Understanding Parents\u27 Disease-Managing Strategies for Children With Sickle Cell Disease

Sickle cell disease (SCD) is one of the most difficult and stressful chronic diseases for parents of afflicted children to manage. Managing SCD can be traumatic for parents particularly if they have no specific coping strategies for managing the disease or ensuring the child visits the doctor as scheduled. The use of certain coping strategies may affect the parents\u27 and patients\u27 perceptions of the illness and influence their decisions regarding treatment, which can have a lasting impact on their lives. Effective parental strategies such as positive thinking can aid in disease management, but there is limited research on the coping strategies used by parents of children with SCD specifically. The purpose of this phenomenological study, which was guided by Thompson and Gustafson\u27s transactional stress and coping model, was to describe parents\u27 coping strategies in managing their young child\u27s SCD as it relates to use of health services. Data collection included one-to-one, open-ended interviews with 10 parents of children with SCD. Colaizzi\u27s method of phenomenological data analysis was used to identify themes. Five themes emerged from data analysis and they are: parental methods of coping with SCD, participants\u27 understanding of SCD, SCD family and support, managing SCD with hydration and medication, and experience accessing healthcare. These results indicated the participants\u27 coping strategies varied according to their individual situations. Insight from this study could lead to positive social change by helping to identify specific coping strategies parents can use to better manage their child\u27s disease and effectively access available health services