Dynamics of Mother’s Psychological Condition As a Caregiver For Thalassemia Children

Abstract

Caring for a child with thalassemia major requires continuous treatment and may impose substantial psychological, physical, social, and financial burdens on mothers as primary caregivers. This study aimed to explore the psychological dynamics and lived experiences of mothers caring for children with thalassemia. A qualitative study with a hermeneutic phenomenological approach was conducted among nine mothers of children with thalassemia major receiving treatment at a hospital in Palembang, Indonesia. Participants were selected using purposive sampling. Data were collected through face-to-face, in-depth, semi-structured interviews lasting approximately 40-60 minutes. The interviews were audio-recorded, transcribed verbatim, and analyzed using van Manen’s phenomenological method. The findings revealed interconnected experiences of psychological distress, psychosomatic consequences, and unmet support needs. Mothers experienced shock following the diagnosis, profound sadness, guilt, fear, uncertainty regarding their children’s future, and social withdrawal related to stigma. Prolonged caregiving responsibilities also contributed to fatigue, sleep disturbances, headaches, physical pain, and the worsening of chronic health problems. Furthermore, mothers expressed a strong need for emotional, practical, informational, spiritual, social, and financial support from spouses, family members, healthcare professionals, community organizations, and relevant institutions. Caring for a child with thalassemia has multidimensional and long-term consequences for mothers’ psychological and physical well-being. Comprehensive family-centered interventions, including psychological counseling, caregiver education, self-care support, social assistance, and financial support, are therefore required to strengthen mothers’ well-being and sustain long-term care for children with thalassemia.