Exploring Barriers to Latino Families' Participation in Dementia-Related Research

2.50
Hdl Handle:
http://hdl.handle.net/10755/157703
Type:
Presentation
Title:
Exploring Barriers to Latino Families' Participation in Dementia-Related Research
Abstract:
Exploring Barriers to Latino Families' Participation in Dementia-Related Research
Conference Sponsor:Western Institute of Nursing
Conference Year:2009
Author:Coon, David W., PhD
P.I. Institution Name:Arizona State University, College of Nursing & Healthcare Innovation
Title:Professor
Contact Address:500 N. 3rd Street, Phoenix, AZ, 85004, USA
Contact Telephone:602-543-6064
Co-Authors:Neva L. Crogan, PhD, GCNS-BC, GNP-BC, FNGNA, Associate Professor; Bronwynne C. Evans, RN, PhD, FNGNA, ANEF, Associate Professor; Gale Kittle, RN, MPH, Clinical Research Nurse
Purpose: The purpose of this study was to explore Latino views of dementia-related research through a series of focus groups targeting Latino community service providers and Latino families affected by dementia.  This work extends previous work in this area by focusing on challenges faced by researchers even after incorporating strategies identified in previous research that were demonstrated to facilitate Latino families' willingness to participate in dementia-related research. Background: Latinos make up over six percent of the older adult population, and are expected to become the largest racial/ethnic minority in adults over 65 years by 2050. There are over one million people of Latino origin in Maricopa County, Arizona, comprising over 30% of the population.  Previous studies exploring effective recruitment strategies for Latino dementia family caregivers in intervention research emphasize the importance of collaborative partnerships between researchers and community service providers. However, some researchers have encountered ongoing challenges in recruiting Latinos into dementia-related research. Methods:  Focus group participants were recruited through collaborative relationships with a local Alzheimer's Association chapter and an informal network of Latino health and social service providers.  A series of focus groups were completed exploring barriers to reaching Latino populations for services and research. The current study focuses on three of these groups: English-speaking Latino dementia family caregivers; Spanish-speaking Latino dementia family caregivers; and, bilingual Latino health and/or social services providers who work with Latino families affected by dementia.  All groups were facilitated by following a semi-structured interview developed in English and Spanish. Key themes (both shared and unique) emerged for families and providers through qualitative analysis of the focus group transcripts. Results:  Several key themes were shared between both family and provider groups including:  an overall lack of identification and connection with research; suspicion and mistrust that also encompassed challenges posed by translation from English to Spanish using words that seemed "scary" or "risky"; concerns about the safety of loved ones with dementia, as well as concerns that an "investigation" may put the family at risk; and, the need to incorporate educational opportunities and information exchange with professionals and the opportunity to connect with others experiencing similar issues. Families, in contrast to providers, raised more concerns about practical barriers to participation (for example, timing and transportation); whereas, providers described research as a "necessary sacrifice" that will help create better treatments and services for the community. Implications:  This study highlights the ongoing importance of finding effective strategies to bridge gaps between researchers and the Latino community. The barriers identified suggest the need to tailor outreach and research itself to include educational components and provide opportunities for Latino families to meet others experiencing similar challenges.  Our findings also suggest that the language of "research", especially when translated into Spanish may connote a sense of being "investigated" which can be perceived as putting the memory impaired loved one and the family as a whole at risk.  This finding speaks to the need to establish and maintain trusting relationships among Latino community providers and advocates, Latino families, and researchers.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Western Institute of Nursing

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleExploring Barriers to Latino Families' Participation in Dementia-Related Researchen_GB
dc.identifier.urihttp://hdl.handle.net/10755/157703-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Exploring Barriers to Latino Families' Participation in Dementia-Related Research</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Western Institute of Nursing</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2009</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Coon, David W., PhD</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">Arizona State University, College of Nursing &amp; Healthcare Innovation</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Professor</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">500 N. 3rd Street, Phoenix, AZ, 85004, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">602-543-6064</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">david.w.coon@asu.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Neva L. Crogan, PhD, GCNS-BC, GNP-BC, FNGNA, Associate Professor; Bronwynne C. Evans, RN, PhD, FNGNA, ANEF, Associate Professor; Gale Kittle, RN, MPH, Clinical Research Nurse</td></tr><tr><td colspan="2" class="item-abstract">Purpose: The purpose of this study was to explore Latino views of dementia-related research through a series of focus groups targeting Latino community service providers and Latino families affected by dementia.&nbsp; This work extends previous work in this area by focusing on challenges faced by researchers even after incorporating strategies identified in previous research that were demonstrated to facilitate Latino families' willingness to participate in dementia-related research. Background: Latinos make up over six percent of the older adult population, and are expected to become the largest racial/ethnic minority in adults over 65 years by 2050. There are over one million people of Latino origin in Maricopa County, Arizona, comprising over 30% of the population.&nbsp; Previous studies exploring effective recruitment strategies for Latino dementia family caregivers in intervention research emphasize the importance of collaborative partnerships between researchers and community service providers. However, some researchers have encountered ongoing challenges in recruiting Latinos into dementia-related research.&nbsp;Methods:&nbsp; Focus group participants were recruited through collaborative relationships with a local Alzheimer's Association chapter and an informal network of Latino health and social service providers.&nbsp; A series of focus groups were completed exploring barriers to reaching Latino populations for services and research. The current study focuses on three of these groups: English-speaking Latino dementia family caregivers; Spanish-speaking Latino dementia family caregivers; and, bilingual Latino health and/or social services providers who work with Latino families affected by dementia.&nbsp; All groups were facilitated by following a semi-structured interview developed in English and Spanish. Key themes (both shared and unique) emerged for families and providers through qualitative analysis of the focus group transcripts. Results:&nbsp; Several key themes were shared between both family and provider groups including:&nbsp; an overall lack of identification and connection with research; suspicion and mistrust that also encompassed challenges posed by translation from English to Spanish using words that seemed &quot;scary&quot; or &quot;risky&quot;; concerns about the safety of loved ones with dementia, as well as concerns that an &quot;investigation&quot; may put the family at risk; and, the need to incorporate educational opportunities and information exchange with professionals and the opportunity to connect with others experiencing similar issues. Families, in contrast to providers, raised more concerns about practical barriers to participation (for example, timing and transportation); whereas, providers described research as a &quot;necessary sacrifice&quot; that will help create better treatments and services for the community. Implications:&nbsp; This study highlights the ongoing importance of finding effective strategies to bridge gaps between researchers and the Latino community. The barriers identified suggest the need to tailor outreach and research itself to include educational components and provide opportunities for Latino families to meet others experiencing similar challenges.&nbsp; Our findings also suggest that the language of &quot;research&quot;, especially when translated into Spanish may connote a sense of being &quot;investigated&quot; which can be perceived as putting the memory impaired loved one and the family as a whole at risk.&nbsp; This finding speaks to the need to establish and maintain trusting relationships among Latino community providers and advocates, Latino families, and researchers.</td></tr></table>en_GB
dc.date.available2011-10-26T20:07:27Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T20:07:27Z-
dc.description.sponsorshipWestern Institute of Nursingen_GB
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