Sickle cell disease (SCD) is a chronic hematological disorder that affects nearly 1 out of every 500 African-Americans. Characterized by sickling of red blood cells, SCD can cause infections, anemia, organ failure, stroke, chronic lung disease, and thrombosis [1
]. As a result, individuals with SCD experience unpredictable and recurrent episodes of pain [1
]. Some children and adolescents with SCD have psychosocial difficulties, including lower self-esteem; higher levels of depression, anxiety, and behavior problems; impaired peer relationships; and repeated absences from school [2
]. Thus, research that investigates potential ways to improve psychosocial adjustment to and coping with SCD is sorely needed.
Children and adolescents with chronic conditions, including those with SCD, face numerous medical and psychosocial challenges - all of which can have a significant impact on their health-related quality of life (HRQOL). A dynamic construct, HRQOL is used to describe functioning across multiple domains, including physical, psychological, and social functioning. Certain characteristics have been identified that promote adolescents’ ability to successfully cope with or adapt to having a chronic illness [5
]. These include: disease-related characteristics (e.g., severity, symptoms), personal characteristics (e.g., temperament, coping styles), and/or social-ecological characteristics (e.g., family functioning, social support).
Although patients’ religion/spirituality (R/S) may play an important part in many dimensions of their lives, very little is known about how children may rely on R/S to cope with chronic illness [6
]. Religiosity has been described as the formal, institutional, and outward expression of the sacred, such as church or temple attendance or frequency of prayer, whereas spirituality describes the internal and personal connections to the sacred (e.g., sense of meaning as it relates to the divine or the truth or the use of R/S to cope with personal adversity) [5
]. Religious/spiritual coping focuses on how individuals may use R/S specifically to deal with a stressor such as a chronic illness. Like other coping mechanisms, R/S coping may represent both negative aspects (e.g., the extent to which someone feels that God is punishing them by giving them an illness) and positive aspects (e.g., the extent to which one derives spiritual support from a relationship with God or from a religious congregation).
A growing body of empirical evidence shows that R/S may have salutary effects on health outcomes, including adjusting to chronic illness [5
]. Evidence suggests that adults who have higher levels of R/S recover from illness more quickly, are less depressed, and have better HRQOL than their counterparts with lower levels of R/S [5
]. Similarly, adolescents who believe in God, rate religion as important in their lives, and attend religious services are less likely to engage in risky health behaviors and tend to have better mental health outcomes (i.e., less depression and anxiety) than their less religious peers [10
]. The use of positive R/S coping strategies has been associated with improved physical and psychological health cross-sectionally in adult samples - whereas the use of negative R/S coping strategies correlated with poorer psychological and physical outcomes [9
]. Because R/S has been shown to be an important part of adolescents’ lives, it is surprising that such little attention has been paid to the role R/S may play in the adjustment and management of chronic illnesses [6
]. Two preliminary studies of religious coping in pediatric samples, one in adolescents with asthma, and the other in children with cystic fibrosis, suggest that religious coping is prevalent in these populations and may be associated with adjustment to the illness [6
]. Of note, given that SCD disproportionately affects African-American adolescents, and given the particular importance of faith and R/S coping in the African-American community [5
], it is especially important to examine the role of R/S in adolescents coping with an illness such as SCD.
Therefore, using a mixed method and multiple-informant approach, we sought to examine R/S in adolescents living with SCD and how they use R/S to cope with their illness. Given the critical role of parental coping in an adolescent’s adjustment to living with a chronic illness, we also assessed the role of R/S coping in parents of adolescents with SCD. Finally, we examined the relationships between R/S coping and HRQOL outcomes in adolescents and their parents.