Primary Healthcare

Biography

Biography: Ghada Mohammad Abu Shosha

Abstract

Thalassemia is a genetic blood disorder that requires a life-long treatment of blood transfusion and chelating drugs. It poses a range of stressors and challenges for patients, their families, and health care team. Mothers are the primary caregivers and therefore, understanding their perceptions of having a child with thalassemia is very important. This study aimed to explore challenges of having a child with thalassemia major as perceived by Jordanian mothers. A descriptive phenomenological approach was used. Twenty three Jordanian mothers were selected purposefully from two major thalassemia treatment clinics in Jordan to participate in this study. Semi-structured, face-to-face interviews were used to obtain the participants' perspectives. Interview sessions were transcribed verbatim, and translated from Arabic to English. Data were analyzed using Colaizzi’s process of descriptive phenomenology. The study revealed that thalassemia has a significant impact on mothers' lives. Many forms of challenges associated with rearing children with thalassemia were illustrated using four major themes: “Psychosocial problems"," Financial problems", "Inadequate information", and “Disease consequences". Participants expressed their worries and fear resulting from the complications of the disease and its treatment. They voiced their needs for more information about the disease and managing the side effects of treatment. Therefore, nurses are advised to address the needs of mothers caring for children with thalassemia and to provide psychosocial support and sufficient information about the child's disease and its treatment.