{"id":"https://openalex.org/W69221584","doi":null,"title":"The realization of parental knowing: End-of-life decision making in pediatric blood and marrow transplantation","display_name":"The realization of parental knowing: End-of-life decision making in pediatric blood and marrow transplantation","publication_year":2010,"publication_date":"2010-01-01","ids":{"openalex":"https://openalex.org/W69221584","mag":"69221584"},"language":"en","primary_location":{"id":"pmh:oai:repository.arizona.edu:10150/194461","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/10150/194461","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/A5072392678","display_name":"Cindy J. Rishel","orcid":"https://orcid.org/0000-0003-4772-5634","observed_orcids":["https://orcid.org/0000-0003-4772-5634"]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Cindy J. Rishel","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5072392678"],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":false,"cited_by_count":2,"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":0.736299991607666,"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":0.736299991607666,"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/T13340","display_name":"Palliative and Oncologic Care","score":0.17479999363422394,"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":0.08259999752044678,"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/end-of-life-decision-making","display_name":"end-of-life decisions","score":0.8889999985694885},{"id":"https://openalex.org/keywords/parental-decision-making","display_name":"parental decision-making","score":0.8050000071525574},{"id":"https://openalex.org/keywords/do-not-resuscitate-orders","display_name":"do-not-resuscitate orders","score":0.8849999904632568},{"id":"https://openalex.org/keywords/withdrawal-of-life-sustaining-treatment","display_name":"withdrawal of life-sustaining treatment","score":0.9169999957084656},{"id":"https://openalex.org/keywords/parental-trust","display_name":"parental trust","score":0.5979999899864197},{"id":"https://openalex.org/keywords/self-acceptance","display_name":"self-acceptance","score":0.7860000133514404},{"id":"https://openalex.org/keywords/fear","display_name":"fear","score":0.34599998593330383}],"concepts":[{"id":"https://openalex.org/C156325361","wikidata":"https://www.wikidata.org/wiki/Q1152864","display_name":"Grounded theory","level":3,"score":0.5979410409927368},{"id":"https://openalex.org/C2911091166","wikidata":"https://www.wikidata.org/wiki/Q106419912","display_name":"Transplantation","level":2,"score":0.5107083320617676},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.4355209767818451},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.4321649670600891},{"id":"https://openalex.org/C138496976","wikidata":"https://www.wikidata.org/wiki/Q175002","display_name":"Developmental psychology","level":1,"score":0.3847087323665619},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.27584314346313477},{"id":"https://openalex.org/C141071460","wikidata":"https://www.wikidata.org/wiki/Q40821","display_name":"Surgery","level":1,"score":0.17536106705665588},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.1039571464061737},{"id":"https://openalex.org/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0}],"mesh":[],"locations_count":2,"locations":[{"id":"pmh:oai:repository.arizona.edu:10150/194461","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/10150/194461","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:69221584","doi":null,"is_oa":false,"landing_page_url":"http://arizona.openrepository.com/arizona/handle/10150/194461","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":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":0.9537000060081482}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":75,"referenced_works":["https://openalex.org/W18177144","https://openalex.org/W186066469","https://openalex.org/W194690262","https://openalex.org/W1964403663","https://openalex.org/W1967137702","https://openalex.org/W1970518491","https://openalex.org/W1976272864","https://openalex.org/W1981751778","https://openalex.org/W1981829134","https://openalex.org/W1982112425","https://openalex.org/W1986628703","https://openalex.org/W1989154537","https://openalex.org/W1994434576","https://openalex.org/W1995931353","https://openalex.org/W2000117884","https://openalex.org/W2004092329","https://openalex.org/W2009340695","https://openalex.org/W2012234394","https://openalex.org/W2013445382","https://openalex.org/W2017145132","https://openalex.org/W2017381760","https://openalex.org/W2018665218","https://openalex.org/W2020482464","https://openalex.org/W2021770425","https://openalex.org/W2022699301","https://openalex.org/W2023951325","https://openalex.org/W2024691130","https://openalex.org/W2032038760","https://openalex.org/W2034735276","https://openalex.org/W2045958759","https://openalex.org/W2046404154","https://openalex.org/W2050612518","https://openalex.org/W2054785035","https://openalex.org/W2055493706","https://openalex.org/W2058878928","https://openalex.org/W2059665611","https://openalex.org/W2060487397","https://openalex.org/W2062154306","https://openalex.org/W2062738076","https://openalex.org/W2063741346","https://openalex.org/W2072373777","https://openalex.org/W2078325119","https://openalex.org/W2078342068","https://openalex.org/W2079013972","https://openalex.org/W2080163073","https://openalex.org/W2081020039","https://openalex.org/W2081342289","https://openalex.org/W2082922740","https://openalex.org/W2083107318","https://openalex.org/W2091465977","https://openalex.org/W2093097951","https://openalex.org/W2099854011","https://openalex.org/W2103429657","https://openalex.org/W2109477435","https://openalex.org/W2123828605","https://openalex.org/W2124676116","https://openalex.org/W2133903392","https://openalex.org/W2148182889","https://openalex.org/W2160055275","https://openalex.org/W2161621582","https://openalex.org/W2163799723","https://openalex.org/W2164145691","https://openalex.org/W2171744648","https://openalex.org/W2180025105","https://openalex.org/W2236648871","https://openalex.org/W2319392026","https://openalex.org/W2325397505","https://openalex.org/W2328497994","https://openalex.org/W2329395632","https://openalex.org/W2406704162","https://openalex.org/W2409441056","https://openalex.org/W2413377890","https://openalex.org/W2989676220","https://openalex.org/W2999603189","https://openalex.org/W3127605827"],"related_works":["https://openalex.org/W1982112425","https://openalex.org/W2590191054","https://openalex.org/W149133153","https://openalex.org/W3009634371","https://openalex.org/W11159211","https://openalex.org/W2106800598","https://openalex.org/W2000111120","https://openalex.org/W2012458640","https://openalex.org/W2314900040","https://openalex.org/W7099964098"],"abstract_inverted_index":{"Blood":[0],"and":[1,63,68,165,187,229,249,301],"marrow":[2,230],"transplantation":[3],"(BMT)":[4],"has":[5],"become":[6],"an":[7,58,141,171,321],"increasingly":[8],"acceptable":[9],"treatment":[10,299],"for":[11,20,90,104,166,221,263,323],"children":[12,160,223,264],"with":[13,29,128,192],"life":[14,98],"threatening":[15],"malignant":[16],"diseases.":[17],"Survival":[18],"rates":[19],"transplant":[21],"recipients":[22],"vary":[23],"from":[24,31,109,255],"23%":[25],"to":[26,45,49,82,96,209,216,241,279,286,302,319],"63%.":[27],"Children":[28],"complications":[30],"BMT,":[32],"typically":[33,55],"die":[34,50],"in":[35,57,100,338],"the":[36,66,84,110,129,132,168,204,211,218,281,289,297,333],"hospital":[37],"after":[38],"a":[39,47,51,181,193,312,328],"prolonged":[40],"stay.":[41],"The":[42,149],"parental":[43,87,201,284],"decision":[44,88,220],"allow":[46],"child":[48],"natural":[52],"death":[53],"is":[54],"made":[56,170],"aura":[59],"of":[60,70,78,86,117,134,156,159,190,196,200,214,235,251,283,291,332],"emotional":[61],"duress":[62],"bewilderment":[64],"at":[65],"complexity":[67],"volume":[69],"new":[71],"information":[72],"that":[73,113,122,131,183,206,275,325],"must":[74],"be":[75,138,273,316],"assimilated.The":[76],"purpose":[77],"this":[79,105,256],"study":[80,106,257],"was":[81,107,147,175,203],"describe":[83],"process":[85,205,233,336],"making":[89],"Do":[91],"Not":[92],"Resuscitate":[93],"(DNR)":[94],"or":[95],"withdraw":[97],"support":[99,280],"pediatric":[101,269],"BMT.The":[102],"framework":[103],"developed":[108,274],"author's":[111],"epistemology":[112],"blends":[114],"neo-modernism":[115],"(recognition":[116],"individual":[118],"uniqueness":[119],"yet":[120],"acknowledgment":[121],"certain":[123],"underlying":[124],"universal":[125],"principals":[126],"exist)":[127],"idea":[130],"nature":[133],"all":[135],"things":[136],"may":[137,272],"viewed":[139],"as":[140,293,305],"ongoing,":[142],"self-constructing":[143],"process.Grounded":[144],"theory":[145,197],"methodology":[146],"used.":[148],"sample":[150],"(determined":[151],"through":[152,296],"theoretical":[153,188],"sampling)":[154],"consisted":[155,234],"seven":[157],"parents":[158,207,292,304,314],"who":[161,224,261,265],"died":[162],"following":[163,227,268],"BMT":[164,298],"whom":[167],"parent":[169],"end-of-life":[172,219],"decision.":[173],"Data":[174],"analyzed":[176],"using":[177],"constant":[178],"comparative":[179],"analysis,":[180],"method":[182],"combines":[184],"both":[185],"substantive":[186],"coding":[189],"data":[191],"qualitative":[194],"style":[195],"development.The":[198],"realization":[199],"knowing":[202],"used":[208],"navigate":[210],"human":[212],"problem":[213],"having":[215],"make":[217],"their":[222,308,339],"were":[225],"dying":[226,267],"blood":[228],"transplantation.":[231],"This":[232],"four":[236],"categories:":[237],"Developing":[238],"Trust,":[239],"Committed":[240],"Seeing":[242],"It":[243],"Through,":[244],"Facing":[245],"My":[246],"Worst":[247],"Fear,":[248],"Acceptance":[250],"Self.The":[252],"knowledge":[253],"gained":[254],"will":[258,276,326],"inform":[259],"nurses":[260,278],"care":[262],"are":[266],"BMT.":[270],"Strategies":[271],"assist":[277,303],"development":[282],"trust,":[285],"help":[287],"sustain":[288],"commitment":[290],"they":[294,306],"move":[295],"journey,":[300],"face":[307],"worst":[309],"fear.":[310],"As":[311],"result,":[313],"should":[315],"better":[317],"able":[318],"achieve":[320],"acceptance":[322],"themselves":[324],"facilitate":[327],"more":[329],"satisfying":[330],"experience":[331],"ever":[334],"changing":[335],"occurring":[337],"own":[340],"lives.":[341]},"counts_by_year":[{"year":2020,"cited_by_count":1},{"year":2014,"cited_by_count":1}],"updated_date":"2026-09-21T07:43:02.447757","created_date":"2016-06-24T00:00:00"}
