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ISSUES AND PURPOSE. To evaluate the characteristics of vaso-occlusive episodes, home management of pain and its impact on the daily activities, and a diary as a method of data collection.
DESIGN AND METHODS. Forty-six adolescents and 75 children were asked to complete daily diaries during the intervention period of a larger study.
RESULTS. Mild pain was recorded 95% of the time; moderate pain, 3%; and severe pain, 1%. The pattern and location of pain varied greatly. Adolescents used more interventions than did children. When pain intensity was mild, 80% of the children/adolescents maintained school, social, and home activities, but decreased play/ sport activities. When pain intensity was high, they decreased their participation in all activities.
PRACTICE IMPLICATIONS. Sickle cell pain episodes are unpredictable and highly variable. Diaries can enhance children's and adolescents' documentation and communication about their pain experiences.
Search terms: Children, diary, pain
Sickle cell disease (SCD) is a complex, chronic illness that may present with vaso-occlusive episodes (VOEs) and accompanying pain as early as 6 months of age, with episodes that can continue through life (Shapiro et al., 1995). These unpredictable episodes have a profound effect on the child and the family (Beyer, Platt, Kinney, & Treadwell, 1999). In the past 10 years, much has been learned about the pathophysiology of the disease (Simon, Lobo, & Jackson, 1999; Steinberg, 1996).
Knowledge about how the children deal with illness is based on studies of their behaviors and interactions when receiving treatment within the healthcare system. Much of the treatment related to pain, however, is provided at home. Shapiro et al. (1995) reported 62% of the children who missed school due to VOEs were managed at home, not in the hospital. Yet little is known about the presence of pain on a daily basis, how the pain is managed, and how it affects the daily lives of these children and adolescents. Through greater understanding of these experiences, healthcare professionals can develop better treatment and educational interventions with the families. This article describes the daily experiences of children and adolescents with sickle cell disease, who were participants in a self-care psychoeducational intervention study. Their experiences were captured via self-report using diaries for seven weeks for children and five weeks for adolescents.
Sickle Cell Disease
Sickle cell disease affects more than 50,000 African Americans. One of every 375 African-American children is affected by SCD, making it the most prevalent of genetic conditions in the United States (Agency for Health Care Policy and Research, 1993). Sickle cell disease is a group of recessively inherited blood disorders characterized by the production of abnormal hemoglobin. The red cell loses its softness, flexibility, and natural biconcave shape. Sickling of these cells leads to microvascular obstruction of blood flow. Individuals may experience several complications, such as chronic anemia, end organ failure, and painful VOEs.
Treatment of the disease can include (a) transfusion, (b) induction of hemoglobin F, (c) transplantation, (d) membrane-active agents, and (e) gene therapy (Bunn, 1999; Reed & Vichinsky, 1998; Steinberg, 1996). Treatment of the acute pain episodes can include (a) hydration; (b) nonopioids, including acetaminophen and NSAIDS; (c) opioids, excluding meperidine; and (d) adjuvant drugs if indicated, such as anxiolytics (Shapiro, 1993; Steinberg, 1999).
Sickle Cell Pain
Vaso-occlusive episodes, also referred to as pain crises, vary in intensity and length of episodes and occur randomly, making VOEs unlike chronic pain of other origins (Beyer, Simmons, Woods, & Woods, 1999; Murray & May, 1988). These unpredictable, acute painful events are characteristic of this disease. Pain from a VOE is the most common cause of acute morbidity in SCD (Platt, Thorington, & Brambilla, 1991; Shapiro, 1993). One third of patients with SCD do not experience VOEs serious enough to warrant medical treatment. These episodes may be frequent, however, resulting in significant absences from school, which places children at academic risk. Absences from classroom routines and peer-group activities can lead to problems with self-esteem and motivation to learn new things, which places patients at psychosocial risk (Walker & Jacobs, 1984).
Two thirds of patients with SCD will experience VOEs multiple …