Table 2.

Summary of Findings from In-Depth Interviews with Last Gift Study Participants (2017–2019) and Implications for End-of-Life HIV Cure-Related Research

Summary of findings	Implications for future EOL HIV cure-related research
Meaning of the Last Gift study • The Last Gift study provided fulfillment, meaning, and self-actualization at the EOL—providing opportunities for patient/participant agency, meaning in research participation, and a deeper purpose in the death and dying process.	• Participants' motivations, concerns, perspectives, and experiences need to be taken into account to ensure patient/participant centeredness and ethical research conduct at the EOL.
Altruism and the gifting relationship • HIV-specific altruism was a salient theme that dominated participants' accounts of their motivations to become involved in the Last Gift study. • Community-related and scientific altruism and a moral obligation to participate were prominent altruistic features articulated by participants.	• Continuing to understand how PLWHIV make decisions to participate in and their experience in EOL HIV cure-related studies is critical to ethical and fully informed research design that preserves patient/participant voice. • Empirical research is needed on mental health and psychosocial aspects of the EOL among HIV research participants, incorporating their cultural values, gender norms, and other more nuanced and intangible factors.
Perceived benefits of the Last Gift study • Deep emotional and psychological benefits were described by Last Gift participants as a result of being involved in the study. • Control over the EOL process and peace of mind appeared to be among the most salient benefits.	• Expectations and potential scientific benefits of HIV cure-related research at the EOL must not be oversold or exaggerated to participants. The informed consent process must be robust. • Psychosocial benefits and challenges must be acknowledged and appreciated through a multidisciplinary and translational EOL research framework that integrates behavioral and social sciences with biomedical research.
Perceived risks and concerns with Last Gift study • Participants did not describe any major risks or concerns associated with the Last Gift study, although provided perspectives on what they hypothetically would consider to be “too much risk” to help inform future EOL HIV cure-related research design.	• The deep sense of respect, trust, and partnership between research teams and participants should be prioritized to ensure patient centeredness in all research endeavors. • Participants' lived experiences must continue to be valued, and their bodies treated with respect and dignity in life and after passing.
Gratitude toward Last Gift research staff • The overarching message during Last Gift study follow-up was one of gratitude toward study staff and the fact that HIV cure-related research exists.	• A clear distinction between research and care must be ensured; yet participant/research staff partnerships built upon patient centeredness, respect, and trust must be prioritized for an ethical, fully informed research experience acceptable to participants.

EOL, end of life.