How Adolescents with Sickle Cell Disease Describe and Experience Spirituality and Religiosity

Purpose: The purpose of this study was to examine spirituality and religiosity (S/R) in adolescents with sickle cell disease (SCD). SCD is a serious chronic illness and global problem. Adolescents living with SCD face several health and psychosocial challenges. Spirituality has been shown to improve coping and positively correlates with health outcomes.²Research addressing the spiritual and religious needs of adolescents living with SCD is limited. Reviewed literature examines spirituality and religiosity as mechanisms for coping rather than exploring these elements of the human person as antecedents for coping. Identifying best practices to evaluate S/R needs of adolescents and provide holistic care that is developmentally appropriate is essential to their quality of life. Spiritual development may be more significant for more vulnerable adolescents in comparison to those who are less vulnerable. For adolescents experiencing physical and psychosocial challenges, spiritual development can foster resilience in complex situations. Understanding how S/R impacts illness and health outcomes, will assist nurses in identifying spiritual strengths and appropriate resources adolescents can use to cope with SCD.

Methods: A descriptive qualitative design was used for this study. Parental consent and participant assent were obtained. Sickle Cell Disease Interview Guides were developed using the Spiritual Development Framework (SDF) as a guide.¹ The SDF provided a foundation for conceptualizing the spiritual element of human development. Interviews were audiotaped and transcribed verbatim. Nine adolescents completed two semi-structured interviews (Mage =16.2 years). Participants were recruited from a pediatric SCD clinic and one support organization. Participant and Parent Demographic Forms were used to collect demographic information. SCD Interview Guides elicited information on beliefs. NVivo 10 was used for analysis. Qualitative data from interview transcripts were categorized and coded. Data were analyzed using a template analysis style and a concurrent process of content analysis. The template was developed using fundamental concepts of the SDF.

Results: Four major themes emerged to include spirituality as coping mechanisms, shaping of identity, influence of beliefs on health and illness, and expectations of health care providers. The theme spirituality and religiosity as coping mechanisms included six threads to include: interconnecting with God, interconnecting with others, interconnecting with creative arts, scriptural metanarratives, transcendent experiences, and acceptance and finding meaning. The theme expectations for health providers included two threads to include: religiosity is private/personal and sharing spiritual and religious beliefs can be risky.                                                                                                                                   

Conclusion:  Spirituality and religiosity are salient among adolescents with SCD. Findings from this study identified ways adolescents relied on their S/R to cope with life and specifically their SCD. Further inquiry may provide a foundation for conducting more robust studies with vulnerable populations in the context of health and illness.

References:

1. Benson, P. L., and Roehlkepartain, E. C. (2008). Spiritual development: A missing priority in youth development. New Directions for Youth Development, 118, 13-28. doi: http://dx.doi.org/10.1002/yd.253

2. Cotton, S., Grossoehme, D., & McGrady, M. E. (2012). Religious coping and the use of prayer in children with sickle cell disease. Pediatric Blood & Cancer, 58(2), 244-249.

3. Cotton, S., Grossoehme, D., Rosenthal, S. L., McGrady, M. E., Roberts, Y. H., Hines, J., Yi, M.S., & Tsevat, J. (2009). Religious/spiritual coping in adolescents with sickle cell disease: A pilot study. Journal of Pediatric  Hematology/Oncology, 31(5), 313.

4. Cotton, S., Zebracki, K., Rosenthal, S.L., Tsevat, J. & Drotar, D. (2006). Religion/spirituality and adolescent health outcomes: A review. Journal of Adolescent Health, 38, 472-480.

5. Smith, G. M., Lewis, V. R., Whitworth, E., Gold, D. T., & Thornburg, C. D. (2011). Growing up with sickle cell disease: A pilot study of a transition program for adolescents with sickle cell disease. Journal of Pediatric Hematology/Oncology, 33(5), 379-382.