Family consent to deceased organ donation in China: a participatory qualitative study.

Background: Organ donation improves patient survival and quality of life, yet family refusal is a major barrier. This study aimed to explore the role of family discussions in shaping attitudes and decisions about organ donation in China, while also examining the influencing factors at the individual, family, community and societal levels.

Method: Participatory interviews with family members were conducted based on the social-ecological model (SEM). A snowball sampling strategy was adopted to recruit volunteer interviewers. Of 52 interviewers, 25 completed the family group interviews, involving 94 participants in total. Interviews were audio-recorded and transcribed verbatim within 24 hours. Two researchers coded the data in line with SEM. Themes were identified through an inductive process.

Results: Four themes were identified out of family discussions about deceased organ donation: (i) individual perceptions on the value of lives and organ donation (value of organ donation, death attitudes, knowledge about organ donation), (ii) family consensus and conflicts (family structure, family altruism), (iii) collective conformity (conformity, individualism, negativity bias) and (IV) culture and social environment (traditional beliefs, incentive policy, education, media promotion).

Conclusion: This study is the first to systematically examine the factors influencing deceased organ donation in the Chinese family context. Obtaining family consent for organ donation appears to be challenging in Chinese families due to limited knowledge and traditional beliefs. Incentive policies that benefit the family are crucial. While media promotion is effective in increasing awareness of organ donation, education and family discussions are critical in alleviating fears and misunderstandings about deceased organ donation.