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:

 

Design and Methods

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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.