{"id":"https://openalex.org/W7224461835","doi":"https://doi.org/10.3390/disabilities6060085","title":"Understanding the Physical, Psychosocial and Health Information Support Needs of Family Caregivers of People with Spinal Cord Injury Living in the Community: A Scoping Review","display_name":"Understanding the Physical, Psychosocial and Health Information Support Needs of Family Caregivers of People with Spinal Cord Injury Living in the Community: A Scoping Review","publication_year":2026,"publication_date":"2026-10-29","ids":{"openalex":"https://openalex.org/W7224461835","doi":"https://doi.org/10.3390/disabilities6060085"},"language":"en","primary_location":{"id":"doi:10.3390/disabilities6060085","doi":"https://doi.org/10.3390/disabilities6060085","is_oa":true,"landing_page_url":"https://doi.org/10.3390/disabilities6060085","pdf_url":null,"source":{"id":"https://openalex.org/S4210195220","display_name":"Disabilities","issn_l":"2673-7272","issn":["2673-7272"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["anvur-class-a","anvur-scientific","cwts-core","doaj","norway-1"],"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":"Disabilities","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref","doaj"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://doi.org/10.3390/disabilities6060085","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5054063292","display_name":"Linda Barclay","orcid":"https://orcid.org/0000-0001-9979-2201","observed_orcids":["https://orcid.org/0000-0001-9979-2201"]},"institutions":[{"id":"https://openalex.org/I56590836","display_name":"Monash University","ror":"https://ror.org/02bfwt286","country_code":"AU","type":"education","lineage":["https://openalex.org/I56590836"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Linda Barclay","raw_affiliation_strings":["Occupational Therapy Department, Monash University, Frankston, VIC 3199, Australia"],"raw_orcid":"https://orcid.org/0000-0001-9979-2201","affiliations":[{"raw_affiliation_string":"Occupational Therapy Department, Monash University, Frankston, VIC 3199, Australia","institution_ids":["https://openalex.org/I56590836"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160130987","display_name":"Anjali Barnes","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I56590836","display_name":"Monash University","ror":"https://ror.org/02bfwt286","country_code":"AU","type":"education","lineage":["https://openalex.org/I56590836"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Anjali Barnes","raw_affiliation_strings":["Occupational Therapy Department, Monash University, Frankston, VIC 3199, Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Occupational Therapy Department, Monash University, Frankston, VIC 3199, Australia","institution_ids":["https://openalex.org/I56590836"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160148839","display_name":"Linh Lan Nguyen","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I56590836","display_name":"Monash University","ror":"https://ror.org/02bfwt286","country_code":"AU","type":"education","lineage":["https://openalex.org/I56590836"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Linh Lan Nguyen","raw_affiliation_strings":["Occupational Therapy Department, Monash University, Frankston, VIC 3199, Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Occupational Therapy Department, Monash University, Frankston, VIC 3199, Australia","institution_ids":["https://openalex.org/I56590836"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5160136308","display_name":"Zidanio A. Valente","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I56590836","display_name":"Monash University","ror":"https://ror.org/02bfwt286","country_code":"AU","type":"education","lineage":["https://openalex.org/I56590836"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Zidanio A. Valente","raw_affiliation_strings":["Occupational Therapy Department, Monash University, Frankston, VIC 3199, Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Occupational Therapy Department, Monash University, Frankston, VIC 3199, Australia","institution_ids":["https://openalex.org/I56590836"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":["https://openalex.org/A5054063292"],"corresponding_institution_ids":["https://openalex.org/I56590836"],"apc_list":{"value":1000,"currency":"CHF","value_usd":1207},"apc_paid":{"value":1000,"currency":"CHF","value_usd":1207},"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.87668205,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"6","issue":"6","first_page":"85","last_page":"85"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T13111","display_name":"Nursing care and research","score":0.9854000210762024,"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"}},"topics":[{"id":"https://openalex.org/T13111","display_name":"Nursing care and research","score":0.9854000210762024,"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/T10925","display_name":"Spinal Cord Injury Research","score":0.00989999994635582,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"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":0.0017000000225380063,"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/spinal-cord-injury","display_name":"spinal cord injury","score":0.9309999942779541},{"id":"https://openalex.org/keywords/family-caregivers","display_name":"family caregivers","score":0.9819999933242798},{"id":"https://openalex.org/keywords/informal-caregivers","display_name":"informal caregivers","score":0.8009999990463257},{"id":"https://openalex.org/keywords/caregiver-support-needs","display_name":"caregiver support needs","score":0.8939999938011169},{"id":"https://openalex.org/keywords/caregiver-physical-health","display_name":"caregiver physical health","score":0.7480000257492065},{"id":"https://openalex.org/keywords/health-information-needs","display_name":"health information needs","score":0.8560000061988831},{"id":"https://openalex.org/keywords/caregiver-fatigue","display_name":"caregiver fatigue","score":0.7710000276565552},{"id":"https://openalex.org/keywords/sleep-disturbance","display_name":"sleep disorders","score":0.8429999947547913},{"id":"https://openalex.org/keywords/musculoskeletal-pain","display_name":"musculoskeletal pain","score":0.9649999737739563},{"id":"https://openalex.org/keywords/discharge-planning","display_name":"discharge planning","score":0.7670000195503235},{"id":"https://openalex.org/keywords/caregiver-confidence","display_name":"caregiver confidence","score":0.593999981880188},{"id":"https://openalex.org/keywords/social-participation-health-and-rehabilitation","display_name":"social participation (health and rehabilitation)","score":0.5429999828338623},{"id":"https://openalex.org/keywords/loneliness","display_name":"loneliness","score":0.9020000100135803},{"id":"https://openalex.org/keywords/emotional-burden","display_name":"emotional burden","score":0.7239999771118164},{"id":"https://openalex.org/keywords/caregiver-interventions","display_name":"caregiver interventions","score":0.335999995470047}],"concepts":[{"id":"https://openalex.org/C150966472","wikidata":"https://www.wikidata.org/wiki/Q3410145","display_name":"Psychosocial","level":2,"score":0.7886999845504761},{"id":"https://openalex.org/C2779998236","wikidata":"https://www.wikidata.org/wiki/Q223270","display_name":"Loneliness","level":2,"score":0.7120000123977661},{"id":"https://openalex.org/C2778087770","wikidata":"https://www.wikidata.org/wiki/Q2297111","display_name":"Social support","level":2,"score":0.6642000079154968},{"id":"https://openalex.org/C2778334475","wikidata":"https://www.wikidata.org/wiki/Q1415275","display_name":"Spinal cord injury","level":3,"score":0.6164000034332275},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.5834000110626221},{"id":"https://openalex.org/C2778900529","wikidata":"https://www.wikidata.org/wiki/Q2827779","display_name":"Family caregivers","level":2,"score":0.5766000151634216},{"id":"https://openalex.org/C122980154","wikidata":"https://www.wikidata.org/wiki/Q205555","display_name":"Feeling","level":2,"score":0.5221999883651733},{"id":"https://openalex.org/C27415008","wikidata":"https://www.wikidata.org/wiki/Q7256382","display_name":"Psychological intervention","level":2,"score":0.4950999915599823},{"id":"https://openalex.org/C2780665704","wikidata":"https://www.wikidata.org/wiki/Q959298","display_name":"Intervention (counseling)","level":2,"score":0.44690001010894775},{"id":"https://openalex.org/C2781094116","wikidata":"https://www.wikidata.org/wiki/Q1569083","display_name":"Peer support","level":2,"score":0.4426000118255615},{"id":"https://openalex.org/C2779017400","wikidata":"https://www.wikidata.org/wiki/Q5433390","display_name":"Family support","level":2,"score":0.42750000953674316},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.40619999170303345},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.38190001249313354},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.3382999897003174},{"id":"https://openalex.org/C79544238","wikidata":"https://www.wikidata.org/wiki/Q423243","display_name":"Activities of daily living","level":2,"score":0.3325999975204468},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.32589998841285706},{"id":"https://openalex.org/C2776893239","wikidata":"https://www.wikidata.org/wiki/Q1778765","display_name":"Social isolation","level":2,"score":0.3122999966144562},{"id":"https://openalex.org/C56995899","wikidata":"https://www.wikidata.org/wiki/Q1126687","display_name":"Focus group","level":2,"score":0.2939000129699707},{"id":"https://openalex.org/C3017944768","wikidata":"https://www.wikidata.org/wiki/Q1450463","display_name":"Poison control","level":2,"score":0.2872999906539917},{"id":"https://openalex.org/C187155963","wikidata":"https://www.wikidata.org/wiki/Q629029","display_name":"Occupational safety and health","level":2,"score":0.28610000014305115},{"id":"https://openalex.org/C166735990","wikidata":"https://www.wikidata.org/wiki/Q1750812","display_name":"Human factors and ergonomics","level":3,"score":0.2842999994754791},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.28299999237060547},{"id":"https://openalex.org/C526869908","wikidata":"https://www.wikidata.org/wiki/Q3298118","display_name":"Suicide prevention","level":3,"score":0.28049999475479126},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.27970001101493835},{"id":"https://openalex.org/C2778818304","wikidata":"https://www.wikidata.org/wiki/Q1819478","display_name":"Rehabilitation","level":2,"score":0.2728999853134155},{"id":"https://openalex.org/C78999398","wikidata":"https://www.wikidata.org/wiki/Q2899888","display_name":"Information needs","level":2,"score":0.2700999975204468},{"id":"https://openalex.org/C190385971","wikidata":"https://www.wikidata.org/wiki/Q373494","display_name":"Injury prevention","level":3,"score":0.26019999384880066},{"id":"https://openalex.org/C3018916638","wikidata":"https://www.wikidata.org/wiki/Q752118","display_name":"Emotional support","level":3,"score":0.2538999915122986},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.2529999911785126}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.3390/disabilities6060085","doi":"https://doi.org/10.3390/disabilities6060085","is_oa":true,"landing_page_url":"https://doi.org/10.3390/disabilities6060085","pdf_url":null,"source":{"id":"https://openalex.org/S4210195220","display_name":"Disabilities","issn_l":"2673-7272","issn":["2673-7272"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["anvur-class-a","anvur-scientific","cwts-core","doaj","norway-1"],"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":"Disabilities","raw_type":"journal-article"}],"best_oa_location":{"id":"doi:10.3390/disabilities6060085","doi":"https://doi.org/10.3390/disabilities6060085","is_oa":true,"landing_page_url":"https://doi.org/10.3390/disabilities6060085","pdf_url":null,"source":{"id":"https://openalex.org/S4210195220","display_name":"Disabilities","issn_l":"2673-7272","issn":["2673-7272"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["anvur-class-a","anvur-scientific","cwts-core","doaj","norway-1"],"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":"Disabilities","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.9763000011444092,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":41,"referenced_works":["https://openalex.org/W2051959539","https://openalex.org/W2075950485","https://openalex.org/W2077632054","https://openalex.org/W2082392377","https://openalex.org/W2169568232","https://openalex.org/W2286627459","https://openalex.org/W2311735645","https://openalex.org/W2605814189","https://openalex.org/W2795982456","https://openalex.org/W2891378911","https://openalex.org/W2914907392","https://openalex.org/W2950018467","https://openalex.org/W2987671053","https://openalex.org/W2994862960","https://openalex.org/W2995211792","https://openalex.org/W3000855818","https://openalex.org/W3003576350","https://openalex.org/W3007043333","https://openalex.org/W3012698778","https://openalex.org/W3014910427","https://openalex.org/W3026611970","https://openalex.org/W3092419658","https://openalex.org/W3097327057","https://openalex.org/W3097863683","https://openalex.org/W3121035655","https://openalex.org/W3137850736","https://openalex.org/W3191399998","https://openalex.org/W4206597891","https://openalex.org/W4213141481","https://openalex.org/W4229008405","https://openalex.org/W4385799062","https://openalex.org/W4391887849","https://openalex.org/W4392291046","https://openalex.org/W4395098280","https://openalex.org/W4399382524","https://openalex.org/W4402626398","https://openalex.org/W4407141528","https://openalex.org/W4408191345","https://openalex.org/W4409086302","https://openalex.org/W4412097167","https://openalex.org/W4412492596"],"related_works":["https://openalex.org/W4377194050","https://openalex.org/W4309560804","https://openalex.org/W1773386976","https://openalex.org/W4395000463","https://openalex.org/W2082392377","https://openalex.org/W2798260208","https://openalex.org/W2914907392","https://openalex.org/W2795982456","https://openalex.org/W2043927276","https://openalex.org/W4386336814"],"abstract_inverted_index":{"Informal":[0],"caregivers":[1,70,162,199],"of":[2,31,46,68,71,123,150,173,200],"people":[3,72,201],"with":[4,73,93,125,158,202],"spinal":[5,74,189,203],"cord":[6,75,190,204],"injury":[7,76,144,191],"are":[8,36,186],"most":[9,119],"commonly":[10,120],"family":[11],"members.":[12],"Providing":[13],"ongoing":[14],"care":[15],"and":[16,26,29,63,91,109,130,134,140,155,169,196],"support":[17,42,66,104,107,112,197],"can":[18],"have":[19],"a":[20],"significant":[21],"impact":[22,116],"on":[23],"caregivers\u2019":[24],"physical":[25,103,148],"psychological":[27],"health,":[28],"quality":[30],"life.":[32],"Despite":[33],"this":[34,55],"there":[35],"few":[37],"evidence-based":[38],"interventions":[39],"available":[40],"that":[41,183],"the":[43,60,79,118],"specific":[44],"needs":[45,67],"these":[47],"caregivers.":[48],"In":[49],"order":[50],"to":[51,58,194],"inform":[52],"intervention":[53],"development,":[54],"review":[56,180],"aimed":[57],"explore":[59],"physical,":[61],"psychosocial,":[62],"health":[64,110],"information":[65,111],"informal":[69,198],"living":[77],"in":[78],"community.":[80],"Nine":[81],"databases":[82],"were":[83,98,145],"searched":[84],"for":[85,175],"peer-reviewed":[86],"publications,":[87],"published":[88],"between":[89],"2010":[90],"2026,":[92],"23":[94],"publications":[95],"included.":[96],"Data":[97],"categorized":[99],"into":[100],"three":[101],"domains:":[102],"needs,":[105,108],"psychosocial":[106,115],"needs.":[113],"The":[114,179],"was":[117],"identified":[121,146],"area":[122],"need,":[124],"identity":[126],"disruption,":[127],"emotional":[128],"burden,":[129],"reduced":[131],"social":[132],"participation":[133],"loneliness":[135],"reported.":[136],"Fatigue,":[137],"sleep":[138],"disturbance,":[139],"musculoskeletal":[141],"pain":[142],"or":[143],"as":[147],"impacts":[149],"caregiving.":[151],"Inadequate":[152],"discharge":[153],"planning":[154],"poor":[156],"communication":[157],"healthcare":[159],"professionals":[160],"left":[161],"feeling":[163],"they":[164],"lacked":[165],"clear,":[166],"practical":[167],"knowledge":[168],"had":[170],"low":[171],"levels":[172],"confidence":[174],"their":[176],"caring":[177],"role.":[178],"results":[181],"indicate":[182],"more":[184],"efforts":[185],"needed":[187],"by":[188],"specialist":[192],"centres":[193],"prepare":[195],"injury.":[205]},"counts_by_year":[],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2026-10-30T00:00:00"}