{"id":"https://openalex.org/W2291208004","doi":"https://doi.org/10.1016/j.physio.2015.03.1522","title":"How is engagement in health care more than adherence or participation? Supporting adolescents living with neuromuscular and rare disease","display_name":"How is engagement in health care more than adherence or participation? Supporting adolescents living with neuromuscular and rare disease","publication_year":2015,"publication_date":"2015-05-01","ids":{"openalex":"https://openalex.org/W2291208004","doi":"https://doi.org/10.1016/j.physio.2015.03.1522","mag":"2291208004"},"language":"en","primary_location":{"id":"doi:10.1016/j.physio.2015.03.1522","doi":"https://doi.org/10.1016/j.physio.2015.03.1522","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.physio.2015.03.1522","pdf_url":null,"source":{"id":"https://openalex.org/S111121700","display_name":"Physiotherapy","issn_l":"0031-9406","issn":["0031-9406","1873-1465"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","jufo-2","ki-jl-1","medline","norway-1","poland-100","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Physiotherapy","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5082712180","display_name":"Vivienne Travlos","orcid":"https://orcid.org/0000-0002-7070-122X","observed_orcids":["https://orcid.org/0000-0002-7070-122X"]},"institutions":[{"id":"https://openalex.org/I93396115","display_name":"The University of Notre Dame Australia","ror":"https://ror.org/02stey378","country_code":"AU","type":"education","lineage":["https://openalex.org/I93396115"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"V. Travlos","raw_affiliation_strings":["University of Notre Dame Australia, School of Physiotherapy, Fremantle, Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Notre Dame Australia, School of Physiotherapy, Fremantle, Australia","institution_ids":["https://openalex.org/I93396115"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5045593878","display_name":"Jenny Anne Downs","orcid":"https://orcid.org/0000-0001-7358-9037","observed_orcids":["https://orcid.org/0000-0001-7358-9037"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"J. Downs","raw_affiliation_strings":["Telethon Kids Institute, Population Sciences, Perth, Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Telethon Kids Institute, Population Sciences, Perth, Australia","institution_ids":["https://openalex.org/I175234967"]}]},{"author_position":"middle","author":{"id":null,"display_name":"A. Wilson","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I2800419323","display_name":"Princess Margaret Hospital for Children","ror":"https://ror.org/04ec98z42","country_code":"AU","type":"healthcare","lineage":["https://openalex.org/I2799506148","https://openalex.org/I2800419323","https://openalex.org/I2800882159","https://openalex.org/I4387155440"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"A. Wilson","raw_affiliation_strings":["Princess Margaret Hospital for Children, Respiratory Medicine, Perth, Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Princess Margaret Hospital for Children, Respiratory Medicine, Perth, Australia","institution_ids":["https://openalex.org/I2800419323"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5063055274","display_name":"Shane M. Patman","orcid":"https://orcid.org/0000-0002-7476-1692","observed_orcids":["https://orcid.org/0000-0002-7476-1692"]},"institutions":[{"id":"https://openalex.org/I93396115","display_name":"The University of Notre Dame Australia","ror":"https://ror.org/02stey378","country_code":"AU","type":"education","lineage":["https://openalex.org/I93396115"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"S. Patman","raw_affiliation_strings":["University of Notre Dame Australia, School of Physiotherapy, Fremantle, Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Notre Dame Australia, School of Physiotherapy, Fremantle, Australia","institution_ids":["https://openalex.org/I93396115"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":["https://openalex.org/A5082712180"],"corresponding_institution_ids":["https://openalex.org/I93396115"],"apc_list":{"value":3480,"currency":"USD","value_usd":3480},"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.23499726,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"101","issue":null,"first_page":"e1532","last_page":"e1533"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.7660999894142151,"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"}},"topics":[{"id":"https://openalex.org/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.7660999894142151,"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"}},{"id":"https://openalex.org/T12400","display_name":"Neurogenetic and Muscular Disorders Research","score":0.17870000004768372,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"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/T11097","display_name":"Cerebral Palsy and Movement Disorders","score":0.006300000008195639,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/healthcare-engagement","display_name":"healthcare engagement","score":0.7239999771118164},{"id":"https://openalex.org/keywords/neuromuscular-disorders","display_name":"neuromuscular disorders","score":0.7770000100135803},{"id":"https://openalex.org/keywords/rare-diseases","display_name":"rare diseases","score":0.8330000042915344},{"id":"https://openalex.org/keywords/adolescents","display_name":"adolescents","score":0.9850000143051147},{"id":"https://openalex.org/keywords/treatment-adherence","display_name":"medication adherence","score":0.6370000243186951},{"id":"https://openalex.org/keywords/patient-participation","display_name":"patient participation","score":0.925000011920929},{"id":"https://openalex.org/keywords/non-ambulant-patients","display_name":"non-ambulant patients","score":0.7490000128746033},{"id":"https://openalex.org/keywords/muscle-weakness","display_name":"muscle weakness","score":0.6539999842643738}],"concepts":[{"id":"https://openalex.org/C2780247198","wikidata":"https://www.wikidata.org/wiki/Q633403","display_name":"Weakness","level":2,"score":0.7146523594856262},{"id":"https://openalex.org/C2776356578","wikidata":"https://www.wikidata.org/wiki/Q2246789","display_name":"Neuromuscular disease","level":3,"score":0.6182003021240234},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.5939078330993652},{"id":"https://openalex.org/C2776418732","wikidata":"https://www.wikidata.org/wiki/Q270421","display_name":"Muscle weakness","level":2,"score":0.5486047863960266},{"id":"https://openalex.org/C99508421","wikidata":"https://www.wikidata.org/wiki/Q2678675","display_name":"Physical medicine and rehabilitation","level":1,"score":0.4663039743900299},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.45902854204177856},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.45618996024131775},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.4524097740650177},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.3802180886268616},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.3247130513191223},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.13201367855072021},{"id":"https://openalex.org/C141071460","wikidata":"https://www.wikidata.org/wiki/Q40821","display_name":"Surgery","level":1,"score":0.0965735912322998}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1016/j.physio.2015.03.1522","doi":"https://doi.org/10.1016/j.physio.2015.03.1522","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.physio.2015.03.1522","pdf_url":null,"source":{"id":"https://openalex.org/S111121700","display_name":"Physiotherapy","issn_l":"0031-9406","issn":["0031-9406","1873-1465"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","jufo-2","ki-jl-1","medline","norway-1","poland-100","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Physiotherapy","raw_type":"journal-article"}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":1.0}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W7166736799","https://openalex.org/W4387798230","https://openalex.org/W7166669694","https://openalex.org/W2039991296","https://openalex.org/W2586330237","https://openalex.org/W2404976623","https://openalex.org/W3213481395","https://openalex.org/W7162513242","https://openalex.org/W2421516277","https://openalex.org/W2509575846"],"abstract_inverted_index":null,"counts_by_year":[],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2016-06-24T00:00:00"}