{"id":"https://openalex.org/W4390733678","doi":"https://doi.org/10.46804/2641-2225.1169","title":"Barriers to Care for Children with Cerebral Palsy in the Rural State of Maine: A Mixed-Methods Study","display_name":"Barriers to Care for Children with Cerebral Palsy in the Rural State of Maine: A Mixed-Methods Study","publication_year":2024,"publication_date":"2024-01-10","ids":{"openalex":"https://openalex.org/W4390733678","doi":"https://doi.org/10.46804/2641-2225.1169"},"language":"en","primary_location":{"id":"doi:10.46804/2641-2225.1169","doi":"https://doi.org/10.46804/2641-2225.1169","is_oa":true,"landing_page_url":"https://doi.org/10.46804/2641-2225.1169","pdf_url":"https://knowledgeconnection.mainehealth.org/cgi/viewcontent.cgi?article=1169&context=jmmc","source":{"id":"https://openalex.org/S4210178567","display_name":"Journal of Maine Medical Center","issn_l":"2641-2225","issn":["2641-2225"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj"],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Maine Medical Center","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","doaj"],"open_access":{"is_oa":true,"oa_status":"diamond","oa_url":"https://knowledgeconnection.mainehealth.org/cgi/viewcontent.cgi?article=1169&context=jmmc","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5093702502","display_name":"Rayne L Whitten","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I121934306","display_name":"Tufts University","ror":"https://ror.org/05wvpxv85","country_code":"US","type":"education","lineage":["https://openalex.org/I121934306"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Rayne L Whitten","raw_affiliation_strings":["Tufts University School of Medicine, Maine Track","Tufts University School of Medicine, Maine Track, Boston, Massachusetts,"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Tufts University School of Medicine, Maine Track","institution_ids":["https://openalex.org/I121934306"]},{"raw_affiliation_string":"Tufts University School of Medicine, Maine Track, Boston, Massachusetts,","institution_ids":["https://openalex.org/I121934306"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5088854818","display_name":"Anya J. Cutler","orcid":"https://orcid.org/0000-0003-3439-9606","observed_orcids":["https://orcid.org/0000-0003-3439-9606"]},"institutions":[{"id":"https://openalex.org/I4210102705","display_name":"MaineHealth","ror":"https://ror.org/017xncd55","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210102705"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Anya K Cutler","raw_affiliation_strings":["MaineHealth Institute for Research, Center for Interdisciplinary Population and Health Research","Center for Interdisciplinary Population and Health Research, MaineHealth Institute for Research, Portland, Maine,"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"MaineHealth Institute for Research, Center for Interdisciplinary Population and Health Research","institution_ids":["https://openalex.org/I4210102705"]},{"raw_affiliation_string":"Center for Interdisciplinary Population and Health Research, MaineHealth Institute for Research, Portland, Maine,","institution_ids":["https://openalex.org/I4210102705"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5002898158","display_name":"Alexa Kanwit Craig","orcid":"https://orcid.org/0000-0002-6477-3390","observed_orcids":["https://orcid.org/0000-0002-6477-3390"]},"institutions":[{"id":"https://openalex.org/I1334536514","display_name":"Maine Medical Center","ror":"https://ror.org/03g5f5777","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1334536514"]},{"id":"https://openalex.org/I4210123774","display_name":"Maine Medical Center","ror":"https://ror.org/034c1gc25","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210102705","https://openalex.org/I4210123774"]},{"id":"https://openalex.org/I4210157102","display_name":"Barbara Bush Children\u2019s Hospital","ror":"https://ror.org/04pd4jr17","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210102705","https://openalex.org/I4210123774","https://openalex.org/I4210157102"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Alexa K Craig","raw_affiliation_strings":["Division of Pediatric Neurology, Barbara Bush Children\u2019s Hospital at Maine Medical Center","Division of Pediatric Neurology, Barbara Bush Children's Hospital, Maine Medical Center, Portland, Maine"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Division of Pediatric Neurology, Barbara Bush Children\u2019s Hospital at Maine Medical Center","institution_ids":["https://openalex.org/I1334536514","https://openalex.org/I4210123774","https://openalex.org/I4210157102"]},{"raw_affiliation_string":"Division of Pediatric Neurology, Barbara Bush Children's Hospital, Maine Medical Center, Portland, Maine","institution_ids":["https://openalex.org/I1334536514","https://openalex.org/I4210123774","https://openalex.org/I4210157102"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":["https://openalex.org/A5093702502"],"corresponding_institution_ids":["https://openalex.org/I121934306"],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":{"value":0.00304932,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"6","issue":"1","first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11097","display_name":"Cerebral Palsy and Movement Disorders","score":0.9897000193595886,"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/T11097","display_name":"Cerebral Palsy and Movement Disorders","score":0.9897000193595886,"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":0.005400000140070915,"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":0.00139999995008111,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/cerebral-palsy","display_name":"cerebral palsy","score":0.9919999837875366},{"id":"https://openalex.org/keywords/children","display_name":"children","score":0.4749999940395355},{"id":"https://openalex.org/keywords/barriers-to-care","display_name":"barriers to care","score":0.828000009059906},{"id":"https://openalex.org/keywords/hip-surveillance","display_name":"hip surveillance","score":0.8330000042915344},{"id":"https://openalex.org/keywords/rural-health","display_name":"rural health","score":0.7379999756813049},{"id":"https://openalex.org/keywords/distance-to-care","display_name":"distance to care","score":0.7400000095367432},{"id":"https://openalex.org/keywords/financial-barriers","display_name":"financial barriers","score":0.460999995470047},{"id":"https://openalex.org/keywords/guideline-adherence","display_name":"guideline adherence","score":0.515999972820282},{"id":"https://openalex.org/keywords/maine","display_name":"Maine","score":0.41200000047683716}],"concepts":[{"id":"https://openalex.org/C2779421357","wikidata":"https://www.wikidata.org/wiki/Q210427","display_name":"Cerebral palsy","level":2,"score":0.9694880247116089},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.6410272121429443},{"id":"https://openalex.org/C68312169","wikidata":"https://www.wikidata.org/wiki/Q216685","display_name":"Orthopedic surgery","level":2,"score":0.4538499116897583},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.4187614619731903},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.39008164405822754},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.1447436809539795},{"id":"https://openalex.org/C141071460","wikidata":"https://www.wikidata.org/wiki/Q40821","display_name":"Surgery","level":1,"score":0.1021101176738739}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.46804/2641-2225.1169","doi":"https://doi.org/10.46804/2641-2225.1169","is_oa":true,"landing_page_url":"https://doi.org/10.46804/2641-2225.1169","pdf_url":"https://knowledgeconnection.mainehealth.org/cgi/viewcontent.cgi?article=1169&context=jmmc","source":{"id":"https://openalex.org/S4210178567","display_name":"Journal of Maine Medical Center","issn_l":"2641-2225","issn":["2641-2225"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj"],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Maine Medical Center","raw_type":"journal-article"}],"best_oa_location":{"id":"doi:10.46804/2641-2225.1169","doi":"https://doi.org/10.46804/2641-2225.1169","is_oa":true,"landing_page_url":"https://doi.org/10.46804/2641-2225.1169","pdf_url":"https://knowledgeconnection.mainehealth.org/cgi/viewcontent.cgi?article=1169&context=jmmc","source":{"id":"https://openalex.org/S4210178567","display_name":"Journal of Maine Medical Center","issn_l":"2641-2225","issn":["2641-2225"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj"],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Maine Medical Center","raw_type":"journal-article"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":0.9907000064849854},{"id":"https://metadata.un.org/sdg/10","display_name":"Reduced inequalities","score":0.7578999996185303}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[],"funders":[{"id":"https://openalex.org/F4320332648","display_name":"Tufts University School of Medicine","ror":"https://ror.org/05wvpxv85"}],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W4390733678.pdf","grobid_xml":"https://content.openalex.org/works/W4390733678.grobid-xml"},"referenced_works_count":23,"referenced_works":["https://openalex.org/W74346480","https://openalex.org/W1493182793","https://openalex.org/W1521578411","https://openalex.org/W1565966423","https://openalex.org/W1582698249","https://openalex.org/W1990415494","https://openalex.org/W2081345735","https://openalex.org/W2333035735","https://openalex.org/W2559515053","https://openalex.org/W2608562517","https://openalex.org/W2771695481","https://openalex.org/W2860938455","https://openalex.org/W2950732993","https://openalex.org/W2968074902","https://openalex.org/W2990796622","https://openalex.org/W3008116559","https://openalex.org/W3023639742","https://openalex.org/W3089503094","https://openalex.org/W3107229010","https://openalex.org/W3191308269","https://openalex.org/W3197314392","https://openalex.org/W4247569674","https://openalex.org/W4298108881"],"related_works":["https://openalex.org/W2860938455","https://openalex.org/W2950732993","https://openalex.org/W2751200311","https://openalex.org/W2331710851","https://openalex.org/W4248383651","https://openalex.org/W2995533588","https://openalex.org/W4254300204","https://openalex.org/W4415699815","https://openalex.org/W4404328630","https://openalex.org/W7044331844"],"abstract_inverted_index":{"Introduction:":[0],"Guidelines":[1],"on":[2,72],"orthopedic":[3,181,208],"hip":[4,125,149,182],"surveillance":[5,124,150],"in":[6,54,175,216],"children":[7,48,61,144,171],"with":[8,49,62,145,153,172,213],"cerebral":[9,19,32,50,63,109,146,173,214],"palsy":[10,20,33,51,64,110,174,215],"have":[11,177],"been":[12],"published":[13],"to":[14,28,31,36,39,90,104,106,156,187,205],"minimize":[15],"the":[16,73,86,201,217],"effects":[17],"of":[18,24,47,60,143,203,220],"and":[21,35,67,80,100,120,161,167,184],"maximize":[22],"quality":[23],"life.":[25],"Researchers":[26],"aimed":[27],"identify":[29],"barriers":[30,105,191,197],"care":[34,107,209],"assess":[37],"adherence":[38],"national":[40],"hip-surveillance":[41],"guidelines":[42],"among":[43],"a":[44,55,92],"small":[45,141],"subset":[46],"who":[52],"live":[53],"rural":[56,218],"state.":[57],"Methods:":[58],"Parents":[59],"were":[65,70,82,98,111,127],"interviewed,":[66,99],"thematic":[68],"analyses":[69],"performed":[71],"recorded":[74],"transcripts.":[75],"Patient-specific":[76],"data":[77],"about":[78],"imaging":[79],"demographics":[81],"manually":[83],"extracted":[84],"from":[85],"electronic":[87],"health":[88],"record":[89],"perform":[91],"mixed-methods":[93],"analysis.":[94],"Results:":[95],"Twenty-one":[96],"parents":[97],"4":[101],"themes":[102],"related":[103,186],"for":[108,129,210],"identified:":[112],"inadequate":[113,148],"local":[114],"services,":[115],"communication":[116],"issues,":[117],"time":[118],"burdens,":[119],"financial":[121],"difficulties.":[122],"Routine":[123],"x-rays":[126],"indicated":[128],"17/21":[130],"children;":[131],"however,":[132],"12/17":[133],"(71%)":[134],"did":[135],"not":[136,178],"obtain":[137],"imaging.":[138],"In":[139],"this":[140],"group":[142],"palsy,":[147],"was":[151],"associated":[152],"greater":[154],"distance":[155],"care,":[157],"lower":[158],"household":[159],"education":[160],"income,":[162],"more":[163],"severe":[164],"functional":[165],"limitations,":[166],"rurality.":[168],"Discussion:":[169],"Many":[170],"Maine":[176],"received":[179],"optimized":[180],"surveillance,":[183],"issues":[185],"rurality":[188],"are":[189],"major":[190],"identified":[192],"by":[193],"parents.":[194],"Conclusions:":[195],"Multiple":[196],"exist":[198],"that":[199],"inhibit":[200],"ability":[202],"families":[204],"access":[206],"recommended":[207],"family":[211],"members":[212],"state":[219],"Maine.":[221]},"counts_by_year":[],"updated_date":"2026-10-16T09:59:22.235173","created_date":"2024-01-13T00:00:00"}
