{"id":"https://openalex.org/W2162997625","doi":null,"title":"The experience of individuals with Huntingtons disease in the Western Cape, South Africa","display_name":"The experience of individuals with Huntingtons disease in the Western Cape, South Africa","publication_year":2014,"publication_date":"2014-01-01","ids":{"openalex":"https://openalex.org/W2162997625","mag":"2162997625"},"language":"en","primary_location":{"id":"pmh:oai:scholar.sun.ac.za:10019.1/95976","doi":null,"is_oa":true,"landing_page_url":"http://hdl.handle.net/10019.1/95976","pdf_url":"http://hdl.handle.net/10019.1/95976","source":{"id":"https://openalex.org/S4306400300","display_name":"SUNScholar (Stellenbosch University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I26092322","host_organization_name":"Stellenbosch University","host_organization_lineage":["https://openalex.org/I26092322"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"Thesis"},"volume":null,"type":"dissertation","is_traditional":true,"indexed_in":[],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"http://hdl.handle.net/10019.1/95976","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5085645523","display_name":"Ninon Joubert","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Ninon Joubert","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5085645523"],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":true,"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/T10949","display_name":"Genetic Neurodegenerative Diseases","score":0.9945999979972839,"subfield":{"id":"https://openalex.org/subfields/2804","display_name":"Cellular and Molecular Neuroscience"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},"topics":[{"id":"https://openalex.org/T10949","display_name":"Genetic Neurodegenerative Diseases","score":0.9945999979972839,"subfield":{"id":"https://openalex.org/subfields/2804","display_name":"Cellular and Molecular Neuroscience"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T13111","display_name":"Nursing care and research","score":0.0012000000569969416,"subfield":{"id":"https://openalex.org/subfields/2922","display_name":"Research and Theory"},"field":{"id":"https://openalex.org/fields/29","display_name":"Nursing"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.0007999999797903001,"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/huntington-s-disease","display_name":"Huntington's disease","score":0.9760000109672546},{"id":"https://openalex.org/keywords/lived-experience","display_name":"lived experience","score":0.8700000047683716},{"id":"https://openalex.org/keywords/patient-experience","display_name":"patient experience","score":0.8700000047683716},{"id":"https://openalex.org/keywords/western-cape","display_name":"Western Cape","score":0.7110000252723694}],"concepts":[{"id":"https://openalex.org/C2780647506","wikidata":"https://www.wikidata.org/wiki/Q190564","display_name":"Huntington's disease","level":3,"score":0.6635901927947998},{"id":"https://openalex.org/C2777628658","wikidata":"https://www.wikidata.org/wiki/Q1034198","display_name":"Cape","level":2,"score":0.4877255856990814},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.45974522829055786},{"id":"https://openalex.org/C205649164","wikidata":"https://www.wikidata.org/wiki/Q1071","display_name":"Geography","level":0,"score":0.4496798515319824},{"id":"https://openalex.org/C95457728","wikidata":"https://www.wikidata.org/wiki/Q309","display_name":"History","level":0,"score":0.3557775318622589},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.2737444043159485},{"id":"https://openalex.org/C166957645","wikidata":"https://www.wikidata.org/wiki/Q23498","display_name":"Archaeology","level":1,"score":0.12925595045089722},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0}],"mesh":[],"locations_count":3,"locations":[{"id":"pmh:oai:scholar.sun.ac.za:10019.1/95976","doi":null,"is_oa":true,"landing_page_url":"http://hdl.handle.net/10019.1/95976","pdf_url":"http://hdl.handle.net/10019.1/95976","source":{"id":"https://openalex.org/S4306400300","display_name":"SUNScholar (Stellenbosch University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I26092322","host_organization_name":"Stellenbosch University","host_organization_lineage":["https://openalex.org/I26092322"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"Thesis"},{"id":"mag:2162997625","doi":null,"is_oa":false,"landing_page_url":"https://scholar.sun.ac.za/bitstream/10019.1/95976/3/joubert_experience_2014.pdf","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},{"id":"mag:2803642878","doi":null,"is_oa":false,"landing_page_url":"https://scholar.sun.ac.za:443/bitstream/10019.1/95976/3/joubert_experience_2014.pdf","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":{"id":"pmh:oai:scholar.sun.ac.za:10019.1/95976","doi":null,"is_oa":true,"landing_page_url":"http://hdl.handle.net/10019.1/95976","pdf_url":"http://hdl.handle.net/10019.1/95976","source":{"id":"https://openalex.org/S4306400300","display_name":"SUNScholar (Stellenbosch University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I26092322","host_organization_name":"Stellenbosch University","host_organization_lineage":["https://openalex.org/I26092322"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"Thesis"},"sustainable_development_goals":[{"score":0.7246000170707703,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W2162997625.pdf","grobid_xml":"https://content.openalex.org/works/W2162997625.grobid-xml"},"referenced_works_count":116,"referenced_works":["https://openalex.org/W70682614","https://openalex.org/W237141987","https://openalex.org/W604559807","https://openalex.org/W1507075283","https://openalex.org/W1559973523","https://openalex.org/W1565932448","https://openalex.org/W1566646394","https://openalex.org/W1570071942","https://openalex.org/W1572645417","https://openalex.org/W1607349456","https://openalex.org/W1815460605","https://openalex.org/W1963553790","https://openalex.org/W1963924891","https://openalex.org/W1972027274","https://openalex.org/W1972318735","https://openalex.org/W1974019484","https://openalex.org/W1976036659","https://openalex.org/W1977156770","https://openalex.org/W1979290264","https://openalex.org/W1979581340","https://openalex.org/W1979935571","https://openalex.org/W1980416916","https://openalex.org/W1983990301","https://openalex.org/W1990594741","https://openalex.org/W1990723644","https://openalex.org/W1994384194","https://openalex.org/W1994473527","https://openalex.org/W2002824397","https://openalex.org/W2003149770","https://openalex.org/W2005181434","https://openalex.org/W2005348602","https://openalex.org/W2006623685","https://openalex.org/W2010249221","https://openalex.org/W2011984354","https://openalex.org/W2014758112","https://openalex.org/W2015004801","https://openalex.org/W2016438042","https://openalex.org/W2020352186","https://openalex.org/W2027025688","https://openalex.org/W2028142104","https://openalex.org/W2031299164","https://openalex.org/W2031880656","https://openalex.org/W2033773321","https://openalex.org/W2035352836","https://openalex.org/W2035591500","https://openalex.org/W2036429844","https://openalex.org/W2037613856","https://openalex.org/W2038137325","https://openalex.org/W2038484584","https://openalex.org/W2039087324","https://openalex.org/W2040327390","https://openalex.org/W2040650274","https://openalex.org/W2043210919","https://openalex.org/W2043536304","https://openalex.org/W2045532321","https://openalex.org/W2047484669","https://openalex.org/W2049072387","https://openalex.org/W2052841385","https://openalex.org/W2052983834","https://openalex.org/W2054273322","https://openalex.org/W2058316112","https://openalex.org/W2063074845","https://openalex.org/W2067845159","https://openalex.org/W2073049307","https://openalex.org/W2073361398","https://openalex.org/W2073637419","https://openalex.org/W2075434060","https://openalex.org/W2077220866","https://openalex.org/W2077735192","https://openalex.org/W2078959141","https://openalex.org/W2079249675","https://openalex.org/W2081821351","https://openalex.org/W2082651934","https://openalex.org/W2085050642","https://openalex.org/W2085756014","https://openalex.org/W2087028922","https://openalex.org/W2087157508","https://openalex.org/W2088504846","https://openalex.org/W2094715208","https://openalex.org/W2098051366","https://openalex.org/W2099638867","https://openalex.org/W2102938803","https://openalex.org/W2105256657","https://openalex.org/W2112923121","https://openalex.org/W2115478356","https://openalex.org/W2125098779","https://openalex.org/W2127237723","https://openalex.org/W2129660502","https://openalex.org/W2133465814","https://openalex.org/W2133909979","https://openalex.org/W2133972149","https://openalex.org/W2134311074","https://openalex.org/W2141403024","https://openalex.org/W2142706903","https://openalex.org/W2143237558","https://openalex.org/W2143549067","https://openalex.org/W2149201363","https://openalex.org/W2151840082","https://openalex.org/W2152479582","https://openalex.org/W2152543313","https://openalex.org/W2153054139","https://openalex.org/W2156796359","https://openalex.org/W2160615365","https://openalex.org/W2161819674","https://openalex.org/W2164299997","https://openalex.org/W2167824670","https://openalex.org/W2168847517","https://openalex.org/W2169735361","https://openalex.org/W2170923485","https://openalex.org/W2172072891","https://openalex.org/W2254735081","https://openalex.org/W2423647653","https://openalex.org/W2466545396","https://openalex.org/W2472879172","https://openalex.org/W2769888961","https://openalex.org/W2889920654"],"related_works":["https://openalex.org/W2217431346","https://openalex.org/W2164512645","https://openalex.org/W816804618","https://openalex.org/W3004485300","https://openalex.org/W2541738669","https://openalex.org/W7166808437","https://openalex.org/W2617648514","https://openalex.org/W2129034728","https://openalex.org/W2172020551","https://openalex.org/W2169650950"],"abstract_inverted_index":{"ENGLISH":[0],"ABSTRACT:":[1],"Aim:":[2],"The":[3,25,211],"aim":[4],"of":[5,14,27,93,100,127,133,140,186,201,257],"this":[6,187,214,248],"qualitative":[7],"study":[8,30,185,215,249],"was":[9,182],"to":[10,89,197,227,236,251],"explore":[11,198],"the":[12,28,35,44,61,80,90,138,183,199,206,243,255],"experiences":[13,92,200,256],"individuals":[15,39,202,220,259],"\\nwith":[16],"Huntington\u2019s":[17],"disease":[18],"(HD)":[19],"in":[20,189,205],"a":[21,70,109,190,267],"South":[22,191,209],"African":[23,192],"context.":[24],"focus":[26],"current":[29],"\\nwas":[31],"not":[32],"only":[33],"on":[34],"challenges":[36,225],"faced":[37],"by":[38],"with":[40,50,60,95,118,164,203,221,240,261],"HD,":[41,119,134,151,165],"but":[42],"also":[43,145,232],"resources/supports":[45],"\\nthat":[46],"help":[47],"them":[48,238],"cope":[49,239],"their":[51,228],"neurological":[52],"condition.":[53],"\\nMethod:":[54],"I":[55,67],"conducted":[56],"twelve":[57],"semi-structured":[58],"interviews":[59],"participants":[62],"and":[63,115,137,147,161,263],"they":[64,231],"\\ntranscribed":[65],"verbatim.":[66],"then":[68],"performed":[69],"thematic":[71],"analysis.":[72],"\\nResults:":[73],"Using":[74],"Bronfenbrenner\u2019s":[75],"Ecological":[76],"System\u2019s":[77],"Theory":[78],"as":[79],"theoretical":[81],"\\nframework,":[82],"several":[83,234],"themes":[84],"were":[85,144],"identified":[86,146],"that":[87,217,245],"related":[88],"participants\u2019":[91],"\\nliving":[94],"HD.":[96,141,241],"Challenges":[97],"included:":[98,148],"triad":[99],"symptoms,":[101],"sleep":[102],"problems,":[103,125],"testing":[104,158],"process,":[105,159],"\\nrelationships,":[106],"children,":[107],"it\u2019s":[108],"monster,":[110],"employment,":[111,155],"social":[112,156],"support,":[113,157],"partners":[114,160],"family":[116,162],"\\nmembers":[117,163],"medical":[120,166],"aid,":[121,167],"life":[122,168],"insurance,":[123,169],"financial":[124],"lack":[126,130],"HD":[128,172,204,222,262],"facilities,":[129,173],"\\nof":[131],"understanding":[132],"symptoms":[135],"watching":[136],"progression":[139],"Several":[142],"\\nsupports/resources":[143],"knowledge":[149],"about":[150,254],"counselling,":[152],"\\nmedication,":[153],"coping,":[154],"cure,":[170],"possible":[171],"religion,":[174],"grant":[175],"\\nand":[176],"adaptation":[177],"over":[178],"time.":[179],"Conclusion:":[180],"This":[181],"first":[184],"kind":[188],"context,":[193],"which":[194],"set":[195],"\\nout":[196],"Western":[207],"Cape,":[208],"Africa.":[210],"\\nfindings":[212],"from":[213,247],"demonstrate":[216],"although":[218],"these":[219,258,274],"experience":[223],"\\nseveral":[224],"due":[226],"debilitating":[229],"condition,":[230],"employ":[233],"resources":[235],"\\nhelp":[237],"Lastly,":[242],"findings":[244],"emerged":[246],"contribute":[250],"raising":[252],"awareness":[253],"living":[260],"could":[264],"serve":[265],"\\nas":[266],"valuable":[268],"foundation":[269],"for":[270,273],"tailor-made":[271],"interventions":[272],"unique":[275],"individuals.":[276]},"counts_by_year":[],"updated_date":"2026-11-10T11:39:43.021295","created_date":"2016-06-24T00:00:00"}