Stroke is the leading cause of disability in the (US) and the third leading cause of death. A 1999 study suggests a much higher incidence of stroke than previously reported, estimating 259 new strokes per 100,000 population. Findings from this study also indicate that incidence of stroke increased exponentially with age and is consistently higher for males than females. Stroke also occurs more frequently among African-Americans and Hispanics. More stroke survivors are receiving the majority of their care in the home, placing a substantial burden on informal caregivers.
The goals of this study included: (1) Describe stroke recovery trajectories for African-American, Puerto Rican Hispanic, and non-Hispanic white veterans across two years following discharge home, (2) Explore variations in stroke recovery and describe strategies used by survivors to manage the illness course at home among three ethnic groups, (3) Explore the use of formal and informal health services and identify barriers to recovery at home, (4) Explore changes in burden, coping, depression, hours of caregiving and general health status of stroke caregivers over time for each ethnic group, (5) Describe the types of assistance informal caregivers provide during the first year to facilitate stroke recovery.
This is a prospective cohort multi-site study. A total of 250 participants (125 veterans and 125 caregivers) were enrolled in the study. Participants included 33 African Americans, 49 Puerto Rican Hispanic and 43 non-Hispanic white veterans. Subjects and their caregivers were enrolled prior to discharge for acute stroke. Data were collected at 1, 6, 12, 18, and 24 months following discharge home. Trained research assistants of the same ethnicity as the veteran collected data during home visits. Qualitative data included in-depth interviews with stroke survivors about their life following stroke. Quantitative data from the veteran included type of stroke, co-morbidities (Charlson Co-morbidity Scale), functional assessments (Functional Independence Measure, FIM), instrumental activities of daily living (Frenchay Activity Index, FAI), depression (Geriatric Depression Scale, GDS), and mental status (Mini-Mental Status Exam, MMSE). Caregiver data were collected at the same time points and included caregiver burden (Sense of Competence Scale, SOC), coping (Sense of Coherence), depression (GDS), hours and type of caregiving provided, and general health of caregivers across two years.
Controlling for covariates, growth models indicate that racial/ethnic groups differed in their initial status (i.e., FIM at discharge) and in patterns of recovery across 24 months. Puerto Rican veterans had greater functional impairment (lower motor FIM and FAI scores) compared to whites and African Americans. African Americans had less depressive symptomology and a better recovery trajectory compared to whites and Puerto Ricans. However, the average Puerto Rican had depressive symptoms within the depressed range. Changes in one’s sense of self following a stroke are related to depression. Puerto Ricans experience more disruption in sense of self than other groups across all time points. Experiences related to connectedness and isolation affected veterans across 12 months of the recovery trajectory. Results suggest the majority of white veterans maintain and recover a greater sense of connectedness throughout the twelve months and Puerto Ricans experience the greatest sense of isolation initially post stroke. Puerto Rican veterans experienced no or low community integration throughout this recovery period more often than other groups. Puerto Rican veterans and caregivers reported greater need for formal care services and greater use of selected services. There are no racial and ethnic differences in the level of caregiver burden and caregiver coping, although African American caregivers have a lower average GDS score which indicates lower levels of depressive symtomology. Puerto Rican caregivers spend the most hours per day, and have the most help with their care recipient compared to whites and African Americans. Caregiving tasks did not vary by race/ethnicity and included cooking, clothes/dressing, housework, personal care (bathing etc.), transportation, medical help, finances, shopping, and companionship.
Results indicate that the recovery of stroke survivors varies by race/ethnicity in (a) functional status, (b) activities of daily living, (c) depression, (d) sense of self, (e) connectedness, (f) social participation. Across the board Puerto Ricans on average were more impaired (functional status and activities of daily living) at discharge and experienced slower recovery across the 24 month time period.
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