Social networks and social support: Parents experiences in the management of thalassemia, a complex lifelong inherited blood disorder, in the indigenous context – A qualitative study

Abstract

BackgroundThalassemia is the most serious and rare genetic blood disorder and requires regular blood transfusions and lifelong medical care. Indigenous people living in low –and middle-income countries have limited opportunities and support to access and receive services. AimThe present study aimed to uncover the social networks of affected indigenous families and their role in the treatment and management of the disease from the perspective of the parents of affected children. Materials and methodsParticipants included parents of children who provide care and support for their children to receive regular treatment. This qualitative study used a phenomenological approach and collected data through in-depth face-to-face interviews to understand the parent's lived experiences in an indigenous context. Participants' demographic data and network members were collected, and the network map was depicted using NodeXL software. Thematic analysis was used to extract important themes from the data. Themes extracted during analysis indicated that families with homogenous extended families, neighbors, and relatives received tangible social support such as blood donation, caring for the affected, and regular hospital visits. ResultsFamilies with heterogeneous peer families, non-governmental organizations (NGO), religious organizations, and tertiary care professionals availed of Government schemes and services and achieved permanent bone marrow transplantation cures. ConclusionThese findings are significant for developing a context-specific strategy to provide genetic treatment and service delivery, which is crucial for managing hereditary diseases.