Challenges of having a child with thalassaemia major: a phenomenological study

Thalassaemia major is a chronic inherited illness that requires everlasting treatment with blood transfusions and chelating drug therapies. Primary caregivers, especially mothers, encounter many challenges when dealing with their affected child. This study aimed to explore challenges facing Jordanian mothers when having a child with thalassaemia major. A descriptive phenomenological approach was used. Mothers were selected purposefully from two major thalassaemia treatment clinics in Jordan. Semi-structured, face-to-face interviews were conducted and supported by a pre-prepared interview agenda. Colaizzi's process of descriptive phenomenology was used for analysing interviewees' transcripts. A total of 23 Jordanian mothers joined the study. A number of formulated meanings, categories and clusters of themes were instrumental in the emergence of three main themes: 'unprecedented psychosocial distress', 'additional financial burden' and 'deficiency of knowledge and its sources'. The study revealed that rearing a child with thalassaemia entails suffering from different forms of challenges. Psychological distress, social isolation, worries, and fear of the disease and its future consequences were reported. Mothers showed that the added financial burden resulting from frequent hospitalisation and unpaid leave was a challenge. Deficiency in knowledge, including lack of knowledge about the disease and lack of sources of knowledge, was another challenge. Health education is a highly acknowledged and valued approach to lowering distress and challenges associated with rearing a thalassaemic child.