Chronic sorrow in caregivers of school age children with sickle cell disease: a grounded theory approach.

Chronic illness affects over 1 million children in the United States annually. One such illness prominent in the African-American population is sickle cell disease (SCD), which affects approximately 1 in 375 African Americans in the United States. This potentially life-threatening disease requires caregivers to carefully monitor and supervise children with SCD. Monitoring and caring for children with SCD places heavy burdens, demands, and responsibilities on these caregivers. The psychological stressors and unpredictable nature of the disease could cause caregivers to experience a variety of emotions, with one being chronic sorrow. The purposes of this study were to examine the process of chronic sorrow in caregivers of school age children with SCD, identify the characteristics of chronic sorrow, and generate a substantive theory of chronic sorrow. The methodology used was grounded theory, and data were generated through two interview sessions, a demographic questionnaire, field notes, and memos. Data analyses were performed following the principles of grounded theory. Data suggested these caregivers move through three overlapping stages: learning about and incorporating SCD into their daily lives; experiencing the sorrow; and doing what one has to do and moving on. The diagnosis was the initial trigger to evoke feelings, including sorrow. As time progressed, other internal and external triggers began to evoke feelings of sorrow that eventually became chronic. A process of repatterning began as caregivers learned to live with the unpredictable consequences of SCD, which produced the feelings of chronic sorrow. Repatterning behaviors enabled caregivers to "do what you have to do and move on."