{"id":"https://openalex.org/W2014484256","doi":"https://doi.org/10.4236/ojn.2015.54033","title":"Reflections on Health of Young Adults with Spina Bifida: The Contradictory Path towards Well-Being in Daily Life","display_name":"Reflections on Health of Young Adults with Spina Bifida: The Contradictory Path towards Well-Being in Daily Life","publication_year":2015,"publication_date":"2015-01-01","ids":{"openalex":"https://openalex.org/W2014484256","doi":"https://doi.org/10.4236/ojn.2015.54033","mag":"2014484256"},"language":"en","primary_location":{"id":"doi:10.4236/ojn.2015.54033","doi":"https://doi.org/10.4236/ojn.2015.54033","is_oa":true,"landing_page_url":"https://doi.org/10.4236/ojn.2015.54033","pdf_url":"http://www.scirp.org/journal/PaperDownload.aspx?paperID=55246","source":{"id":"https://openalex.org/S2764558556","display_name":"Open Journal of Nursing","issn_l":"2162-5336","issn":["2162-5336","2162-5344"],"is_oa":true,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core"],"host_organization":"https://openalex.org/P4310320480","host_organization_name":"Scientific Research Publishing","host_organization_lineage":["https://openalex.org/P4310320480"],"host_organization_lineage_names":["Scientific Research Publishing"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Open Journal of Nursing","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref"],"open_access":{"is_oa":true,"oa_status":"diamond","oa_url":"http://www.scirp.org/journal/PaperDownload.aspx?paperID=55246","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5024511490","display_name":"Hanna Gabrielsson","orcid":"https://orcid.org/0000-0002-7813-3351","observed_orcids":["https://orcid.org/0000-0002-7813-3351"]},"institutions":[{"id":"https://openalex.org/I75511499","display_name":"Marie Cederschi\u00f6ld University","ror":"https://ror.org/00ajvsd91","country_code":"SE","type":"education","lineage":["https://openalex.org/I75511499"]}],"countries":["SE"],"is_corresponding":true,"raw_author_name":"Hanna Gabrielsson","raw_affiliation_strings":["Department of Health Care Sciences , Ersta Sk\u00f6ndal University College , Stockholm , Sweden","Spinalis Clinic , Rehab Station Stockholm , Stockholm , Sweden","Ersta Sk\u00f6ndal Br\u00e4cke University College"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Health Care Sciences , Ersta Sk\u00f6ndal University College , Stockholm , Sweden","institution_ids":["https://openalex.org/I75511499"]},{"raw_affiliation_string":"Spinalis Clinic , Rehab Station Stockholm , Stockholm , Sweden","institution_ids":[]},{"raw_affiliation_string":"Ersta Sk\u00f6ndal Br\u00e4cke University College","institution_ids":["https://openalex.org/I75511499"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5102385275","display_name":"Malin Karlberg-Traav","orcid":"https://orcid.org/0000-0002-4531-0454","observed_orcids":["https://orcid.org/0000-0002-4531-0454"]},"institutions":[{"id":"https://openalex.org/I4210129463","display_name":"\u00d6rebro University Hospital","ror":"https://ror.org/02m62qy71","country_code":"SE","type":"healthcare","lineage":["https://openalex.org/I4210129463"]},{"id":"https://openalex.org/I75511499","display_name":"Marie Cederschi\u00f6ld University","ror":"https://ror.org/00ajvsd91","country_code":"SE","type":"education","lineage":["https://openalex.org/I75511499"]}],"countries":["SE"],"is_corresponding":false,"raw_author_name":"Malin Karlberg Traav","raw_affiliation_strings":["Department of Health Care Sciences, Ersta Sk\u00f6ndal University College, Stockholm, Sweden","ENT Department, \u00d6rebro University Hospital, \u00d6rebro, Sweden"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Health Care Sciences, Ersta Sk\u00f6ndal University College, Stockholm, Sweden","institution_ids":["https://openalex.org/I75511499"]},{"raw_affiliation_string":"ENT Department, \u00d6rebro University Hospital, \u00d6rebro, Sweden","institution_ids":["https://openalex.org/I4210129463"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5015978450","display_name":"Agneta Cronqvist","orcid":"https://orcid.org/0000-0002-4523-0462","observed_orcids":["https://orcid.org/0000-0002-4523-0462"]},"institutions":[{"id":"https://openalex.org/I75511499","display_name":"Marie Cederschi\u00f6ld University","ror":"https://ror.org/00ajvsd91","country_code":"SE","type":"education","lineage":["https://openalex.org/I75511499"]}],"countries":["SE"],"is_corresponding":false,"raw_author_name":"Agneta Cronqvist","raw_affiliation_strings":["Department of Health Care Sciences, Ersta Sk\u00f6ndal University College, Stockholm, Sweden"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Health Care Sciences, Ersta Sk\u00f6ndal University College, Stockholm, Sweden","institution_ids":["https://openalex.org/I75511499"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":2,"corresponding_author_ids":["https://openalex.org/A5024511490"],"corresponding_institution_ids":["https://openalex.org/I75511499"],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":true,"cited_by_count":5,"citation_normalized_percentile":{"value":0.08084162,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":96},"biblio":{"volume":"05","issue":"04","first_page":"303","last_page":"312"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11833","display_name":"Spinal Dysraphism and Malformations","score":0.8241999745368958,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"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/T11833","display_name":"Spinal Dysraphism and Malformations","score":0.8241999745368958,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"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/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.042899999767541885,"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/T10925","display_name":"Spinal Cord Injury Research","score":0.03709999844431877,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"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/spina-bifida","display_name":"spina bifida","score":0.9990000128746033},{"id":"https://openalex.org/keywords/young-adults","display_name":"young adults","score":0.9779999852180481},{"id":"https://openalex.org/keywords/well-being","display_name":"well-being","score":0.9520000219345093},{"id":"https://openalex.org/keywords/independence","display_name":"independence","score":0.7070000171661377},{"id":"https://openalex.org/keywords/lifeworld-theory","display_name":"lifeworld theory","score":0.6930000185966492},{"id":"https://openalex.org/keywords/disability","display_name":"disability","score":0.5590000152587891},{"id":"https://openalex.org/keywords/everyday-life","display_name":"everyday life","score":0.6579999923706055},{"id":"https://openalex.org/keywords/social-support","display_name":"social support","score":0.5440000295639038},{"id":"https://openalex.org/keywords/support-programs","display_name":"support programs","score":0.5600000023841858}],"concepts":[{"id":"https://openalex.org/C2780188709","wikidata":"https://www.wikidata.org/wiki/Q1502991","display_name":"Lifeworld","level":2,"score":0.9659052491188049},{"id":"https://openalex.org/C122980154","wikidata":"https://www.wikidata.org/wiki/Q205555","display_name":"Feeling","level":2,"score":0.6828811168670654},{"id":"https://openalex.org/C12713177","wikidata":"https://www.wikidata.org/wiki/Q1900281","display_name":"Perspective (graphical)","level":2,"score":0.5882189273834229},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.548609733581543},{"id":"https://openalex.org/C2776420229","wikidata":"https://www.wikidata.org/wiki/Q7981051","display_name":"Well-being","level":2,"score":0.5364072918891907},{"id":"https://openalex.org/C138496976","wikidata":"https://www.wikidata.org/wiki/Q175002","display_name":"Developmental psychology","level":1,"score":0.4738467335700989},{"id":"https://openalex.org/C2778478650","wikidata":"https://www.wikidata.org/wiki/Q844717","display_name":"Spina bifida","level":2,"score":0.4728795886039734},{"id":"https://openalex.org/C33566652","wikidata":"https://www.wikidata.org/wiki/Q1065927","display_name":"Theme (computing)","level":2,"score":0.4434784948825836},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.34102892875671387},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.29526665806770325},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.21855679154396057},{"id":"https://openalex.org/C542102704","wikidata":"https://www.wikidata.org/wiki/Q183257","display_name":"Psychotherapist","level":1,"score":0.20338040590286255},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.16914573311805725},{"id":"https://openalex.org/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0},{"id":"https://openalex.org/C111919701","wikidata":"https://www.wikidata.org/wiki/Q9135","display_name":"Operating system","level":1,"score":0.0},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.0},{"id":"https://openalex.org/C154945302","wikidata":"https://www.wikidata.org/wiki/Q11660","display_name":"Artificial intelligence","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.4236/ojn.2015.54033","doi":"https://doi.org/10.4236/ojn.2015.54033","is_oa":true,"landing_page_url":"https://doi.org/10.4236/ojn.2015.54033","pdf_url":"http://www.scirp.org/journal/PaperDownload.aspx?paperID=55246","source":{"id":"https://openalex.org/S2764558556","display_name":"Open Journal of Nursing","issn_l":"2162-5336","issn":["2162-5336","2162-5344"],"is_oa":true,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core"],"host_organization":"https://openalex.org/P4310320480","host_organization_name":"Scientific Research Publishing","host_organization_lineage":["https://openalex.org/P4310320480"],"host_organization_lineage_names":["Scientific Research Publishing"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Open Journal of Nursing","raw_type":"journal-article"}],"best_oa_location":{"id":"doi:10.4236/ojn.2015.54033","doi":"https://doi.org/10.4236/ojn.2015.54033","is_oa":true,"landing_page_url":"https://doi.org/10.4236/ojn.2015.54033","pdf_url":"http://www.scirp.org/journal/PaperDownload.aspx?paperID=55246","source":{"id":"https://openalex.org/S2764558556","display_name":"Open Journal of Nursing","issn_l":"2162-5336","issn":["2162-5336","2162-5344"],"is_oa":true,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core"],"host_organization":"https://openalex.org/P4310320480","host_organization_name":"Scientific Research Publishing","host_organization_lineage":["https://openalex.org/P4310320480"],"host_organization_lineage_names":["Scientific Research Publishing"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Open Journal of Nursing","raw_type":"journal-article"},"sustainable_development_goals":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":1.0}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W2014484256.pdf","grobid_xml":"https://content.openalex.org/works/W2014484256.grobid-xml"},"referenced_works_count":30,"referenced_works":["https://openalex.org/W107191064","https://openalex.org/W640643787","https://openalex.org/W1501339494","https://openalex.org/W1563617400","https://openalex.org/W1593065131","https://openalex.org/W1610761234","https://openalex.org/W1906838633","https://openalex.org/W1924943583","https://openalex.org/W1992581222","https://openalex.org/W2002636725","https://openalex.org/W2007893775","https://openalex.org/W2021729011","https://openalex.org/W2027859420","https://openalex.org/W2028489954","https://openalex.org/W2033629843","https://openalex.org/W2042705472","https://openalex.org/W2049977425","https://openalex.org/W2057249649","https://openalex.org/W2082838879","https://openalex.org/W2085127713","https://openalex.org/W2086767322","https://openalex.org/W2111897797","https://openalex.org/W2113258667","https://openalex.org/W2116584288","https://openalex.org/W2120928716","https://openalex.org/W2129288170","https://openalex.org/W2141598197","https://openalex.org/W2159531958","https://openalex.org/W2162655078","https://openalex.org/W2402595903"],"related_works":["https://openalex.org/W2084787696","https://openalex.org/W3145767360","https://openalex.org/W2290339377","https://openalex.org/W2155460869","https://openalex.org/W2724674095","https://openalex.org/W2152521901","https://openalex.org/W2322989579","https://openalex.org/W2162655078","https://openalex.org/W7017097179","https://openalex.org/W7023940533"],"abstract_inverted_index":{"Background:":[0],"An":[1],"individual":[2,48,63,80],"with":[3,8,64,110,129,232],"SB":[4,111,233],"needs":[5,21,291],"to":[6,22,46,61,87,196,201,247,277,292],"deal":[7],"long":[9],"standing":[10,191],"illnesses":[11],"and":[12,39,145,157,174,182,217,238,240,269],"is":[13,29,52,59,90,138,252,271,288],"often":[14],"viewed":[15],"as":[16,43,165],"having":[17],"a":[18,113,125,235,244,267],"disability":[19],"that":[20,54,140,229,241,290],"be":[23,41,88,278,293],"compensated":[24],"for.":[25],"This":[26,119,286],"medical":[27,57,68],"condition":[28],"an":[30,44,62,79,130],"example":[31],"of":[32,34,95,104,116,220,253,259,264,280],"malfunction":[33],"the":[35,47,55,74,102,134,150,178,186,281],"body,":[36,188],"though":[37],"congenital,":[38],"could":[40],"seen":[42],"outside-perspective":[45],"human":[49],"being.":[50],"It":[51],"important":[53,272],"required":[56],"treatment":[58,69],"offered":[60],"SB,":[65],"but":[66],"such":[67],"alone":[70],"would":[71,212],"not":[72],"encompass":[73],"full":[75],"health":[76,237,274],"spectrum":[77],"for":[78,107,185,256,273,301],"in":[81,171,222,262],"this":[82,92,257],"specific":[83,93],"situation.":[84],"A":[85,218],"question":[86],"raised":[89],"how":[91],"group":[94,258],"individuals":[96],"experience":[97,103],"health.":[98,117],"Aim:":[99],"To":[100],"describe":[101],"daily":[105,172,223],"life":[106],"young":[108,230],"adults":[109,231],"through":[112,149],"theoretical":[114],"lens":[115],"Method:":[118],"qualitative":[120],"study":[121,227],"was":[122,163,175],"conducted":[123],"using":[124],"reflective":[126],"lifeworld":[127,135],"approach":[128],"interpretive":[131],"part.":[132],"In":[133],"theory":[136],"it":[137,211,270],"understood":[139],"all":[141],"our":[142],"doings,":[143],"feelings":[144],"thoughts":[146],"are":[147],"experienced":[148],"lifeworld.":[151],"The":[152,160,166,226],"interview":[153],"questions":[154],"were":[155],"open":[156],"non-standardised.":[158],"Findings:":[159],"main":[161],"theme":[162],"formulated":[164],"contradictory":[167,245],"path":[168,246],"towards":[169,249],"well-being":[170,239],"life,":[173],"constructed":[176],"on":[177,284],"sub-themes:":[179],"Not":[180],"understanding":[181],"taking":[183],"responsibility":[184],"lower":[187],"Having":[189],"people":[190,202],"behind":[192],"me\u2014not":[193],"being":[194],"allowed":[195],"grow":[197],"up":[198],"myself,":[199],"Compared":[200],"like":[203],"me,":[204],"I":[205,209],"usually":[206],"do":[207],"well,":[208],"thought":[210],"work":[213],"out":[214],"by":[215],"itself,":[216],"lack":[219],"structure":[221],"life.":[224],"Conclusion:":[225],"indicates":[228],"have":[234,243],"diminished":[236],"they":[242],"travel":[248],"independency":[250],"which":[251],"great":[254],"concern":[255],"individuals.":[260,303],"Differences":[261],"views":[263],"independence":[265],"constitute":[266],"problem":[268],"care":[275],"providers":[276],"aware":[279],"individuals\u2019":[282],"perspective":[283],"independence.":[285],"notion":[287],"something":[289],"taken":[294],"into":[295],"account":[296],"when":[297],"designing":[298],"support":[299],"programs":[300],"these":[302]},"counts_by_year":[{"year":2026,"cited_by_count":1},{"year":2025,"cited_by_count":1},{"year":2020,"cited_by_count":3}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2016-06-24T00:00:00"}
