{"id":"https://openalex.org/W1901485386","doi":null,"title":"Consequences of care : Parents of children with a chronic disease","display_name":"Consequences of care : Parents of children with a chronic disease","publication_year":2009,"publication_date":"2009-01-01","ids":{"openalex":"https://openalex.org/W1901485386","mag":"1901485386"},"language":"en","primary_location":{"id":"pmh:oai:dare.uva.nl:openaire/db1c2e36-80af-4887-bede-2a792115ae7b","doi":null,"is_oa":true,"landing_page_url":"https://handle.uba.uva.nl/personal/pure/en/publications/consequences-of-care--parents-of-children-with-a-chronic-disease(db1c2e36-80af-4887-bede-2a792115ae7b).html","pdf_url":"https://pure.uva.nl/ws/files/814048/70299_Proefschrift_Janneke_Hatzmann.pdf","source":{"id":"https://openalex.org/S4306400088","display_name":"UvA-DARE (University of Amsterdam)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I887064364","host_organization_name":"University of Amsterdam","host_organization_lineage":["https://openalex.org/I887064364"],"host_organization_lineage_names":[],"type":"repository"},"license":"other-oa","license_id":"https://openalex.org/licenses/other-oa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Hatzmann, J 2009, 'Consequences of care : Parents of children with a chronic disease', Doctor of Philosophy, Universiteit van Amsterdam.","raw_type":"info:eu-repo/semantics/other"},"volume":null,"type":"other","is_traditional":false,"indexed_in":[],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://pure.uva.nl/ws/files/814048/70299_Proefschrift_Janneke_Hatzmann.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5026207291","display_name":"Janneke Hatzmann","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Janneke Hatzmann","raw_affiliation_strings":["Paediatric Psychosocial Care"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Paediatric Psychosocial Care","institution_ids":[]}]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5026207291"],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":true,"cited_by_count":1,"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":0.8300999999046326,"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":0.8300999999046326,"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/T13574","display_name":"Family Support in Illness","score":0.10980000346899033,"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/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.01489999983459711,"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/parents-of-chronically-ill-children","display_name":"parents of children with chronic illness","score":0.8730000257492065},{"id":"https://openalex.org/keywords/parental-employment","display_name":"parental employment","score":0.6830000281333923},{"id":"https://openalex.org/keywords/subjective-well-being","display_name":"subjective well-being","score":0.6809999942779541},{"id":"https://openalex.org/keywords/household-income","display_name":"household income","score":0.7289999723434448},{"id":"https://openalex.org/keywords/health-related-quality-of-life","display_name":"health-related quality of life","score":0.8059999942779541},{"id":"https://openalex.org/keywords/chronic-childhood-illness","display_name":"chronic childhood illness","score":0.6520000100135803},{"id":"https://openalex.org/keywords/parenting-burden","display_name":"parental burden","score":0.4410000145435333},{"id":"https://openalex.org/keywords/diabetes-mellitus","display_name":"diabetes mellitus","score":0.8180000185966492},{"id":"https://openalex.org/keywords/down-syndrome","display_name":"Down syndrome","score":0.7609999775886536},{"id":"https://openalex.org/keywords/duchenne-muscular-dystrophy","display_name":"Duchenne muscular dystrophy","score":0.9810000061988831},{"id":"https://openalex.org/keywords/sickle-cell-disease","display_name":"sickle cell disease","score":0.8489999771118164},{"id":"https://openalex.org/keywords/spina-bifida","display_name":"spina bifida","score":0.9760000109672546},{"id":"https://openalex.org/keywords/brain-tumor-survivors","display_name":"brain tumor survivors","score":0.746999979019165},{"id":"https://openalex.org/keywords/end-stage-renal-disease","display_name":"end-stage renal disease","score":0.7160000205039978},{"id":"https://openalex.org/keywords/metabolic-disorders","display_name":"metabolic disorders","score":0.6439999938011169},{"id":"https://openalex.org/keywords/multiple-disabilities","display_name":"multiple disabilities","score":0.7950000166893005}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.4881323277950287},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.4850127398967743},{"id":"https://openalex.org/C2987552334","wikidata":"https://www.wikidata.org/wiki/Q383126","display_name":"Chronic disease","level":2,"score":0.4109458029270172},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.3217639923095703},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.21482053399085999},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0}],"mesh":[],"locations_count":5,"locations":[{"id":"pmh:oai:dare.uva.nl:openaire/db1c2e36-80af-4887-bede-2a792115ae7b","doi":null,"is_oa":true,"landing_page_url":"https://handle.uba.uva.nl/personal/pure/en/publications/consequences-of-care--parents-of-children-with-a-chronic-disease(db1c2e36-80af-4887-bede-2a792115ae7b).html","pdf_url":"https://pure.uva.nl/ws/files/814048/70299_Proefschrift_Janneke_Hatzmann.pdf","source":{"id":"https://openalex.org/S4306400088","display_name":"UvA-DARE (University of Amsterdam)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I887064364","host_organization_name":"University of Amsterdam","host_organization_lineage":["https://openalex.org/I887064364"],"host_organization_lineage_names":[],"type":"repository"},"license":"other-oa","license_id":"https://openalex.org/licenses/other-oa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Hatzmann, J 2009, 'Consequences of care : Parents of children with a chronic disease', Doctor of Philosophy, Universiteit van Amsterdam.","raw_type":"info:eu-repo/semantics/other"},{"id":"pmh:amcpub:oai:pure.amc.nl:publications/ee8ec66d-2e29-4315-bc9b-0bf4b10a0ba3","doi":null,"is_oa":false,"landing_page_url":"https://pure.amc.nl/en/publications/consequences-of-care-parents-of-children-with-a-chronic-disease(ee8ec66d-2e29-4315-bc9b-0bf4b10a0ba3).html","pdf_url":null,"source":{"id":"https://openalex.org/S4306401843","display_name":"Data Archiving and Networked Services (DANS)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1322597698","host_organization_name":"Royal Netherlands Academy of Arts and Sciences","host_organization_lineage":["https://openalex.org/I1322597698"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"info:eu-repo/semantics/doctoralthesis"},{"id":"pmh:oai:pure.amsterdamumc.nl:openaire_cris_publications/a5c02767-c154-47d5-be6e-8dfe9c029290","doi":null,"is_oa":false,"landing_page_url":"https://pure.amsterdamumc.nl/en/publications/a5c02767-c154-47d5-be6e-8dfe9c029290","pdf_url":null,"source":{"id":"https://openalex.org/S7407055222","display_name":"Pure Amsterdam UMC","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Hatzmann, J 2009, 'Consequences of care. Parents of children with a chronic disease', University of Amsterdam.","raw_type":"info:eu-repo/semantics/other"},{"id":"pmh:uvapub:oai:dare.uva.nl:publications/db1c2e36-80af-4887-bede-2a792115ae7b","doi":null,"is_oa":true,"landing_page_url":"https://dare.uva.nl/personal/pure/en/publications/consequences-of-care--parents-of-children-with-a-chronic-disease(db1c2e36-80af-4887-bede-2a792115ae7b).html","pdf_url":null,"source":{"id":"https://openalex.org/S4306401843","display_name":"Data Archiving and Networked Services (DANS)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1322597698","host_organization_name":"Royal Netherlands Academy of Arts and Sciences","host_organization_lineage":["https://openalex.org/I1322597698"],"host_organization_lineage_names":[],"type":"repository"},"license":"other-oa","license_id":"https://openalex.org/licenses/other-oa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"info:eu-repo/semantics/doctoralthesis"},{"id":"mag:1901485386","doi":null,"is_oa":false,"landing_page_url":"https://pure.uva.nl/ws/files/814048/70299_Proefschrift_Janneke_Hatzmann.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:dare.uva.nl:openaire/db1c2e36-80af-4887-bede-2a792115ae7b","doi":null,"is_oa":true,"landing_page_url":"https://handle.uba.uva.nl/personal/pure/en/publications/consequences-of-care--parents-of-children-with-a-chronic-disease(db1c2e36-80af-4887-bede-2a792115ae7b).html","pdf_url":"https://pure.uva.nl/ws/files/814048/70299_Proefschrift_Janneke_Hatzmann.pdf","source":{"id":"https://openalex.org/S4306400088","display_name":"UvA-DARE (University of Amsterdam)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I887064364","host_organization_name":"University of Amsterdam","host_organization_lineage":["https://openalex.org/I887064364"],"host_organization_lineage_names":[],"type":"repository"},"license":"other-oa","license_id":"https://openalex.org/licenses/other-oa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Hatzmann, J 2009, 'Consequences of care : Parents of children with a chronic disease', Doctor of Philosophy, Universiteit van Amsterdam.","raw_type":"info:eu-repo/semantics/other"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":1.0,"display_name":"Good health and well-being"}],"study_designs":[],"awards":[],"funders":[{"id":"https://openalex.org/F4320318162","display_name":"Ministerie van Sociale Zaken en Werkgelegenheid","ror":"https://ror.org/05xaz7757"}],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W1901485386.pdf","grobid_xml":"https://content.openalex.org/works/W1901485386.grobid-xml"},"referenced_works_count":77,"referenced_works":["https://openalex.org/W13872808","https://openalex.org/W70665751","https://openalex.org/W88607751","https://openalex.org/W145787699","https://openalex.org/W1480920286","https://openalex.org/W1526957004","https://openalex.org/W1963758073","https://openalex.org/W1964699616","https://openalex.org/W1969078723","https://openalex.org/W1974283806","https://openalex.org/W1983592896","https://openalex.org/W1986801886","https://openalex.org/W1987184999","https://openalex.org/W1991023190","https://openalex.org/W2000276975","https://openalex.org/W2000447392","https://openalex.org/W2000702719","https://openalex.org/W2001310434","https://openalex.org/W2004016454","https://openalex.org/W2004229877","https://openalex.org/W2005204294","https://openalex.org/W2007343092","https://openalex.org/W2013160749","https://openalex.org/W2013564668","https://openalex.org/W2019998848","https://openalex.org/W2020088825","https://openalex.org/W2020440888","https://openalex.org/W2029351122","https://openalex.org/W2040322182","https://openalex.org/W2041756667","https://openalex.org/W2042575337","https://openalex.org/W2044044141","https://openalex.org/W2048912361","https://openalex.org/W2050650076","https://openalex.org/W2052224056","https://openalex.org/W2053416705","https://openalex.org/W2053481959","https://openalex.org/W2054730037","https://openalex.org/W2056102585","https://openalex.org/W2059507966","https://openalex.org/W2060222522","https://openalex.org/W2060482102","https://openalex.org/W2076755384","https://openalex.org/W2079485804","https://openalex.org/W2079582643","https://openalex.org/W2101446440","https://openalex.org/W2102841590","https://openalex.org/W2116978364","https://openalex.org/W2119585959","https://openalex.org/W2120380557","https://openalex.org/W2121589271","https://openalex.org/W2127042200","https://openalex.org/W2131694534","https://openalex.org/W2133932049","https://openalex.org/W2135433478","https://openalex.org/W2139540597","https://openalex.org/W2140381054","https://openalex.org/W2140816688","https://openalex.org/W2142352011","https://openalex.org/W2142626085","https://openalex.org/W2143441850","https://openalex.org/W2149941216","https://openalex.org/W2150424644","https://openalex.org/W2153053916","https://openalex.org/W2153176124","https://openalex.org/W2158116314","https://openalex.org/W2158519886","https://openalex.org/W2165008293","https://openalex.org/W2165837384","https://openalex.org/W2166427615","https://openalex.org/W2168565683","https://openalex.org/W2169940153","https://openalex.org/W2170152910","https://openalex.org/W2170289085","https://openalex.org/W2174443062","https://openalex.org/W2408747228","https://openalex.org/W4253927625"],"related_works":["https://openalex.org/W3133935217","https://openalex.org/W4206577121","https://openalex.org/W2314815929","https://openalex.org/W2783295598","https://openalex.org/W7008648440","https://openalex.org/W2014051331","https://openalex.org/W7005511325","https://openalex.org/W2168565683","https://openalex.org/W2034110725","https://openalex.org/W3197067996"],"abstract_inverted_index":{"General":[0],"introduction":[1],"CHAPTER":[2],"1jective":[3],"well-being":[4,36],"was":[5,92,299,304,332],"equated":[6],"to":[7,266,317,320],"the":[8,31,45,112,116,125,134,161,204,219,233,253,256,269,290,323,335],"effect":[9],"of":[10,25,33,47,51,79,97,104,108,165,197,203,210,221,252,286],"household":[11],"income":[12],"on":[13,129],"subjective":[14],"well-being,":[15],"both":[16],"corrected":[17],"for":[18,143,277,334],"disease":[19,57,110,117,135,157,229],"related":[20,69],"and":[21,28,61,65,70,101,140,195,261,310],"socio-demographic":[22],"variables.with":[23],"parents":[24,78,96,103,263,315],"healthy":[26,105,287],"children":[27,80,100,120,166,217,236,257],"what":[29],"are":[30,72,280],"costs":[32],"differences":[34],"in":[35,38,77,119,227,271,282,325],"expressed":[37],"a":[39,49,52,55,82,211,345],"monetary":[40],"value?":[41],"4":[42,141,262],"What":[43],"is":[44,127,136],"relationship":[46],"being":[48],"parent":[50],"child":[53,298],"with":[54,58,74,81],"chronic":[56,83,109,170,222],"parental":[59],"employment":[60],"leisure":[62],"activity":[63],"time":[64],"which":[66],"factors":[67],"(disease":[68],"social)":[71],"associated":[73],"these":[75],"outcomes":[76],"disease?":[84],"Sample":[85],"&":[86],"measuresThis":[87],"explorative,":[88],"cross-sectional,":[89],"retrospective":[90],"study":[91],"conducted":[93],"among":[94],"580":[95],"chronically":[98,234,301],"ill":[99,235],"443":[102],"schoolchildren.The":[106],"definition":[107],"includes":[111,338],"following":[113],"criteria:":[114],"1":[115,232,248],"occurs":[118],"aged":[121,238,305],"0-18":[122],"years,":[123],"2":[124,243,303],"diagnosis":[126,279],"based":[128],"medical":[130],"scientific":[131],"knowledge,":[132],"3":[133,255,311],"not":[137,300],"(yet)":[138],"curable":[139],"exists":[142],"at":[144,154,246,259,313],"least":[145,155,247],"three":[146,156],"months,":[147],"or":[148,153,208,274,328],"will":[149],"probably":[150],"endure":[151],"longer,":[152],"episodes":[158],"have":[159],"occurred":[160],"last":[162],"year":[163,249],"88.Parents":[164],"from":[167,342],"10":[168],"different":[169],"diseases":[171],"were":[172,200,237,244,264,294],"selected:":[173],"asthma,":[174],"diabetes,":[175],"Down":[176],"syndrome,":[177],"Duchenne":[178],"muscular":[179],"dystrophy,":[180],"end":[181],"stage":[182],"renal":[183],"disease,":[184,192],"metabolic":[185,215],"diseases,":[186],"profound":[187],"multiple":[188],"handicaps,":[189],"sickle":[190],"cell":[191],"spina":[193],"bifida,":[194],"survivors":[196],"brain":[198],"tumors.They":[199],"either":[201,272,326],"patients":[202],"Emma":[205],"Children's":[206],"Hospital":[207],"members":[209],"patient":[212],"organization":[213],"(Duchenne,":[214],"diseases).All":[216],"met":[218],"criteria":[220,226,276],"childhood":[223],"illness.88":[224],"Inclusion":[225],"all":[228],"groups":[230],"were:":[231],"between":[239,306],"1-19":[240,307],"years":[241,308],"old,":[242],"diagnosed":[245],"before":[250],"start":[251],"study,":[254],"lived":[258],"home":[260],"able":[265,319],"fill":[267,321],"out":[268,322],"questionnaire":[270,324,331,337,347],"Dutch":[273,327],"English.Specific":[275],"each":[278],"described":[281],"Appendix":[283],"A.":[284],"Parents":[285],"schoolchildren":[288],"formed":[289],"comparison":[291],"group,":[292],"they":[293],"eligible":[295],"if:1":[296],"their":[297],"ill,":[302],"old":[309],"living":[312],"home.Also,":[314],"had":[316],"be":[318],"English.A":[329],"self-report":[330],"developed":[333],"Care-project.The":[336],"several":[339],"questions":[340],"adapted":[341],"other":[343],"studies,":[344],"validated":[346],"about":[348],"HRQoL;":[349]},"counts_by_year":[{"year":2017,"cited_by_count":1}],"updated_date":"2026-10-12T09:40:04.860316","created_date":"2016-06-24T00:00:00"}
