Student Research Brief: Pain in Pediatric Sickle Cell Disease: Daily Behavioral Prevention Strategies

Cynthia Karlson, the 2012 SPP Diversity Research Award winner, describes her investigation with African American children with sickle cell disease.
By Cynthia Karlson
This research, funded by the 2012 SPP Diversity Research Award, examines the use, perceived helpfulness, and cultural acceptability of home-based behavioral pain prevention strategies in African American children with sickle cell disease.
Sickle cell disease (SCD) is a chronic and hereditary disorder that occurs in approximately one out of every 500 African Americans in the United States (Brawley et al., 2008). Pain is a hallmark symptom that occurs frequently in children with SCD and often leads to hospitalization and psychosocial disruption (Barakat et al., 2008; Palermo et al., 2002).
Despite the frequent occurrence of pain episodes in children with SCD, most pain is managed at home with the use of oral analgesics and complementary modalities such as heat, relaxation, prayer and massage (Beyer & Simmons, 2004; Dampier et al., 2004). Little is known about what daily behaviors children engage in related to pain prevention or their effectiveness.
The purpose of this study is three fold:
  1. To characterize the clinically recommended prevention behaviors of limiting physical activity and rehydration (Meremikwu & Okomo, 2011) as well as families’ perception of their helpfulness and cultural acceptability.
  2. To identify temporal relationships between preventive behaviors and daily pain reports.
  3. To explore socio-demographic and psychosocial characteristics associated with children’s use of preventive behaviors and their perceived helpfulness and cultural acceptability.
Design and Methods

Participants will include 45 children with SCD and their primary caregiver. Families are currently being recruited from the University of Mississippi Medical Center. Upon enrollment, children and caregivers complete questionnaires on usual pain, anxiety and depression, and quality of life.

Children then complete 14 consecutive days of daily pain diary and physical activity monitoring (Burkhart et al., 2001). A monitoring device called the Actiwatch 64® (Philips Respironics, Inc.) provides objective and continuous monitoring of physical activity levels. Children also record daily fluid intake in their daily pain diary.
At the end of the 14-day study period, children and their caregiver report how often limiting physical activity and rehydration was used as a prevention strategy during the study period, along with perceived helpfulness and acceptability of each behavior.
Potential Clinical/Research Implications

There is currently limited research investigating home-based prevention behaviors for pediatric SCD pain. This research is important because it may identify modifiable target behaviors for future behavioral pain interventions that are acceptable to children with SCD and their families and that could prevent pain escalation and subsequent hospitalization.


Barakat, L. P., Simon, K., Schwartz, L. A., & Radcliffe, J. (2008). Correlates of pain-rating concordance for adolescents with sickle cell disease and their caregivers. Clinical Journal of Pain, 24(5) , 438-446.

Beyer, J. E., & Simmons, L. E. (2004). Home treatment of pain for children and adolescents with sickle cell disease. Pain Management Nursing, 5(3), 126-135.
Brawley, O. W., Cornelius, L. J., Edwards, L. R., Gamble, V. N., Green, B. L., Inturrisi C, Schori, M. (2008). National Institutes of Health consensus development conference statement: Hydroxyurea treatment for sickle cell disease. Annuals of Internal Medicine, 148, 932-938. 
Burkhart, P. V., Dunbar-Jacob, J. M., & Rohay, J. M. (2001). Accuracy of children’s self-reported adherence to treatment. Journal of Nursing Scholarship, 33(1), 27-32. 
Dampier, C., Setty, B. N., Eggleston, B., Brodecki, D., O’Neal, P., & Stuart, M. (2004). Vaso-occlusion in children with sickle cell disease: Clinical characteristics and biologic correlates. Journal of Pediatric Hematology/Oncology, 26(12), 785-790. 
Meremikwu, M. M., & Okomo, U. Sickle cell disease. (2011). Clinical Evidence (Online), pii: 2402. 
Palermo, T. M., Schwartz, L., Drotar, D., & McGowan, K. (2002). Parental report of health-related quality of life in children with sickle cell disease. Journal of Behavioral Medicine, 25(3), 269-283.