Introduction: Sickle Cell Disease (SCD) remains a major health concern in Central India, particularly among tribal and underserved groups. Adolescents with SCD often experience a wide spectrum of physical, emotional, social, and academic challenges. Limited qualitative evidence captures adolescents lived narratives, which are essential for planning holistic interventions.
Aim/Objective: To explore and describe the multifaceted lived experiences of adolescents (10-19 years) with SCD in central India.
Methods: A descriptive phenomenological research design was utilized. Total eleven adolescents aged 10-19 years diagnosed with SCD were selected employing convenience sampling from a tertiary care hospital in Central India. In-depth semi-structured interviews were conducted ensuring privacy and confidentiality. Colaizzi's seven-step method was used for data analysis. Ethical approval and informed consent/assent were obtained prior to data collection.
Results: Six major themes emerged including adolescents reported recurrent and unpredictable pain crisis leading to fatigue, reduced mobility, and frequent school absenteeism. These physical limitations disrupted daily functioning and restricted social participation. Emotionally, they experienced fear, frustration, and sadness, particularly during hospitalizations and academic loss, though many also expressed determination and hope for a better future. Social stigma, peer rejection, and concerns about future opportunities emerged as common struggles. However, strong familial support provided comfort. Health care experiences were mixed while participants valued compassionate care, they noted long waiting hours and limited adolescents-focused services. Medication routines and hospital visits were perceived as burdensome but necessary. Participants coped through rest, hydration, distraction, positive self-talk, and reliance on family and spiritual beliefs. Overall, adolescents demonstrated resilience despite interconnected physical, psychosocial, and healthcare challenges, emphasizing the need for age-appropriate psychosocial and educational support.
Discussion/Conclusion: Adolescents with SCD endure substantial multidimensional burden that negatively affects their overall well-being and social identity. Findings highlight the need for adolescent-friendly pain management, mental health support, school-based awareness programs, and culturally tailored counseling interventions. Strengthening family support and community inclusiveness can improve resilience and quality of life in this underserved group.
Keywords: Sickle Cell Disease, Adolescents, Lived experiences, Phenomenology, Resilience
How to cite this article: Ahlawat V, Joseph J, Maheshwari S, Living with pain and hope: A Phenomenological exploration of Adolescents experiences of with Sickle Cell Disease in Central India. Int J Drug Deliv Technol. 2026;16(2s): 877-889; DOI: 10.25258/ijddt.16.877-889