Caregivers' Attitudes Toward Their Family Members' Participation in Alzheimer Disease Research: Implications for Recruitment and Retention

Connell, Christian M.; Shaw, Benjamin A.; Holmes, Sara B.; Foster, Norman L.

doi:10.1097/00002093-200107000-00005

Cited by 104 publications

(99 citation statements)

References 37 publications

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“…For example, studies in the cancer and hypertension literature have found that African Americans had less knowledge than whites about risk factors, symptoms, causes, detection, and treatment (Michielutte and Diseker, 1982;Kumanyika et al, 1989). For many reasons (e.g., economic barriers, institutional racism, mistrust of the medical system), African Americans have been less likely to use geriatric services and to participate in research on Alzheimer disease (Welsh et al, 1994;Connell et al, 2001). They may have less access to the health care system for AD and, as a result, less formal knowledge about the disorder.…”

Section: Discussionmentioning

confidence: 99%

“…African Americans have generally been underrepresented in research on AD, in part due to expenses, transportation difficulties, and lack of rapport with clinic staff (Ballard et al, 1993;Connell et al, 2001). We made special efforts to overcome these barriers, using principles recommended for recruitment of minority participants in dementia research, such as the use of African American recruiters and coordinators and collaboration with African American church and community leaders (Gauthier and Clarke, 1999).…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

Differences Between African Americans and Whites in Their Perceptions of Alzheimer Disease

Roberts¹,

Connell²,

Cisewski³

et al. 2003

Alzheimer Disease & Associated Disorders

134

107

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Summary:To design optimal health services and education programs for Alzheimer disease (AD), it is important to understand cultural differences in perceptions of the disorder. In this study, we investigated differences between African Americans and whites in their beliefs, knowledge, and information sources regarding AD. We distributed a written questionnaire through lay and professional organizations and meetings in the southeastern United States, yielding a sample of 452 adults (61% white, 39% African American; 78% female; mean age 47 years; 33% with family history of AD). The questionnaire assessed the following: (1) illness beliefs, (2) factual knowledge, (3) sources of information, and (4) perceived subjective threat of AD. African Americans and whites were generally similar in their beliefs about common symptoms, prominent risk factors, and the effectiveness of treatments for AD (although whites expressed greater certainty in these beliefs than African Americans). In comparison to whites, African Americans showed less awareness of facts about AD, reported fewer sources of information, and indicated less perceived threat of the disorder. These preliminary findings suggest important distinctions between African Americans and whites in their knowledge about, and conceptualization of, AD. Follow-up studies with more representative samples and more fully validated measures will be necessary to confirm these differences. Health psychologic research suggests that such differences in illness perceptions could shape response to disease burden, assessment and diagnosis, and available health care options.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Differences Between African Americans and Whites in Their Perceptions of Alzheimer Disease

Roberts¹,

Connell²,

Cisewski³

et al. 2003

Alzheimer Disease & Associated Disorders

134

107

View full text Add to dashboard Cite

show abstract

“…Others believe that past abuses, such as the Tuskegee syphilis study, have soured the relationship between researchers and racial and ethnic minorities (Wendler et al, 2006). This belief is reinforced by evidence from focus groups with African Americans with AD and their caregivers (Connell, Shaw, Holmes, & Foster, 2001;Lambe, Cantwell, Islam, Horvath, & Jefferson, 2011).…”

Section: Participation In Research Studiesmentioning

confidence: 99%

Racial and Ethnic Disparities Among Individuals with Alzheimer’s Disease in the United States: A Literature Review

Lines¹,

Sherif²,

Wiener³

2014

115

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This study reviews the published literature on racial and ethnic disparities among people with Alzheimer’s disease (AD) and related dementias in the United States. To identify relevant studies, we searched electronic sources for peer-reviewed journal articles and unpublished research reports that were published through July 2014; related to the AD population and their caregivers; and provided evidence of racial and ethnic disparities, discussed reasons for disparities, or described interventions to address disparities. The literature shows consistent and adverse disparities among blacks and Hispanics compared with non-Hispanic whites concerning AD, including the disease’s prevalence and incidence, mortality, participation in clinical trials, use of medications and other interventions, use of long-term services and supports, health care expenditures, quality of care, and caregiving. The literature suggests numerous underlying causes, including factors related to measurement of the disease, genetics, socioeconomic factors, cultural differences, lack of culturally competent clinicians, and discrimination. Although these disparities are well known, little is known about the effectiveness of various strategies, such as cultural competence training, to address these differences, and very few studies evaluate possible interventions.

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“…Some of the cited factors include lack of African American professionals in leadership roles in medical studies (Shavers et al, 2001); questions regarding the motives of non-African American clinicians and researchers (Mouton, Harris, Rovi, Solorzano, & Johnson, 1997); fears of exploitation (Connell, Shaw, Holmes, & Foster, 2001;Corbie-Smith et al, 1999); and lack of knowledge about the process of medical research engagement (Corbie-Smith et al, 1999). Though data exist on the psychosocial barriers to participation in clinical research for African American adults, no published literature currently exists regarding African American adolescent psychosocial barriers to participation in clinical research.…”

Section: Psychosocial Barriers To Participation In Psychiatric Clinicmentioning

confidence: 99%

Family First: The Development of an Evidence‐Based Family Intervention for Increasing Participation in Psychiatric Clinical Care and Research in Depressed African American Adolescents

2006

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Researchers have documented health disparities for African American and other youth of color in the area of mental health. In accordance with calls for the development of innovative methods for use in reducing these disparities, the purpose of this article is to describe the development of an evidence-based intervention targeting the use of psychiatric clinical care by African American families. The authors summarize current research in the areas of perceived and demonstrated bias in the provision of mental health services, the significance of the problem of low African American participation in psychiatric clinical research and care, and evidence-based approaches to conducting family-oriented research to address adolescent mental illness in this population. This discussion is followed by a description of the development of an intervention to improve familial treatment engagement and plans to test the intervention. The article is provided as a foundation for carefully defined plans to address the unmet mental health needs of depressed African American adolescents within a culturally relevant familial context. Recent research suggests that African American and other adolescents of color face grave disparities compared with their White counterparts in the burden experienced by mental illness and in the appropriateness of indicated behavioral and pharmacological treatments for psychiatric illnesses (Breland-Noble, 2004; U.S. Department of Health and Human Services, 2001). Specifically, recent research indicates that African American youth with mental health and behavioral problems in the foster care system, and therapeutic foster care specifically, have a greater likelihood of involvement with the juvenile justice sector and in-home counseling and crisis services. Further, recent research suggests that African American youth are Keywords

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Caregivers' Attitudes Toward Their Family Members' Participation in Alzheimer Disease Research: Implications for Recruitment and Retention

Cited by 104 publications

References 37 publications

Differences Between African Americans and Whites in Their Perceptions of Alzheimer Disease

Differences Between African Americans and Whites in Their Perceptions of Alzheimer Disease

Racial and Ethnic Disparities Among Individuals with Alzheimer’s Disease in the United States: A Literature Review

Family First: The Development of an Evidence‐Based Family Intervention for Increasing Participation in Psychiatric Clinical Care and Research in Depressed African American Adolescents

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