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African Americans Caregivers

Burden in African American Caregivers
by

Debbie Stevens

on 15 November 2012

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Transcript of African Americans Caregivers

Initial Results Objectives: Results Are African Americans caregivers really less burdened? Currently 5.4 Million Americans diagnosed with Alzheimers African Americans are twice as likely to have and to develop Alzheimer’s and other dementias. Theme I Theme II Methodology (cc) photo by Metro Centric on Flickr (cc) photo by Franco Folini on Flickr (cc) photo by jimmyharris on Flickr Theme III (cc) photo by Metro Centric on Flickr Discuss the differences between quantitative and qualitative reports Identify specific ways burden has been conceptualized and measured 56 Abstracts Reviewed One of the earlier studies found that among black caregivers, those with higher income and lower educational status did report higher levels of burden (Lawton et al., 1992). An integrated literature review Conclusions Melnyk & Fineout-Oveholt Hierarchy: Zarit Burden Interview
Revised Memory & Behavior Problem Checklist
Caregiver Stress
Caregiver Role Strain
Numerous Perceived Burden Scales Summary of Findings: Mapping Themes: Where is the data taking you? A Closer Look... (cc) image by nuonsolarteam on Flickr Discrimination 70% African Americans reported discrimination compared to 36% whites

predictive of negative mental & physical health outcomes 80% of older adults are cared for by informal family caregivers

caregiver’s ability to provide direct and social support is vital

substantial evidence that caregivers can have negative health consequences This review broadens the discourse about burden among African American caregivers raises the possibility that there are cohort differences among African American caregivers The picture has always been more complex. Measures: methods CINAHL, PubMed, and Web of Science databases were comprehensively searched Burden multidimensional response to the physical, emotional and financial stressors of caring for an adult with a disabling condition African American Caregivers
are generally: younger unmarried perceive greater needs greater financial strain caring for elders longer care recipients are more impaired This year, the first baby boomer will turn 65. poses questions about whether standard measures of burden account sufficiently for the cultural context of African American caregiving Search Terms: “African Americans”, “Blacks” “Caregiver Burden”, “Dementia”, and “Alzheimer’s” Limitations: 1980-2011, English, Human, Periodicals, Academic Journals/Articles/Review PubMed (95)
Web of Science (35)
CINAHL (35) 163 109 Studies excluded for multiple reasons (did not include AA, not CG, not in English, duplicates, etc) 54 -- Removed 28 for similar exclusion criteria
+ Added 2 from cross referencing 28 Total # of articles:
17 Quantitative Studies
11 Qualitative Studies Debbie Y. Stevens, MSN, RN, PMHCNS-BC
John A. Hartford Scholar
PhD Student

Ken Hepburn, PhD
Emory University Quantitative Qualitative Mixed Methods 17 7 4 28 Articles Selected QUAL and QUAN compared

0 - Level 1 (Meta-analysis of RCTs, Systematic Reviews)

2 - Level II (RCT) studies (McGinnis, et al., 2006; Elliot et al., 2010)

1 - Level IV (case–control and cohort) study (Skarupski et al., 2009)

14 - Level VI studies (cross-sectional single descriptive) Used in over 1/3 of all the studies This research was supported in part by the
John A. Hartford Foundation’s Building Academic Geriatric Nursing Capacity Award Program. Lawton, Rajagopal, Brody, & Kleban, 1992
Hinrichsen & Ramirez, 1992
Mui, 1992
Fredman, Daly, & Lazur, 1995
Cox, 1995
Allen-Kelsey, 1998
Hughes, Giobbie-Hurder, Weaver, Kubal, & Henderson, 1999
Knight, Silverstein, McCallum, and Fox, 2000
Spurlock, 2005
Shurgot & Knight, 2005
McGinnis, Schulz, Stone, Klinger, Mercurio, 2006
Burns, Graney, Martindale-Adams, & Lummus, 2006
Kim, Knight, & Longmire, 2007
Kosberg, Kaufman, Burgio, Leeper, & Sun, 2007
McCallum, Longmire, & Knight, 2007
Skarupski, McCann, Bienias, & Evans, 2009
Elliott, Burgio, & DeCoster, 2010 Richardson & Sistler, 1999

Lampley-Dallas, Mold, & Flori, 2001

Jones-Cannon & Davis, 2005

Dilworth-Anderson, Boswell, & Cohen, 2007 Kelly, 1994

Nkongho & Archbold, 1995

Sterritt & Porkorny, 1998

Calderon & Tennstedt, 1998

Loukissa, Farran, & Graham, 1999

Fox, Hinton, & Levkoff, 1999

Levy, Hillygus, Bui, and Levkoff, 2000 Why are African Americans less burdened?? Culturally embedded values

Extended informal social networks

Religious Coping Differences in Caregiving Experience Caregiver Burden Defined: classic definitions

combination of both subjective and objective interpretations

multidimensional construct Consistent differences found between black and white caregivers

Trends from early 90's continued to mid 2000's

4 of last 5 studies published found no difference Cox (1995) and colleagues’ examination of caregiver stress among black and white caregivers found no significant difference in stress between the two groups, as a whole, but found that black caregivers who perceived a lack of informal support and incompetency had higher levels of stress. What can we learn from qualitative reports? "disadvantaged" STORY? frequent references to frustration
and anger

typically focused on broader support systems

unsupportive family members

culturally insensitive healthcare providers perceived racism obligation lack of support "not spiritual" disadvantaged somatic complaints denial guilt resentment Implications Need to clarify concept of burden

Take into account broader cultural trends

Need for mixed methods research Effie Mae Frances Albright
July 8, 1919 - April 16, 2012 purpose~ examine whether there might be a more nuanced and/or a changing set of results regarding caregiver burden, particularly among African Americans Limited economic resources

Multiple caregiving roles

Dwindling social support “Do you feel you have lost control of your life since your relative’s illness?" Do you feel angry when you are around your relative?
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