Socio-religious Prognosticators of Psychosocial Burden of Beta Thalassemia Major

Abstract

The study investigates the socio-religious factors in the propagation of genetically inherited disease of Beta thalassemia. The disorder which reportedly has a significant protraction through repeated cousin marriages results in the social maladjustment of the parents of the sick children due to constant depression, anxiety, and weak social interaction and may lead to social isolation as well. This research aims to find out the significant effect of socio-religious trends on psychosocial burden of beta thalassemia major among cousin and non-cousin couples in the province of Punjab in Pakistan. It takes a sample of 932 parents of sick children, among whom 735 were married with cousins and 197 with non-cousins, for data collection. The findings reveal that inadequate knowledge of the disease, insufficient or misdirected social support, stigmatization, and marriage breakups caused by the disease, superstitions, and misinterpretations of religion and the subsequent practices accordingly as significant predictors of psychosocial burden of beta thalassemia major among non-cousins and cousin couples. Additionally, it also finds patriarchy as only significant predictors of outcome variable among cousin couples.

Psychological intervention in children with transfusion‐dependent β‐thalassaemia

“…A study among children with thalassaemia found that these children tend to be introverted and emotionally unstable in their personality characteristics, which were mainly manifested as being alone, withdrawn, indifferent to others, inactive, socially passive, low self-confidence, sensitive, depressed, insomnia, anxiety, depression, etc [28]. Psycho- Therefore, alleviating the children's negative emotions through psychological flexibility, helping the children to recover, rebuilding their confidence in life and promoting physical and mental health should also be the focus of medical practitioners today [30,31].…”

Thalassemia: A Review of the Challenges to the Families and Caregivers

“…Lack of social support causes immense psychosocial burdens to patients and families. Therefore, support from family, friends, community, and medical professionals is essential to confront the disease and overcome the burden [ 33 ].…”

“…Lack of knowledge of the causes of disease and its treatment, along with social, cultural, and religious factors, adds to the psychosocial burden. Therefore, the efficacious therapeutic intervention of thalassemia requires an all-inclusive scientific understanding, interpretation, and perception regarding β-thalassemia major [ 33 ]. Long-term psychosocial support is required to help reduce emotional distress, improve compliance with treatment and strengthen coping strategies to improve the quality of life for thalassaemic cases and related family members [ 25 , 34 ].…”

“…Lack of social support causes immense psychosocial burdens to patients and families. Therefore, support from family, friends, community, and medical professionals is essential to confront the disease and overcome the burden [33]. This figure has been developed using the premium version of Biorender (https://biorender.com/) with the publication license number: BH24O9UVHQ.…”

“…Consanguineous marriage among first cousins has a significant role in the continuation of the disease process. Studies have shown that most parents with thalassemic children were found to have consanguineous marriages [29,33,43]. Therefore, it is required to emphasize developing awareness of the disease and encourage carrier detection by doing premarital screening and counseling to reduce the disease frequency among the population (Figure 4).…”