{"id":"https://openalex.org/W7215102437","doi":"https://doi.org/10.2147/opth.s590334","title":"Caregiver-Reported Stressors Involved in Caring for a Child with Optic Nerve Hypoplasia","display_name":"Caregiver-Reported Stressors Involved in Caring for a Child with Optic Nerve Hypoplasia","publication_year":2026,"publication_date":"2026-10-01","ids":{"openalex":"https://openalex.org/W7215102437","doi":"https://doi.org/10.2147/opth.s590334","pmid":"https://pubmed.ncbi.nlm.nih.gov/42841157","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/13641831"},"language":"en","primary_location":{"id":"doi:10.2147/opth.s590334","doi":"https://doi.org/10.2147/opth.s590334","is_oa":true,"landing_page_url":"https://doi.org/10.2147/opth.s590334","pdf_url":"https://www.dovepress.com/article/download/120458","source":{"id":"https://openalex.org/S105513329","display_name":"Clinical ophthalmology","issn_l":"1177-5467","issn":["1177-5467","1177-5483"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["anvur-scientific","cwts-core","doaj","doyens","jufo-1","ki-jl-1","norway-1","oarl","poland-100","russia-white-list-2"],"host_organization":"https://openalex.org/P4310320348","host_organization_name":"Dove Medical Press","host_organization_lineage":["https://openalex.org/P4310320348","https://openalex.org/P4310320547"],"host_organization_lineage_names":["Dove Medical Press","Taylor & Francis"],"type":"journal"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Clinical Ophthalmology","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","doaj","pubmed"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://www.dovepress.com/article/download/120458","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5092725057","display_name":"Ema V. Karakoleva","orcid":"https://orcid.org/0000-0002-9909-5729","observed_orcids":["https://orcid.org/0000-0002-9909-5729"]},"institutions":[{"id":"https://openalex.org/I130769515","display_name":"Pennsylvania State University","ror":"https://ror.org/04p491231","country_code":"US","type":"education","lineage":["https://openalex.org/I130769515"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Ema V Karakoleva","raw_affiliation_strings":["Department of Ophthalmology, Penn State College of Medicine, Hershey, PA, USA"],"raw_orcid":"https://orcid.org/0000-0002-9909-5729","affiliations":[{"raw_affiliation_string":"Department of Ophthalmology, Penn State College of Medicine, Hershey, PA, USA","institution_ids":["https://openalex.org/I130769515"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5153960415","display_name":"Olivia Waldron","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I27837315","display_name":"University of Michigan","ror":"https://ror.org/00jmfr291","country_code":"US","type":"education","lineage":["https://openalex.org/I27837315"]},{"id":"https://openalex.org/I4210114445","display_name":"Michigan Medicine","ror":"https://ror.org/01zcpa714","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210114445"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Olivia Waldron","raw_affiliation_strings":["Department of Plastic Surgery, University of Michigan Medical School, Ann Arbor, MI, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Plastic Surgery, University of Michigan Medical School, Ann Arbor, MI, USA","institution_ids":["https://openalex.org/I27837315","https://openalex.org/I4210114445"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5046678065","display_name":"Allen R. Kunselman","orcid":"https://orcid.org/0000-0001-8485-2953","observed_orcids":["https://orcid.org/0000-0001-8485-2953"]},"institutions":[{"id":"https://openalex.org/I130769515","display_name":"Pennsylvania State University","ror":"https://ror.org/04p491231","country_code":"US","type":"education","lineage":["https://openalex.org/I130769515"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Allen R Kunselman","raw_affiliation_strings":["Department of Public Health Sciences, Penn State College of Medicine, Hershey, PA, USA"],"raw_orcid":"https://orcid.org/0000-0001-8485-2953","affiliations":[{"raw_affiliation_string":"Department of Public Health Sciences, Penn State College of Medicine, Hershey, PA, USA","institution_ids":["https://openalex.org/I130769515"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5000808944","display_name":"Amanda L. Ely","orcid":"https://orcid.org/0000-0002-3041-0460","observed_orcids":["https://orcid.org/0000-0002-3041-0460"]},"institutions":[{"id":"https://openalex.org/I130769515","display_name":"Pennsylvania State University","ror":"https://ror.org/04p491231","country_code":"US","type":"education","lineage":["https://openalex.org/I130769515"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Amanda L Ely","raw_affiliation_strings":["Department of Ophthalmology, Penn State College of Medicine, Hershey, PA, USA"],"raw_orcid":"https://orcid.org/0000-0002-3041-0460","affiliations":[{"raw_affiliation_string":"Department of Ophthalmology, Penn State College of Medicine, Hershey, PA, USA","institution_ids":["https://openalex.org/I130769515"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":["https://openalex.org/A5000808944"],"corresponding_institution_ids":["https://openalex.org/I130769515"],"apc_list":{"value":2320,"currency":"USD","value_usd":2320},"apc_paid":{"value":2320,"currency":"USD","value_usd":2320},"fwci":0.0,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":{"value":0.75802386,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"Volume 20","issue":null,"first_page":"1","last_page":"14"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.6592000126838684,"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":0.6592000126838684,"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/T12989","display_name":"Ocular Disorders and Treatments","score":0.10689999908208847,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T13111","display_name":"Nursing care and research","score":0.07590000331401825,"subfield":{"id":"https://openalex.org/subfields/3611","display_name":"Pharmacy"},"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/optic-nerve-hypoplasia","display_name":"optic nerve hypoplasia","score":0.9869999885559082},{"id":"https://openalex.org/keywords/caregiver-stress","display_name":"caregiver stress","score":0.949999988079071},{"id":"https://openalex.org/keywords/caregiver-burden","display_name":"caregiver burden","score":0.5870000123977661},{"id":"https://openalex.org/keywords/family-caregiving","display_name":"family caregiving","score":0.6029999852180481},{"id":"https://openalex.org/keywords/parental-stressors","display_name":"parental stressors","score":0.47200000286102295}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.9315000176429749},{"id":"https://openalex.org/C2776617768","wikidata":"https://www.wikidata.org/wiki/Q7098797","display_name":"Optic nerve hypoplasia","level":3,"score":0.6628999710083008},{"id":"https://openalex.org/C2780837183","wikidata":"https://www.wikidata.org/wiki/Q186029","display_name":"Optic nerve","level":2,"score":0.6301000118255615},{"id":"https://openalex.org/C118487528","wikidata":"https://www.wikidata.org/wiki/Q161437","display_name":"Ophthalmology","level":1,"score":0.5090000033378601},{"id":"https://openalex.org/C2780327212","wikidata":"https://www.wikidata.org/wiki/Q1568160","display_name":"Hypoplasia","level":2,"score":0.4740999937057495},{"id":"https://openalex.org/C125370674","wikidata":"https://www.wikidata.org/wiki/Q1527480","display_name":"Stressor","level":2,"score":0.4332999885082245},{"id":"https://openalex.org/C2910842333","wikidata":"https://www.wikidata.org/wiki/Q186029","display_name":"Optic nerve diseases","level":3,"score":0.3474999964237213},{"id":"https://openalex.org/C2777093970","wikidata":"https://www.wikidata.org/wiki/Q169342","display_name":"Retina","level":2,"score":0.30820000171661377},{"id":"https://openalex.org/C2983497740","wikidata":"https://www.wikidata.org/wiki/Q16873995","display_name":"Optic disk","level":3,"score":0.28690001368522644},{"id":"https://openalex.org/C119767625","wikidata":"https://www.wikidata.org/wiki/Q618211","display_name":"Optometry","level":1,"score":0.2809000015258789},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.2502000033855438}],"mesh":[],"locations_count":4,"locations":[{"id":"doi:10.2147/opth.s590334","doi":"https://doi.org/10.2147/opth.s590334","is_oa":true,"landing_page_url":"https://doi.org/10.2147/opth.s590334","pdf_url":"https://www.dovepress.com/article/download/120458","source":{"id":"https://openalex.org/S105513329","display_name":"Clinical ophthalmology","issn_l":"1177-5467","issn":["1177-5467","1177-5483"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["anvur-scientific","cwts-core","doaj","doyens","jufo-1","ki-jl-1","norway-1","oarl","poland-100","russia-white-list-2"],"host_organization":"https://openalex.org/P4310320348","host_organization_name":"Dove Medical Press","host_organization_lineage":["https://openalex.org/P4310320348","https://openalex.org/P4310320547"],"host_organization_lineage_names":["Dove Medical Press","Taylor & Francis"],"type":"journal"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Clinical Ophthalmology","raw_type":"journal-article"},{"id":"pmh:oai:pubmedcentral.nih.gov:13641831","doi":null,"is_oa":true,"landing_page_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC13641831/","pdf_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC13641831/pdf/OPTH-20-590334.pdf","source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Clin Ophthalmol","raw_type":"Text"},{"id":"pmid:42841157","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/42841157","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Clinical ophthalmology (Auckland, N.Z.)","raw_type":"Journal Article"},{"id":"pmh:oai:dovepress.com/120458","doi":null,"is_oa":true,"landing_page_url":"https://www.dovepress.com/caregiver-reported-stressors-involved-in-caring-for-a-child-with-optic-peer-reviewed-fulltext-article-OPTH","pdf_url":null,"source":{"id":"https://openalex.org/S4306401012","display_name":"Dove Medical Press (Taylor and Francis Group)","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":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"info:eu-repo/semantics/article"}],"best_oa_location":{"id":"doi:10.2147/opth.s590334","doi":"https://doi.org/10.2147/opth.s590334","is_oa":true,"landing_page_url":"https://doi.org/10.2147/opth.s590334","pdf_url":"https://www.dovepress.com/article/download/120458","source":{"id":"https://openalex.org/S105513329","display_name":"Clinical ophthalmology","issn_l":"1177-5467","issn":["1177-5467","1177-5483"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["anvur-scientific","cwts-core","doaj","doyens","jufo-1","ki-jl-1","norway-1","oarl","poland-100","russia-white-list-2"],"host_organization":"https://openalex.org/P4310320348","host_organization_name":"Dove Medical Press","host_organization_lineage":["https://openalex.org/P4310320348","https://openalex.org/P4310320547"],"host_organization_lineage_names":["Dove Medical Press","Taylor & Francis"],"type":"journal"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Clinical Ophthalmology","raw_type":"journal-article"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":1.0,"display_name":"Good health and well-being"}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[{"id":"https://openalex.org/G4906924687","display_name":null,"funder_award_id":"TR002014","funder_id":"https://openalex.org/F4320337472","funder_display_name":"National Center for Advancing Translational Sciences"},{"id":"https://openalex.org/G9000886573","display_name":"Penn State Clinical and Translational Science Institute","funder_award_id":"UL1TR002014","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"}],"funders":[{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"},{"id":"https://openalex.org/F4320337472","display_name":"National Center for Advancing Translational Sciences","ror":"https://ror.org/04pw6fb54"}],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W7215102437.pdf","grobid_xml":"https://content.openalex.org/works/W7215102437.grobid-xml"},"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W2944147882","https://openalex.org/W7094791919","https://openalex.org/W2106065095","https://openalex.org/W7214335266","https://openalex.org/W2025646519","https://openalex.org/W2976790307","https://openalex.org/W4401656964","https://openalex.org/W2918688036","https://openalex.org/W3112543996","https://openalex.org/W3014318852"],"abstract_inverted_index":{"Purpose:":[0],"To":[1],"characterize":[2],"quality":[3,274],"of":[4,12,30,46,59,88,91,109,138,158,261,275],"life":[5],"(QoL)":[6],"and":[7,22,25,37,78,81,95,98,113,148,171,228,239,258],"depressive":[8,146,277],"symptoms":[9,147,225],"among":[10,156,201],"caregivers":[11,45,157],"children":[13,47,159],"with":[14,48,127,160,174,187,231,243],"optic":[15,282],"nerve":[16,283],"hypoplasia":[17,284],"(ONH),":[18],"identify":[19],"associated":[20,126,173,186,230,242],"demographic":[21,80,96],"clinical":[23,82,94],"factors,":[24],"explore":[26],"the":[27,71,139,214,218,262],"measurement":[28,99],"properties":[29,100],"a":[31,52,79,106],"modified":[32,53,215,233,263],"caregiver":[33,253,269],"QoL":[34],"instrument.":[35],"Patients":[36],"Methods:":[38],"This":[39],"cross-sectional":[40],"survey":[41],"included":[42],"20":[43,92],"primary":[44,118],"ONH":[49,164,238,256],"who":[50],"completed":[51],"20-item":[54],"Caregiver\u2019s":[55],"Congenital":[56],"Glaucoma":[57],"Quality":[58],"Life":[60],"(CarCGQoL)":[61],"questionnaire":[62],"(0\u2013":[63],"40;":[64],"higher":[65,188],"scores":[66,122,129,153,190],"indicate":[67],"better":[68],"self-reported":[69],"QoL),":[70],"Patient":[72],"Health":[73],"Questionnaire-9":[74],"(PHQ-9;":[75],"0\u2013":[76],"27),":[77],"survey.":[83],"CarCGQoL":[84,119,152,234,264],"analyses":[85,120],"required":[86],"completion":[87],"\u2265":[89],"16":[90],"items;":[93],"associations":[97],"were":[101,115,123,154,172,226,241],"explored.":[102],"Results:":[103],"Caregivers":[104],"had":[105],"mean":[107],"age":[108],"42.7\u00b1":[110],"11.7":[111],"years,":[112],"75%":[114],"mothers.":[116],"In":[117],"(n=19),":[121],"strongly":[124],"inversely":[125],"PHQ-9":[128,189],"(":[130,176,191],"r":[131,177,192],"s":[132],"=\u2212":[133,180],"0.73,":[134],"p<":[135],"0.001);":[136],"50%":[137],"full":[140],"cohort":[141],"reported":[142],"at":[143],"least":[144],"mild":[145],"25%":[149],"moderate-or-greater":[150],"symptoms.":[151],"lower":[155,232],"bilateral":[161,237],"vs":[162,167],"unilateral":[163],"(19.8\u00b1":[165],"7.6":[166],"29.9\u00b1":[168],"10.3,":[169],"p=0.03)":[170],"nystagmus":[175,183,240],"p":[178,193],"\u03b2":[179,194],"0.55,":[181],"p=0.01);":[182],"was":[184,199],"also":[185],"=0.63,":[195],"p=0.003).":[196],"Internal":[197],"consistency":[198],"high":[200],"complete":[202],"responders":[203],"(Cronbach\u2019s":[204],"\u03b1=0.93),":[205],"although":[206],"exploratory":[207],"Rasch":[208],"analysis":[209],"identified":[210],"greatest":[211],"misfit":[212],"for":[213],"item":[216],"addressing":[217],"child\u2019s":[219],"ability":[220],"to":[221,252],"see.":[222],"Conclusion:":[223],"Depressive":[224],"common":[227],"closely":[229],"scores,":[235],"while":[236],"poorer":[244],"caregiver-reported":[245],"outcomes.":[246],"These":[247],"findings":[248],"support":[249],"greater":[250],"attention":[251],"well-being":[254],"in":[255,265],"care":[257],"further":[259],"evaluation":[260],"larger":[266],"cohorts.":[267],"Keywords:":[268],"burden,":[270],"pediatric":[271],"visual":[272],"impairment,":[273],"life,":[276],"symptoms,":[278],"nystagmus,":[279],"rasch":[280],"analysis,":[281]},"counts_by_year":[],"updated_date":"2026-10-29T09:56:32.521200","created_date":"2026-10-02T00:00:00"}
