{"id":"https://openalex.org/W4366550030","doi":"https://doi.org/10.1145/3544548.3581459","title":"Beyond the Bulging Binder: Family-Centered Design of a Digital Health Information Management System for Caregivers of Children Living with Health Complexity","display_name":"Beyond the Bulging Binder: Family-Centered Design of a Digital Health Information Management System for Caregivers of Children Living with Health Complexity","publication_year":2023,"publication_date":"2023-04-19","ids":{"openalex":"https://openalex.org/W4366550030","doi":"https://doi.org/10.1145/3544548.3581459"},"language":"en","primary_location":{"id":"doi:10.1145/3544548.3581459","is_oa":false,"landing_page_url":"https://doi.org/10.1145/3544548.3581459","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems","raw_type":"proceedings-article"},"type":"article","indexed_in":["crossref"],"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/A5006549345","display_name":"Katayoun Sepehri","orcid":"https://orcid.org/0000-0003-2961-5642"},"institutions":[{"id":"https://openalex.org/I141945490","display_name":"University of British Columbia","ror":"https://ror.org/03rmrcq20","country_code":"CA","type":"education","lineage":["https://openalex.org/I141945490"]}],"countries":["CA"],"is_corresponding":true,"raw_author_name":"Katayoun Sepehri","raw_affiliation_strings":["Computer Science/SPIN, University of British Columbia, Canada"],"affiliations":[{"raw_affiliation_string":"Computer Science/SPIN, University of British Columbia, Canada","institution_ids":["https://openalex.org/I141945490"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5076271550","display_name":"Liisa Holsti","orcid":null},"institutions":[{"id":"https://openalex.org/I141945490","display_name":"University of British Columbia","ror":"https://ror.org/03rmrcq20","country_code":"CA","type":"education","lineage":["https://openalex.org/I141945490"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"Liisa Holsti","raw_affiliation_strings":["Occupational Science &amp; Occupational Therapy, University of British Columbia, Canada"],"affiliations":[{"raw_affiliation_string":"Occupational Science &amp; Occupational Therapy, University of British Columbia, Canada","institution_ids":["https://openalex.org/I141945490"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5008850206","display_name":"Sara Niasati","orcid":"https://orcid.org/0000-0001-8958-5479"},"institutions":[{"id":"https://openalex.org/I141945490","display_name":"University of British Columbia","ror":"https://ror.org/03rmrcq20","country_code":"CA","type":"education","lineage":["https://openalex.org/I141945490"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"Sara Niasati","raw_affiliation_strings":["University of British Columbia, Canada"],"affiliations":[{"raw_affiliation_string":"University of British Columbia, Canada","institution_ids":["https://openalex.org/I141945490"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5065452663","display_name":"Vita Chan","orcid":"https://orcid.org/0000-0002-7470-8453"},"institutions":[{"id":"https://openalex.org/I141945490","display_name":"University of British Columbia","ror":"https://ror.org/03rmrcq20","country_code":"CA","type":"education","lineage":["https://openalex.org/I141945490"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"Vita Chan","raw_affiliation_strings":["University of British Columbia, Canada"],"affiliations":[{"raw_affiliation_string":"University of British Columbia, Canada","institution_ids":["https://openalex.org/I141945490"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5061277210","display_name":"Karon E. MacLean","orcid":"https://orcid.org/0000-0003-2969-4627"},"institutions":[{"id":"https://openalex.org/I141945490","display_name":"University of British Columbia","ror":"https://ror.org/03rmrcq20","country_code":"CA","type":"education","lineage":["https://openalex.org/I141945490"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"Karon E Maclean","raw_affiliation_strings":["Computer Science/SPIN, University of British Columbia, Canada"],"affiliations":[{"raw_affiliation_string":"Computer Science/SPIN, University of British Columbia, Canada","institution_ids":["https://openalex.org/I141945490"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":["https://openalex.org/A5006549345"],"corresponding_institution_ids":["https://openalex.org/I141945490"],"apc_list":null,"apc_paid":null,"fwci":8.5877,"has_fulltext":false,"cited_by_count":20,"citation_normalized_percentile":{"value":0.9792619,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":90,"max":100},"biblio":{"volume":null,"issue":null,"first_page":"1","last_page":"19"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11446","display_name":"Mobile Health and mHealth Applications","score":0.9912999868392944,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"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/T11446","display_name":"Mobile Health and mHealth Applications","score":0.9912999868392944,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"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/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.9787999987602234,"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":0.9598000049591064,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/documentation","display_name":"Documentation","score":0.6401329040527344},{"id":"https://openalex.org/keywords/stakeholder","display_name":"Stakeholder","score":0.5716255307197571},{"id":"https://openalex.org/keywords/fidelity","display_name":"Fidelity","score":0.5189608931541443},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.5085722208023071},{"id":"https://openalex.org/keywords/set","display_name":"Set (abstract data type)","score":0.4756471812725067},{"id":"https://openalex.org/keywords/process","display_name":"Process (computing)","score":0.4753786623477936},{"id":"https://openalex.org/keywords/family-caregivers","display_name":"Family caregivers","score":0.4509838819503784},{"id":"https://openalex.org/keywords/information-management","display_name":"Information management","score":0.42533016204833984},{"id":"https://openalex.org/keywords/interface","display_name":"Interface (matter)","score":0.4228227734565735},{"id":"https://openalex.org/keywords/process-management","display_name":"Process management","score":0.4001792371273041},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.383788138628006},{"id":"https://openalex.org/keywords/knowledge-management","display_name":"Knowledge management","score":0.3830578923225403},{"id":"https://openalex.org/keywords/internet-privacy","display_name":"Internet privacy","score":0.3815431296825409},{"id":"https://openalex.org/keywords/nursing","display_name":"Nursing","score":0.35843440890312195},{"id":"https://openalex.org/keywords/human\u2013computer-interaction","display_name":"Human\u2013computer interaction","score":0.33519378304481506},{"id":"https://openalex.org/keywords/business","display_name":"Business","score":0.3214878737926483},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.27273696660995483},{"id":"https://openalex.org/keywords/public-relations","display_name":"Public relations","score":0.2272493839263916},{"id":"https://openalex.org/keywords/telecommunications","display_name":"Telecommunications","score":0.13069921731948853}],"concepts":[{"id":"https://openalex.org/C56666940","wikidata":"https://www.wikidata.org/wiki/Q788790","display_name":"Documentation","level":2,"score":0.6401329040527344},{"id":"https://openalex.org/C201305675","wikidata":"https://www.wikidata.org/wiki/Q852998","display_name":"Stakeholder","level":2,"score":0.5716255307197571},{"id":"https://openalex.org/C2776459999","wikidata":"https://www.wikidata.org/wiki/Q2119376","display_name":"Fidelity","level":2,"score":0.5189608931541443},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.5085722208023071},{"id":"https://openalex.org/C177264268","wikidata":"https://www.wikidata.org/wiki/Q1514741","display_name":"Set (abstract data type)","level":2,"score":0.4756471812725067},{"id":"https://openalex.org/C98045186","wikidata":"https://www.wikidata.org/wiki/Q205663","display_name":"Process (computing)","level":2,"score":0.4753786623477936},{"id":"https://openalex.org/C2778900529","wikidata":"https://www.wikidata.org/wiki/Q2827779","display_name":"Family caregivers","level":2,"score":0.4509838819503784},{"id":"https://openalex.org/C128487930","wikidata":"https://www.wikidata.org/wiki/Q579488","display_name":"Information management","level":2,"score":0.42533016204833984},{"id":"https://openalex.org/C113843644","wikidata":"https://www.wikidata.org/wiki/Q901882","display_name":"Interface (matter)","level":4,"score":0.4228227734565735},{"id":"https://openalex.org/C195094911","wikidata":"https://www.wikidata.org/wiki/Q14167904","display_name":"Process management","level":1,"score":0.4001792371273041},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.383788138628006},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.3830578923225403},{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.3815431296825409},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.35843440890312195},{"id":"https://openalex.org/C107457646","wikidata":"https://www.wikidata.org/wiki/Q207434","display_name":"Human\u2013computer interaction","level":1,"score":0.33519378304481506},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.3214878737926483},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.27273696660995483},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.2272493839263916},{"id":"https://openalex.org/C76155785","wikidata":"https://www.wikidata.org/wiki/Q418","display_name":"Telecommunications","level":1,"score":0.13069921731948853},{"id":"https://openalex.org/C173608175","wikidata":"https://www.wikidata.org/wiki/Q232661","display_name":"Parallel computing","level":1,"score":0.0},{"id":"https://openalex.org/C129307140","wikidata":"https://www.wikidata.org/wiki/Q6795880","display_name":"Maximum bubble pressure method","level":3,"score":0.0},{"id":"https://openalex.org/C199360897","wikidata":"https://www.wikidata.org/wiki/Q9143","display_name":"Programming language","level":1,"score":0.0},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.0},{"id":"https://openalex.org/C162324750","wikidata":"https://www.wikidata.org/wiki/Q8134","display_name":"Economics","level":0,"score":0.0},{"id":"https://openalex.org/C50522688","wikidata":"https://www.wikidata.org/wiki/Q189833","display_name":"Economic growth","level":1,"score":0.0},{"id":"https://openalex.org/C157915830","wikidata":"https://www.wikidata.org/wiki/Q2928001","display_name":"Bubble","level":2,"score":0.0},{"id":"https://openalex.org/C111919701","wikidata":"https://www.wikidata.org/wiki/Q9135","display_name":"Operating system","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1145/3544548.3581459","is_oa":false,"landing_page_url":"https://doi.org/10.1145/3544548.3581459","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems","raw_type":"proceedings-article"}],"best_oa_location":null,"sustainable_development_goals":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":66,"referenced_works":["https://openalex.org/W17289106","https://openalex.org/W30038292","https://openalex.org/W81685006","https://openalex.org/W1977109552","https://openalex.org/W1979290264","https://openalex.org/W1981376720","https://openalex.org/W1983857523","https://openalex.org/W1996744814","https://openalex.org/W1999381003","https://openalex.org/W2016816371","https://openalex.org/W2030147582","https://openalex.org/W2030724953","https://openalex.org/W2031588234","https://openalex.org/W2036067276","https://openalex.org/W2058063325","https://openalex.org/W2069071080","https://openalex.org/W2073852781","https://openalex.org/W2087423276","https://openalex.org/W2108849617","https://openalex.org/W2122806432","https://openalex.org/W2133436107","https://openalex.org/W2138985166","https://openalex.org/W2141815216","https://openalex.org/W2141901513","https://openalex.org/W2146788216","https://openalex.org/W2150290401","https://openalex.org/W2151772994","https://openalex.org/W2157463279","https://openalex.org/W2166123574","https://openalex.org/W2168873237","https://openalex.org/W2289107354","https://openalex.org/W2290835535","https://openalex.org/W2475721233","https://openalex.org/W2568836284","https://openalex.org/W2582542549","https://openalex.org/W2588153309","https://openalex.org/W2588312088","https://openalex.org/W2744314012","https://openalex.org/W2773272791","https://openalex.org/W2775469924","https://openalex.org/W2783316423","https://openalex.org/W2796021005","https://openalex.org/W2796223281","https://openalex.org/W2808284658","https://openalex.org/W2808353110","https://openalex.org/W2810030849","https://openalex.org/W2907799275","https://openalex.org/W2951304847","https://openalex.org/W2954241205","https://openalex.org/W2955281452","https://openalex.org/W2995808822","https://openalex.org/W3005297432","https://openalex.org/W3031502651","https://openalex.org/W3038816632","https://openalex.org/W3149580724","https://openalex.org/W3156370859","https://openalex.org/W3203605053","https://openalex.org/W3211921961","https://openalex.org/W4214853809","https://openalex.org/W4225163922","https://openalex.org/W4226267185","https://openalex.org/W4281751073","https://openalex.org/W4282943805","https://openalex.org/W4292756613","https://openalex.org/W4302767823","https://openalex.org/W4309617258"],"related_works":["https://openalex.org/W2618286804","https://openalex.org/W2329643025","https://openalex.org/W2002770077","https://openalex.org/W3131163342","https://openalex.org/W2092256833","https://openalex.org/W2142369114","https://openalex.org/W2361728394","https://openalex.org/W2166271660","https://openalex.org/W3089582840","https://openalex.org/W2352631095"],"abstract_inverted_index":{"Children":[0],"Living":[1],"with":[2,16,80],"Health":[3],"Complexity":[4],"(CLHC),":[5],"whose":[6],"multiple,":[7],"severe":[8],"and":[9,24,45,56,67,130,144,149],"chronic":[10],"conditions":[11],"differentiate":[12],"them":[13],"from":[14,52,85,137],"those":[15],"\u201ccomplicated\u201d":[17],"conditions,":[18],"rely":[19],"life-long":[20],"on":[21,58],"a":[22,34,99,113,131],"vast":[23],"ever-shifting":[25],"array":[26],"of":[27,49,83,109,115,146],"care":[28,37,63,76],"providers.":[29,77],"Their":[30],"parent":[31,81],"caregivers":[32,82],"face":[33],"fragmented":[35],"health":[36,72,155],"system,":[38],"disconnected":[39],"medical":[40],"records,":[41],"inter-stakeholder":[42],"communication":[43],"barriers":[44],"an":[46,89],"impenetrable":[47],"accumulation":[48],"documentation":[50],"\u2013":[51],"mundane":[53],"to":[54,74,94,122],"life-critical,":[55],"largely":[57],"paper.":[59],"They":[60],"must":[61],"coordinate":[62],"while":[64],"organizing,":[65],"tracking":[66],"transmitting":[68],"trends":[69],"in":[70],"many":[71],"parameters":[73],"myriad":[75],"We":[78,104],"engaged":[79],"CLHC":[84],"12":[86],"families":[87],"through":[88],"iterative,":[90],"3-phase":[91],"co-design":[92],"process":[93],"understand":[95],"their":[96,110],"needs":[97],"for":[98,117],"future":[100],"digital":[101],"management":[102],"system.":[103],"share":[105],"our":[106],"deepened":[107],"understanding":[108],"information-centered":[111],"challenges,":[112],"set":[114],"principles":[116],"how":[118],"design":[119],"best-practices":[120],"need":[121],"shift":[123],"when":[124],"targeting":[125],"this":[126],"acutely":[127],"high-needs":[128],"group,":[129],"medium-fidelity":[132],"prototype":[133],"user":[134],"interface":[135],"which":[136],"the":[138,147],"ground-up":[139],"prioritizes":[140],"caregiver-centered":[141],"data":[142],"integration":[143],"humanization":[145],"child":[148],"family,":[150],"as":[151,153],"well":[152],"integrated":[154],"record":[156],"access.":[157]},"counts_by_year":[{"year":2026,"cited_by_count":4},{"year":2025,"cited_by_count":6},{"year":2024,"cited_by_count":9},{"year":2023,"cited_by_count":1}],"updated_date":"2026-04-14T08:04:32.555800","created_date":"2025-10-10T00:00:00"}
