporting treatment adherence at a Secondary Hospital in Thailand

Abstract

This qualitative descriptive study aimed to explore the self-management experiences of school-aged children with thalassemia and the roles of caregivers and nurses in supporting adherence to treatment plans. Thirty key informants, comprising 12 school-aged children with thalassemia, 10 primary caregivers, and eight nurses, were purposively selected from a secondary-level hospital in Thailand. Research instruments included a demographic data form and a semi-structured in-depth interview guide. Content validity was assessed by three experts, with content validity index values ranging from .67 to 1.00. Data were collected through in-depth interviews. Demographic data were analyzed using descriptive statistics, while qualitative data were analyzed using thematic analysis.

            The findings revealed four main themes concerning the children’s self-management experiences: 1) disease awareness and understanding, which varied across three levels according to age and developmental stage; 2) self-care behaviors related to medication taking, dietary control, and symptom management; 3) barriers and challenges, including fear of blood draws, cravings for restricted foods, and feelings of being different from peers; and 4) motivation and supportive factors, including family support and intrinsic motivation. Caregiver roles encompassed five dimensions: nutritional management, medication management, emotional support, care coordination, and coping with caregiving burdens. Nursing roles encompassed four areas: clinical assessment and monitoring, education, psychosocial support, and care coordination.