SIGNIFICANCE: African American women with rheumatic conditions (RCs) experience disease-specific disabilities that affect their participation in meaningful occupations and home safety concerns.

The integration of self-reported (SR) data and in-home assessments will help in the development of effective patient education and interventions to improve adherence to home safety recommendations that will facilitate aging-in-place and the assessment of caregiver burden. The purpose of this descriptive study was to identify the participants’ perspectives on home safety and the concordance between SR performance capabilities and real-time performance in the home.

RATIONALE/BACKGROUND: Women and African Americans have a higher prevalence of RCs compared to men and Whites. Additionally, RCs are the leading causes of disability in the United States; yet, disparities and underrepresentation of African American women exist in clinical research studies. The burden of disease-specific disability confronting older African American women can affect their participation in daily activities and safety within their homes. Home safety is complex and associated with gender, physical and cognitive impairments, fear of falling, and environmental changes. Thus, the integration of performance-based data and SR information in the home environment where effective patient management and aging-in-place occur is needed. Differences exist between SR and performance-based data.

METHOD: African American women with RCs participated in an in-home assessment regarding home safety and performance of daily activities. All participants completed a brief interview, the Patient Acceptable Symptom State (PASS)-SR (self-report of performance capabilities, what one “could do” compared with what one “routinely does”), and the PASS-Home (observational data of real-time performance of 26 criterion-referenced, standardized task situations). The PASS-Home includes four domains: basic activities of daily living (ADLs), physical and cognitive instrumental ADLs (IADLs), and functional mobility (FM). Content analysis was used to determine the primary codes, and summary statements were generated for each code. Data from the interviews, PASS-SR, and PASS-Home were integrated. Concordance was defined as the percentage of agreement between SR capability (PASS-SR) and performance-based (PASS-Home) data of task situations.

RESULTS: Eighteen participants (mean age = 64.7 yr) reported the six primary safety concerns: falling, carrying heavy objects, bathroom mobility, difficulty using hands, lack of proper safety equipment, and environmental hazards. Participants identified four effective strategies to remain safe in their homes—asking for help, creating environmental modifications, practicing energy conservation, and using assistive devices. Percentage of agreement between SR capability on the PASS-SR and performance-based data of the task situations (PASS-Home) that were underestimated ranged from 22.2% (4 of 18) for FM–stair use, IADL–shopping, and IADL–heavy housework to 50.0% (9 of 18). There were 9 of 26 task situations with less than 50% concordance.

CONCLUSION: We were able to examine real and perceived performance patterns of African American women with RCs. Despite participants underestimating their perceptions of independence, they identified effective strategies to live beyond their safety concerns. Limitations of this study include results based on a single encounter, and participants may have performed with extra attention to safety for the study.