{"id":"https://openalex.org/W3087537539","doi":null,"title":"Exploring Parent Experiences with Early Palliative Care Practices in the Neonatal Intensive Care Unit","display_name":"Exploring Parent Experiences with Early Palliative Care Practices in the Neonatal Intensive Care Unit","publication_year":2019,"publication_date":"2019-01-01","ids":{"openalex":"https://openalex.org/W3087537539","mag":"3087537539"},"language":"en","primary_location":{"id":"pmh:oai:repository.arizona.edu:10150/636679","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/10150/636679","pdf_url":null,"source":{"id":"https://openalex.org/S4306400271","display_name":"UA Campus Repository (The University of Arizona)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I138006243","host_organization_name":"University of Arizona","host_organization_lineage":["https://openalex.org/I138006243"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":null,"raw_type":"Electronic Dissertation"},"volume":null,"type":"dissertation","is_traditional":true,"indexed_in":[],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5057744085","display_name":"Megan Quinn","orcid":"https://orcid.org/0000-0003-1544-0773","observed_orcids":["https://orcid.org/0000-0003-1544-0773"]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Megan Quinn","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0000-0003-1544-0773","affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5057744085"],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":false,"cited_by_count":0,"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/T10177","display_name":"Palliative Care and End-of-Life Issues","score":0.8403000235557556,"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/T10177","display_name":"Palliative Care and End-of-Life Issues","score":0.8403000235557556,"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":0.10890000313520432,"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/T13340","display_name":"Palliative and Oncologic Care","score":0.03689999878406525,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/early-palliative-care","display_name":"early palliative care","score":0.9890000224113464},{"id":"https://openalex.org/keywords/neonatal-intensive-care","display_name":"neonatal intensive care","score":0.8550000190734863},{"id":"https://openalex.org/keywords/parental-experiences","display_name":"parental experiences","score":0.6959999799728394},{"id":"https://openalex.org/keywords/shared-decision-making","display_name":"shared decision-making","score":0.9800000190734863},{"id":"https://openalex.org/keywords/care-planning","display_name":"care planning","score":0.9390000104904175},{"id":"https://openalex.org/keywords/coping-with-distress","display_name":"coping with distress","score":0.8379999995231628},{"id":"https://openalex.org/keywords/parenting-stress","display_name":"parental stress","score":0.4620000123977661},{"id":"https://openalex.org/keywords/family-centered-care","display_name":"family-centered care","score":0.7979999780654907},{"id":"https://openalex.org/keywords/peer-support","display_name":"peer support","score":0.800000011920929},{"id":"https://openalex.org/keywords/parental-advocacy","display_name":"parental advocacy","score":0.4189999997615814},{"id":"https://openalex.org/keywords/posttraumatic-stress-disorder","display_name":"post-traumatic stress disorder","score":0.6940000057220459},{"id":"https://openalex.org/keywords/social-media-support","display_name":"social media support","score":0.32899999618530273},{"id":"https://openalex.org/keywords/implementation-barriers","display_name":"implementation barriers","score":0.5009999871253967},{"id":"https://openalex.org/keywords/neonatal-palliative-care","display_name":"neonatal palliative care","score":0.3610000014305115},{"id":"https://openalex.org/keywords/end-of-life-care","display_name":"end-of-life care","score":0.453000009059906},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.4399999976158142},{"id":"https://openalex.org/keywords/survival-mode","display_name":"survival mode","score":0.4429999887943268},{"id":"https://openalex.org/keywords/social-support-networks","display_name":"social support networks","score":0.3700000047683716}],"concepts":[{"id":"https://openalex.org/C2994186709","wikidata":"https://www.wikidata.org/wiki/Q29483","display_name":"Palliative care","level":2,"score":0.6525591015815735},{"id":"https://openalex.org/C2777091541","wikidata":"https://www.wikidata.org/wiki/Q9008292","display_name":"Neonatal intensive care unit","level":2,"score":0.6216171383857727},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.5232164859771729},{"id":"https://openalex.org/C2776376669","wikidata":"https://www.wikidata.org/wiki/Q5094647","display_name":"Intensive care unit","level":2,"score":0.5141332745552063},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.4872668981552124},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.3265931010246277},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.22675371170043945}],"mesh":[],"locations_count":2,"locations":[{"id":"pmh:oai:repository.arizona.edu:10150/636679","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/10150/636679","pdf_url":null,"source":{"id":"https://openalex.org/S4306400271","display_name":"UA Campus Repository (The University of Arizona)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I138006243","host_organization_name":"University of Arizona","host_organization_lineage":["https://openalex.org/I138006243"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":null,"raw_type":"Electronic Dissertation"},{"id":"mag:3087537539","doi":null,"is_oa":false,"landing_page_url":"https://repository.arizona.edu/handle/10150/636679","pdf_url":null,"source":null,"license":null,"license_id":null,"version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":null}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":0.9940000176429749}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":44,"referenced_works":["https://openalex.org/W341331055","https://openalex.org/W1581159814","https://openalex.org/W1957890759","https://openalex.org/W1971156321","https://openalex.org/W1973311351","https://openalex.org/W1975212319","https://openalex.org/W1980244498","https://openalex.org/W1994940117","https://openalex.org/W1998447160","https://openalex.org/W2006142786","https://openalex.org/W2009387585","https://openalex.org/W2011379217","https://openalex.org/W2023641408","https://openalex.org/W2028997950","https://openalex.org/W2033149530","https://openalex.org/W2033700914","https://openalex.org/W2052438582","https://openalex.org/W2055723303","https://openalex.org/W2068374682","https://openalex.org/W2070762903","https://openalex.org/W2106279703","https://openalex.org/W2111850750","https://openalex.org/W2115539253","https://openalex.org/W2120478388","https://openalex.org/W2139894590","https://openalex.org/W2157748572","https://openalex.org/W2167536151","https://openalex.org/W2181173629","https://openalex.org/W2212974265","https://openalex.org/W2243212592","https://openalex.org/W2314249839","https://openalex.org/W2321126718","https://openalex.org/W2464056365","https://openalex.org/W2466448178","https://openalex.org/W2511383318","https://openalex.org/W2527293369","https://openalex.org/W2553332222","https://openalex.org/W2589216709","https://openalex.org/W2594900021","https://openalex.org/W2596731415","https://openalex.org/W2768072433","https://openalex.org/W2768381177","https://openalex.org/W2779783086","https://openalex.org/W2910572681"],"related_works":["https://openalex.org/W4391617937","https://openalex.org/W4402325433","https://openalex.org/W7167598789","https://openalex.org/W3003506727","https://openalex.org/W2325435602","https://openalex.org/W2345575765","https://openalex.org/W4311875457","https://openalex.org/W162165855","https://openalex.org/W7117426382","https://openalex.org/W2073812023"],"abstract_inverted_index":{"The":[0,158,322],"anxiety":[1],"and":[2,35,43,80,92,104,114,128,173,187,194,208,235,247,265,295,316,335,353,364,368,389,401,437,456,481,488,490,492],"uncertain":[3],"outcome":[4],"of":[5,8,33,58,75,89,97,120,155,160,189,212,239,273,280,292,359,404,419,443,449,468,484],"an":[6,65,228],"admission":[7],"a":[9,78,152,213,256,287,311,336,386,414,432,447,462,476],"seriously":[10],"ill":[11],"infant":[12],"to":[13,30,67,71,125,150,164,199,231,242,268,285,308,331,411,427,494],"the":[14,73,118,244,249,289,293,371,440,466,473,482],"neonatal":[15],"intensive":[16],"care":[17,62,68,102,171,303,318,362],"unit":[18],"(NICU)":[19],"can":[20,28],"cause":[21],"great":[22],"stress":[23,27,45],"for":[24,77,106,348,375,434,465],"parents.":[25],"This":[26,459],"lead":[29],"decreased":[31],"quality":[32,74],"life":[34,76],"poor":[36],"mental":[37],"health":[38],"outcomes":[39],"including":[40],"anxiety,":[41],"depression,":[42],"posttraumatic":[44],"disorder":[46],"(PTSD),":[47],"which":[48],"NICU":[49,129,146,180,372,474],"parents":[50,57,147,305,360,487,491],"suffer":[51],"from":[52,111,145,475],"at":[53],"higher":[54],"rates":[55],"than":[56],"well":[59],"infants.":[60],"Palliative":[61],"(PC)":[63],"is":[64,137],"approach":[66,260],"that":[69],"aims":[70],"maintain":[72],"person":[79],"their":[81,178,240,281,298],"loved":[82],"ones":[83],"by":[84,261,399],"emphasizing":[85,406,479],"value-based":[86],"decision-making,":[87,101,170,356],"management":[88],"distressing":[90],"symptoms,":[91],"family-centered":[93],"care.":[94],"Early":[95],"implementation":[96,126],"PC":[98,130,143,383,405,471],"emphasizes":[99],"shared":[100,169,274],"planning,":[103,172,363],"support":[105,338,352,367,438],"coping":[107,174,328],"with":[108,168,175,255,302,345,381,385,413],"distress.":[109],"Evidence":[110,136],"pediatric,":[112],"adult,":[113],"perinatal":[115],"literature":[116,131],"supports":[117],"use":[119,418,430],"early":[121,142,156,382,407,470],"PC,":[122],"but":[123],"barriers":[124],"exist,":[127],"focuses":[132],"exclusively":[133],"on":[134,297],"end-of-life.":[135],"needed":[138],"about":[139],"these":[140,267],"three":[141,277],"practices":[144,384],"in":[148,219,355,361,370,439,451,472],"order":[149],"develop":[151],"parent-centered":[153,477],"program":[154],"PC.":[157],"purpose":[159],"this":[161,397,444,496],"study":[162,445,460],"was":[163,185,253],"explore":[165],"parent":[166,214,379],"experiences":[167,301,380],"distress":[176],"during":[177],"child\u2019s":[179],"admission.":[181],"Qualitative":[182,251],"descriptive":[183],"methodology":[184],"used,":[186],"strategies":[188],"reflexive":[190],"journaling,":[191],"peer":[192,366,435],"debriefing,":[193],"data":[195,246,252],"audits":[196],"were":[197,203,329],"used":[198],"enhance":[200],"trustworthiness.":[201],"Participants":[202,225],"recruited":[204],"online":[205,229],"through":[206],"email":[207],"social":[209,420],"media":[210,421],"sites":[211],"organization.":[215],"Sixteen":[216],"individuals":[217],"participated":[218],"semi-structured":[220],"interviews":[221],"using":[222],"videoconferencing":[223],"technology.":[224],"also":[226,395],"completed":[227],"survey":[230],"supply":[232],"demographic":[233],"information":[234,284],"describe":[236,248],"relevant":[237],"characteristics":[238],"infants":[241,412],"contextualize":[243],"qualitative":[245],"sample.":[250,392],"analyzed":[254],"conventional":[257],"content":[258],"analysis":[259],"coding":[262],"important":[263],"phrases":[264],"abstracting":[266],"overarching":[269],"themes.":[270],"Parents\u2019":[271,417],"descriptions":[272],"decision-making":[275],"contained":[276],"key":[278,323,346],"aspects":[279],"experience:":[282],"gathering":[283],"make":[286],"decision,":[288,294],"emotional":[290],"impact":[291],"influences":[296],"decision-making.":[299],"In":[300],"planning":[304,319],"described":[306],"learning":[307],"advocate,":[309],"having":[310],"spectator":[312],"versus":[313],"participant":[314],"role,":[315],"experiencing":[317],"as":[320,431],"communication.":[321],"themes":[324],"expressed":[325],"regarding":[326],"parental":[327],"exposure":[330],"trauma,":[332],"survival":[333],"mode,":[334],"changing":[337],"network.":[339],"These":[340],"findings":[341],"provide":[342],"practicing":[343],"clinicians":[344],"areas":[347],"improvement:":[349],"providing":[350],"more":[351,387],"collaboration":[354],"true":[357],"engagement":[358],"supporting":[365],"interaction":[369],"environment.":[373],"Implications":[374],"research":[376,398],"include":[377,446],"exploring":[378],"ethnically":[388],"culturally":[390],"diverse":[391],"Researchers":[393],"may":[394],"further":[396,425],"developing":[400],"evaluating":[402],"programs":[403],"intervention":[408],"not":[409],"limited":[410],"terminal":[415],"diagnosis.":[416],"should":[422],"be":[423],"studied":[424],"due":[426],"its":[428],"emerging":[429],"tool":[433],"connection":[436],"NICU.":[441],"Limitations":[442],"lack":[448],"diversity":[450],"sample":[452],"race":[453],"or":[454],"ethnicity":[455],"marital":[457],"status.":[458],"provides":[461],"beginning":[463],"foundation":[464],"work":[467],"implementing":[469],"perspective,":[478],"communication":[480],"building":[483],"relationships":[485],"between":[486],"clinicians,":[489],"researchers":[493],"achieve":[495],"goal.":[497]},"counts_by_year":[],"updated_date":"2025-11-06T04:12:42.849631","created_date":"2020-09-25T00:00:00"}
