A study on the family environment of persons with thalassemia major

A study on the family environment of persons with thalassemia major

The objective of the study was to assess the family environment of persons with thalassemia major disorder. The clinical profile of the persons with thalassemia, the family awareness about the disorder and the social, financial, emotional and the couple relationship aspects due to thalassemia were also studied. The parents of the persons with thalassemia major were included in the study. Interviews were carried out with each of the subjects using a standard questionnaire to assess the family environment. The other aspects were studied using a semi structured questionnaire. The results show that 42 percent has a family income of less than 5000 Rupees per month. There is no mutual emotional support among 54 percent of the couples. 66 percent of the parents are not involved in any social activities. 14 percent of the parents feel burden and another 14 percent feel burnout and 38 percent are anxious about the sick child. The relationship with the non thalassemic child in the family is affected among 55 percent of the parents. 86 percent of the parents are aware about the need of iron chelation and the genetic nature of thalassemia. Family environment is significantly affected by the duration of the illness, treatment cost, number of thalassemia persons in the family, lack of awareness on the genetic nature on thalassemia. Hospital admissions restrict the recreational activities and also lead to lose of control in the family. Organization in the family is significantly affected where there is more number of persons with thalassemia. The subjects assessed expressed varying concerns about the family relationships, life long illness of the child and other psycho social issues. They feel that their competitiveness, career development, financial needs and relationships with their spouse and with their normal child are hampered by the illness of the child. It establishes that various psycho social interventions are imperative for such families.

Kurian Robins

Centre of Research