Yvonne D. Eaves, PhD, RN Associate Professor, WellStar School of Nursing

1. Rural African Americans’ Retrospective Perceptions of Precipitating Events and Nursing Home Placement Decisions Yvonne D. Eaves, PhD, RN Associate Professor, WellStar School of Nursing WellStar College of Health & Human Services Kennesaw State University Kennesaw, GA 2012 National State of the Science Congress on Nursing Research Washington, DC September 14, 2012

2. Acknowledgements This study was funded by the National Institute on Aging/National Institutes of Health. Mentored Research Scientist Career Development Award (K01), Grant # 1 K01 AG022474-01A1,Yvonne D. Eaves, PI; and the P30 Deep South Resource Center for Minority Aging Research, Grant # 3P30AG031054-02S1 Richard M. Allman, M.D., & Mona Fouad, M.D., Co-Principal Investigators.

3. Background & Significance Older adults experience a higher incidence of multiple chronic illnesses, disability, and dependency than any other age group, thereby, increasing their risk of institutionalization. Families are faced with making decisions regarding long-term care or nursing home placement. Placement decisions are complicated, emotional, and conflictual. Persons involved in placement may hold differing beliefs and opinions about the future care of older adults.

4. Purpose To examine the caregiving trajectory and caregiving transitions that occur over time in rural African American families who provide care for an older adult relative who suffers from one or more chronic illnesses.

5. Research Design Ethnographic, longitudinal Two Phases Focused Ethnography Intervention Development

6. Sample Older adult care recipients, family caregivers, health care professionals 3 Groups of rural African American families in various stages of the caregiving process. Assignment to groups depends on the type and/or level of care required by the older adult.

7. Sample Groups Group 1: Older adult referred to sub-acute or LTC upon hospital discharge or by a physician. Group 2: Older adult discharged to home from acute care setting to be cared for by family; older adult at high risk for transitioning to sub-acute or LTC. Group 3: Older adults are current residents in a sub-acute or LTC facility.

8. Selection Criteria Older Adult Care Recipients Age 65 or older African American Resident of a rural area (3 specific counties) Speak and comprehend English Suffer from one or more chronic illness Must also fit one of the following 3 criteria: Recently (within 30 days) discharged from an acute care setting to either sub-acute, LTC, or home Recently referred by a private physician to sub-acute, LTC, or home health care Current resident in a sub-acute or LTC facility Family Caregivers African American Age 19 or older Reside in rural area Speak and comprehend English Primary, Secondary, and Tertiary caregivers included Caregivers are not required to: Live in same dwelling as older adult care recipients Be related to the care recipient in any particular way (e.g., spouse or child)

9. Data Generation Techniques Semi-structured, audio taped interviews Focused observations Caregiving Transitions Interview Guide Fieldnotes Medical Records Quantitative instruments to complement qualitative data. Client and Caregiver Intake Form (Specht & Hall, 2000). Care recipient and caregiver demographics/status form (Specht & Hall, 2000). ADL/IADL Functional Abilities Form (Specht & Hall, 2000). Specht, J. & Hall, G. (2000).  Building a Seamless Dementia Specific Service Delivery System for Rural Aged.  Grant Proposal, Administration on Aging, Grant No.  90AZ2366. Des Moines, IA:  Iowa Department of Elder Affairs. 

10. Group 3 Data Collection Points Focus for today is on Group 3: older adults who were current residents in a rural nursing home. Families followed for 12-24 months. Initially, individual interviews conducted with care recipient, primary, secondary, and tertiary caregivers within 30 days of referral from an intermediary. Thereafter, intermittent phone calls and follow-up interviews when family, investigator, or an involved HCP deems that a significant event has occurred. If no significant events, follow-up interviews every 4-6 months.

11. Data Analysis and Interpretation Transcribed interviews and fieldnote files merged into word processing file for coding and analysis. Merging process proceeds until data collection is complete. Ethnographic analytic techniques. Formulate categories, themes, and patterns. Explanatory framework or model. Hypotheses formulation and framework for Phase 2 Intervention Pilot will be developed. Descriptive, interpretive, and theoretical validity (Maxwell, 1992) strategies employed.

12. Sample Characteristics

13. Findings Themes Precipitating Health Events Emotional Reactions to NH Placement Regrets Returning Home Unrealistic Views/Perceptions of Self-Care Abilities A “Better Place” Patterns Reasons for NH Placement Anger; Mistrust of Family Members Legal; Authoritative “Wanting to go home” Neglect; [Elder] Abuse

14. Emotional Reactions to NH Placement and NH Life I just drove her around and she was angry because I didn’t take her towards the house but it was too much.” “I’m independent. . . I can’t stand to have them workin waitin’ on me. I like to get up and go and I stay into it [disagreements with NH staff] ‘cause they don’t want me to go.”

15. Regrets: Legal and Authoritative “I should not have given my daughter legal power of attorney. . . That’s where I made my mistake.” I: “When you say go home, does that mean go home with your daughter?” “That’s the only place I got to go home right now. They sold my house. Her and her husband fixed my house up and sold it. When I knowed anything it somebody had bought it.”

16. Desire to Return Home “I’m ready to go home. I need to be at home gettin’ my check at home and spend my own money.” I: “Is it realistic for you to think about going home?” “Yeah, I think about it all the time now—now I’m better but my daughter still hang around that school she taught it [chuckles] and she workin’ part-time.”

17. Unrealistic Perceptions of Self-Care Abilities (1) “I still have to use a walker when I get up out of the chair. I can use the walker very well and go to my bathroom and everything.” I: “So, you can get to the bathroom by yourself now with the walker?” “I have to have assistance with it; they so scared [I’m going to] fall and hurt myself. They don’t want me to go by myself but I can go by myself.” I: “How do you know you can go by yourself?” “Because she don’t really pay too much attention [laughs]. And she just walk behind me.”

18. Unrealistic Perceptions of Self-Care Abilities (2) I: “What about when you’re at home with your family? Do you take the walker and wheelchair with you when you go?” “No, I got a lift up chair and it gets me to the bathroom and my daughter stay in circulation and she don’t leave me by myself. She watch me like a hawk.”

19. “A Better Place”: Neglect and Abuse I: “Were you satisfied with the care you received from your son and his girlfriend?” CR: “Yes, I was satisfied until, until I got too much for ‘em. . . On weekends they would go out, stay out very late and I didn’t—they had cell phones but I [didn’t call]—when they gone, I said now suppose somethin’ happens to me while they’re gone and it’s too much for me to be in touch with ‘em? And um, my meals—they weren’t right. I lost much weight. I was down to a hundred and thirty-seven pounds to a hundred and forty-two. They wasn’t feeding me. I would tell ‘em what I want to eat they they will fix it then it would be just a little bit. They would give e just a lil food just to taste it.”

20. Challenges and Limitations HIPPA and IRB. Cognition. Secondary and Tertiary Caregivers. Keeping Up with Research Activities.

21. Conclusions Elder abuse, neglect, random violence were unexpected. Satisfaction with nursing home: Cause for celebration or escape from negative or bad living situation? Care recipients were angry about being institutionalized. Common or usual tests used for cognitive screening may be inadequate for rural and diverse ethnic older adults. Older rural African Americans have little voice in making decisions about nursing home placement. Aging in place: reality or fantasy?

22. Recommendations More research is needed on: Elder abuse and neglect in rural and diverse ethnic older adult populations. Factors that promote satisfaction with nursing home care. Whether staff retention is higher in rural nursing homes. Sensitivity and specificity of different cognitive assessment tools for use with rural and racially/ethnically diverse older adults. Managing and coping with older adults’ emotional responses to the situational transition of nursing home placement. Managing and resolving family conflicts; Interventions that promote family decision-making where all persons of interest are participants in the process.

23. Summary and Discussion Further research is clearly needed on decision-making, emotional distress, formal or professional help in arranging LTC for elders, and family satisfaction with the care received. This knowledge can guide the development of interventions to assist African Americans in making choices for older relatives once family members are no longer able to provide care at home. A culturally appropriate and relevant long-term care planning intervention for rural African Americans was developed using data from this ethnography. Future research can guide the development of further interventions aimed at assisting these families manage critical caregiving transitions and planning for extended care of older adult relatives. Thank-you for your time and attentiveness. Questions? Comments.