Dimensions of social capital of families with thalassemia in an indigenous population in Tamil Nadu, India – a qualitative study

BACKGROUND Studies have shown that social capital is positively associated with health, and the association is context-based. Indigenous populations with poor access to health care largely depend on social capital for their health care needs. This study was conducted to explore the dimensions and types of social capital and its utilization by families with thalassemia for their health and well-being in an indigenous population in Tamil Nadu, India. METHODS The participants in the study were parents who had children with thalassemia, belonged to an indigenous community in Tamil Nadu, were poor and marginalized, and had poor access to health care. Different dimensions and types of social capital were examined with the help of qualitative in-depth interviews using a phenomenological approach. A total of 8 in-depth interviews were conducted and transcribed. Thematic analysis of the data was performed. RESULTS The social capital identified through the in-depth interviews consisted of various levels of family support, financial support from relatives and neighbors, the provision of information from formal and informal networks, and trust in the physician. Indigenous communities are close-knit due to their geographical remoteness and limited accessibility. Family ties were a form of social capital that encouraged bonding, and provided support and care to the children affected by thalassemia. The bonding also helped to meet the regular requirement of blood donation for the children. Relatives and neighbors were an asset that served as a bridge for the families affected, helping them in times of immediate and urgent financial need, making it easier to sustain long-term treatment and providing emotional support. There were informal networks that bridged parents belonging to indigenous and non-indigenous communities, with the latter providing the former with information to help them choose better health care at an affordable cost. The other formal links were the ties between the parents and nongovernmental organizations, such as the local thalassemia association, which connected members belonging to different areas. It was these ties that were of the greatest assistance to the families affected in coping with the disease, enabling them to sustain the treatment, and assisting them to choose and carry out the complicated bone marrow transplantation, which is the definitive treatment for this condition. CONCLUSION The bonding, bridging, and linking dimensions of social capital help communities cope with thalassemia, the more so in indigenous and marginalized communities.