ARTICLE The Daily Experiences of Adolescents in Lebanon With Sickle Cell Disease Mia Atoui, MA, Lina Kurdahi Badr, PhD, RN, Tamara Drenttel Brand, MPH, Ruby Khoury, MD, Randa Shahine, RN, & Miguel Abboud, MD ABSTRACT Objectives: Despite the psychosocial and physical conse- quences associated with sickle cell disease (SCD), the daily lived experience of adolescents diagnosed with this disease is a phenomenon rarely described. The objective of this study was to explore the daily lived experience of adoles- cents with SCD living in Lebanon. Method: Twelve adolescents with SCD between the ages of 12 and 17 years were interviewed with use of a semi- structured interview during a routine follow-up visit after they were assessed as being pain free. Interviews were tran- scribed verbatim, and thematic analysis was conducted. Results: Adolescents with SCD experience a layered burden consisting of physical, emotional, and sympathetic pain that affects much of their daily personal and social lives. Never- theless, they seem to claim normalcy and to downplay their pain and suffering in order to limit their caregivers’ distress. Conclusion: These findings can be used to assist health care providers in designing culturally sensitive interventions spe- cifically designed for adolescents with SCD and their families to enable them to better cope with their illness. J Pediatr Health Care. (2015) -, ---. KEY WORDS Sickle cell disease, lived experiences, Lebanon Sickle cell disease (SCD) is the most common single gene disorder worldwide, with different clinical mani- festations in various ethnic groups and populations. The term refers to a collection of autosomal-recessive genetic disorders characterized by the hemoglobin S (HbS) variant of the b-globin gene that is resistant to malaria development and in which more than 50% the hemoglobin-b gene is replaced with HbS (El-Hazmi, Al-Hamzi, & Warsy, 2011; Saraf et al., 2014). SCD affects 1 in 500 African Americans and more than 30 million people worldwide, with predominance in populations of the sub-Sahara, India, and the Middle East (Inati et al., 2007; Khoriaty et al., 2014; McGann, 2014). There are different variants of the b-globin gene in SCD, including but not limited to sickle cell anemia, sickle-hemoglobin C disease, sickle beta-plus thalassemia, and sickle beta-zero thalassemia, with prevalence of certain variants types in particular ethnic groups (El-Hazmi et al., 2011; Saraf et al., 2014). In the Middle East population, different abnormal variants have been identified, with each country having a characteristic distribution and clinical presentation. The tradition of consanguineous marriage in Middle Eastern countries, which varies between 25% in Lebanon to 60% in Saudi Arabia and 90% in some Bedouin communities in Kuwait and Saudi Arabia, is a major contributor to the multiplication of SCD Mia Atoui, Clinical Psychology Intern, Department of Psychiatry, American University of Beirut Medical Center, Beirut, Lebanon. Lina Kurdahi Badr, Professor, Azusa Pacific University, Azusa, CA. Tamara Drenttel Brand, Lactation Educator, American University of Beirut, Beirut, Lebanon. Ruby Khoury, Physician, Rainbow Babies and Children’s Hospital–Case Western Reserve University, Cleveland, OH. Randa Shahine, Registered Nurse, Children’s Cancer Center of Lebanon, American University of Beirut Medical Center, Beirut, Lebanon. Miguel Abboud, Chair and Professor, Department of Pediatrics and Adolescent Medicine, American University of Beirut Medical Center, Beirut, Lebanon. Conflicts of interest: None to report. Correspondence: Lina Kurdahi Badr, PhD, RN, Azusa Pacific University, 701 E Foothill Ave, Azusa, CA 91702; e-mail: lbadr@apu.edu. 0891-5245/$36.00 Copyright Q 2015 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.pedhc.2015.01.012 www.jpedhc.org -/- 2015 1