The Experiences of Children with Primary Immunodeficiency Who Receive Immunoglobulin Subcutaneously Instead of Intravenously.

BACKGROUND: Children with primary immunodeficiency disorder have begun receiving subcutaneous immunoglobulin (SCIg) instead of intravenous immunoglobulin (IVIg). So, we aim to explore the experiences of primary immunodeficiency children with regard to receiving SCIg instead of IVIg.

METHOD: We adopted a phenomenological approach in 2022 in Turkey using semi-structured interviews. We recruited 15 participants using the purposive sampling method.

RESULTS: The main theme was the sweetness and bitterness of living with SCIg. The first subtheme was sweetness (sense of freedom, having a normal life, saving time, ease of use, and feeling better). The second subtheme was bitterness (worries about taking responsibility for injection, impaired body image due to abdominal edema, and minimal tolerable complications).

DISCUSSION: The results show these children had more sweet experiences than bitter ones. Being flexible in choosing a method, teaching patients to apply it correctly, and providing enough time to cope are as reasons for this.