{"id":"https://openalex.org/W4396239555","doi":"https://doi.org/10.1145/3653704","title":"It's About the Journey - Capturing Stories of the Fluctuating Experiences of Youth Kidney Transplant Patients","display_name":"It's About the Journey - Capturing Stories of the Fluctuating Experiences of Youth Kidney Transplant Patients","publication_year":2024,"publication_date":"2024-04-17","ids":{"openalex":"https://openalex.org/W4396239555","doi":"https://doi.org/10.1145/3653704","pmid":"https://pubmed.ncbi.nlm.nih.gov/39950037"},"language":"en","primary_location":{"id":"doi:10.1145/3653704","is_oa":true,"landing_page_url":"https://doi.org/10.1145/3653704","pdf_url":null,"source":{"id":"https://openalex.org/S4210183893","display_name":"Proceedings of the ACM on Human-Computer Interaction","issn_l":"2573-0142","issn":["2573-0142"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319798","host_organization_name":"Association for Computing Machinery","host_organization_lineage":["https://openalex.org/P4310319798"],"host_organization_lineage_names":["Association for Computing Machinery"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the ACM on Human-Computer Interaction","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://doi.org/10.1145/3653704","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5014084578","display_name":"Julia C. Dunbar","orcid":"https://orcid.org/0000-0003-1684-8463"},"institutions":[{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Julia C. Dunbar","raw_affiliation_strings":["Information School, University of Washington, Seattle, WA, USA"],"affiliations":[{"raw_affiliation_string":"Information School, University of Washington, Seattle, WA, USA","institution_ids":["https://openalex.org/I201448701"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5064800403","display_name":"Wanda Pratt","orcid":"https://orcid.org/0000-0003-4035-0198"},"institutions":[{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Wanda Pratt","raw_affiliation_strings":["Information School, University of Washington, Seattle, WA, USA"],"affiliations":[{"raw_affiliation_string":"Information School, University of Washington, Seattle, WA, USA","institution_ids":["https://openalex.org/I201448701"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5055818474","display_name":"Emily Bascom","orcid":"https://orcid.org/0000-0002-5140-6567"},"institutions":[{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Emily Bascom","raw_affiliation_strings":["Human Centered Design and Engineering, University of Washington, Seattle, WA, USA"],"affiliations":[{"raw_affiliation_string":"Human Centered Design and Engineering, University of Washington, Seattle, WA, USA","institution_ids":["https://openalex.org/I201448701"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5064877219","display_name":"C Currier","orcid":"https://orcid.org/0000-0001-7095-6305"},"institutions":[{"id":"https://openalex.org/I72951846","display_name":"Washington State University","ror":"https://ror.org/05dk0ce17","country_code":"US","type":"education","lineage":["https://openalex.org/I72951846"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Cara Currier","raw_affiliation_strings":["Elson S Floyd School of Medicine, Washington State University, Seattle, WA, USA"],"affiliations":[{"raw_affiliation_string":"Elson S Floyd School of Medicine, Washington State University, Seattle, WA, USA","institution_ids":["https://openalex.org/I72951846"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5022975005","display_name":"Joseph William Tan Garcia","orcid":"https://orcid.org/0000-0003-1280-3719"},"institutions":[{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Joseph William Tan Garcia","raw_affiliation_strings":["Information School, University of Washington, Seattle, WA, USA"],"affiliations":[{"raw_affiliation_string":"Information School, University of Washington, Seattle, WA, USA","institution_ids":["https://openalex.org/I201448701"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5011996440","display_name":"Jodi M. Smith","orcid":"https://orcid.org/0000-0002-0365-4267"},"institutions":[{"id":"https://openalex.org/I1295499534","display_name":"Seattle Children's Hospital","ror":"https://ror.org/01njes783","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1295499534"]},{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jodi Smith","raw_affiliation_strings":["Division of Nephrology, Seattle Children's Hospital & School of Medicine, Department of Pediatrics, University of Washington, seattle, WA, USA"],"affiliations":[{"raw_affiliation_string":"Division of Nephrology, Seattle Children's Hospital & School of Medicine, Department of Pediatrics, University of Washington, seattle, WA, USA","institution_ids":["https://openalex.org/I1295499534","https://openalex.org/I201448701"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5082803912","display_name":"Jaime Snyder","orcid":null},"institutions":[{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jaime Snyder","raw_affiliation_strings":["Information School, University of Washington, Seattle, WA, USA"],"affiliations":[{"raw_affiliation_string":"Information School, University of Washington, Seattle, WA, USA","institution_ids":["https://openalex.org/I201448701"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5009072221","display_name":"Ari H. Pollack","orcid":"https://orcid.org/0000-0002-5850-838X"},"institutions":[{"id":"https://openalex.org/I1295499534","display_name":"Seattle Children's Hospital","ror":"https://ror.org/01njes783","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1295499534"]},{"id":"https://openalex.org/I201448701","display_name":"University of Washington","ror":"https://ror.org/00cvxb145","country_code":"US","type":"education","lineage":["https://openalex.org/I201448701"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Ari H Pollack","raw_affiliation_strings":["Division of Nephrology, Seattle Children's Hospital & School of Medicine, Department of Pediatrics, University of Washington, Seattle, WA, USA"],"affiliations":[{"raw_affiliation_string":"Division of Nephrology, Seattle Children's Hospital & School of Medicine, Department of Pediatrics, University of Washington, Seattle, WA, USA","institution_ids":["https://openalex.org/I1295499534","https://openalex.org/I201448701"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":8,"corresponding_author_ids":["https://openalex.org/A5014084578"],"corresponding_institution_ids":["https://openalex.org/I201448701"],"apc_list":null,"apc_paid":null,"fwci":1.6851,"has_fulltext":true,"cited_by_count":2,"citation_normalized_percentile":{"value":0.83390216,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":98,"max":99},"biblio":{"volume":"8","issue":"CSCW1","first_page":"1","last_page":"26"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.9995999932289124,"subfield":{"id":"https://openalex.org/subfields/3616","display_name":"Speech and Hearing"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.9995999932289124,"subfield":{"id":"https://openalex.org/subfields/3616","display_name":"Speech and Hearing"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.995199978351593,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11141","display_name":"Childhood Cancer Survivors' Quality of Life","score":0.9951000213623047,"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/kidney-transplant","display_name":"Kidney transplant","score":0.6656374931335449},{"id":"https://openalex.org/keywords/psychology","display_name":"Psychology","score":0.4295230805873871},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.42088037729263306},{"id":"https://openalex.org/keywords/nursing","display_name":"Nursing","score":0.3455082178115845},{"id":"https://openalex.org/keywords/kidney-transplantation","display_name":"Kidney transplantation","score":0.3226779103279114},{"id":"https://openalex.org/keywords/transplantation","display_name":"Transplantation","score":0.2676509618759155}],"concepts":[{"id":"https://openalex.org/C2994498544","wikidata":"https://www.wikidata.org/wiki/Q740909","display_name":"Kidney transplant","level":4,"score":0.6656374931335449},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.4295230805873871},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.42088037729263306},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.3455082178115845},{"id":"https://openalex.org/C2780303639","wikidata":"https://www.wikidata.org/wiki/Q740909","display_name":"Kidney transplantation","level":3,"score":0.3226779103279114},{"id":"https://openalex.org/C2911091166","wikidata":"https://www.wikidata.org/wiki/Q106419912","display_name":"Transplantation","level":2,"score":0.2676509618759155},{"id":"https://openalex.org/C141071460","wikidata":"https://www.wikidata.org/wiki/Q40821","display_name":"Surgery","level":1,"score":0.0}],"mesh":[],"locations_count":3,"locations":[{"id":"doi:10.1145/3653704","is_oa":true,"landing_page_url":"https://doi.org/10.1145/3653704","pdf_url":null,"source":{"id":"https://openalex.org/S4210183893","display_name":"Proceedings of the ACM on Human-Computer Interaction","issn_l":"2573-0142","issn":["2573-0142"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319798","host_organization_name":"Association for Computing Machinery","host_organization_lineage":["https://openalex.org/P4310319798"],"host_organization_lineage_names":["Association for Computing Machinery"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the ACM on Human-Computer Interaction","raw_type":"journal-article"},{"id":"pmid:39950037","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/39950037","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,"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":"Proceedings of the ACM on human-computer interaction","raw_type":null},{"id":"pmh:oai:pubmedcentral.nih.gov:11824542","is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/11824542","pdf_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC11824542/pdf/nihms-2012135.pdf","source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"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":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Proc ACM Hum Comput Interact","raw_type":"Text"}],"best_oa_location":{"id":"doi:10.1145/3653704","is_oa":true,"landing_page_url":"https://doi.org/10.1145/3653704","pdf_url":null,"source":{"id":"https://openalex.org/S4210183893","display_name":"Proceedings of the ACM on Human-Computer Interaction","issn_l":"2573-0142","issn":["2573-0142"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319798","host_organization_name":"Association for Computing Machinery","host_organization_lineage":["https://openalex.org/P4310319798"],"host_organization_lineage_names":["Association for Computing Machinery"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the ACM on Human-Computer Interaction","raw_type":"journal-article"},"sustainable_development_goals":[],"awards":[{"id":"https://openalex.org/G197008112","display_name":null,"funder_award_id":"NIDDK","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"},{"id":"https://openalex.org/G2102057009","display_name":null,"funder_award_id":"UL1 TR00231","funder_id":"https://openalex.org/F4320337472","funder_display_name":"National Center for Advancing Translational Sciences"},{"id":"https://openalex.org/G2789588635","display_name":null,"funder_award_id":"NCATS","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"},{"id":"https://openalex.org/G2853723001","display_name":null,"funder_award_id":"UL1 TR002319","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"},{"id":"https://openalex.org/G4936061353","display_name":null,"funder_award_id":"K23 DK117017","funder_id":"https://openalex.org/F4320337357","funder_display_name":"National Institute of Diabetes and Digestive and Kidney Diseases"},{"id":"https://openalex.org/G5558081089","display_name":null,"funder_award_id":"UL1 TR002","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"},{"id":"https://openalex.org/G6299817911","display_name":null,"funder_award_id":"NCATS/NIH","funder_id":"https://openalex.org/F4320337472","funder_display_name":"National Center for Advancing Translational Sciences"},{"id":"https://openalex.org/G6608708170","display_name":null,"funder_award_id":"UL1 TR002319","funder_id":"https://openalex.org/F4320337357","funder_display_name":"National Institute of Diabetes and Digestive and Kidney Diseases"},{"id":"https://openalex.org/G7155885298","display_name":null,"funder_award_id":"UL1 TR002319","funder_id":"https://openalex.org/F4320337472","funder_display_name":"National Center for Advancing Translational Sciences"},{"id":"https://openalex.org/G7368310723","display_name":null,"funder_award_id":"K23 DK117017","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"}],"funders":[{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"},{"id":"https://openalex.org/F4320337357","display_name":"National Institute of Diabetes and Digestive and Kidney Diseases","ror":"https://ror.org/00adh9b73"},{"id":"https://openalex.org/F4320337472","display_name":"National Center for Advancing Translational Sciences","ror":"https://ror.org/04pw6fb54"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":87,"referenced_works":["https://openalex.org/W1500842519","https://openalex.org/W1550773561","https://openalex.org/W1790404736","https://openalex.org/W1807541530","https://openalex.org/W1965051049","https://openalex.org/W1968284122","https://openalex.org/W1968864209","https://openalex.org/W1969052573","https://openalex.org/W1970024789","https://openalex.org/W1979682439","https://openalex.org/W1983481232","https://openalex.org/W1988973223","https://openalex.org/W1989943638","https://openalex.org/W2003676674","https://openalex.org/W2008133916","https://openalex.org/W2011132834","https://openalex.org/W2033620665","https://openalex.org/W2034781998","https://openalex.org/W2035849721","https://openalex.org/W2040303941","https://openalex.org/W2041530154","https://openalex.org/W2067343711","https://openalex.org/W2068797950","https://openalex.org/W2071427434","https://openalex.org/W2073965697","https://openalex.org/W2081446842","https://openalex.org/W2087276125","https://openalex.org/W2093274439","https://openalex.org/W2109572449","https://openalex.org/W2111504995","https://openalex.org/W2113524592","https://openalex.org/W2118716638","https://openalex.org/W2120169450","https://openalex.org/W2125915116","https://openalex.org/W2139432071","https://openalex.org/W2141775465","https://openalex.org/W2146120111","https://openalex.org/W2149868499","https://openalex.org/W2151926604","https://openalex.org/W2151962172","https://openalex.org/W2154563792","https://openalex.org/W2290883466","https://openalex.org/W2408196857","https://openalex.org/W2433156237","https://openalex.org/W2577364583","https://openalex.org/W2610752890","https://openalex.org/W2610904967","https://openalex.org/W2611210575","https://openalex.org/W2789077268","https://openalex.org/W2794964031","https://openalex.org/W2795391948","https://openalex.org/W2808805078","https://openalex.org/W2810131068","https://openalex.org/W2893906191","https://openalex.org/W2898671543","https://openalex.org/W2911147421","https://openalex.org/W2911341268","https://openalex.org/W2921234202","https://openalex.org/W2940482281","https://openalex.org/W2940664027","https://openalex.org/W2941802617","https://openalex.org/W2941816561","https://openalex.org/W2969998196","https://openalex.org/W2972375517","https://openalex.org/W2974101615","https://openalex.org/W3003565600","https://openalex.org/W3003728400","https://openalex.org/W3003908544","https://openalex.org/W3003926097","https://openalex.org/W3028851948","https://openalex.org/W3030651886","https://openalex.org/W3036406130","https://openalex.org/W3041065505","https://openalex.org/W3047236717","https://openalex.org/W3093085799","https://openalex.org/W3139922152","https://openalex.org/W3159028103","https://openalex.org/W3159719302","https://openalex.org/W3161658492","https://openalex.org/W4206262096","https://openalex.org/W4210371092","https://openalex.org/W4225095655","https://openalex.org/W4230583973","https://openalex.org/W4286433245","https://openalex.org/W4308623235","https://openalex.org/W4309619908","https://openalex.org/W6727413832"],"related_works":["https://openalex.org/W4391375266","https://openalex.org/W2899084033","https://openalex.org/W2748952813","https://openalex.org/W3031052312","https://openalex.org/W4389568370","https://openalex.org/W3032375762","https://openalex.org/W1995515455","https://openalex.org/W2961162011","https://openalex.org/W3154551543","https://openalex.org/W2954953365"],"abstract_inverted_index":{"Youth":[0,125],"who":[1],"undergo":[2],"a":[3,8,95,147],"kidney":[4,50],"transplant":[5,51,59,72],"can":[6],"experience":[7],"fluctuation":[9],"of":[10,70,94,101,136,163],"successes":[11],"and":[12,36,53,114,122,166],"challenges":[13],"throughout":[14],"their":[15,22,30,34,41,58,71,83,115,137,141,151,164],"chronic":[16,106,127,152],"illness":[17,153],"journey.":[18],"Designing":[19,108],"to":[20,27,39,43,56,77,97,117,131,139,149,159],"capture":[21,150],"journey":[23,60,73],"could":[24,111,156],"help":[25,112],"youth":[26,49,104,113],"reflect":[28],"on":[29,33,86],"experiences,":[31],"collaborate":[32,168],"care,":[35],"be":[37],"empowered":[38],"live":[40],"lives":[42,138,165],"the":[44,92,99],"fullest.":[45],"We":[46,62],"interviewed":[47],"11":[48],"patients":[52],"12":[54],"caregivers":[55,116],"elicit":[57],"experiences.":[61,84],"found":[63],"that":[64],"probing":[65],"participants":[66],"about":[67,82],"specific":[68],"parts":[69],"gave":[74],"them":[75,146,158],"structure":[76],"tell":[78],"us":[79],"rich":[80],"stories":[81,102],"Based":[85],"our":[87],"findings,":[88],"we":[89],"discuss":[90],"informing":[91],"design":[93],"tool":[96,110],"support":[98,120],"capturing":[100],"for":[103],"with":[105,126,169],"illnesses.":[107],"such":[109],"identify":[118],"barriers,":[119],"reflection,":[121],"promote":[123],"self-efficacy.":[124],"illnesses":[128],"already":[129],"have":[130],"change":[132],"so":[133],"many":[134],"aspects":[135],"accommodate":[140],"illness,":[142],"however,":[143],"by":[144],"giving":[145],"platform":[148],"journey,":[154],"it":[155],"encourage":[157],"take":[160],"more":[161],"control":[162],"better":[167],"others.":[170]},"counts_by_year":[{"year":2026,"cited_by_count":2}],"updated_date":"2026-04-14T08:04:32.555800","created_date":"2025-10-10T00:00:00"}