Learning Objective #1: Describe the phenomenon of chronic sorrow

Learning Objective #2: Discuss the chronic sorrow in African American caregivers of school-age children with sickle cell disease

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Sickle Cell Disease (SCD) is a potentially life threatening disease prominent in the African American population which places heavy demands on caregivers. The psychological stressors and unpredictable nature of SCD gives rise to a variety of emotions. One such emotion is that of chronic sorrow. Studies addressing the phenomenon in the African American population is non existent.

Therefore, the purposes of this study were to examine the process of chronic sorrow in caregivers of children with SCD, identify the characteristics of chronic sorrow and generate a substantive theory of chronic sorrow.

Data suggested these caregivers moved through three overlapping stages: 1) learning about and incorporating the disease into their daily lives, 2) experiencing the sorrow and 3) “doing what you have to do and moving on”. A process of re-patterning began as caregivers learned to live with the unpredictable consequences of SCD. As a result of the process of re-patterning, caregivers learned that although they had no control over the disease and its outcomes, they did have control over their reactions and responses. The re-patterning behaviors enabled caregivers to “do what you have to do and move on.”

Nurses can utilize the findings of this study to prepare caregivers of children with chronic illness about the phenomenon of chronic sorrow and assist families with adjustment. Education and research can benefit from the findings of this study by include expanding the research to other disease processes, settings and populations.