{"id":"https://openalex.org/W4408498246","doi":"https://doi.org/10.1101/2025.03.12.25322895","title":"NICU Voices: Understanding Parent Perspectives of Research in the Neonatal Intensive Care Unit","display_name":"NICU Voices: Understanding Parent Perspectives of Research in the Neonatal Intensive Care Unit","publication_year":2025,"publication_date":"2025-03-15","ids":{"openalex":"https://openalex.org/W4408498246","doi":"https://doi.org/10.1101/2025.03.12.25322895","pmid":"https://pubmed.ncbi.nlm.nih.gov/40162259","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/11952593"},"language":"en","primary_location":{"id":"doi:10.1101/2025.03.12.25322895","doi":"https://doi.org/10.1101/2025.03.12.25322895","is_oa":false,"landing_page_url":"https://doi.org/10.1101/2025.03.12.25322895","pdf_url":null,"source":{"id":"https://openalex.org/S3005729997","display_name":"medRxiv","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core"],"host_organization":null,"host_organization_name":null,"host_organization_lineage":["https://openalex.org/P4310315909"],"host_organization_lineage_names":["Cold Spring Harbor Laboratory Press"],"type":"repository"},"license":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":"medRxiv","raw_type":"posted-content"},"volume":null,"type":"preprint","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/11952593","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5055222824","display_name":"Melissa Coloma","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Melissa Coloma","raw_affiliation_strings":["School of Medicine University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"School of Medicine University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5075669283","display_name":"Brandon T. Nguyen","orcid":"https://orcid.org/0000-0002-9305-0204","observed_orcids":["https://orcid.org/0000-0002-9305-0204"]},"institutions":[{"id":"https://openalex.org/I62657347","display_name":"Touro University Nevada","ror":"https://ror.org/05t9mkx39","country_code":"US","type":"education","lineage":["https://openalex.org/I62657347"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Brandon Nguyen","raw_affiliation_strings":["School of Medicine, Touro University of Nevada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"School of Medicine, Touro University of Nevada","institution_ids":["https://openalex.org/I62657347"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5093206847","display_name":"William Cody Bartrug","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"William Cody Bartrug","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5108992046","display_name":"Louie M Swander","orcid":"https://orcid.org/0009-0005-5834-7861","observed_orcids":["https://orcid.org/0009-0005-5834-7861"]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Louie M. Swander","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5080704396","display_name":"Karla Luna Silva","orcid":"https://orcid.org/0000-0002-5698-7495","observed_orcids":["https://orcid.org/0000-0002-5698-7495"]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Karla Luna Silva","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"middle","author":{"id":null,"display_name":"Egbert Villegas","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Egbert Villegas","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5008860367","display_name":"Adam L. Numis","orcid":"https://orcid.org/0000-0002-1594-9812","observed_orcids":["https://orcid.org/0000-0002-1594-9812"]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Adam Numis","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5071217971","display_name":"Patrick S. McQuillen","orcid":"https://orcid.org/0000-0002-8837-364X","observed_orcids":["https://orcid.org/0000-0002-8837-364X"]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Patrick McQuillen","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5042189476","display_name":"Shabnam Peyvandi","orcid":"https://orcid.org/0000-0003-1379-544X","observed_orcids":["https://orcid.org/0000-0003-1379-544X"]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Shabnam Peyvandi","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"middle","author":{"id":null,"display_name":"Elizabeth E. Rogers","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Elizabeth E. Rogers","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5028370980","display_name":"Elizabeth Erin Crouch","orcid":"https://orcid.org/0000-0002-4110-9892","observed_orcids":["https://orcid.org/0000-0002-4110-9892"]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Elizabeth E. Crouch","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5017540861","display_name":"Mercedes F. Paredes","orcid":"https://orcid.org/0000-0003-2503-1447","observed_orcids":["https://orcid.org/0000-0003-2503-1447"]},"institutions":[{"id":"https://openalex.org/I180670191","display_name":"University of California, San Francisco","ror":"https://ror.org/043mz5j54","country_code":"US","type":"education","lineage":["https://openalex.org/I180670191"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Mercedes Paredes","raw_affiliation_strings":["University of California, San Francisco"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California, San Francisco","institution_ids":["https://openalex.org/I180670191"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":2,"corresponding_author_ids":["https://openalex.org/A5055222824"],"corresponding_institution_ids":["https://openalex.org/I180670191"],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":false,"cited_by_count":1,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9911999702453613,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9911999702453613,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T14437","display_name":"Ethics and Legal Issues in Pediatric Healthcare","score":0.007199999876320362,"subfield":{"id":"https://openalex.org/subfields/2735","display_name":"Pediatrics, Perinatology and Child Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11060","display_name":"Infant Development and Preterm Care","score":0.0003000000142492354,"subfield":{"id":"https://openalex.org/subfields/2735","display_name":"Pediatrics, Perinatology and Child Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/neonatal-intensive-care-unit","display_name":"neonatal intensive care unit","score":0.8019999861717224},{"id":"https://openalex.org/keywords/research-recruitment","display_name":"research recruitment","score":0.9359999895095825},{"id":"https://openalex.org/keywords/parental-perceptions","display_name":"parental attitudes","score":0.6769999861717224},{"id":"https://openalex.org/keywords/altruism","display_name":"altruism","score":0.8519999980926514},{"id":"https://openalex.org/keywords/parental-resilience","display_name":"parental resilience","score":0.5400000214576721},{"id":"https://openalex.org/keywords/risk-benefit-communication","display_name":"risk-benefit communication","score":0.5440000295639038},{"id":"https://openalex.org/keywords/empathic-communication","display_name":"empathic communication","score":0.6259999871253967},{"id":"https://openalex.org/keywords/research-engagement","display_name":"research engagement","score":0.46000000834465027},{"id":"https://openalex.org/keywords/newborns","display_name":"neonates","score":0.33399999141693115},{"id":"https://openalex.org/keywords/parental-decision-making","display_name":"parental decision-making","score":0.3790000081062317}],"concepts":[{"id":"https://openalex.org/C2777091541","wikidata":"https://www.wikidata.org/wiki/Q9008292","display_name":"Neonatal intensive care unit","level":2,"score":0.8172999620437622},{"id":"https://openalex.org/C2776376669","wikidata":"https://www.wikidata.org/wiki/Q5094647","display_name":"Intensive care unit","level":2,"score":0.45648714900016785},{"id":"https://openalex.org/C122637931","wikidata":"https://www.wikidata.org/wiki/Q118084","display_name":"Unit (ring theory)","level":2,"score":0.4462496042251587},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.43165507912635803},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.39239776134490967},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.3783828318119049},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.3649798035621643},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.22160884737968445},{"id":"https://openalex.org/C145420912","wikidata":"https://www.wikidata.org/wiki/Q853077","display_name":"Mathematics education","level":1,"score":0.059481680393218994}],"mesh":[],"locations_count":3,"locations":[{"id":"doi:10.1101/2025.03.12.25322895","doi":"https://doi.org/10.1101/2025.03.12.25322895","is_oa":false,"landing_page_url":"https://doi.org/10.1101/2025.03.12.25322895","pdf_url":null,"source":{"id":"https://openalex.org/S3005729997","display_name":"medRxiv","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core"],"host_organization":null,"host_organization_name":null,"host_organization_lineage":["https://openalex.org/P4310315909"],"host_organization_lineage_names":["Cold Spring Harbor Laboratory Press"],"type":"repository"},"license":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":"medRxiv","raw_type":"posted-content"},{"id":"pmid:40162259","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/40162259","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"medRxiv : the preprint server for health sciences","raw_type":"Journal Article"},{"id":"pmh:oai:pubmedcentral.nih.gov:11952593","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/11952593","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"medRxiv","raw_type":"Text"}],"best_oa_location":{"id":"pmh:oai:pubmedcentral.nih.gov:11952593","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/11952593","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"medRxiv","raw_type":"Text"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":0.9537000060081482}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":13,"referenced_works":["https://openalex.org/W19514733","https://openalex.org/W1993744482","https://openalex.org/W2024732953","https://openalex.org/W2319584370","https://openalex.org/W2900226329","https://openalex.org/W3008200233","https://openalex.org/W3021118091","https://openalex.org/W3197667773","https://openalex.org/W3208996259","https://openalex.org/W4280578803","https://openalex.org/W4300961655","https://openalex.org/W4388423412","https://openalex.org/W4392866995"],"related_works":["https://openalex.org/W3021118091","https://openalex.org/W2508674369","https://openalex.org/W1977719984","https://openalex.org/W2088723951","https://openalex.org/W1993092435","https://openalex.org/W4388997599","https://openalex.org/W2366970335","https://openalex.org/W2946762952","https://openalex.org/W7151896717","https://openalex.org/W7125395955"],"abstract_inverted_index":{"Importance:":[0],"Neonatal":[1],"intensive":[2],"care":[3,6],"units":[4],"(NICUs)":[5],"for":[7,233,265,295],"a":[8,64,155,262],"vulnerable":[9],"population":[10],"with":[11,51,101],"suboptimal":[12],"research":[13,39,103,211,236,268],"recruitment":[14,24],"rates.":[15],"Understanding":[16],"NICU":[17,31,56,112,129,198,210,235,266,291,301],"parents'":[18,32,191,267],"motivations":[19],"and":[20,40,61,140,152,181,203,225,230,251,258,283,298],"recommendations":[21,42,232],"may":[22],"improve":[23],"efforts.":[25],"Objective:":[26],"Identify":[27],"key":[28,263],"factors":[29,214],"influencing":[30],"decisions":[33],"to":[34,43,72,77,163,168,221,247,287],"enroll":[35],"their":[36],"newborns":[37],"in":[38,135],"gather":[41],"enhance":[44],"engagement.":[45],"Design:":[46],"Semi-structured":[47],"interviews":[48],"were":[49,84,114],"conducted":[50],"24":[52,116],"parents":[53,110],"from":[54,243,277],"three":[55],"study":[57],"populations:":[58],"NSR-RISE,":[59,136,178],"TRANSIT-CHD,":[60,137,180],"PROMPT.":[62],"Using":[63,154],"grounded":[65,156],"theory":[66,157],"approach,":[67,158],"data":[68,81,90,159,172],"was":[69,95,160],"analyzed":[70,161],"prior":[71,133,162],"developing":[73,164],"hypotheses,":[74,165],"allowing":[75,166],"themes":[76,167,188],"emerge":[78,169],"organically":[79,170],"during":[80,171,194],"analysis.":[82,173],"Transcripts":[83],"coded":[85],"through":[86],"multiple":[87],"rounds":[88],"of":[89,111,148,176,254],"analysis":[91],"until":[92],"thematic":[93],"saturation":[94],"reached.":[96],"Setting:":[97],"Interviews":[98],"occurred":[99],"virtually":[100],"previous":[102],"participants":[104],"at":[105,146],"UCSF":[106],"hospitals.":[107],"Participants:":[108],"65":[109],"patients":[113],"invited;":[115],"participated.":[117,185],"Inclusion":[118],"criteria":[119],"included":[120,213],"1)":[121,190],"parent":[122],"age":[123],"older":[124],"than":[125],"18":[126],"years,":[127],"2)":[128,207],"admission":[130],"history,":[131],"3)":[132,231],"participation":[134,212],"or":[138],"PROMPT,":[139],"4)":[141],"child":[142],"aged":[143],"18-36":[144],"months":[145],"time":[147],"interview.":[149],"Main":[150],"Outcomes":[151],"Measures:":[153],"Results:":[174],"Parents":[175],"8":[177,179,182],"PROMPT-enrolled":[183],"neonates":[184],"Three":[186],"primary":[187],"emerged:":[189],"lived":[192],"experiences":[193],"an":[195],"emotionally":[196,289],"intense":[197],"period":[199],"fostered":[200],"parental":[201],"resilience":[202],"newfound":[204],"support":[205],"systems,":[206],"decision-making":[208],"regarding":[209],"such":[215,238],"as":[216,239],"prognosis,":[217],"emotional":[218],"state,":[219],"desire":[220],"aid":[222],"future":[223],"families,":[224],"perceived":[226],"risks":[227,282],"versus":[228],"benefits,":[229],"improving":[234,296],"recruitment,":[237],"timely,":[240],"empathic":[241],"communication":[242,276],"trusted":[244,278],"researchers,":[245],"sensitivity":[246],"emotions,":[248],"concise":[249],"language,":[250],"early":[252],"emphasis":[253],"altruistic":[255,284],"goals.":[256],"Conclusions":[257],"Relevance:":[259],"Altruism":[260],"is":[261,293],"motivator":[264],"participation.":[269],"Recruitment":[270],"strategies":[271],"should":[272],"emphasize":[273],"empathetic,":[274],"well-timed":[275],"persons,":[279],"clearly":[280],"addressing":[281],"outcomes.":[285],"Sensitivity":[286],"the":[288,300],"charged":[290],"environment":[292],"essential":[294],"engagement":[297],"enhancing":[299],"experience.":[302]},"counts_by_year":[{"year":2026,"cited_by_count":1}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2025-03-17T00:00:00"}
