{"id":"https://openalex.org/W178347906","doi":null,"title":"The impact of managing a child\u2019s chronic fatigue syndrome/ myalgic encephalopathy (CFS/ME) on family relationships","display_name":"The impact of managing a child\u2019s chronic fatigue syndrome/ myalgic encephalopathy (CFS/ME) on family relationships","publication_year":2014,"publication_date":"2014-09-18","ids":{"openalex":"https://openalex.org/W178347906","mag":"178347906"},"language":"en","primary_location":{"id":"pmh:oai:eprints.uwe.ac.uk:23622","doi":null,"is_oa":true,"landing_page_url":"http://eprints.uwe.ac.uk/23622/1/Impact_of_CFSME_thesis.pdf","pdf_url":"http://eprints.uwe.ac.uk/23622/1/Impact_of_CFSME_thesis.pdf","source":{"id":"https://openalex.org/S4306401464","display_name":"UWE Research Repository (UWE Bristol)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I178535277","host_organization_name":"University of the West of England","host_organization_lineage":["https://openalex.org/I178535277"],"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://eprints.uwe.ac.uk/23622/1/Impact_of_CFSME_thesis.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5071675896","display_name":"Andrew Haig\u2010Ferguson","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Andrew Haig\u2010Ferguson","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5071675896"],"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/T11282","display_name":"Fibromyalgia and Chronic Fatigue Syndrome Research","score":0.7157999873161316,"subfield":{"id":"https://openalex.org/subfields/2738","display_name":"Psychiatry and Mental health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11282","display_name":"Fibromyalgia and Chronic Fatigue Syndrome Research","score":0.7157999873161316,"subfield":{"id":"https://openalex.org/subfields/2738","display_name":"Psychiatry and Mental 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/T11632","display_name":"Family and Disability Support Research","score":0.14880000054836273,"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":0.03669999912381172,"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/chronic-fatigue-syndrome","display_name":"chronic fatigue syndrome","score":0.9679999947547913},{"id":"https://openalex.org/keywords/children-with-chronic-illness","display_name":"children with chronic illness","score":0.8759999871253967},{"id":"https://openalex.org/keywords/family-relationships","display_name":"family relationships","score":0.9789999723434448},{"id":"https://openalex.org/keywords/parental-experiences","display_name":"parental experiences","score":0.8510000109672546},{"id":"https://openalex.org/keywords/parental-role","display_name":"parental role","score":0.5479999780654907},{"id":"https://openalex.org/keywords/family-isolation","display_name":"family isolation","score":0.5120000243186951},{"id":"https://openalex.org/keywords/uncertainty","display_name":"uncertainty","score":0.5180000066757202},{"id":"https://openalex.org/keywords/parental-exhaustion","display_name":"parental exhaustion","score":0.7580000162124634}],"concepts":[{"id":"https://openalex.org/C74196892","wikidata":"https://www.wikidata.org/wiki/Q7781188","display_name":"Thematic analysis","level":3,"score":0.7270973324775696},{"id":"https://openalex.org/C122980154","wikidata":"https://www.wikidata.org/wiki/Q205555","display_name":"Feeling","level":2,"score":0.7127088308334351},{"id":"https://openalex.org/C2779566273","wikidata":"https://www.wikidata.org/wiki/Q209733","display_name":"Chronic fatigue syndrome","level":2,"score":0.6370202302932739},{"id":"https://openalex.org/C2775941552","wikidata":"https://www.wikidata.org/wiki/Q25212305","display_name":"Isolation (microbiology)","level":2,"score":0.5711065530776978},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5385066270828247},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.507770836353302},{"id":"https://openalex.org/C12713177","wikidata":"https://www.wikidata.org/wiki/Q1900281","display_name":"Perspective (graphical)","level":2,"score":0.4661138653755188},{"id":"https://openalex.org/C156325361","wikidata":"https://www.wikidata.org/wiki/Q1152864","display_name":"Grounded theory","level":3,"score":0.45955905318260193},{"id":"https://openalex.org/C56995899","wikidata":"https://www.wikidata.org/wiki/Q1126687","display_name":"Focus group","level":2,"score":0.4410057067871094},{"id":"https://openalex.org/C2993804084","wikidata":"https://www.wikidata.org/wiki/Q8436","display_name":"Family life","level":2,"score":0.42679259181022644},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.4104054570198059},{"id":"https://openalex.org/C138496976","wikidata":"https://www.wikidata.org/wiki/Q175002","display_name":"Developmental psychology","level":1,"score":0.39475953578948975},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.3075578212738037},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.21830707788467407},{"id":"https://openalex.org/C89423630","wikidata":"https://www.wikidata.org/wiki/Q7193","display_name":"Microbiology","level":1,"score":0.0},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.0},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.0},{"id":"https://openalex.org/C154945302","wikidata":"https://www.wikidata.org/wiki/Q11660","display_name":"Artificial intelligence","level":1,"score":0.0},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.0},{"id":"https://openalex.org/C162853370","wikidata":"https://www.wikidata.org/wiki/Q39809","display_name":"Marketing","level":1,"score":0.0},{"id":"https://openalex.org/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0},{"id":"https://openalex.org/C107993555","wikidata":"https://www.wikidata.org/wiki/Q1662673","display_name":"Gender studies","level":1,"score":0.0},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.0}],"mesh":[],"locations_count":3,"locations":[{"id":"pmh:oai:eprints.uwe.ac.uk:23622","doi":null,"is_oa":true,"landing_page_url":"http://eprints.uwe.ac.uk/23622/1/Impact_of_CFSME_thesis.pdf","pdf_url":"http://eprints.uwe.ac.uk/23622/1/Impact_of_CFSME_thesis.pdf","source":{"id":"https://openalex.org/S4306401464","display_name":"UWE Research Repository (UWE Bristol)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I178535277","host_organization_name":"University of the West of England","host_organization_lineage":["https://openalex.org/I178535277"],"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":"pmh:oai:uwe-repository.worktribe.com:811869","doi":null,"is_oa":true,"landing_page_url":"https://uwe-repository.worktribe.com/output/811869","pdf_url":"https://uwe-repository.worktribe.com/preview/811877/Impact_of_CFSME_thesis.pdf","source":{"id":"https://openalex.org/S4306401464","display_name":"UWE Research Repository (UWE Bristol)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I178535277","host_organization_name":"University of the West of England","host_organization_lineage":["https://openalex.org/I178535277"],"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":null,"raw_type":"Thesis"},{"id":"mag:178347906","doi":null,"is_oa":false,"landing_page_url":"http://eprints.uwe.ac.uk/23622/","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:eprints.uwe.ac.uk:23622","doi":null,"is_oa":true,"landing_page_url":"http://eprints.uwe.ac.uk/23622/1/Impact_of_CFSME_thesis.pdf","pdf_url":"http://eprints.uwe.ac.uk/23622/1/Impact_of_CFSME_thesis.pdf","source":{"id":"https://openalex.org/S4306401464","display_name":"UWE Research Repository (UWE Bristol)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I178535277","host_organization_name":"University of the West of England","host_organization_lineage":["https://openalex.org/I178535277"],"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":1.0,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W178347906.pdf","grobid_xml":"https://content.openalex.org/works/W178347906.grobid-xml"},"referenced_works_count":47,"referenced_works":["https://openalex.org/W8740284","https://openalex.org/W124148478","https://openalex.org/W145325731","https://openalex.org/W1513954801","https://openalex.org/W1526784420","https://openalex.org/W1549843137","https://openalex.org/W1556402341","https://openalex.org/W1966781947","https://openalex.org/W1973977771","https://openalex.org/W1978380764","https://openalex.org/W1981482845","https://openalex.org/W1987560759","https://openalex.org/W1992209359","https://openalex.org/W1993777340","https://openalex.org/W1994371839","https://openalex.org/W2015305444","https://openalex.org/W2024877815","https://openalex.org/W2029661547","https://openalex.org/W2030701857","https://openalex.org/W2035805127","https://openalex.org/W2048114639","https://openalex.org/W2049865920","https://openalex.org/W2055266364","https://openalex.org/W2056235572","https://openalex.org/W2062812464","https://openalex.org/W2068097404","https://openalex.org/W2082938093","https://openalex.org/W2094738656","https://openalex.org/W2102712098","https://openalex.org/W2103339739","https://openalex.org/W2104557913","https://openalex.org/W2108500395","https://openalex.org/W2114488753","https://openalex.org/W2117143698","https://openalex.org/W2120865327","https://openalex.org/W2122373075","https://openalex.org/W2136119275","https://openalex.org/W2143485915","https://openalex.org/W2158872082","https://openalex.org/W2162161862","https://openalex.org/W2162695795","https://openalex.org/W2165804793","https://openalex.org/W2184829772","https://openalex.org/W2411356853","https://openalex.org/W2469393867","https://openalex.org/W2567734268","https://openalex.org/W4231501444"],"related_works":["https://openalex.org/W604033581","https://openalex.org/W2588611810","https://openalex.org/W6926687433","https://openalex.org/W2760429290","https://openalex.org/W2074205216","https://openalex.org/W3210292658","https://openalex.org/W2173836020","https://openalex.org/W2404503761","https://openalex.org/W4234207199","https://openalex.org/W1496085737"],"abstract_inverted_index":{"Although":[0],"there":[1,268],"is":[2,242,264,269],"a":[3,47,62,76,136,168,180,200,210,270],"large":[4],"body":[5],"of":[6,12,21,29,45,57,74,104,124,182,224,232,252,260,284,303],"research":[7],"literature":[8],"concerning":[9],"the":[10,27,43,55,81,102,118,122,173,194,243,250,258,261,304,310],"impact":[11,28,44,82,251],"childhood":[13,30],"chronic":[14,237],"illness":[15,195,305],"on":[16,26,51,86,117,160,249,254,273],"family":[17,52,87,125,155,187,215,255],"relationships,":[18],"very":[19],"little":[20],"this":[22,83,225,241],"has":[23,84],"specifically":[24],"focussed":[25,159],"Chronic":[31],"Fatigue":[32],"Syndrome/Myalgic":[33],"Encephalopathy":[34],"(CFS/ME).":[35],"The":[36,98,222],"current":[37],"study":[38,60,226,245],"therefore":[39],"aims":[40],"to":[41,69,101,170,246,296,298,308],"investigate":[42],"having":[46,75],"child":[48,77],"with":[49,78,230,286],"CFS/ME":[50,79,253,287],"relationships":[53,216,256],"from":[54,172,257],"perspective":[56,259],"parents.":[58],"This":[59],"takes":[61],"qualitative":[63],"approach.":[64],"Semi-structured":[65],"interviews":[66],"were":[67,91],"used":[68],"explore":[70],"18":[71],"parents\u2019":[72],"experiences":[73],"and":[80,93,109,114,127,139,147,193,212,263,276,306],"had":[85,134,157,217],"relationships.":[88],"Interview":[89],"data":[90],"transcribed":[92],"analysed":[94],"using":[95],"thematic":[96],"analysis.":[97],"analysis":[99],"led":[100],"identification":[103],"5":[105],"main":[106],"themes:":[107],"\u201cLong":[108],"Difficult":[110],"Journey\u201d,":[111],"\u201cUncertainty\u201d,":[112],"\u201cIsolation":[113],"Restriction\u201d,":[115],"\u201cFocus":[116],"unwell":[119,162],"person":[120],"at":[121,300],"expense":[123],"life\u201d":[126],"\u201cParental":[128],"roles\u201d.":[129],"They":[130,143,175],"felt":[131,141,144],"that":[132,165,214,267,282],"life":[133,156],"become":[135,158],"constant":[137],"struggle":[138],"often":[140,190],"exhausted.":[142],"uncertainty,":[145],"isolation":[146],"restriction.":[148],"These":[149],"parents":[150,205,283],"talked":[151],"about":[152],"feeling":[153,213],"like":[154],"their":[161,184],"child,":[163],"such":[164,292],"some":[166,220],"expressed":[167],"need":[169,289],"escape":[171],"situation.":[174],"also":[176,206],"described":[177,207],"how,":[178],"as":[179,199,209,293,295],"consequence":[181],"managing":[183],"child\u2019s":[185],"CFS/ME,":[186],"members":[188],"could":[189,196],"feel":[191],"marginalised":[192],"be":[197,280],"seen":[198],"destructive":[201],"force.":[202],"However,":[203],"many":[204],"working":[208],"team":[211],"benefitted":[218],"in":[219,228,266],"way.":[221],"results":[223],"are":[227],"line":[229],"findings":[231],"other":[233,236],"studies":[234],"into":[235],"illnesses.":[238],"In":[239],"addition,":[240],"first":[244],"focus":[247,272],"exclusively":[248],"parents,":[262],"unique":[265],"dual":[271],"both":[274],"mothers":[275],"fathers.":[277],"Clinicians":[278],"should":[279],"aware":[281],"children":[285],"may":[288],"additional":[290],"support,":[291],"information":[294],"what":[297],"expect":[299],"various":[301],"stages":[302],"where":[307],"access":[309],"relevant":[311],"support.":[312]},"counts_by_year":[{"year":2021,"cited_by_count":1}],"updated_date":"2026-11-07T11:25:07.637180","created_date":"2016-06-24T00:00:00"}