{"id":"https://openalex.org/W2591674543","doi":null,"title":"Siblings of children with down syndrome: Voices heard","display_name":"Siblings of children with down syndrome: Voices heard","publication_year":2016,"publication_date":"2016-01-01","ids":{"openalex":"https://openalex.org/W2591674543","mag":"2591674543"},"language":"en","primary_location":{"id":"pmh:oai:repository.arizona.edu:10150/622942","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/10150/622942","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/A5077800315","display_name":"Kimberlee Ann Sutter","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Kimberlee Ann Sutter","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5077800315"],"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/T11632","display_name":"Family and Disability Support Research","score":0.7875999808311462,"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"}},"topics":[{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.7875999808311462,"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/T11015","display_name":"Down syndrome and intellectual disability research","score":0.20149999856948853,"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/T10585","display_name":"Family Dynamics and Relationships","score":0.0026000000070780516,"subfield":{"id":"https://openalex.org/subfields/3317","display_name":"Demography"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/down-syndrome","display_name":"Down syndrome","score":0.8690000176429749},{"id":"https://openalex.org/keywords/siblings-of-children-with-disabilities","display_name":"siblings of children with disabilities","score":0.8939999938011169},{"id":"https://openalex.org/keywords/sibling-relationships","display_name":"sibling relationships","score":0.9430000185966492},{"id":"https://openalex.org/keywords/lived-experience","display_name":"lived experience","score":0.8199999928474426},{"id":"https://openalex.org/keywords/elementary-school-students","display_name":"elementary school students","score":0.9369999766349792},{"id":"https://openalex.org/keywords/bioecological-model","display_name":"bioecological model","score":0.7549999952316284},{"id":"https://openalex.org/keywords/psychosocial-development","display_name":"psychosocial development","score":0.8960000276565552},{"id":"https://openalex.org/keywords/reciprocal-interaction","display_name":"reciprocal interaction","score":0.8090000152587891},{"id":"https://openalex.org/keywords/constructionism","display_name":"constructionism","score":0.8270000219345093},{"id":"https://openalex.org/keywords/family-caregiving","display_name":"family caregiving","score":0.5460000038146973}],"concepts":[{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.4209010601043701},{"id":"https://openalex.org/C138496976","wikidata":"https://www.wikidata.org/wiki/Q175002","display_name":"Developmental psychology","level":1,"score":0.4205319881439209},{"id":"https://openalex.org/C2779954681","wikidata":"https://www.wikidata.org/wiki/Q47715","display_name":"Down syndrome","level":2,"score":0.4155358672142029},{"id":"https://openalex.org/C53553401","wikidata":"https://www.wikidata.org/wiki/Q47307","display_name":"Genealogy","level":1,"score":0.3223886787891388},{"id":"https://openalex.org/C95457728","wikidata":"https://www.wikidata.org/wiki/Q309","display_name":"History","level":0,"score":0.22708478569984436},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.1586386263370514}],"mesh":[],"locations_count":2,"locations":[{"id":"pmh:oai:repository.arizona.edu:10150/622942","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/10150/622942","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:2591674543","doi":null,"is_oa":false,"landing_page_url":"http://arizona.openrepository.com/arizona/handle/10150/622942","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":0.504800021648407}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":103,"referenced_works":["https://openalex.org/W92401735","https://openalex.org/W142011728","https://openalex.org/W265718150","https://openalex.org/W383415708","https://openalex.org/W567522435","https://openalex.org/W1510426010","https://openalex.org/W1516727791","https://openalex.org/W1524153217","https://openalex.org/W1535120153","https://openalex.org/W1537701711","https://openalex.org/W1544350589","https://openalex.org/W1547730520","https://openalex.org/W1568728383","https://openalex.org/W1575714269","https://openalex.org/W1585528064","https://openalex.org/W1591640611","https://openalex.org/W1603035159","https://openalex.org/W1631767606","https://openalex.org/W1675192189","https://openalex.org/W1695690256","https://openalex.org/W1778277763","https://openalex.org/W1831475266","https://openalex.org/W1865273554","https://openalex.org/W1884204040","https://openalex.org/W1897568969","https://openalex.org/W1933235559","https://openalex.org/W1938628196","https://openalex.org/W1966847106","https://openalex.org/W1967327083","https://openalex.org/W1971116852","https://openalex.org/W1971941906","https://openalex.org/W1973722153","https://openalex.org/W1978226390","https://openalex.org/W1979176205","https://openalex.org/W1986064703","https://openalex.org/W1988340256","https://openalex.org/W1991476882","https://openalex.org/W1995286519","https://openalex.org/W1999286428","https://openalex.org/W2000505721","https://openalex.org/W2004334754","https://openalex.org/W2011865107","https://openalex.org/W2013069714","https://openalex.org/W2013491255","https://openalex.org/W2025925231","https://openalex.org/W2030652900","https://openalex.org/W2035157513","https://openalex.org/W2035605508","https://openalex.org/W2036227964","https://openalex.org/W2038168024","https://openalex.org/W2039781823","https://openalex.org/W2041680478","https://openalex.org/W2045763069","https://openalex.org/W2050191907","https://openalex.org/W2053281658","https://openalex.org/W2058140270","https://openalex.org/W2062677024","https://openalex.org/W2064930404","https://openalex.org/W2072612579","https://openalex.org/W2073600984","https://openalex.org/W2074682455","https://openalex.org/W2077058748","https://openalex.org/W2078269721","https://openalex.org/W2081520729","https://openalex.org/W2098608210","https://openalex.org/W2099208562","https://openalex.org/W2100176455","https://openalex.org/W2103066851","https://openalex.org/W2113442775","https://openalex.org/W2115358387","https://openalex.org/W2115957898","https://openalex.org/W2116694710","https://openalex.org/W2123248844","https://openalex.org/W2126120683","https://openalex.org/W2127035951","https://openalex.org/W2127889905","https://openalex.org/W2131516537","https://openalex.org/W2134011890","https://openalex.org/W2135635111","https://openalex.org/W2138047627","https://openalex.org/W2142764273","https://openalex.org/W2147856362","https://openalex.org/W2149226903","https://openalex.org/W2149693033","https://openalex.org/W2150659100","https://openalex.org/W2151020421","https://openalex.org/W2151462240","https://openalex.org/W2153990047","https://openalex.org/W2155866830","https://openalex.org/W2157904933","https://openalex.org/W2160140301","https://openalex.org/W2161902902","https://openalex.org/W2166019323","https://openalex.org/W2172203459","https://openalex.org/W2343782712","https://openalex.org/W2401874934","https://openalex.org/W2407443704","https://openalex.org/W2428936555","https://openalex.org/W2483760132","https://openalex.org/W2493678814","https://openalex.org/W2503268251","https://openalex.org/W2905936245","https://openalex.org/W4245408774"],"related_works":["https://openalex.org/W7019216753","https://openalex.org/W567851972","https://openalex.org/W7048421158","https://openalex.org/W2562691148","https://openalex.org/W156960067","https://openalex.org/W2796893811","https://openalex.org/W7097522024","https://openalex.org/W2035271781","https://openalex.org/W1997226102","https://openalex.org/W2063276431"],"abstract_inverted_index":{"The":[0,127,145,168,219,316],"purpose":[1],"of":[2,10,13,16,30,38,115,138,143,147,159,163,187,193,214,222,229,234,236,246,295,299],"this":[3,130,205,217,320],"study":[4,131,321],"was":[5,132,209],"to":[6,25,87,94,106,203,231,325,327,339,344],"explore":[7],"the":[8,11,31,35,39,75,78,88,92,97,108,120,125,135,148,154,157,160,185,191,212,227,244,247,251,293,296,342],"meanings":[9],"relationship":[12,80,110],"school-age":[14,40,224],"siblings":[15,53],"brothers":[17],"or":[18,265],"sisters":[19],"with":[20,68,99,184,238,272,311,346],"Down":[21,69,100,239,273,312],"syndrome":[22,70,274,313],"in":[23,216,341],"order":[24],"gain":[26],"a":[27,301],"greater":[28],"understanding":[29],"lived":[32,121,297],"experience":[33,122,298],"from":[34,134,279,319],"view":[36],"point":[37],"sibling.":[41,126],"Sibling":[42],"spend":[43],"more":[44],"time":[45],"together":[46,304],"than":[47],"any":[48],"other":[49,62,151,280,285],"family":[50,188],"subsystem":[51],"and":[52,59,118,141,150,282,305,348],"actively":[54],"shape":[55],"one":[56],"another\u2019s":[57],"lives":[58,117],"prepare":[60],"each":[61],"for":[63,96,124,129,262],"future":[64,343,349],"experiences.":[65],"With":[66],"children":[67,171,237],"living":[71],"into":[72],"their":[73,116],"60\u2019s,":[74],"question":[76],"regarding":[77],"sibling":[79,93,109,155],"is":[81,104,123],"becoming":[82],"an":[83,112],"important":[84,105],"focus":[85],"due":[86],"possible":[89],"demands":[90],"on":[91,153,284],"care":[95],"individual":[98],"syndrome.":[101,240],"Therefore,":[102],"it":[103],"understand":[107],"at":[111],"early":[113],"stage":[114],"what":[119,336],"framework":[128,162],"developed":[133],"author\u2019s":[136],"worldview":[137],"reciprocal":[139],"interaction":[140],"epistemology":[142],"constructionism.":[144],"influences":[146,186],"environment":[149],"individuals":[152,176],"supported":[156,190],"use":[158,192,245],"theoretical":[161],"Bronfenbrenner\u2019s":[164],"Bioecological":[165],"System":[166],"Theory.":[167],"notion":[169],"that":[170,332],"are":[172,178],"continually":[173],"evolving":[174],"holistic":[175],"who":[177],"developing":[179],"through":[180],"task":[181],"achievements":[182],"and,":[183],"members,":[189],"Erikson\u2019s":[194],"psychosocial":[195],"developmental":[196],"theory.":[197],"These":[198],"two":[199],"theories":[200],"were":[201],"combined":[202],"frame":[204],"study.":[206,218],"Interpretive":[207],"phenomenology":[208],"used":[210],"as":[211],"method":[213],"research":[215],"sample":[220],"consisted":[221],"seven":[223,254],"siblings,":[225],"between":[226],"ages":[228],"eight":[230],"eleven":[232],"years":[233],"age,":[235],"Data":[241],"analysis":[242,252],"involved":[243],"hermeneutic":[248],"circle.":[249],"From":[250],"emerged":[253],"themes:":[255],"always":[256,303],"together,":[257],"tolerance,":[258],"intense":[259],"love,":[260],"responsibility":[261],"my":[263],"brother":[264],"sister,":[266],"things":[267,306],"will":[268,307,322],"change":[269,308],"when":[270,309],"child":[271,310],"gets":[275,314],"better,":[276],"no":[277],"difference":[278],"families,":[281],"impact":[283],"relationships.":[286],"Two":[287],"themes":[288],"provided":[289],"new":[290],"information":[291],"about":[292],"meaning":[294],"being":[300],"sibling,":[302],"better.":[315],"knowledge":[317],"gained":[318],"allow":[323],"us":[324],"begin":[326],"hear":[328],"sibling\u2019s":[329],"voices":[330],"so":[331],"we":[333,337],"can":[334],"see":[335],"need":[338],"do":[340],"help":[345],"support":[347],"research.":[350]},"counts_by_year":[],"updated_date":"2026-11-08T12:12:28.789561","created_date":"2017-03-16T00:00:00"}