Introduction:
According to the National Organ and Tissues Transplant Organization, from 1995 to 2019, only 7.77% of all organ donations in India were from the deceased donors (Kumar et al., 2021). Literature reveals to us the gaps from the side of the hospital, government, and procedural aspects (Kute et al., 2020). However, there is a dearth of research on deceased donors’ families’ experiences in a developing country like India. The aim of the study is to capture the organ donation experiences of deceased donor families, the positive and negative influences on their decision, and their reflections on the decision today.
Methods:
This is an on-going qualitative study, and uses semi-structured interviews. 5 participants were recruited using purposive sampling, and the data collected was analysed using ATLAS.ti software. The study will incorporate 15-20 deceased donor families from two hospitals in Gurgaon, India (Fortis Memorial Research Institute, Gurugram & Medanta–The Medicity, Gurugram).
Results:
The two main themes and following subthemes of the study included ‘positive influences’ (Appreciation from Hospital Staff, Core Values, Donor’s Pledge, Donor’s Personality, Grief Management, Impact on Society, Infrastructural Support, Satisfaction, Recognition (material and non-material), and Spiritual Upliftment) and ‘negative influences’ (Concern over Body Disfigurement, Family Disagreement, Fear of Organ Trafficking, Lack of Incentive, Lack of Literature/ Resources, Procedural Obstacles and Religious Beliefs).
The positive influences are both material and non-material in nature and help drive the decision to donate. The negative influences on the decision to donate can help explain the low numbers of deceased donor donations in India, with lack of incentives and lack of awareness of procedural aspects of the donation process hindering the decision to donate. Thus, there is a need to fill the gaps that exist in this program through more scholarship, government interventions, and awareness campaigns.
Conclusions:
The study's preliminary findings suggest that deceased donors have an overall positive experience from the donation process. These positive experiences and influences on donating can be studied and used in policy-making to counter the negative influences that hinder many potential deceased donor families from donating organs in India.
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.