B-Thalassaemia : parental perception and experience of a chronic illness

Abstract

The aim oft his study was to explore the parents' perception and experiences when they have a child with ,B-thalassaemia in their family. A random sample of sixteen parents (8 families) having a child with ,B-thalassaemia participated in the study. Data was collected through semi structured interviews, which were tape-recorded. These were later transcribed and analyzed using qualitative thematic analysis. The study identified styles of family response to child ,B-thalassaemia through parental subjective account of their perception and experience of the illness. Three themes emerged from the data collected ""coming to terms", "need of information", and "sharing the burden". The findings revealed the stressors encountered on day-to-day basis, and the strategies used to cope with Thalassaemia. The initial " ... coming to terms ... " with the illness in all 8 families was a cause of " ... pressure ... " onto the parents' and their lives. This experience needed to be backed by information, good communication skills and by right supporting strategies. This led to a better understanding and knowledge base of the situation and therefore a better coping and management of the chronic illness itself. Overall, the parents seemed quite satisfied with how they tackled the illness problems and managed the sick child's ,B-thalassaemia. They considered themselves as " ... essential aids ... " in the illness trajectory to normalize their child as much as possible. By doing so they were challenging and overwhelming the chronic illness itself. As a result of this study, limitations and recommendations for research and practice, were noted and suggestions for further research were given (Chapter 5). It is suggested that further larger scale studies will be undertaken before conclusions can be drawn.