{"doi":"10.17615/n7wx-3c80","title":"Attitudes and perceptions of next-of-kin/loved ones toward end-of-life HIV cure-related research: A qualitative focus group study in Southern California","abstract":"As end-of-life (EOL) HIV cure-related research expands, understanding perspectives of participants’ next-of-kin (NOK) is critical to maintaining ethical study conduct. We conducted two small focus groups and two one-on-one interviews using focus group guides with the NOK of Last Gift study participants at the University of California, San Diego (UCSD). Participating NOK included six individuals (n = 5 male and n = 1 female), including a grandmother, grandfather, partner, spouse, and two close friends. Researchers double-coded the transcripts manually for overarching themes and sub-themes using an inductive approach. We identified six key themes: 1) NOK had an accurate, positive understanding of the Last Gift clinical study; 2) NOK felt the study was conducted ethically; 3) Perceived benefits for NOK included support navigating the dying/grieving process and personal growth; 4) Perceived drawbacks included increased sadness, emotional stress, conflicted wishes between NOK and study participants, and concerns around potential invasiveness of study procedures at the EOL; 5) NOK expressed pride in loved ones’ altruism; and 6) NOK provided suggestions to improve the Last Gift study, including better communication between staff and themselves. These findings provide a framework for ethical implementation of future EOL HIV cure-related research involving NOK.","journal":"UNC Libraries","year":2022,"id":310148,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":0,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9368,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2022-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":4742,"name":"D. Smith","orcid":null,"position":1,"is_corresponding":false},{"id":1005832,"name":"S.S. Javadi","orcid":null,"position":2,"is_corresponding":false},{"id":977911,"name":"S. Gianella","orcid":null,"position":3,"is_corresponding":false},{"id":977914,"name":"Sherman Little","orcid":null,"position":4,"is_corresponding":false},{"id":977910,"name":"S. Concha-Garcia","orcid":null,"position":5,"is_corresponding":false},{"id":181436,"name":"J. Taylor","orcid":null,"position":6,"is_corresponding":false},{"id":1005551,"name":"Margret Lo","orcid":"0000-0001-8832-7697","position":7,"is_corresponding":false},{"id":1005552,"name":"Kathrina Perry","orcid":"0000-0002-5680-9680","position":8,"is_corresponding":false},{"id":1003207,"name":"H. Patel","orcid":null,"position":9,"is_corresponding":false},{"id":1003206,"name":"K. Dubé","orcid":null,"position":10,"is_corresponding":false},{"id":977920,"name":"K. Mathur","orcid":null,"position":11,"is_corresponding":false},{"id":977916,"name":"A. Kaytes","orcid":null,"position":0,"is_corresponding":true}],"reference_count":0,"raw_metadata":null,"created_at":"2026-07-19T00:33:19.712967Z","pmid":null,"pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}