Perceptions of Next-of-Kin/Loved Ones About Last Gift Rapid Research Autopsy Study Enrolling People with HIV/AIDS at the End of Life: A Qualitative Interview Study
| Autor: | Stephen A. Rawlings, Kelly E. Perry, Sogol S. Javadi, Andy Kaytes, Susan Concha-Garcia, Hursch Patel, Davey M. Smith, Sara Gianella, John A. Sauceda, Karine Dubé, Jeff Taylor, Susan J. Little, Kushagra Mathur, Steven Hendrickx, Brandon Brown |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
end of life
Male 0301 basic medicine medicine.medical_specialty Next of kin media_common.quotation_subject Clinical Sciences Immunology HIV Infections Qualitative property Context (language use) Last Gift 03 medical and health sciences Body donation Dignity 0302 clinical medicine Acquired immunodeficiency syndrome (AIDS) Clinical Research Virology medicine Humans Family 030212 general & internal medicine loved ones Qualitative Research socio-behavioral research media_common next-of-kin/loved ones medicine.disease next-of-kin humanities HIV cure research Death 030104 developmental biology Infectious Diseases Family medicine HIV/AIDS Female Perception Autopsy Sociobehavioral Thematic analysis rapid research autopsy Psychology Psychosocial |
| Zdroj: | AIDS Res Hum Retroviruses AIDS research and human retroviruses, vol 36, iss 12 |
| ISSN: | 1931-8405 0889-2229 |
| DOI: | 10.1089/aid.2020.0025 |
| Popis: | A growing number of people living with HIV/AIDS are participating in HIV cure-related research at the end of life (EOL). Due to the novelty of EOL HIV cure-related research, there is a need to understand how their next-of-kin (NOK) perceive such research. We conducted in-depth interviews with NOK of the Last Gift study participants at the University of California, San Diego. The Last Gift study occurs in the context of the EOL and involves a full body donation. NOK completed two interviews: (1) shortly after the participants' enrollment in the study and (2) following death. We applied thematic analysis to analyze qualitative data. NOK included seven individuals (five males and two females), including two spouses, one ex-partner, one sister, a grandmother/grandfather, and a close friend. Thematic analysis revealed five key themes: (1) NOK viewed the Last Gift program in a positive light and had an accurate overall understanding of the study; (2) NOK identified factors that motivated participants to donate their body to science; (3) NOK identified benefits of the Last Gift program for both the donors and themselves; (4) NOK did not perceive any physical risks or decisional regrets of study but wanted to minimize psychosocial impacts and ensure the dignity of participants at all times; and (5) NOK noted elements that remained essential to the successful implementation of EOL HIV cure-related research, such as early involvement and clear communication. Our study uniquely contributes to increased understanding and knowledge of what is important from the point of view of supportive NOK to ensure successful implementation of EOL HIV cure-related research. More research will be needed to understand perspectives of less supportive NOK. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|