Online Program

Community partnerships to implement a stress intervention for African American family caregivers for dementia patients

Monday, November 4, 2013

Maryam Robinson, MPH, Department of Research, Emory Nell Hodgson Woodruff School of Nursing, Atlanta, GA
Kenneth Hepburn, PhD, Department of Research, Emory Nell Hodgson Woodruff School of Nursing, Atlanta, GA
Monica Parker, MD, Department of Geriatric Medicine, Emory University School of Medicine, Atlanta, GA
Clinton Dye Jr., PhD, LCSW, LMFT, Human Services Systems, Inc., Atlanta, GA
Debbie Stevens, Emory University nell Hodgson Woodruff School of Nursing, Atlanta, GA
We report on the design phase of a research project testing a stress intervention targeted to African American dementia family caregivers, an underserved and hard-to-reach population; this process also produced useful strategies for recruitment and research implementation. Input from five focus groups (with (n=27) African American family caregivers and professionals) shaped a testable, culturally appropriate psychoeducation program for these caregivers. We elicited participants' responses to a proposed curriculum based on an existing evidence-based program. Participants reflected on six domains: 1) the caregiving situation, 2) dementia knowledge and information sources, 3) caregiving rewards, 4) cultural perspectives on caregiving, 5) coping mechanisms, 6) Educational content. Crosscutting themes concerning guilt, family dynamics, and isolation emerged. The resultant program focused on developing caregiving skills and knowledge and also cast the caregiving role in the context of positive and negative effects of community structures (family, church, etc.) on caregivers' coping. The curriculum was reshaped after each group, based on the group's input. A prototype program was formatively tested with (n=25) caregivers and revised accordingly. This culturally-salient program, now in randomized trial, comprises seven 2-hour sessions. The design phase relied on engaging community contacts (for recruitment) and the cultural congruence of participants and focus group and educational program leaders. Focus group participants made suggestions about strategies for outreach and recruitment and the educational tools that might be effective for African American family caregivers, stressing issues of access. These results offer strategies for reaching and collaborating with underserved communities both in practice and in research.

Learning Areas:

Diversity and culture
Program planning
Public health or related research
Social and behavioral sciences

Learning Objectives:
Discuss African American family caregiver perspectives on coping and educational needs for caregiving. List novel tactics for public health research implementation and recruitment in a hard-to-reach population.

Keyword(s): African American, Caregivers

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have worked as the Project Director/Senior Program Coordinator on this study for over two years to pilot the educational course, collect data, and spearheaded Phase II of the study. Therefore, I have a strong familiarity with the content, priority population, and subject area of the research. My public health research experience includes multiple community-based research efforts within the African American community.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.