{"corpus_id":24701642,"paper_sha":"5add439ae2c6a0ef718570642967567ff13e9510","doi":"10.1016/j.amepre.2016.01.024","arxiv_id":null,"pmid":27320470,"pmcid":"PMC4916926","mag_id":2430980543,"dblp_id":null,"acl_id":null,"title":"Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research.","year":2016,"publication_date":"2016-07-01","venue":"American Journal of Preventive Medicine","journal":{"name":"American journal of preventive medicine","pages":"\n          S78-86\n        ","volume":"51 1 Suppl 1"},"journal_issn":null,"journal_title":null,"publication_types":["JournalArticle"],"pubmed_pub_types":["Journal Article","Research Support, N.I.H., Extramural","Research Support, U.S. Gov't, P.H.S."],"s2_fields_of_study":["Medicine","Sociology"],"reference_count":49,"citation_count":35,"influential_citation_count":0,"is_open_access":true,"arxiv_categories":null,"arxiv_license":null,"arxiv_journal_ref":null,"mesh_headings":[{"d":"Adolescent","mj":false,"ui":"D000293"},{"d":"Adult","mj":false,"ui":"D000328"},{"d":"Anemia, Sickle Cell","mj":true,"ui":"D000755"},{"d":"Attitude to Health","mj":false,"ui":"D001294"},{"d":"Biomedical Research","mj":true,"ui":"D035843"},{"d":"Caregivers","mj":false,"qs":[{"q":"psychology","mj":false,"ui":"Q000523"}],"ui":"D017028"},{"d":"Child","mj":false,"ui":"D002648"},{"d":"Clinical Trials as Topic","mj":true,"qs":[{"q":"psychology","mj":false,"ui":"Q000523"}],"ui":"D002986"},{"d":"Female","mj":false,"ui":"D005260"},{"d":"Humans","mj":false,"ui":"D006801"},{"d":"Male","mj":false,"ui":"D008297"},{"d":"Patient Selection","mj":false,"ui":"D018579"},{"d":"Pediatrics","mj":true,"ui":"D010372"},{"d":"Research Subjects","mj":false,"ui":"D035842"},{"d":"Stress, Psychological","mj":false,"qs":[{"q":"psychology","mj":false,"ui":"Q000523"}],"ui":"D013315"},{"d":"Surveys and Questionnaires","mj":false,"ui":"D011795"},{"d":"Trust","mj":true,"ui":"D035502"},{"d":"Young Adult","mj":false,"ui":"D055815"}],"chemicals":null,"comments_corrections":null,"source_flags":5,"s2_open_access_pdf_url":"http://www.ajpmonline.org/article/S0749379716000507/pdf","s2_open_access_landing_url":"https://www.semanticscholar.org/paper/e0babdbe7ea274e062874b2c9f3a4da13afc93f2","s2_open_access_license":"CCBYNCND","s2_open_access_status":"HYBRID","pmc_open_access_pdf_url":null,"pmc_open_access_landing_url":null,"pmc_open_access_license":null,"pmc_open_access_status":null,"unpaywall_open_access_pdf_url":null,"unpaywall_open_access_landing_url":null,"unpaywall_open_access_license":null,"unpaywall_open_access_status":null,"abstract":"INTRODUCTION\nSickle cell disease (SCD) research is hampered by disparities in participation due in part to mistrust of research among racial/ethnic minorities. Beyond the historic context of research misconduct, little is known about the associations of social ecologic factors with mistrust and of mistrust with SCD clinical trials enrollment. This study evaluated proximal (age, gender, disease severity, perceived stress, SES) and distal (religious beliefs, social support, instrumental support) factors related to mistrust of research among caregivers of children with SCD and adolescents and young adults (AYAs) with SCD.\n\n\nMETHODS\nOver an 18-month period (2009-2010), participants completed questionnaires of perceived barriers and benefits to clinical trials enrollment, perceived stress, and self-reported demographic and disease-related information. Analyses (January-June 2015) used multivariable linear regressions to evaluate predictors of mistrust.\n\n\nRESULTS\nData were analyzed for 154 caregivers (mean age, 38.75 years; SD=9.56 years; 90.30% female) and 88 AYAs (mean age, 24.76 years; SD=7.25 years; 46.40% female). Among caregivers (full model, R(2)=0.14, p≤0.001), greater mistrust was explained by higher perceived stress (β=0.04, p=0.052); religious beliefs (β=0.61, p≤0.001); and greater instrumental support (β=0.07, p=0.044). Among AYAs (full model, R(2)=0.18, p≤0.001), higher mistrust was explained by being male (β=-0.56, p≤0.001) and lower instrumental support (β=-0.11, p=0.016). Mistrust was significantly greater among caregivers that reported no prior involvement in medical research (p=0.003).\n\n\nCONCLUSIONS\nBy understanding the complexity through which social ecologic factors contribute to mistrust, researchers may create targeted strategies to address mistrust and increase engagement in SCD research for caregivers and AYAs.","claims":[{"public_id":"cl_72b399ef2b5b2d3195eb98883bd86dcd","status":"active","text":"Among adolescents and young adults with sickle cell disease, higher mistrust was associated with being male and with lower instrumental support.","confidence":0.95,"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/claims/cl_72b399ef2b5b2d3195eb98883bd86dcd"},{"public_id":"cl_1bdb4595d44419d37bc976a3385fde89","status":"active","text":"Among caregivers of children with sickle cell disease, greater mistrust of research was associated with higher perceived stress, religious beliefs, and greater instrumental support.","confidence":0.94,"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/claims/cl_1bdb4595d44419d37bc976a3385fde89"},{"public_id":"cl_6bf967a3f1fdc26661de447a4493b94a","status":"active","text":"Caregivers with no prior involvement in medical research had significantly greater mistrust of research.","confidence":0.93,"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/claims/cl_6bf967a3f1fdc26661de447a4493b94a"}],"concepts":[{"public_id":"co_0bef37e7092b55206f907b3711919cd7","status":"active","name":"mistrust of research","description":"Distrust or skepticism toward participation in research studies and clinical trials.","types":["psychological construct"],"aliases":["mistrust of research among racial/ethnic minorities"],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_0bef37e7092b55206f907b3711919cd7"},{"public_id":"co_6716e3ff558a34a8d87991eb6e7f9d65","status":"active","name":"clinical trials enrollment","description":"Participation in clinical trial studies by eligible individuals.","types":["outcome"],"aliases":["clinical trials research enrollment"],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_6716e3ff558a34a8d87991eb6e7f9d65"},{"public_id":"co_6c4cc7f5603c409be4e113ec816849f1","status":"active","name":"caregivers of children with sickle cell disease","description":"Adult caregivers providing care for children living with sickle cell disease.","types":["population"],"aliases":["caregivers"],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_6c4cc7f5603c409be4e113ec816849f1"},{"public_id":"co_718a57992c9a4dc771e93abb61c88e09","status":"active","name":"medical research","description":"Participation in or involvement with research studies, including prior research experience.","types":["activity"],"aliases":[],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_718a57992c9a4dc771e93abb61c88e09"},{"public_id":"co_73412a7dd3e574355e7d46bc8374a4de","status":"active","name":"instrumental support","description":"Practical support available to participants, such as tangible help or assistance.","types":["social support"],"aliases":[],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_73412a7dd3e574355e7d46bc8374a4de"},{"public_id":"co_7903ce9a68f033f783fd2886593541de","status":"active","name":"sickle cell disease","description":"An inherited blood disorder characterized by abnormal hemoglobin and chronic disease burden.","types":["condition"],"aliases":["SCD"],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_7903ce9a68f033f783fd2886593541de"},{"public_id":"co_7b93665ac251dcb8575b9be14e1ee045","status":"active","name":"religious beliefs","description":"Participants' beliefs or practices related to religion used as a distal social-ecologic factor.","types":["social factor"],"aliases":[],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_7b93665ac251dcb8575b9be14e1ee045"},{"public_id":"co_a7522196b5e671e4d8250314d14990a9","status":"active","name":"social ecologic factors","description":"Individual and social influences considered at proximal and distal levels in relation to mistrust.","types":["framework"],"aliases":["social ecological factors"],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_a7522196b5e671e4d8250314d14990a9"},{"public_id":"co_c5c4d8a98b27d21e0795df0a1b91ccdf","status":"active","name":"adolescents and young adults with sickle cell disease","description":"Adolescent and young adult participants living with sickle cell disease.","types":["population"],"aliases":["AYAs"],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_c5c4d8a98b27d21e0795df0a1b91ccdf"},{"public_id":"co_cce59baa0a97df255a35730e322864e3","status":"active","name":"perceived stress","description":"Self-reported stress levels experienced by participants.","types":["psychological measure"],"aliases":[],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_cce59baa0a97df255a35730e322864e3"},{"public_id":"co_e016d55dff0484a020e85626d32a86b1","status":"active","name":"perceived barriers and benefits to clinical trials enrollment","description":"Questionnaire-based measures of participants' views about obstacles to and advantages of joining clinical trials.","types":["measurement instrument"],"aliases":[],"contributors":[{"id":1,"public_id":"12632b8b5f","public_label":"Anonymous (12632b8b5f)","roles":["extraction"],"url":"https://sah.borca.ai/u/12632b8b5f"}],"url":"https://sah.borca.ai/concepts/co_e016d55dff0484a020e85626d32a86b1"}],"external_ids":{"DOI":"10.1016/j.amepre.2016.01.024","ArXiv":null,"PubMed":27320470,"PubMedCentral":"PMC4916926","MAG":2430980543,"DBLP":null,"ACL":null},"open_access":{"is_open_access":true,"pdf_url":"http://www.ajpmonline.org/article/S0749379716000507/pdf","landing_url":"https://www.semanticscholar.org/paper/e0babdbe7ea274e062874b2c9f3a4da13afc93f2","source":"semantic_scholar","pdf_url_source":"semantic_scholar_open_access_pdf","license":"CCBYNCND","status":"HYBRID","reason":null},"reference_availability":{"status":"available","references_indexed":true,"full_text_available":false,"full_text_source":null,"count_basis":"semantic_scholar_metadata","extraction_status":"not_applicable","reason":null},"source":{"provider":"episteme2","base_corpus":"semantic_scholar_dump","freshness_mode":"unknown","basis":["semantic_scholar_metadata","postgres_metadata"],"limits":["paper metadata is based on indexed upstream scholarly datasets","claims and concepts are available only for extracted papers","absence of claims or concepts means no extracted graph data is available in this response"],"status":"available","degraded":false,"degraded_reasons":[],"diagnostics":{"status":"available","degraded":false,"degraded_reasons":[],"metadata_status":"available","graph_status":"available","abstract_status":"available"},"source_flags":5},"paper_id":638726,"paper_uid":"8b6ca0bb-6567-44b0-ad47-6aeeb041bd3f","canonical_identity":{"paper_id":638726,"paper_uid":"8b6ca0bb-6567-44b0-ad47-6aeeb041bd3f","identity_status":"available","lookup_basis":"semantic_scholar_external_id","compatibility_path":"corpus_id"},"url":"https://sah.borca.ai/papers/24701642"}