Elsevier

Journal of Pediatric Health Care

Volume 29, Issue 5, September–October 2015, Pages 424-434
Journal of Pediatric Health Care

Article
The Daily Experiences of Adolescents in Lebanon With Sickle Cell Disease

https://doi.org/10.1016/j.pedhc.2015.01.012Get rights and content

Abstract

Objectives

Despite the psychosocial and physical consequences 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 adolescents 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 transcribed 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. Nevertheless, 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 specifically designed for adolescents with SCD and their families to enable them to better cope with their illness.

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.

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  • 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.

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