The gift of life: Understanding the experiences of organ donor families.

Abstract

The family being a fundamental unit of society in India, the decisions regarding organ donation are usually made collectively within the family, involving not only the immediate family but also extended family members. Such a situation is encountered with brain death and organ donation as well. Therefore, delving into the family's journey before, during, and after organ donation is essential for refining best practices and transforming public perceptions. 1. To explore the factors influencing the family decision making regarding deceased organ donation. 2. To examine the complexities involved in decision making after a request for organ donation. 3. To gain insights into the experiences of families during organ donation journey. A descriptive exploratory study using mixed-method approach was conducted at a public hospital in North India. A semistructured questionnaire containing demographic data with different variables and questions about experience of decision maker during organ donation process was used. Following the communication of brain death, 15% (n = 12) of decision makers were confused about brain death and 25% (n = 20) were very hopeful. 32% (n = 26) had accepted brain death as death. 78% (n = 63) of decision makers expressed a lack of sufficient knowledge about organ donation to make an informed decision. The study underscores the importance of perceptions of decision makers and the significant potential of public sector hospitals in facilitating deceased organ donation (DOD). Trust in these institutions plays a crucial role in achieving successful DOD outcomes.