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CAReS Publications

CAReS

Publications

A goal of the CAReS research study is the dissemination of findings to both professional and public audiences. Publications based on the cares study are included here. Watch this site for new publications as they are accepted.

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Publications

  • Kelley, C., Graham, C., Christy, J.B.,  Hersch, G.,  Shaw, S., Ostwald, S.K. (2010). Falling and Mobility Experiences of Stroke Survivors and Spousal Caregivers, Physical and Occupational Therapy in Geriatrics, 28(3), 235-248.

  • Chalermwannopong, S., Panuthai, S., Srisuphan, W., Panya, P., Ostwald, S.K. (2010).  Effects of the transitional care program on functional ability and quality of life of stroke survivors, CMU Journal of Natural Science, 9(1), 49-66.

  • Ostwald, S.K., Godwin, K.M., Cron, S. (2009) Predictors of Life Satisfaction in Stroke Survivors and Spousal Caregivers Twelve to Twenty-Four Months Post Discharge From Inpatient Rehabilitation. Rehabilitation Nursing. 34 (4), 160-167,174.
  • Ostwald, S.K., Bernal, M.P., Cron, S., Godwin, K.M. (2009) Stress Experienced by Stroke Survivors and Spousal Caregivers During the First Year After Discharge from Inpatient Rehabilitation. Topics in Stroke. 16(2):93–104

  • Purpose: This study describes levels of stress in stroke survivors and spousal caregivers and identifies predictors of stress in couples during their first year at home. Method: The Perceived Stress Scale (PSS) was administered to 159 stroke survivors and caregivers at discharge and at 3, 6, 9, and 12 months. Other variables tested included stroke survivor function (FIMTM), health status, mutuality, stroke impact (SIS), caregiver coping (F-COPES), support (MOS Social Support Survey), and preparedness. Repeated measures analyses of PSS scores were conducted with linear mixed models for stroke survivors and caregivers. Results: PSS scores for stroke survivors and caregivers were positively correlated ( p < .01). Scores decreased significantly over the year, but caregivers had higher scores initially and decreased less. Stroke survivor function was a significant predictor of stress for both survivors and caregivers. Preparation was the most powerful predictor of stress in caregivers, whereas mutuality was the strongest predictor for stroke survivors. Good health, social support, and coping were associated with less stress. Conclusions: Stress is increased by poor function and mediated by internal and external buffers including health, the dyadic relationship, coping ability, and social support. More research using a dyadic research approach is needed to better understand stress within couples.  

  • Ostwald, S.K., Godwin, K.M., Cheong, H., Cron, S. (2009) Predictors of resuming therapy within four weeks after discharge from inpatient rehabilitation.  Topics in Stroke. 16(1), 80-91.  

    Purpose : To identify the percentage of persons with stroke resuming therapy within 4 weeks of inpatient rehabilitation discharge, to compare the characteristics of those who did and did not resume therapy, and to determine the predictors of resuming physical (PT), occupational (OT), and speech (ST) therapy. Method : Sociodemographic, stroke-related, and therapy data for persons with stroke ( N = 131) were abstracted from inpatient rehabilitation charts. FIMTM, Stroke Impact Scale, Geriatric Depression Scale, and data on therapy received after discharge were also collected. Results : Logistic regression models demonstrated that minorities were less likely to resume PT (odds ratio [OR] = 0.30) and OT (OR = 0.25). Survivors with neglect/visual-field cut/spatial-perceptual loss were 2–3 times more likely to resume PT, OT, and ST. Survivors with higher scores on the SIS Physical domain subscale were less likely to resume PT (OR = 0.98) and OT (OR = 0.97). Men were 3.3 times more likely to have OT than women. Those with comprehensive health insurance were 11.2 times more likely to receive ST. Conclusions : The benefits of outpatient therapy are not universally available to all persons with stroke. Further research needs to explore the factors that hinder the prompt resumption of therapy for minority and female persons with stroke and to test appropriate interventions.

  • Ostwald, SK. (2009) Who is caring for the caregiver? Promoting spousal caregiver's health. Journal of Family and Community Health. 32(1S): S5-S14.

    Older adults are at high risk for developing chronic illnesses; those older than 85 are also the most rapidly growing segment of the US population. The majority of care for older adults with disabilities is provided in the community by family caregivers, as well as spouses if they are available. Although there has been significant research on the effect of caregiving on spousal health, few studies have addressed the health promotion needs of spousal caregivers. More research is needed to study health-promoting behaviors in the context of the social and physical environments in which spousal caregivers live and work.

  • Ostwald, S.K., Davis, S.D., Hersch, G., Kelley, C., Godwin, K.M. (2008). Evidence-based Educational Guidelines for Stroke Survivors Following Discharge Home. Journal of Neuroscience Nursing . 40(3), 173-179,191.

Stroke survivors are discharged home from the hospital quicker due to shifting economic realities.  Survivors continue to experience significant impairments after discharge and families may be poorly prepared for the extent of caregiving responsibilities.  This paper describes 39 comprehensive educational guidelines that have been tested with 72 stroke survivors and families in 1,150 visits to their homes during the first six months after  discharge from inpatient rehabilitation.  Two case studies are used to illustrate the use of the guidelines with stroke survivors and their families.

  • Ostwald, S.K., Swank, P.R., Khan, M. (2008). Predictors of Functional Independence and Stress Level of Stroke Survivors at Discharge from Inpatient Rehabilitation. Journal of Cardiovascular Nursing 23(4), 371-377.

Background and Research Objective: Stroke is the primary cause of long-term disability among older adults. This study identifies predictors of functional independence and perceived stress for stroke survivors discharged home from inpatient rehabilitation with a spousal caregiver.

Subjects and Methods: Stroke survivors (N = 97) were interviewed immediately after discharge to obtain scores on the National Institutes of Health Stroke Scale, Functional Independence Measure (FIM), Stroke Impact Scale, Geriatric Depression Scale-15, Perceived Stress Scale, and Perceived Health Status. Demographic and stroke-related data were abstracted from their inpatient rehabilitation charts. Descriptive and regression analyses determined the relationships among variables and the models that best predicted functional independence and perceived stress.

Results: Stroke survivors perceived a 50% recovery in their function upon discharge from inpatient rehabilitation. National Institutes of Health Stroke Scale, age, socioeconomic status, and number of complications predicted 63% of the variance of the total FIM score (F6,88 = 24.64; P G .0001). Total FIM, depression, and Stroke Impact Scale Emotion subscale predicted 45% of the Perceived Stress Scale score (F6,88 = 12.04; P G .0001).

Conclusions: Variables that predict the stroke survivors' recovery are complex as the severity of the stroke combines with demographic and economic variables and depression to predict functional independence and perceived stress. These factors need to be considered when preparing a discharge plan for stroke survivors who are discharged home from rehabilitation.

Stroke is a major cause of disability and death worldwide. It affects 15 million people globally and 60% either die or are permanently disabled as a result of stroke. In a rapidly aging population, stroke is expected to continue to be a major concern for survivors, their families and health and social care providers. Most stroke survivors live in the community and are assisted by family caregivers, especially spouses. However, stroke-related impairments and poststroke depression interfere with recovery and result in impaired relationships and reduced life satisfaction for the survivors and their spouses. New interventions are needed to assist stroke survivors and their spouses to cope with the many physical, emotional and environmental changes that result after stroke and enable survivors to become reintegrated into the community.

  • Ostwald, S.K., Wasserman, J., Davis, S. (2006). Medications, Co-morbidities, and medical complications in stroke survivors: the CAReS study. Rehabilitation Nursing, Jan-Feb; 31(1): 10-4.

Stroke survivors enter rehabilitation units with many medical co-morbidities and often experience significant complications during their stays. Hypertension, heart disease and diabetes were the most frequent risk factors for stroke in this population. Almost everyone had at least one risk factor. The number of complications varied with the average stroke survivors experiencing almost four different complications. Post-stroke depression was experienced by 45% of the survivors. Stroke survivors averaged less than 3 weeks in inpatient rehabilitation. They were discharged on 11 medications, at a cost of approximately $725/month. This article (1) identifies the types of medications prescribed for stroke survivors who were being discharged home from rehabilitation, (2) explores correlations between medication prescriptions and the number of stroke-related co morbidities and medical complications, (3) identifies the cost of medications and the potential effect of medication costs on stroke survivors, and (4) discusses the nurse's role in preparing stroke survivors and their caregivers for medication use after discharge.

  • Schulz, C., Wasserman, J., Ostwald, S. K. (2006). Recruitment and retention of stroke survivors: The CAReS experience. Physical & Occupational Therapy in Geriatrics, 25(2), 17-29.

Recruiting participants with chronic disabling conditions into research studies is a complex process, involving consideration of the rigors of Institutional Review Board requirements, complexities of the recruiting site and sensitivity to the needs of elderly participants. Retaining such participants is achieved by careful recruitment that ensures that participants match the established criteria, understand the study, and are committed to long-term participation as well as by minimizing the burden as such as possible on the participants and making them feel an important part of a worthwhile effort throughout the duration of the study. This article reviews the recruitment process and reports strategies used in recruiting and retaining elderly subjects for the CAReS Research Study, an interdisciplinary, randomized intervention research study for stroke survivors and their spousal caregivers. Implications for occupational therapy are addressed.

  • Tariah, H., Hersch, G., Ostwald, S. K. (2006). Factors Associated with Quality of Life: Perspectives of Stroke Survivors. Physical & Occupational Therapy in Geriatrics, 25(2), 33-50.

Objective: The purpose of this mixed design study was to examine quality of life from the stroke survivors’ perspectives. It addressed the question: What factors have influenced the stroke survivors’ quality of life (QOL)? and tested the null hypothesis that stroke has no influence on stroke survivors’ QOL.

Methods: A mixed design was used with nine stroke survivors who lived at home, were able to communicate and had experienced a stroke at least one year prior to the interview. Four data collection methods were used, including a semi-structured qualitative interview tool, two standardized tools measuring the QOL (the Delighted-Terrible Scale and the Satisfaction with Life Scale (SWLS), and field notes.

Results: On the Delighted Terrible Scale the null hypothesis was rejected since the Dmax was found to be more than the critical D (0.57 > 0.43), using the Kolmogorov-Smirnov One-Sample test. Similarly, on the SWLS, the null hypothesis was rejected as the Dmax was found to be more than the critical D (0.49 > 0.43). Most of the participants reported being either satisfied or extremely satisfied with their lives in the quantitative measures. Findings from qualitative data presented four themes: doing what you enjoy doing; lost roles and occupations; live with what you have to live with; and hope for the future: improving QOL.

Conclusion: In spite of the quantitative findings showing that the stroke survivors perceived themselves as mostly satisfied or satisfied with their lives, the participants talked about the stroke and its consequences in the qualitative part of the study and expressed how the stroke had negatively impacted the quality of their lives. It is recommended that long-term rehabilitation and psychosocial follow-up services be available for stroke survivors. It is apparent from the study that the participants were still in need of these services and were motivated to return to a rehabilitation program. This study strongly suggests that greater attention should be paid to the stroke survivors’ QOL in present rehabilitation programs.

Published Abstracts

  • Godwin, K.M., Cron S.G., Ostwald S.K. (2010) Long- term Stroke Related Health Outcomes for Stroke Survivors and their Spousal Caregivers, Stroke, 41 (4), p e359.

Background and Objective: Few studies have examined the long term impact of stroke on stroke survivors (SSs) and their spousal caregivers (CGs); this study aimed to measure the changes in health-related outcomes an average of 3-5 years post stroke. Methods: A sample of 30 SSs and their spousal CGs (n=60) who had previously completed a 12-month study following inpatient discharge after stroke were assessed at 3-5 years post stroke in the present study. Depression, mutuality, and generic health- related quality of life (HRQoL) were measured for both SSs and CGs; additionally, caregiver burden was measured for CGs and stroke-specific HRQoL was measured for SSs with the Stroke Impact Scale (SIS). Data from baseline to 12 months were used in conjunction with data from the present study for all analyses with the exception of generic HRQoL, which was only collected during the present study. Linear mixed models were used to analyze the change in repeated measures over time. Multiple linear regression was used to analyze the relationship of generic HRQOL mental and physical subscales to depression, perceived health status, mutuality, and demographic variables. All analyses utilized separate SSs and CGs models. Results:  The majority of SSs in this study were male (80%, n=24).  The mean age was 66.4 and 60.5 years for SSs and CGs, respectively. The ethnicity of the sample was non-Hispanic white (70%), African American (15%) and Hispanic (15%). The average number of years since stroke was 4.68 (SD = .91). Among SSs, depression was found to decrease from baseline to 12 months (p=.04) but to increase from 12 months to end of follow-up (p=0.003). CGs’ depression decreased from baseline to all time points (p=.015). SSs’ mutuality showed little change over time while CGs mutuality decreased (p=.056). CGs’ burden did not significantly change over time. SSs’ HRQoL showed statistically significant (p < .05) decreases between 12 months and end of follow-up on all SIS subscales (physical, communication, emotional, memory and social participation). For CGs, increased number of illnesses and older age were associated with lower physical HRQoL score (p = .014 & .034, respectively). Higher depression was associated with lower mental HRQoL score for both CGs and SSs (p= .003 & .011, respectively).   Conclusion: Both SSs and CGs continue to experience negative stroke related health outcomes for many years after the initial stroke; some of these outcomes even worsen over time. These findings illustrate the need for ongoing psychological and medical evaluation for both long-term SSs and CGs. Development and testing of targeted behavioral interventions are also warranted.

  • Ostwald, S.K., Derkits, L., Janssen, K. (2009) The Role of Faith in Stroke Recovery, The Gerontologist, 49 (Special Issue 2 – October) p366.

Faith has been suggested as an important coping strategy for some persons who live with chronic illness.  This multi-method research study collected data from 10 couples (average age of 70.6), approximately 5.3 years after a stroke.  The couples were interviewed about the impact of their belief system on their recovery, and completed the R-COPES and F-COPES questionnaires.  The interviews were transcribed; questionnaires were entered into SPSS for analysis. Code words and phrases were identified from the transcripts and combined into themes.  Two major themes were identified – personal relationship with God (spirituality) and connection to the church community (religiosity).  Most stroke survivors and their spouses reported a positive relationship with God, although some described earlier feelings of anger and questioning.  A few continued to question the role of God in their lives.  Couples described both strong connections and disconnections with their church communities.  While churches helped some couples cope with the stroke by giving emotional and physical support, other couples felt abandoned by the church.  Individual scores on the subscales of the R-COPES and Acquiring Spiritual Support (ASS) on the F-COPES were consistent with the interview data.  Stroke survivors reported lower ASS subscale scores and higher negative coping than their caregivers.  Stroke survivors with greater disabilities experienced more obstacles and insensitivity to their needs by the church community.  Some experienced the sense of “the church dropping all around” them.  Healthcare professionals should recognize the personal role of faith in long term recovery and provide opportunities for couples to explore their feelings.

  • Godwin, K.M., Wasserman, J., Cron, S.G., Ostwald, S.K. (2008) The Effect of Aphasia on Depression and Mutuality Among Stroke Survivors During the First Year Post Stroke, The Gerontologist, 48 (Special Issue III-October), p75.

Background:  Aphasia can negatively impact marital relationships and lead to social isolation and depression. Mutuality, a measure of the positive caregiving relationship, has been examined among married couples; however limited information exists about the relationship between aphasia and mutuality. This study examined the relationship between aphasia, depression and mutuality among elderly stroke survivors (SS). Methods: Presence or absence of aphasia was abstracted from rehabilitation charts for 159 SS. The Geriatric Depression Scale-Short Form was administered to SS immediately after discharge, and at 3, 6, 9, and 12 months post discharge. The Mutuality Scale was administered at discharge, 6 and 12 months post stroke. All SS were discharged home with a spousal caregiver. Repeated measures analyses were performed to determine if aphasia was a predictor of depression or mutuality. Results: Thirty-two percent (n=51) of the SS were aphasic. Analysis revealed no significant difference in depression between SS with aphasia and those without. However, depression was demonstrated to decrease significantly over time (p=.04) for all SS. In a similar analysis, aphasia was found to be significantly associated with higher mutuality (p=.04). Mutuality also decreased significantly over time (p<.01) for all SS.  There were no significant time-aphasia interactions for either depression or mutuality.  Conclusions: These results indicate a decrease in both depression and mutuality among SS over the first year post stroke. Interestingly, SS with aphasia had increased mutuality compared to those without. Further study is warranted to determine the cause of this difference.

  • Ostwald, S.K., Godwin, K.M., Cheong, H., Cron, S. (2008) Predictors of Resuming Therapy within Four Weeks after Discharge from Inpatient Rehabilitation, Stroke, 39 (2), p680.

Objective: Stroke survivors with similar impairments receive widely different types and amounts of outpatient rehabilitation therapy. The purpose of this paper is to 1) identify the percentage of stroke survivors resuming rehabilitation therapy within four weeks after discharge from inpatient rehabilitation, 2) compare the characteristics of those who did and did not resume therapy, and 3) determine the predictors of the resumption of physical (PT), occupational (OT), and speech (ST) therapies. Methods: Socio-demographic, stroke-related, and therapy data were abstracted from rehabilitation charts of 135 stroke survivors discharged home with spousal caregivers. Functional Independence Measure (FIM), Stroke Impact Scale (SIS) and Geriatric Depression Scale-Short Form (GDS-SF) were collected from survivors immediately after discharge. Data on type and amount of therapy received during the first four weeks at home were tracked on special calendars.  Results: Logistic regression models demonstrated that minority status, the survivor’s perception of having poorer physical function (SIS Physical Domain), and neglect/visual-field cut and/or spatial-perceptual loss predicted the resumption of PT and OT. Minorities were 70-75% less likely to resume PT or OT within 4 weeks of discharge from inpatient rehabilitation., Men were 3.3 times more likely to have OT than females (OR = 3.32), and those with comprehensive health insurance were 11.2 times more likely to receive ST than those without comprehensive coverage. Conclusions: The benefits of outpatient therapy are not universally available to all stroke survivors. Further research needs to explore the factors that hinder the prompt resumption of therapy for minority and female stroke survivors and to test appropriate interventions. 

  • Casarez, R., Godwin, K.M., Ostwald, S.K. (2008) Expressions of Spirituality in Caregivers of Stroke Survivors, Stroke, 39 (2), p736.

Introduction: Spirituality has been identified as a coping mechanism for caregivers in dealing with the challenges of living with individuals with chronic illnesses, including stroke, although few studies have addressed this topic. In order to develop interventions aimed at providing spiritual support to caregivers of stroke survivors, more information is needed about spirituality from the perspectives of the caregivers. Purpose: The purpose of this study was to examine the expressions of spirituality among the spousal caregivers of stroke survivors during their first year after discharge from inpatient rehabilitation. Method: This was a qualitative descriptive analysis, which was part of a longitudinal intervention study which provided education, skills training, counseling, and social and community linkages to stroke survivors and their spouses for six months post-hospital discharge. A total of 159 stroke survivors and their spousal caregivers were recruited prior to discharge from rehabilitation units. The data for this analysis included interviews with the spouses about their caregiving experiences, including what it was like for them to be caregivers and how they coped with difficulties. Spouses were interviewed immediately after the survivor was discharged from the hospital, and at three, six, nine, and twelve months. A total of 636 interviews were obtained from 159 caregivers. Of these total interviews, 140 (from 64 caregivers) had narrative content about spirituality, and this data was content analyzed for spiritual themes. The primary method of rigor was peer debriefing. Findings: Many participants believed that God was in control of their lives and the one of the most significant ways they coped with the caregiving experience was through a relationship with God.  The caregivers took part in the relationship by having faith in God, thanking God, surrendering difficulties to God and through prayer. God participated in the relationship by keeping the survivor alive and allowing for physical recovery; opening up avenues for needed financial resources and by giving the caregivers inner strength to cope with their experiences.  Conclusion: Spirituality may be an important resource for caregivers of stroke survivors as they deal with the challenges of caregiving. Their spiritual needs should be assessed, and if present, incorporated into health care encounters in order to help them cope with and manage their caregiving experience.

  • Godwin, K.M., Wasserman, J., Ostwald, S.K. (2008) Outpatient Rehabilitative Service Cost the First Year Post Stroke, Stroke, 39 (2), p706.

Objective: The purpose of this study was to estimate the utilization and related costs of outpatient rehabilitative services for stroke survivors their first year post stroke and to determine the association with stroke severity. Methods: Service utilization data for 159 stroke survivors were collected on specially designed calendars the first year after the individual’s stroke. These services included outpatient and in-home physical, occupational and speech therapies, home health and skilled nursing. Costs for services were based on Medicare reimbursement rates. Stroke severity was based on the Functional Independence Measure (FIM) score at discharge from the hospital or rehabilitation unit. Results: The average age at discharge was 66.4 years, 74.8% (n=119) of the sample was male. The mean FIM score at baseline was 89.9. Of the 159 stroke survivors 10.1% (n=16) were severe, 33.3% (n=53) were moderate and 56.6% (n=90) were mild. The average annual cost of outpatient rehabilitation services was $9,477 (SD $9,597). The average utilization and associated costs were highest the first three months post stroke (mean $4,755, SD $4,205) and declined throughout the year with the services costs the last three months of the year totaling less than a quarter of the initial cost (mean $1,109, SD $2,203). Those survivors with mild stroke had an annual average outpatient rehabilitation cost of $6,690 (SD $7,402). Those with moderate stroke had an annual average cost of $11,120 (SD $8,544), while those with severe stroke incurred an annual average estimated cost of $19,711 (SD $14,965). The average annual cost of service utilization was moderately correlated (r = -0.422, p<0.0001) with lower total FIM score and increased stroke severity. Additionally, higher annual average cost was more strongly correlated with FIM Motor score (r = -0.407, p < 0.0001) then with FIM Cognitive score (r = -0.294, p < 0.0001). Conclusions: These results show that there is a wide variation of service utilization and associated costs for stroke survivors, even within severity subcategories. As expected, those with more severe stroke have higher related outpatient rehabilitation therapy costs. Furthermore, increased therapy costs are more highly correlated with severity due to motor impairment than cognitive impairment. 

  • Janssen, K., Wasserman, J., Ostwald, S.K. (2008) Impact of Inpatient Rehabilitation Complications on Stroke Survivor Recovery, Stroke, 39 (2), p734.

Objective:  Stroke is the primary cause of long-term disability in older adults. Medical complications often delay recovery and extend the length of stay (LOS) in rehabilitation. The purpose of this paper is to discuss the medical complications experienced by 97 stroke survivors during inpatient rehabilitation. It reports the relationships between the number and type of complications and the inpatient rehabilitation length of stay.  Relationships are also explored among complications and stroke severity and functional ability at discharge home.  Methods: The study was a cross-sectional, correlational design. Demographic data (age, gender, race/ethnicity, education, occupation, type of insurance) and stroke-related data (side and type of stroke, the number of impairments, and the type and number of complications), and length of rehabilitation stay were abstracted from the inpatient rehabilitation charts of 97 stroke survivors discharged home with spousal caregivers.  Immediately after discharge home, a specially trained research nurse administered the National Institutes of Health Stroke Scale (NIHSS), the Functional Independence Measure (FIM), and the Geriatric Depression Scale15 (GDS15). 

Results: The mean inpatient rehabilitation stay was 45.4 days prior to discharge home.   Stroke survivors averaged 3.9 (range 0-13) complications. The number of complications was related to the severity of the stroke (r = 0.54, p =  < .0001), length of inpatient rehabilitation stay (r = 0.41, p = < .0001), and functional status (r = - 0.45, p = <.0001), at discharge.   Depression was the most common complication followed by falls, urinary incontinence, urinary tract, pneumonia, other infections, seizures, and pressure ulcers. Conclusions:  Medical complications frequently occur during inpatient rehabilitation and cause delay in discharge.  In addition, stroke survivors who experience many complications are discharged home with a lower level of function.  Attention needs to be directed toward the prevention and early recognition and treatment of medical complications.  This requires the involvement of the entire rehabilitation team.  

  • Wasserman, J., Godwin, K.M., Ostwald, S.K., Cron, S., (2008) Changes in Health-Related quality of Life for Long-Term Stroke Survivors as Measured by the Stroke Impact Scale, Stroke, 39 (2), p702.  

Objective: The goal of this study was to analyze changes in disease-specific health-related quality of life (HRQoL) over time. Methods: The Stroke Impact Scale (SIS) was administered to 33 first-time stroke survivors discharged home from the hospital at baseline, 3, 6, 9 and 12 months as part of a larger NIH-funded study. The SIS was administered to this same cohort again at a sixth time point.  The time since initial stroke to the sixth time point ranged from 1.6 to 4.04 years, with an average of 2.67 years. Results: Of the 33 patients, 78.8% were male, 67% had mild stroke, 24% had moderate stroke, and 9% had severe stroke. The average age was 68 years (range, 53 to 87 years). After adjusting for time since stroke, a linear mixed model for repeated measures showed statistically significant changes over time for all subcomponents of the SIS. Physical component and social participation scores increased significantly over the six time points (p <0.0001), while communication and emotion scores decreased over the six time points (p=0.02 and p<0.0001, respectively). Memory scores increased over the first five time points (p=0.002), but showed a significant decrease between the 12 month visit and the sixth time point (p=0.02). Conclusions: These results suggest that while there may be significant improvement in physical scores and social reintegration over time, individuals were experiencing ongoing difficulties with communication and emotion. Memory score results suggest that this variable may be negatively impacted in the long-term. This preliminary study demonstrates the need for continued, longitudinal research on HRQoL in long-term stroke survivors. Future longitudinal research should also include the identification of correlates of HRQOL so that interventions can be developed to improve the quality of life of long-term stroke survivors.

  • Wasserman, J., Godwin, K., Ostwald, S.K., Cron, S. (2007) Stroke survivors' change in health related quality of life over time as measured by the stroke impact scale, Value in Health  (The Journal of the International Society for Pharmacoeconomics and Outcomes Research), 10(6), A312.

Objective: The goal of this study was to analyze changes in disease-specific HRQoL over time. Methods: The SIS was administered to 33 first-time stroke survivors discharged home from the hospital at baseline, 3, 6, 9 and 12 months as part of a larger NIH-funded study. The SIS was administered to this same cohort again at a sixth time point.  The average time since initial stroke to the sixth time point ranged from 1.6 to 4.04 years, with an average of 2.67 years. Results: Of the 33 patients, 78.8% were male, 67% had mild stroke, 24% had moderate stroke, and 9% had severe stroke. The average age was 68 years (range = 53 to 87 years). A linear mixed model for repeated measures showed statistically significant changes over time for all subcomponents of the SIS: physical, emotional, memory and social participation component scores improved significantly (p<0.001), while communication scores decreased significantly over the same time period (p=0.02). However, statistically significant decreases in scores were seen between 12 month SIS scores and the additional sixth time point score for social participation (p=0.03),  memory (p=0.02), and communication (p=0.3).  A significant increase for this same time period was demonstrated for emotion (p=<0.001). Conclusions: Increases in physical, emotional, memory and social component scores demonstrated a significant improvement over an initial 12 month period.  However, significant decreases in social communication, memory and communication were seen for the time period between the 12 month score and scores at least one and a half to four years later. These results suggest that while there may significant physical and cognitive improvements during the first year post stroke, individuals were experiencing problems with social reintegration, communication and memory at later time points. Results from this preliminary study demonstrate the need for continued, longitudinal research on HRQoL in long-term stroke survivors.     

  • Ostwald, S.K. (2006) Function and economic burden for stroke survivors and their spousal caregivers after hospital discharge: CAReS study. The Gerontologist 46(Special Issue 1 – October) p384-386, 321A
    • Ostwald, S.K., Davis, S., Hersch, G., Kelley, C., Janssen, K. Physical and psychological changes in stroke survivors and spousal caregivers over a 12-month period.
    • Swank, P., Ostwald, S.K., Robinson-Whelen, S. Predictors of change over time in stroke survivors and their spousal caregivers.
    • Wasserman, J., Godwin, K., Ostwald, S. Outpatient rehabilitative stroke care: Service utilization and associated costs.
    • Hersch, G., Coutinho, F., Ostwald, S. Occupational changes for stroke survivors and spousal caregivers during the first year post hospital discharge.
    • Tamilyn Bakas, RN, DSN (Indiana University) Discussant

CAReS (Committed to Assisting with Recovery after Stroke) is a 5-year, NIH-funded study that explored changes in physical and psychological function among 160 stroke survivors and their spousal caregivers who were assigned to one of two groups. A mild intervention group received information by mail for 12 months. A home-based intervention group received mailed information plus home visits by advanced practice nurses and physical and occupational therapists for the first 6 months post hospital discharge. Both interventions focused on education and linking couples to community resources. The home-based intervention also included skill training and counseling. Quantitative and qualitative data were collected at hospital discharge, 3, 6, 9, and 12 months post discharge. This symposium includes a collection of four papers: 1) a report of physical and psychological changes that occurred in stroke survivors and spousal caregivers in the two intervention groups over a 12 month period, 2) a discussion of the use of growth curve models to analyze the results and the process of subjecting growth parameters to a cluster analysis in order to investigate what changes occurred and what characteristics were associated with change, 3) an analysis of the costs of outpatient and in-home physical, occupational and speech therapies, home health, skilled nursing, respite and adult day care for stroke survivors who had experienced their first stroke, and 4) a qualitative and quantitative exploration of the changes in paid and unpaid work experienced by stroke survivors and their spousal caregivers during the first year post hospital discharge.

  • Physical and Psychological Changes in Stroke Survivors and Spousal Caregivers Over a 12-Month Period (Ostwald, SK, Davis, S, Hersch, G, Kelley, C, Janssen, K, Swank, P)

Stroke survivors and their spousal caregivers (n = 160) were randomly assigned to a mail-only or mail plus home visit intervention group. Physical and psychological measurements were collected 5 times throughout the year following hospital discharge. Stroke survivors in both groups improved in their functional independence scores. Both groups tended to improve or remain stable over the 12 months, so that there were few significant differences between the groups. Although variable, the mean level of depression was low and the mean level of stress was moderate for stroke survivors and caregivers in both groups at baseline and throughout the study. The perceived level of stress was a significant predictor of life satisfaction at 12 months for both stroke survivors and caregivers. Spousal caregivers in the home visit group demonstrated statistically significant increases in total support and coping measures, compared to those in the group who only received information by mail.

  • Predictors of change over time in stroke survivors and their spousal caregivers (P. Swank, S. Ostwald, S. Robinson-Whelan)

When doing intervention studies, it is often instructive to look for reasons why certain variables do not change as expected. We assessed changes in a sample of stroke survivors and spousal caregivers, randomly assigned to two intervention groups, at five equally spaced times over one year. Growth curve models were used to analyze the results and the resulting growth parameters were subjected to a cluster analysis in order to investigate what changes occurred and what characteristics were associated with change. Caregiver clusters were defined in terms of differential changes in stress, mutuality, coping, perceived health, and social support. Stroke survivor clusters were defined in terms of change in depression, communication, mobility, perceived recovery, and NIH stroke scale scores. Cluster variations helped explain differences in inpatient and outpatient therapy. This statistical approach can help health professionals better understand when stroke survivors and caregivers may have difficulty in adjusting to their situation.

  • Outpatient Rehabilitative Stroke Care: Service Utilization and Associated Costs (Wasserman J, Godwin K, Ostwald SK)

Outpatient service utilization and costs for one year (2002-2003 /2003-2004) were calculated for 59 first-time stroke survivors. These services included outpatient and in-home physical, occupational and speech therapies, home health, skilled nursing, respite and adult day care. Of the 59 patients, 63% had mild stroke, 27% had moderate stroke and 10% had severe stroke Based on Medicaid rates and average wholesale price (AWP), the mean cost per patient for outpatient services and medications for the first year post discharge was $16,175. Those with severe stroke had the greatest annual cost, $26,311, patients with moderate stroke had an annual cost of $17,976 , and mild stroke patients had an annual cost of $13,752. Service utilization constituted the majority of cost within each group. Antiplatlets and statins constituted more than 25% of total medication costs Although cost varied by severity, medication costs were similar and remained constant among all three groups.

  • Occupational Changes for Stroke Survivors and Spousal Caregivers During the First Year Post Hospital Discharge (Coutinho, F., Hersch, G, Ostwald, S.K.)

Occupation includes all forms of productive activities whether or not they are reimbursed. The paid and unpaid occupational patterns of 102 stroke survivors and their spousal caregivers who completed a 12-month follow-up post hospital discharge were explored. Forty-nine of the 102 stroke survivors and 53 of the spousal caregivers were working prior to stroke; 86% (n = 42) of the stroke survivors did not return to work compared to only 4% of the caregivers. At 12 months post hospital discharge only 10% (n = 5) of the stroke survivors were working; 91% (n = 48) of the caregivers were employed at 12 months, including 3 who had been previously retired. Almost all stroke survivors and spousal caregivers reported some changes in their unpaid or leisure activities. Social participation was an important predictor of life satisfaction in stroke survivors at 12 months post hospital discharge, but not in the spousal caregivers.

  • Ostwald, S. K., Robinson-Whelen, S., Swank, P. (2005). Examining correlates of burden & depression in spousal caregivers of stroke survivors. The Gerontologist, 45 (Special Issue 1 - October)

Burden and depression were examined in a sample of 101 women and 30 men caring for a spouse returning home after a stroke. A series of multiple regression analyses were conducted to examine the contribution of demographic variables (age, race, SES, gender), stroke survivor characteristics (FIM motor, FIM cognitive, complications, depressive symptoms), caregiver characteristics (self-reported health, other care responsibilities, preparedness for caregiving), and social support (size and quality) to explaining caregiver burden and depression. A block-wise hierarchical procedure was used to determine a set of unique and significant predictors for each outcome.  Burden was associated with greater motor and cognitive impairment of the stroke survivor, poorer caregiver health, additional caregiving responsibilities, less preparedness for caregiving, and fewer people in the caregiver’s social network. There was a trend toward greater burden among those whose spouses had more complications during post-stroke recovery and among younger caregivers, with 45% of the variance explained, F(7,123) = 14.40, p < .0001. Results for depression were similar, although the physical characteristics of the stroke survivor played somewhat less of a role whereas quality of social support was more predictive of depression than perceived burden. Higher caregiver depression scores were associated with greater post-stroke cognitive impairment, poorer caregiver health, additional care responsibilities, less preparedness for caregiving, smaller social networks, and less perceived social support, with 51% of the variance in caregiver depression accounted for by this model, F(7,123) = 18.52, p < .0001. Demographic factors, including gender and race, accounted for little variance in burden or depression.

  • Ostwald, S. K., Swank, P., Robinson-Whelen, S. (2004). Minority stroke survivors and spousal caregivers: are poorer outcomes due to ethnicity, SES, or age The Gerontologist, 44 (Special Issue 1- October)

African Americans and Hispanics have 2 1/2 times the stroke risk of other ethnic groups, severely impacting their families. Of the 97 couples enrolled in CAReS research study following discharge from hospital to home, 36% were minorities, almost equally divided between African Americans and Hispanics. At baseline, the minority stroke survivors and their spouses were significantly younger than the non-minorities (~ 5 years) and had significantly lower SES, measured on the Hollingshead scale. Minority stroke survivors had more disability (higher NIH stroke scale scores, lower mobility scores). Likewise, minority stroke survivors and spouses reported poorer health status. Minority caregivers reported higher levels of depression and stress than white caregivers, but these differences disappeared when controlling for age and SES. The minority caregivers reported a poorer relationship with their spouses than the non-minority caregivers; a difference that remained significant even when controlling for age or SES; this effect was not present for stroke survivors. Minority caregivers reported higher use of prayer and more passive coping strategies; however, when controlled for by SES and age, the difference in spiritual coping strategies disappeared, while those for passive coping did not. In this study, minority stroke survivors and their spouses reported greater impairment, poorer health status, and poorer psychosocial outcomes. It is important to note, however, that many of the psychosocial differences between the two groups, initially attributed to ethnicity, were really associated with either lower SES status or younger age of the couples, rather than differences in race or ethnicity.

  • Ostwald, S. K. (2004). Stroke is a Family Affair: The CAReS intervention study. Geriatric Nursing, 25(1), p. 53.

Research Goals: CAReS (Committed to Assisting with Recovery after Stroke) has the following primary aim: Improve function, quality of life and perceived health, and decrease depression in stroke survivors and decrease depression, burden and stress, and improve health and immune function in their spousal caregivers by strengthening the couple’s knowledge and skills, their use of social supports and resources, and their problem solving and coping behaviors.

Background and significance: Stroke is the leading cause of disability among older adults. There are over four million individuals living with a stroke in the US today. Each year approximately 700,000 individuals experience physical, psychosocial, and cognitive disabilities that interfere with their ability to regain complete independence in activities of daily living. The majority of stroke survivors are discharged home, often after relatively short hospitalizations. Most are assisted at home by a family caregiver, often a spouse. CAReS, an interdisciplinary, longitudinal, NINR-funded research study, has completed two of its five years of funding.

Methods: CAReS is a randomized intervention study that uses an advanced practice nurse, with the assistance of an interdisciplinary rehabilitation team, to provide education, support, skill training counseling, and social and community linkages to stroke survivors and their spouses for 6-months post-hospital discharge. Stroke survivors who are at least 55 years of age and are returning home with needs for daily assistance from a spouse are eligible to participate. Those who consent are randomized into a group that 1) receives information by mail or 2) receives mail plus weekly contacts with the rehab team. Data (quantitative, qualitative, and blood work) is collected from both groups at baseline, 3, 6, 9, and 12 months by nurses who are masked to the group assignment. Descriptive and correlational statistics are used to describe the variables. Hierarchical linear models will be used to model change over time for individual participants using a polynomial form.

Preliminary Findings: Major research goals include decreasing stress and depression among stroke survivors and their spouses, as well as facilitating functional recovery in the stroke survivor. To date, 80 couples have been recruited and randomized into the study. Preliminary baseline data demonstrates that stroke survivors and spousal caregivers experience similar levels of stress and depression. However, predictors of depression and stress are different for the individuals. Depression and stress in stroke survivors are predicted by functional status and perception of recovery, while depression and stress in spousal caregivers are predicted by perceived caregiver burden and age.

  • Ostwald, S. K. (2003). Interactions among stress, depression, social support, and physical function in stroke survivors and their spousal caregivers. The Gerontologist, 43, (Special Issue I, October).

There are 570,000 new stroke survivors each year in the United States. The majority of these survivors return home and are assisted in their recovery by a family member, frequently a spouse. The stroke survivor’s recovery is variable, sometimes taking months, and frequently leaving residual disability. Many stroke survivors and spousal caregivers find the recovery period to be stressful and depression is a common symptom. CAReS (Committed to Assisting with Recovery after Stroke), an NIH-funded interdisciplinary home-based intervention study with stroke survivors and their spousal caregivers post-hospital discharge, has completed 2 of 5 years of funding. Sixty-five couples have been enrolled to date: 58% Caucasian, 20% African American, 20% Hispanic and 2% Asian. This poster will present preliminary baseline data on the function (as measured by the NIHSS and the FIM) of stroke survivors, depression and perceived stress scores of the stroke survivors and spousal caregivers, and the coping strategies (measured by F-Copes) used by the spousal caregivers. Depression in the stroke survivors and their spouses was not related to function. However, perceived stress in stroke survivors was related to both the NIHSS (0.0036) and the FIM (0.0011) and perceived stress in spouses was related to the FIM. Stress in the stroke survivors was associated with depression in both the survivor and the spouse, while stress in the spouses was related to depression in the spouse, but not the survivor. Spousal depression was also related to the lack of tangible, affectionate, emotional and informational support and positive social interactions.

  • Ostwald, S. K. (2002). CAReS: Committed to Assisting with Recovery after Stroke. Australasian Journal on Ageing, 21.4, Supplement 1, (December) 21A

Research Goals: CAReS (Committed to Assisting with Recovery after Stroke) has the following primary aim: Improve function, quality of life and perceived health, and decrease depression in stroke survivors and decrease depression, burden and stress, and improve health and immune function in their spousal caregivers by strengthening the couple’s knowledge and skills, their use of social supports and resources, and their problem solving and coping behaviors.

Background and significance:  Stroke is the leading cause of disability among older adults.  There are over four million individuals living with a stroke in the US today.  Each year approximately 700,000 individuals experience physical, psychosocial, and cognitive disabilities that interfere with their ability to regain complete independence in activities of daily living.  The majority of stroke survivors are discharged home, often after relatively short hospitalizations.  Most are assisted at home by a family caregiver, often a spouse.  CAReS, an interdisciplinary, longitudinal, NINR-funded research study, has completed two of its five years of funding.

Methods:  CAReS is a randomized intervention study that uses an advanced practice nurse, with the assistance of an interdisciplinary rehabilitation team, to provide education, support, skill training counseling, and social and community linkages to stroke survivors and their spouses for 6-months post-hospital discharge.  Stroke survivors who are at least 55 years of age and are returning home with needs for daily assistance from a spouse are eligible to participate.  Those who consent are randomized into a group that 1) receives information by mail or 2) receives mail plus weekly contacts with the rehab team.  Data (quantitative, qualitative, and blood work) is collected from both groups at baseline, 3, 6, 9, and 12 months by nurses who are masked to the group assignment.  Descriptive and correlational statistics are used to describe the variables.  Hierarchical linear models will be used to model change over time for individual participants using a polynomial form.

Preliminary Findings:  Major research goals include decreasing stress and depression among stroke survivors and their spouses, as well as facilitating functional recovery in the stroke survivor.  To date, 80 couples have been recruited and randomized into the study.  Preliminary baseline data demonstrates that stroke survivors and spousal caregivers experience similar levels of stress and depression.  However, predictors of depression and stress are different for the individuals.  Depression and stress in stroke survivors are predicted by functional status and perception of recovery, while depression and stress in spousal caregivers are predicted by perceived caregiver burden and age.

  • Ostwald, S. K., Hersch, G, Kelley, C, Davis, S., Robinson-Whelen, S, Swank, P., Khan, M., Peck, M. (2002). CAReS: Home-based intervention for stroke survivors and their spouses. The Gerontologist, 42, (Special Issue I - October), p. 65.

Four million Americans are living with the effects of stroke, the major cause of disability among adults. CAReS (Committed to Assisting with Recovery after Stroke) has completed the first year of a 5-year NINR-funded interdisciplinary intervention study that provides education, support, skill training, counseling and social and community linkages to stoke survivors and their spouses for the first 6 months post-hospitalization. Forty protocols, that can be used in any order, guide the nurses, physical and occupational therapists in their interventions. The protocols cover such varied areas as cause and prevention of stroke, mobility, stress management strategies home safety, and financial concerns. The first 20 couples have included 10 white, 5 African-American and 4 Hispanic couples, ranging in age from 50 to 79. Four case studies of stroke survivors with left and right-sided strokes will be discussed to illustrate how the protocols are used with families with differing needs.