Between crises and care: Childhood realities with sickle cell Anemia: A qualitative study

Sickle cell anemia (SCA) affects all aspects of a child's life. This study was aimed to examine the life experiences of children with SCA using qualitative analysis methods.

The study sample included 17 children who met the inclusion criteria. After transcription, the data were analyzed using the MAXQDA. Individual interviews, an introductory information form, and a semi-structured interview form were used for data collection. The data were analyzed with Colaizzi's seven-step method.

The average age of the children interviewed was 12.65 ± 3.29 years. Seven themes and 57 codes were identified: feelings and thoughts about SCA, painful crises, treatment/care process, family relationships, social life, and school life. Children frequently reported emotional burdens like "helplessness, pain, sadness, and fear," describing themselves as "punished and restricted". They emphasized struggles managing painful crises, negatively affected family relationships, and restricted social lives. The disease further resulted in declined academic performance and exposure to peer bullying.

Children with SCA experience significant emotional distress and social problems that often outweigh the physical difficulties of painful crises. The findings reveal that protective parental attitudes and a sense of being "different" profoundly shape their "life world".

Pediatric nurses should provide ongoing education to children, parents, and teachers regarding the disease and its emotional impacts. Individualized emergency action plans should be developed for both school and home environments. Public awareness initiatives are necessary to prevent peer bullying and social withdrawal, ensuring a supportive environment for these children.