SOCIO ECONOMIC AND PSYCHOLOGICAL PROBLEMS FACED BY THE FAMILIES OF THALASSEMIA PATIENTS

Abstract

The main objective of this research was to explore the socio economic and psychological problems confronted by the parents of thalassemia major children. This research is mainly focused on the lives of thalassemia patients and their families in which they faced many difficulties to receive blood donors and blood transfusion every month. They faced financial issues as well due to the treatment of thalassemia disease. Due to high expenditure involved in the treatment of thalassemia major children. Many families found it difficult to gather money, and they were forced to take out loans and sacrifice other household requirements. Qualitative research approach is used to carry out the research. In accordance with the criteria of anthropological research, the qualitative research methodology was used for the purpose of data collection it includes rapport building, Participant observation, key informants, sampling, interviews, focus group discussion, and daily diary etc. the data was collected from the patients and parents from the research locale Lahori Mohalla Larkana city. Regarding the perspective of thalassemia disease, Researcher took sample size of 37 respondents in which 21 were female and 16 were male respondents, who were selected through purposive sampling. Major findings show that families of thalassemia children with major and minor thalassemia had very little knowledge of the disease and only knew about it when their children were diagnosed with major thalassemia. They had to deal with several childcare issues of thalassemia, including the lack of available early diagnosis and treatment services, and their struggle in arranging regular donors to receive blood transfusions. Since childbirth parents taking care of thalassemia children when they involved in many economic and time resources, the disease had a devastating effect on her socio-economic and psychological problems of the families. Furthermore, the negative social attitudes associated with the disease, the families are always worried about the future of their children. Due to the disease some families were avoid getting marriage of their children in family because the cousin marriage is one of the main reasons behind thalassemia disease. According to the research the findings of the study, some suggestions are provided requiring the government to develop a comprehensive strategy involving all stakeholders to address the problems of thalassemia patients and their families.