{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T07:05:22Z","timestamp":1787727922786,"version":"build-2784847793"},"reference-count":50,"publisher":"Oxford University Press (OUP)","issue":"5","license":[{"start":{"date-parts":[[2023,10,25]],"date-time":"2023-10-25T00:00:00Z","timestamp":1698192000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["U24AG05855"],"award-info":[{"award-number":["U24AG05855"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["P30AG064103"],"award-info":[{"award-number":["P30AG064103"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["P30AG064200"],"award-info":[{"award-number":["P30AG064200"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["CTSI UL1TR002001"],"award-info":[{"award-number":["CTSI UL1TR002001"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,5,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background and Objectives<\/jats:title>\n                  <jats:p>Latinos caring for a person with Alzheimer\u2019s disease and related dementias (ADRD) have the highest prevalence of caregiving. Yet, they are less likely to benefit from evidence-based interventions given their continued underrepresentation in ADRD-related research. Community advisory boards (CABs) have the potential to address barriers to research for underrepresented communities; however, there are complexities to establishing and sustaining CABs. This article describes how our work addressed challenges in CABs related to unbalanced power relations, language barriers, the value of time, and low research knowledge and health literacy.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Research Design and Methods<\/jats:title>\n                  <jats:p>Nine Latino CAB members, including older Latino caregivers, were trained in a comprehensive program designed to increase knowledge about health research methods and ethics, cognitive health, and cultural adaptation methods. Members completed pre- and post-training measures of Alzheimer\u2019s disease knowledge, attitudes, and beliefs toward research, and a satisfaction survey.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Results from the satisfaction questionnaire indicated that the program was well received. CAB members increased their knowledge regarding the management of behavioral and psychological symptoms of dementia and dementia-associated risk factors and treatment. Positive changes in members\u2019 attitudes toward research included increased willingness to participate in trials and subject protection measures.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Discussion and Implications<\/jats:title>\n                  <jats:p>Formalized training in research conduct and ethics and health literacy is a promising strategy to reduce challenges in establishing and maintaining CABs and can also optimize CAB impact to address gaps in older Latino ADRD caregiving research.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/geront\/gnad144","type":"journal-article","created":{"date-parts":[[2023,10,25]],"date-time":"2023-10-25T18:59:33Z","timestamp":1698260373000},"source":"Crossref","is-referenced-by-count":8,"title":["Community-Engaged Research With Latino Dementia Caregivers: Overcoming Challenges in Community Advisory Board Development"],"prefix":"10.1093","volume":"64","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5881-8436","authenticated-orcid":false,"given":"Maria M","family":"Qui\u00f1ones","sequence":"first","affiliation":[{"name":"Elaine C. Hubbard Center for Nursing Research on Aging, School of Nursing, University of Rochester Medical Center , Rochester, New York , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6102-1580","authenticated-orcid":false,"given":"Silvia","family":"S\u00f6rensen","sequence":"additional","affiliation":[{"name":"Warner School of Education and Human Development, University of Rochester , Rochester, New York , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3498-6272","authenticated-orcid":false,"given":"Kenneth","family":"Hepburn","sequence":"additional","affiliation":[{"name":"Nell Hodgson Woodruff School of Nursing, Emory University , Atlanta, Georgia , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jahaira","family":"Capellan","sequence":"additional","affiliation":[{"name":"Clinical Translational Science Institute, University of Rochester Medical Center , Rochester, New York , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathi L","family":"Heffner","sequence":"additional","affiliation":[{"name":"Elaine C. Hubbard Center for Nursing Research on Aging, School of Nursing, University of Rochester Medical Center , Rochester, New York , USA"},{"name":"Department of Psychiatry, University of Rochester Medical Center , Rochester, New York , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2023,10,25]]},"reference":[{"key":"2024041612375120900_CIT0001","volume-title":"Profile of Hispanic Americans age 65 and over","author":"Administration of Community Living","year":"2020"},{"key":"2024041612375120900_CIT0002","article-title":"2023 Alzheimer\u2019s disease facts and figures","volume-title":"Alzheimer\u2019s & Dementia","author":"Alzheimer\u2019s Association","year":"2023"},{"key":"2024041612375120900_CIT0003","first-page":"342","article-title":"The influence of ethnicity and culture on the caregiver stress and coping process: A sociocultural review and analysis","volume-title":"Gerontologist","author":"Aranda","year":"1997"},{"key":"2024041612375120900_CIT0004","first-page":"661","article-title":"Latino Alzheimer\u2019s caregivers: What is important to them","volume-title":"Journal of Managerial Psychology","author":"Ar\u00e9valo-Flechas","year":"2014"},{"key":"2024041612375120900_CIT0005","first-page":"196","article-title":"Cultural adaptations of behavioral health interventions: A progress report","volume-title":"Journal of Consulting and Clinical Psychology","author":"Barrera","year":"2013"},{"key":"2024041612375120900_CIT0006","first-page":"727","article-title":"Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: A randomized, controlled trial","volume-title":"Annals of Internal Medicine","author":"Belle","year":"2006"},{"key":"2024041612375120900_CIT0007","first-page":"002216782097603","article-title":"Building an effective and empowered community advisory board for veterans","volume-title":"Journal of Humanistic Psychology","author":"Brown","year":"2020"},{"key":"2024041612375120900_CIT0008","first-page":"236","article-title":"The Alzheimer\u2019s Disease Knowledge Scale: Development and psychometric properties","volume-title":"Gerontologist","author":"Carpenter","year":"2009"},{"key":"2024041612375120900_CIT0009","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1007\/978-1-0716-0132-7_2","article-title":"Contextual, cultural, and sociopolitical issues in caring for Latinxs with dementia: When the mind forgets and the heart remembers","volume-title":"Caring for Latinxs with dementia in a globalized world","author":"Chavez-Due\u00f1as","year":"2020"},{"key":"2024041612375120900_CIT0010","first-page":"1047133","article-title":"Community advisory committee as a facilitator of health and wellbeing: A qualitative study in informal settlements in Nairobi, Kenya","volume-title":"Frontiers in Public Health","author":"Chumo","year":"2022"},{"key":"2024041612375120900_CIT0011","first-page":"1032","article-title":"Community advisory board members\u2019 perspectives regarding opportunities and challenges of research collaboration","volume-title":"Western Journal of Nursing Research","author":"Cramer","year":"2018"},{"key":"2024041612375120900_CIT0012","first-page":"490","article-title":"P2\u2013356: Attitudes toward research in an urban minority population: A pilot study","volume-title":"Alzheimer\u2019s & Dementia","author":"De La Fuente","year":"2013"},{"key":"2024041612375120900_CIT0013","first-page":"1123","article-title":"Ethical goals of community consultation in research","volume-title":"American Journal of Public Health","author":"Dickert","year":"2005"},{"key":"2024041612375120900_CIT0014","first-page":"367","article-title":"Research advocacy training program benefits diverse older adults in participation, self-efficacy and attitudes toward research","volume-title":"Progress in Community Health Partnerships","author":"Dillard","year":"2018"},{"key":"2024041612375120900_CIT0015","first-page":"797","article-title":"Dementia caregiving research: Expanding and reframing the lens of diversity, inclusivity, and intersectionality","volume-title":"Gerontologist","author":"Dilworth-Anderson","year":"2020"},{"key":"2024041612375120900_CIT0016","article-title":"Caregiver statistics: Demographics","author":"Family Caregiver Alliance","year":"2016"},{"key":"2024041612375120900_CIT0017","first-page":"45","article-title":"Recruitment and retention of Latino dementia family caregivers in intervention research: Issues to face, lessons to learn","volume-title":"Gerontologist","author":"Gallagher-Thompson","year":"2003"},{"key":"2024041612375120900_CIT0018","first-page":"401","article-title":"Cultural competence and the recursive nature of conscientization","volume-title":"Action in Teacher Education","author":"Gallavan","year":"2012"},{"key":"2024041612375120900_CIT0019","first-page":"212","article-title":"Inclusion of Spanish-speaking families in NICU symptom research using a community advisory board","volume-title":"Advances in Neonatal Care","author":"Garcia","year":"2023"},{"key":"2024041612375120900_CIT0020","first-page":"181","article-title":"\u201cLa Lucha\u201d: The experiences of Latino family caregivers of patients with Alzheimer\u2019s disease","volume-title":"Clinical Gerontologist","author":"Gelman","year":"2010"},{"key":"2024041612375120900_CIT0021","first-page":"e16","article-title":"A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders","volume-title":"American Journal of Public Health","author":"George","year":"2014"},{"key":"2024041612375120900_CIT0022","volume-title":"Applied thematic analysis","author":"Guest","year":"2011"},{"key":"2024041612375120900_CIT0023","first-page":"367","article-title":"Community advisory boards guiding engaged research efforts within a clinical translational sciences award: Key contextual factors explored","volume-title":"Progress in Community Health Partnerships: Research, Education, and Action","author":"Halladay","year":"2017"},{"key":"2024041612375120900_CIT0024","first-page":"908","article-title":"The Savvy Caregiver Program: Developing and testing a transportable dementia family caregiver training program","volume-title":"Gerontologist","author":"Hepburn","year":"2007"},{"key":"2024041612375120900_CIT0025","volume-title":"Unequal treatment: Confronting racial and ethnic disparities in health care","author":"Institute of Medicine","year":"2003"},{"key":"2024041612375120900_CIT0026","first-page":"2094","article-title":"Community-based participatory research: A capacity-building approach for policy advocacy aimed at eliminating health disparities","volume-title":"American Journal of Public Health","author":"Israel","year":"2010"},{"key":"2024041612375120900_CIT0027","first-page":"gnad068","article-title":"The threefold path to equity: Approaches for health and aging researchers","volume-title":"Gerontologist","author":"Iveniuk","year":"2023"},{"key":"2024041612375120900_CIT0028","first-page":"5","article-title":"Cultural values and caregiving: The updated sociocultural stress and coping model","volume-title":"The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences","author":"Knight","year":"2010"},{"key":"2024041612375120900_CIT0029","first-page":"gnad094","article-title":"Race\/ethnicity, nativity, and gender disparities in unmet care needs among older adults in the United States","volume-title":"Gerontologist","author":"Lin","year":"2023"},{"key":"2024041612375120900_CIT0030","first-page":"e228","article-title":"Systematic review and meta-analysis of racial and ethnic differences in dementia caregivers\u2019 well-being","volume-title":"Gerontologist","author":"Liu","year":"2021"},{"key":"2024041612375120900_CIT0031","first-page":"96","article-title":"Establishing community advisory boards for clinical trial research in Malawi: Engendering ethical conduct in research","volume-title":"Malawi Medical Journal","author":"Manda-Taylor","year":"2013"},{"key":"2024041612375120900_CIT0032","first-page":"119","article-title":"Regulation of community advisory boards during conduct of clinical trials in Uganda: A qualitative study involving stakeholders","volume-title":"BMC Health Services Research","author":"Mijumbi","year":"2023"},{"key":"2024041612375120900_CIT0033","first-page":"755","article-title":"Building and sustaining a community advisory board of African American older adults as the foundation for volunteer research recruitment and retention in health sciences","volume-title":"Ethnicity & Disease","author":"Mitchell","year":"2020"},{"key":"2024041612375120900_CIT0034","first-page":"P27","article-title":"Effects of a caregiver intervention on negative caregiver appraisals of behavior problems in patients with Alzheimer\u2019s disease: Results of a randomized trial","volume-title":"The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences","author":"Mittelman","year":"2004"},{"key":"2024041612375120900_CIT0035","first-page":"513","article-title":"Community Consultation in HIV prevention research: A study of community advisory boards at 6 research sites","volume-title":"Journal of Acquired Immune Deficiency Syndromes","author":"Morin","year":"2003"},{"key":"2024041612375120900_CIT0036","first-page":"165","article-title":"Capacity of community advisory boards for effective engagement in clinical research: A mixed methods study","volume-title":"BMC Medical Ethics","author":"Mugenyi","year":"2021"},{"key":"2024041612375120900_CIT0037","volume-title":"Meeting the challenge of caring for persons living with dementia and their care partners and caregivers: A way forward","author":"National Academies of Science, Engineering, and Medicine","year":"2021"},{"key":"2024041612375120900_CIT0038","volume-title":"Status of Hispanic older adults: Insights from the field\u2014Reframing aging","author":"National Hispanic Council on Aging","year":"2018"},{"issue":"3","key":"2024041612375120900_CIT0039","first-page":"1","article-title":"Community advisory boards in community-based participatory research: A synthesis of best processes","volume":"8","author":"Newman","year":"2011","journal-title":"Preventing Chronic Disease"},{"key":"2024041612375120900_CIT0040","first-page":"558","article-title":"It\u2019s more than language: Cultural adaptation of a proven dementia care intervention for Hispanic\/Latino caregivers","volume-title":"Gerontologist","author":"Parker","year":"2023"},{"key":"2024041612375120900_CIT0041","first-page":"1","article-title":"Recruiting socially disconnected Latinos caring for a person with Alzheimer\u2019s disease and related dementias during the COVID-19 pandemic: Lessons learned","volume-title":"Clinical Gerontologist","author":"Quinones","year":"2023"},{"key":"2024041612375120900_CIT0042","first-page":"409","article-title":"Using ethnographic approaches to document, evaluate, and facilitate virtual community-engaged implementation research","volume-title":"BMC Public Health","author":"Rabin","year":"2023"},{"key":"2024041612375120900_CIT0043","first-page":"337","article-title":"Characteristics and consequences of family support in Latino dementia care","volume-title":"Journal of Cross-Cultural Gerontology","author":"Rote","year":"2019"},{"key":"2024041612375120900_CIT0044","first-page":"1088","article-title":"Racial\/ethnic differences in caregiving frequency: Does immigrant status matter","volume-title":"The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences","author":"Rote","year":"2018"},{"key":"2024041612375120900_CIT0045","first-page":"463","article-title":"Community-university partnerships in community-based research","volume-title":"Progress in Community Health Partnerships: Research, Education, and Action","author":"Sadler","year":"2012"},{"key":"2024041612375120900_CIT0046","first-page":"S20","article-title":"Community engagement in tuberculosis research: The EU-Patient-cEntric clinicAl tRial pLatforms (EU-PEARL) experience","volume-title":"International Journal of Infectious Disease","author":"Saluzzo","year":"2023"},{"key":"2024041612375120900_CIT0050","author":"Seshadri","year":"2019","journal-title":"Engaging Older Adult Learners as Health Researchers (ENGOAL): A Training Manual"},{"key":"2024041612375120900_CIT0047","doi-asserted-by":"crossref","DOI":"10.3912\/OJIN.Vol14No03Man04","article-title":"Understanding cultural and linguistic barriers to health literacy","volume-title":"OJIN","author":"Singleton","year":"2009"},{"key":"2024041612375120900_CIT0048","first-page":"482","article-title":"Racial and ethnic differences in the relationship of caregiving stressors, resources, and sociodemographic variables to caregiver depression and perceived physical health","volume-title":"Aging & Mental Health","author":"Sorensen","year":"2005"},{"key":"2024041612375120900_CIT0049","first-page":"73","article-title":"Forming and implementing community advisory boards in low- and middle-income countries: A scoping review","volume-title":"BMC Medical Ethics","author":"Zhao","year":"2019"}],"container-title":["The Gerontologist"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/gerontologist\/advance-article-pdf\/doi\/10.1093\/geront\/gnad144\/53186716\/gnad144.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/gerontologist\/article-pdf\/64\/5\/gnad144\/57241735\/gnad144.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/gerontologist\/article-pdf\/64\/5\/gnad144\/57241735\/gnad144.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,4,16]],"date-time":"2024-04-16T19:09:16Z","timestamp":1713294556000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/gerontologist\/article\/doi\/10.1093\/geront\/gnad144\/7329738"}},"subtitle":[],"editor":[{"given":"Joseph E","family":"Gaugler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2023,10,25]]},"references-count":50,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2024,5,1]]}},"URL":"https:\/\/doi.org\/10.1093\/geront\/gnad144","relation":{},"ISSN":["0016-9013","1758-5341"],"issn-type":[{"value":"0016-9013","type":"print"},{"value":"1758-5341","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2024,5,1]]},"published":{"date-parts":[[2023,10,25]]},"article-number":"gnad144"}}