ArticleThe Daily Experiences of Adolescents in Lebanon With Sickle Cell Disease
Section snippets
Symptoms of SCD
The symptoms of SCD may occur during the first few months of age or appear later during childhood or adolescence; however, once they appear, the symptoms persist throughout life, and there is no cure. The clinical features of SCD are defined by chronic anemia, sepsis, hemolysis, and recurrent acute vaso-occlusive crises. The latter are characterized by pain and a systemic inflammatory response that may be severe, episodic, and unpredictable. Pain is the most common symptom in SCD that limits
Quality of Life in Children With SCD
A large body of literature has investigated the quality of life of this population (Barakat et al., 2008, Jackson et al., 2014, Menezes et al., 2013). An earlier study observed that children and adolescents with SCD spend most of their time enduring the chronic and acute pain events at home, tend to underreport their pain levels, and tend to dismiss the negative effects of SCD on their daily lives (Fuggle, Shand, Gill, & Davies et al., 1996). Family characteristics and dynamics can positively
Design
A qualitative phenomenological methodology using a semi-structured interview was adopted to acquire deep and rich information to allow contextualized understanding of the unique experience lived by adolescents with SCD. A central feature of phenomenology is a reliance on qualitative empirical methods to gather lived experience descriptions, from which underlying patterns and structures of meaning may be drawn (van Manen, 1998).
Participants
A purposive sample of 12 adolescents (ages 12 to 17 years) with SCD
Results
Five main themes emerged: (a) pain, (b) school issues, (c) psychosocial and physical limitations, (d) family as a source of support and a source of guilt, and (e) divine intervention.
Discussion
This exploratory study investigated the daily lived experience of adolescents with SCD in Lebanon. In contrast to much of the research conducted on SCD, which has focused exclusively on physical complications of the disease and the quality of life of adolescents and coping mechanisms as reported by parents, our study sought to examine the daily reality of adolescents living with SCD from their own perspective. It attempted to look more deeply at how they live their lives, the challenges they
Conclusion
Our study delineates a number of issues for further examination, including a deeper exploration of the psychosocial burden carried by adolescents with SCD. In particular, an understanding of the sense of guilt that the sick adolescents feel about the burden they place on others can inform caregivers about how to confront and allay these feelings. Because SCD is a chronic disease, longitudinal studies could be conducted to measure the psychological impact of the disease and its burdens in the
Mia Atoui, Clinical Psychology Intern, Department of Psychiatry, American University of Beirut Medical Center, Beirut, Lebanon.
References (50)
- et al.
Predictors of coping in parents of children with an intellectual disability: Comparison between Lebanese mothers and fathers
Journal of Pediatric Nursing
(2010) - et al.
Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness
Nurse Education Today
(2004) Sickle cell anemia: An underappreciated and unaddressed contributor to global childhood mortality
Journal of Pediatrics
(2014)- et al.
Differences in the clinical and genotypic presentation of sickle cell disease around the world
Paediatric Respiratory Reviews
(2014) - et al.
Educational intervention to improve the health outcomes of children with sickle cell disease
Journal of Pediatric Health Care
(2015) Islamic fatalism and the clash of civilizations: An appraisal of a contentious and dubious Theory
Social Forces
(2008)- et al.
Treatment adherence and quality of life outcomes in patients with sickle cell disease
Saudi Medical Journal
(2013) - et al.
The psychosocial experience of adolescents with haematological malignancies in Jordan: An interpretive phenomenological analysis study
The Scientific World Journal
(2014) - et al.
Fatigue in adolescents and young adults with sickle cell disease: Biological and behavioral correlates and health-related quality of life
Pediatric Oncology Nursing
(2014) - et al.
Quality of life among adolescents with sickle cell disease: Mediation of pain by internalizing symptoms and parenting stress
Health and Quality of Life Outcomes
(2008)
The social and cultural context of coping with sickle cell disease: I. A review of biomedical and psychosocial issues
Journal of Black Psychology
Mothers raising children with sickle cell disease at the intersection of race, gender, and illness stigma
Health and Social Work
Sickle cell disease: A neglected chronic disease of increasing global health importance
Archives of Disease in Childhood
Assessing the quality of life of children with sickle cell anaemia using self-, parent-proxy, and health care professional-proxy reports
British Journal of Health Psychology
Religious coping and the use of prayer in children with sickle cell disease
Pediatric Blood Cancer
Religious/spiritual coping in adolescents with sickle cell disease: A pilot study
Journal of Pediatric Hematology Oncology
The cognitive and academic impact of sickle cell disease
Journal of School Nursing
Sickle cell disease in Middle East Arab countries
Indian Journal of Medical Research
Adolescent boys with sickle cell disease
Clinics in Child Psychology and Psychiatry
Determinants of academic performance in children with sickle cell anaemia
BMC Pediatrics
Perception of pain among pediatric patients with sickle cell pain crisis
Journal of Pediatric Oncology Nursing
Pain, quality of life, and coping in sickle cell disease
Archives of Disease in Childhood
Y-chromosome R-M343 African lineages and sickle cell disease reveal structured assimilation in Lebanon
Journal of Human Genetics
Psychosocial and pharmacological management of pain in pediatric sickle cell disease
Postgraduate Medicine
Sickle cell disease: The Lebanese experience
International Journal of Laboratory Hematology
Cited by (0)
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.