Treatment Adherence

Because SCD can lead to varied, and sometimes severe, complications throughout development, both children's and caregivers' knowledge of SCD and adherence to treatment recommendations are important for child health and adjustment. For instance, quick recognition and response to serious illness complications, such as severe headache or spleen enlargement, can significantly improve child outcomes (Day et al. 1992); likewise, drinking adequate fluids and avoiding extreme temperatures can decrease frequency of pain crises. Therefore, to enhance disease-related knowledge and to increase children's practice of positive health behaviors, educational and behavioral interventions have been designed and evaluated.

The most typical educational interventions have involved the development of informational booklets that are distributed to families, although the efficacy of this approach has not been systematically evaluated (Chen et al. 2004). However, in one study, Day et al. (1992) combined informational materials with follow-up phone calls and home visits from nurses and compared preintervention and postintervention data. Results showed increases in parents' knowledge of SCD and lower secondary infection rates than reported in other studies.

Some researchers have examined the use of behavioral strategies for increasing positive health-related behaviors. One study showed that children with SCD demonstrated increased adherence over time in taking antibiotics when given rewards each time they took the medication; however, results did not show any differences between the group that received rewards and the control group (Berkovitch et al. 1998). Burghardt-Fitzgerald (1989) reported that creating a behavioral contract between adolescent patients with SCD and nurses reduced the duration of hospitalizations. Together, these results suggest that behavioral techniques may be effective in increasing health-related behaviors in some youth with SCD. These strictly behavioral approaches, however, may be most effective when used in short-term situations (e.g., hospitalizations) or with children exhibiting particular difficulty with specific important behaviors (e.g., drinking enough water, taking daily medications).

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