{"doi":"10.1371/journal.pone.0250882","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":"PLoS ONE","year":2021,"id":189084,"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":15,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9393,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2021-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":383218,"name":"Kushagra Mathur","orcid":"0000-0002-0934-1958","position":1,"is_corresponding":false},{"id":384307,"name":"Susanna Concha‐Garcia","orcid":null,"position":2,"is_corresponding":false},{"id":383216,"name":"Hursch Patel","orcid":"0000-0002-0725-4922","position":3,"is_corresponding":false},{"id":383215,"name":"Kelly E. Perry","orcid":"0000-0002-8637-4729","position":4,"is_corresponding":false},{"id":108158,"name":"Megan Lo","orcid":"0000-0002-6387-8182","position":5,"is_corresponding":false},{"id":328436,"name":"Jeff Taylor","orcid":"0000-0002-1108-2385","position":6,"is_corresponding":false},{"id":384306,"name":"Andy Kaytes","orcid":null,"position":7,"is_corresponding":false},{"id":69651,"name":"Susan J. Little","orcid":"0000-0002-7645-9737","position":8,"is_corresponding":false},{"id":240305,"name":"Sara Gianella","orcid":"0000-0002-9927-0849","position":9,"is_corresponding":false},{"id":36878,"name":"Davey M. Smith","orcid":"0000-0003-3603-1733","position":10,"is_corresponding":false},{"id":299395,"name":"Karine Dubé","orcid":"0000-0003-3458-1539","position":11,"is_corresponding":false},{"id":383217,"name":"Sogol Stephanie Javadi","orcid":"0000-0002-2366-4550","position":0,"is_corresponding":true}],"reference_count":49,"raw_metadata":null,"created_at":"2026-07-18T23:49:14.547082Z","pmid":"33961653","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":[]}