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Dissemination of CAReS Research

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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Presentations

  • Ostwald, S.K. (2010, March), CAReS: Interdisciplinary Intervention for Stroke Survivors and Spousal Caregivers, School of Nursing, Khon Kaen University, Khon Kaen, Thailand (invited presentation to faculty and doctoral students)
  • Ostwald, S.K. (2010, February) What Do They Know?  Evidence-based Guidelines for Educating Stroke Patients and Their Caregivers after Stroke. International Stroke Conference 2010. San Antonio, TX. (invited podium presentation)
  • Ostwald, S.K. (2009, September) CAReS: Multidisciplinary Intervention for Stroke Survivors and Their Spousal Caregivers. 6 hours Pre-Conference Workshop, Huadong Hospital, Fudan University. (invited podium presentation)
  • Ostwald, S.K. (2009, September) Research with Stroke Survivors and Their Spousal Caregivers Post Hospital Discharge. Faculty & Graduate Students, Department of Nursing, College of Traditional Chinese Medicine, Nanjing, China. (invited podium presentation)
  • Ostwald, S.K. (2009, September) Factors Related to Stress Among Stroke Survivors and Spousal Caregivers. One Year versus Five Years Post Stroke.  Faculty and Students, College of Nursing, Polytechnic Institute, Macao, China. (invited podium presentation)
  • Ostwald, S.K. (2009, May) Surviving Stroke. Harris County Hospital District Community Center. (invited community presentation)
  • Ostwald, S.K. (2009, March) CAReS: A Multidisciplinary Intervention for Stroke Survivors and Spouses after Discharge Home.  University of Ljubjana School of Nursing, faculty and directors of nursing services for the university health science center. University of Ljubjana.  (invited podium presentation)

  • Ostwald, SK, Cron, SG, Godwin, KM. Predictors of Stress Among Spousal Caregivers of Stroke Survivors: Coping Skills, Social Support and Preparation for Caregiving. 2008 National State of the Science Congress on Nursing Research. Washington, DC. October, 2008. (podium presentation)

Aim:  The purpose of this study was to investigate the types of coping skills and social support that are associated with perceived stress in 159 spouses of stroke survivors during the 12 months following discharge home from an inpatient rehabilitation facility.

Methods:  Perceived stress (using the Perceived Stress Scale) was examined in a sample of 119 (75%) women and 40 (25%) men caring for a spouse at discharge, 3, 6, 9, and 12 months following discharge home. Caregivers were interviewed at the same intervals.  Repeated measures analyses with linear mixed models were conducted to initially examine the contribution of demographic variables (age, race, SES, gender), stroke survivor characteristics (FIM total, motor, and cognitive scores), and self-reported health to caregiver stress.  Subsequent models added the caregiver characteristics of preparedness for caregiving and instrument subscales for coping strategies and social support (size and type) to the initial model explaining caregiving spouses' perceived stress.  Analyses were repeated with variables eliminated until only predictors making a significant unique contribution to caregiver perceived stress were retained. Qualitative data was also collected on the spouses' perceptions of what helped them manage their stress.

Results: Demographic and stroke survivor predictors of greater perceived stress included poorer stroke survivor function, being a woman, being younger, and lower reported health status (p < .01 for all four).  Using less reframing ( p < .03) and more passive appraisal coping skills (p < .01), perceiving a lack of emotional or informational support (p < .01), reporting fewer close friends or relatives (p < .01) and lower preparedness for caregiving (p < .01) were also associated with increased stress.  There was a reduction in caregiver stress over time (F = 5.83(555); p = .02).  The findings were confirmed and enlarged through analysis of qualitative data.

Conclusions: Consistent with McCubbin and McCubbin's T-Double ABCX Model of Family Adjustment and Adaptation, the spouses of stroke survivors' responses to the stroke (perceived stress) over the 12 months post discharge from inpatient rehabilitation were a function of their exposure to a stressor (the stroke) and their preexisting vulnerabilities (age, gender, and health) that are buffered by their preparation for becoming a caregiver, their coping skills, and the number of people and type of social support provided to them.

  • Ostwald, SK. Promoting Well-Being of Stroke Survivors and Spousal Caregivers. Promoting Health in Underserved Populations: Advancing Healthy Aging. Austin, TX. February, 2008. (podium presentation)

Stroke is the third leading cause of death and the primary cause of long-term disability among older adults.  Approximately 5.3 million stroke survivors live in the community, primarily with family members.  Previous work has shown that a stroke interferes with the well-being of both survivors and family caregivers.  Perceived stress has been shown to be a major predictor of life satisfaction among stroke survivors and their spousal caregivers at 12 months post discharge from inpatient rehabilitation. The purpose of this study was to explore the predictors of perceived stress in 159 spouses of stroke survivors during the 12 months following discharge home.

Perceived stress (using the Perceived Stress Scale) was examined in a sample of 119 (75%) women and 40 (25%) men caring for a spouse at discharge, 3, 6, 9, and 12 months following discharge home. Repeated measures analyses with linear mixed models were conducted to initially examine the contribution of demographic variables (age, race, SES, gender), stroke survivor characteristics (FIM total, motor, and cognitive scores), and self-reported health to caregiver stress.  Subsequent models added the caregiver characteristics of preparedness for caregiving, coping strategies, and social support to the initial model explaining caregiving spouses' perceived stress.  Analyses were repeated with variables eliminated until only predictors making a significant unique contribution to caregiver perceived stress were retained. Qualitative data was also collected on the spouses' perceptions of what helped them manage their stress.

Demographic and stroke survivor predictors of greater perceived stress included poorer stroke survivor function, being a woman, being younger, and lower reported health status (p < .01 for all four).  Having fewer coping skills (p = .03), perceiving a lack of social support (p < .01), and lower preparedness for caregiving (p < .01) were also associated with increased stress.  There was a trend toward caregiver stress decreasing over time (F = 3.25(550); p = .07). The findings were confirmed and enlarged through the qualitative data.

Consistent with McCubbin and McCubbin's T-Double ABCX Model of Family Adjustment and Adaptation, the spouses of stroke survivors' responses to the stroke (perceived stress) over the 12 months post discharge from inpatient rehabilitation were a function of their exposure to a stressor (the stroke), the functional limitation imposed by the stroke on the survivors, and the spouses' preexisting vulnerabilities (age, gender, and health) that are buffered by their preparation for becoming a caregiver, their coping skills, and their social support system.

  • Analysis of Post-Stroke Occupational Performance: Equipment and Leisure (Hersch, G., Fourst, J., Richard, K., & Wyatt, A.) TOTA Mountain Central Conference, October, 2007, Woodlands, TX

Regardless of the spousal caregivers' employment status, each stroke survivor was equally concerned with their safety and independence and improving their health. Through the use of adaptive equipment, they were afforded the safety and security to performing everyday activities on their own. Equipment items gave them the stability to exercise for improved strength and endurance and a higher level of occupational performance. As a result, the spousal caregiver burden was lessened and they had greater peace of mind when they were not present to meet the needs of the stroke survivor.

  • Measuring Health Related Quality of Life (HRQoL) in Stroke Survivors Wasserman J., Godwin K., Ostwald S.K. ( February, 2007) SNRS, Galveston, TX

Background: The goal of this study was to measure and compare generic and disease-specific HRQoL in stroke survivors one to two years post hospital discharge.

Methods: The SF-36 (generic) and the Stroke Impact Scale (SIS) (disease-specific) were administered to 33 first-time stroke survivors. The standard gamble method was used to elicit patient utilities regarding stroke health states.

Results: Of the 33 patients, 79% were male, 67% had mild stroke, 24% had moderate stroke, and 9% had severe stroke; mean age was 66.9. Study participants scored significantly lower (p<0.05) than the general population on seven of the eight multi-item scales of the SF-36: Physical Functioning, Role-Physical, General Health, Vitality, Social Functioning, Role-Emotional, and Mental Health. Participants scored significantly lower (p<0.001) than the general population on both physical and mental health component summary measures. Using the SIS, participants had a mean score of 57.23 on the physical summary score. On the four component scales of the physical summary score, participants had mean scores of: 44.14 on Strength, 50.31 on Hand Strength, 65.93 on Mobility, and 71.26 on Activities of Daily Living (ADL). Participants had mean scores of 79.55 on Memory, 85.91 on Communication, 73.18 on Emotional, and 57.68 on Social Participation.  SIS Physical was significantly correlated (p<0.05) with both SF-36 physical measures. Both the SF-36 mental component scores and Mental Health domain measure were significantly correlated with the SIS measures of ADL, Memory, Communication, Emotional, and Social Participation. The mean standard gamble utility score for all participants was 83.2, with a range of 50-100.

Conclusion: Stroke survivors one to two years post stroke had significantly lower scores than the general population on most of the SF-36 health domains with the exception of bodily pain. Positive correlations with major domains of the disease-specific SIS indicate that the SF-36 was sensitive to stroke health states.  Further research with a larger sample size and severity sub-group comparisons is warranted.

  • 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) Gerontological Society of America, November, 2006, Dallas, TX

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) Gerontological Society of America, November, 2006, Dallas, TX

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) Gerontological Society of America, November, 2006, Dallas, TX

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.) Gerontological Society of America, November, 2006, Dallas, TX

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. (2006) Preparatory strategies for life after discharge: Lessons from the CAReS study. Presented at the National Stroke Association Regional Workshops, September, 2006 Las Vegas, NV, & Boston, MA; October, Orlando FL; December, Chicago, IL.

The experiences of stroke survivors and their family caregivers during the first year after hospital discharge suggest the need for better preparation for discharge.  Recommendations are made for education focused on knowledge of stroke, assistance with securing medications, therapy, and follow-up medical and laboratory examinations, lifestyle changes to prevent further strokes, discussion of risk factors and first aid for falls and seizures, and understanding the importance of early recognition of the symptoms of stroke and the importance of calling 911.

  • Ostwald, S.K., Hernandez, F., Coutinho, F. (2006, October) Adverse events experienced by stroke survivors the first year following hospital discharge. Presented at the American Rehabilitation Nurses Conference, Chicago, IL

Purpose: The purpose of this study was to describe the comorbidities, impairments, and complications experienced by stroke survivors during inpatient rehabilitation and to identify correlations among comorbidities, impairments, complications and rehabilitation length of stay (LOS).

Methods: The sample was 97 stroke survivors with an average age of 66.2 (SD = 8.84), who were discharged home with spousal caregivers.   Demographic data, side and type of stroke, stroke-related impairments, complications, and comorbidities were abstracted from the stroke survivor’s chart.  In addition to descriptive statistics (mean, standard deviation, and range), Pearson Product-Moment Correlations were computed among the variables of interest. Because these variables were intercorrelated, multiple regression analysis was used to examine the unique contributions of the age, gender, socioeconomic status, number of impairments and number of complications to the rehabilitation LOS.

Results: The mean LOS was 45.4 days (Median = 24.5 days; Mode = 11 days).  Stroke survivors experienced an average of 2.4 stroke-related comorbidities (SD = .85, range 0-6).  Only 2 (2.1%) stroke survivors experienced no stroke-related comorbid conditions and 57 (59.4%) experienced > 3;  hypertension was the most common comorbidity (86.3%). Stroke survivors averaged 6.9 (SD = 2.78, range 2-13) stroke-related impairments; hemiparesis is the most common.  On average, stroke survivors experienced 3.9 complications (SD = 3.18, range 0-13); the most common complication was depression (n = 43, 44.8%).  The overall model predicted 33% of the variance in the rehabilitation LOS, which was significant (F(6, 89) = 7.39; p < .0001).  The number of complications (t(95) = 5.18; p < .0001) predicted the rehabilitation LOS over and above the other variables in the model.

Conclusions: Recovery from stroke-related impairments; prevention, rapid recognition, and effective treatment of medical complications; and lifestyle education and pharmaceutical treatment of stroke-related comorbidities to prevent recurrent strokes are dependent upon a successful interdisciplinary rehabilitation team that includes the stroke survivor and the family caregiver.

  • Work Patterns After Stroke: Impact on Stroke Survivors and Their Spouses (SK Ostwald, G Hersch, & F Coutinho) American Society on Aging/National Council On Aging, March, 2006, Anaheim, CA. Gerontological Society of America, November, 2006, Dallas, TX

Most families in the US today are dual earner families.  A sudden stroke resulting in unemployment for one partner has significant implications for the psychological and financial health of the family, and ultimately the community.  Only 5 of 49 stroke survivors who were working prior to their stroke, returned to work and were employed one year following hospital discharge.  However, 85% of spouses who were employed prior to the stroke continued to work one year later.

  • Symposium on the Meaning of Health in Chronic Illness – (SK Ostwald, DB Justice & R Justice) American Society on Aging/National Council On Aging, March, 2006, Anaheim, CA.

This study presented current data on the demographic and physical characteristics of stroke survivors in the CAReS study.  It identified the predictors of physical and psychological health at hospital discharge and life satisfaction at one-year post hospital discharge. Blair Justice recounted his own experiences of trying to regain wellness after a stroke, with the help and support of his wife, his volunteer work with pet therapy, and with the support of others.  Rita Justice reviewed her husband’s definitive study of A Different Kind of Health (1998), and discussed how people cope with chronic illness and reconstruct new lives.

  • Occupations Gained and Lost: A Caregiver Perspective (F Coutinho, G Hersch, & SK Ostwald) Occupational Adaptation Symposium, March, 2006.

This presentation identified the longitudinal changes in occupations among caregivers of stroke survivors during one year following stroke. This provided a research base for therapists to address caregiver roles, measure changes in occupations due to a stroke, and increase meaningful participation in daily life.

  • Spousal Caregivers of Stroke Survivors: Burden, Coping And Social Support (SK Ostwald, S Robinson- Whelen & F Coutinho) Congress on Chronic Care, Jan, 2006, Bangkok, Thailand.

Stroke, a cause of death and serious, long-term disability among older adults throughout the world strikes 15 million people annually; 5 million die and 5 million survive with disabilities.  Most stroke survivors are discharged home and are assisted
by a family caregiver. Perceived burden, types of coping strategies, and the amount and kind of social support used by caregivers are reported in this study. Caregivers found support in family, friends, health care professionals, and in their commitment to each other. While the experience varied among spouses, in general, most moved toward a degree of adaptation to the caregiver role during the 12 months.  

  • Examining Correlates of Burden and Depression in Spousal Caregivers of Stroke Survivors (S Robinson-Whelen, P Swank & SK Ostwald) Gerontological Society of America, Nov, 2005, Orlando, FL.

Burden and depression were examined in a sample of 101 women and 30 men caring for a spouse returning home after a stroke. 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. 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. Demographic factors, including gender and race, accounted for little variance in burden or depression.

  • Adaptation: The Caregiver’s Experience During the First Year After a Stroke (F Coutinho, SK Ostwald, J Spencer) Texas Occupational Therapy Association, November 2005, Houston, TX

The presentation included a discussion of themes and sub-themes related to adaptation, changes in themes over the 12 month period following stroke, and a comparison of themes based on ethnicity and gender.

  • Recovering from Stroke: The Journey Together (SK Ostwald & F Coutinho) National Gerontological Nurses Association, October 2005, Myrtle Beach, SC

This session included a discussion of the common themes expressed by the stroke survivor and the caregivers as together they sought to come to terms with the impact of stroke on their lives and to adapt to an altered lifestyle.  The themes included emotions, such as love, fear, frustration, and helplessness; loss of independence, freedom, and autonomy that often necessitated changes in familiar roles; support from family, friends, and professionals; coping strategies, such as maintaining hope, trusting God, and asking for help; and finally ways in which they attempted to adjust and or adapt to an altered life together.

  • CAReS: The Development and Implementation of a Randomized Clinical Trial with Stroke Survivors and Their Spousal Caregivers after Discharge from the Hospital (SK Ostwald) US-Russian Nursing Conference, Aug, 2005, Norgorod, St. Petersburg & Moscow, Russia

This paper described the CAReS intervention study and addressed the need to develop a program to educate and support stroke survivors and their family members in the home, once inpatient rehabilitation has ended.  It included a discussion describing the length and content of each intervention visit, and thus, provided a better understanding of the needs of stroke survivors and their spouses after discharge.

  • Predictors of Physical and Psychosocial Function of Stroke Survivors at Discharge from Inpatient Rehabilitation (SK Ostwald, P Swank, & S. Robinson-Whelen) February, 2005, International Stroke Conference, New Orleans, Louisiana

This manuscript won the 2004 Stroke Manuscript of the Year from the American Heart Association Council of Cardiovascular Nurses.  The paper identified the predictors of function, stress, and perceived recovery for stroke patients discharged home with a spousal caregiver. Understanding variables that predict the stroke survivors’ psychosocial recovery is complex; while functional recovery is a powerful predictor, depression, age, and Socio-economic status also impact recovery. These factors all need to be considered when putting together a discharge plan.

  • Minority Stroke Survivors and Spousal Caregivers: Are Poorer Outcomes Due to Ethnicity, Socio-Economic Status or Age? (SK Ostwald, P Swank, & S Robinson-Whelen) November, 2004, Gerontological Society of America, Washington DC.

African Americans and Hispanics have 2 1/2 times the stroke risk of the other ethnic groups, causing severe impact on their families. Of 97 couples enrolled in CAReS research study following discharge from hospital to home, 36% were minorities, almost equally divided between African Americans and Hispanics. 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 Socio- Economic status or younger age of the couples, rather than differences in race or ethnicity.

  • Conducting Longitudinal Research with Older Adults: Recruitment and Retention Strategies Used in CAReS (SK Ostwald, C East, M Peck, C Schulz) 18th Annual Convention, National Gerontological Nursing Association, October, 2003, Houston, TX.

The presenters discussed ethical issues and practical concerns in recruiting stroke patients and their spouses, demonstrated an ACCESS database that helps the staff to manage multiple contacts over a 12 month period, and discussed techniques for maintaining satisfaction and continued participation for couples in the control and treatment groups.

  • Stroke is a Family Affair: The CAReS Intervention Study (SK Ostwald) 18th Annual Convention, National Gerontological Nursing Association, October, 2003, Houston, TX.

This poster won the Judith Baun award for outstanding clinical research and was also presented as a paper at the conference. The poster presented preliminary baseline information on the participants, including the relationships between stroke survivor and spousal stress and depression, and relationships between stroke survivor function, quality of life and caregiver burden. Preliminary analyses suggested that there are relationships between stroke survivor and caregiver stress and depression and that functional status influences stress.

  • The Whole is Greater Than the Sum of the Parts: Interdisciplinary Intervention for Stroke Survivors and Their Spouses. (SK Ostwald, S Davis, G Hersch, C Kelley) 18th Annual Convention, National Gerontological Nursing Association, October, 2003 Houston, TX

The presentation related to the testing of best practices in home care for stroke survivors.  The presenters discussed an interdisciplinary team approach to providing education, skills training, counseling, support and linkage to community resources for stroke survivors and their spousal caregivers in the CAReS study.

  • Discharge Disconnect: What happens when the patient goes home? (SK Ostwald, G Hercsh, C Kelley) American Society on Aging/National Council on Aging, March 2003.

Stroke survivors’ recovery is jeopardized every day when they are discharged without adequate planning Four case studies from an ongoing intervention research study with stroke survivors and their spouses will be presented by a nurse, an occupational and a physical therapist. These case studies will illustrate the discharge disconnect experienced by 50% of the couples in the intervention group. Emphasis will be placed on ways to improve the continuity between the hospital and the home.

Posters

  • Godwin, K.G., Cron SG, Ostwald SK. (2010, February) Long- term Stroke Related Health Outcomes for Stroke Survivors and their Spousal Caregivers. International Stroke Conference 2010. San Antonio, TX. (poster presentation)
  • Johnson, K.M., Kelley, C., Ostwald, S.K. (2010, February) Disability of the Stroke Survivor and Burden of the Spousal Caregiver. American Physical Therapy Association's Combined Sections Meeting.  San Diego, CA. (poster presentation)
  • Derkits, L., Janssen, K., Ostwald, S.K. (2009, November) The Role of Faith in Stroke Recovery.  Gerontological Society of America. Atlanta, GA. (poster presentation)
  • Ostwald, S.K., Godwin, K.M., Cron, S.G. (2009, March) The Impact of Stroke on Couples’ Expressions of Mutuality. XVII International Family Therapy Association World Congress, Portoroz, Slovenia. (poster presentation)
  • Godwin, KM, Wasserman, J, Cron, SG, Ostwald, SK. The Effect of Aphasia on Depression and Mutuality Among Stroke Survivors During the First Year Post Stroke. Gerontological Society of America. North Harbor, MD. November, 2008. (poster presentation)

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, SK, Cron, SG, Godwin, KG, Wasserman, J. Predictors of Burden Among Spousal Caregivers of Stroke Survivors 12 months after Discharge from Inpatient Rehabilitation. 6 th World Stroke Congress. Vienna, Austria. September, 2008. (poster presentation)

Aim : The purpose of this study was to determine the predictors of decreased burden among 159 spouses of stroke survivors during the 12 months following discharge home from an inpatient rehabilitation facility.

Methods: Caregiver burden was examined in a sample of 119 women and 40 men caring for a spouse at home.  Repeated measures analyses with linear mixed models were conducted to initially examine the contribution of demographic variables, stroke survivor FIM and depression scores, and caregiver self-reported health, depression, and amount of employment to caregiver burden.  Subsequent models added the caregiver preparedness for caregiving and social support to the initial model explaining caregiving spouses' perceived burden.  Analyses were repeated with variables eliminated until only predictors making a significant unique contribution to caregiver burden were retained.

Results: Burden scores did not change over time.  Higher burden was associated with higher SES and greater caregiver depression.  Lower burden was associated with higher FIM Motor scores, # of people providing support, Positive Social Interaction scores, and Preparedness scores.  Those working fewer than 20 hours per week had lower burden scores than those that worked 20 or more hours per week.

Conclusions : Consistent with McCubbin and McCubbin's T-Double ABCX Model of Family Adjustment and Adaptation, burden experienced by spouses of stroke survivors over the 12 months post discharge from inpatient rehabilitation was associated with the decreased motor function in the stroke survivor, caregiver depression, and the extent of caregiver employment demands. Preparedness for the role and social support helped to moderate the burden.

  • The International Stroke Conference Feb. 19-22, 2008 in New Orleans, LA

Predictors of Resuming Therapy within Four Weeks after Discharge from Inpatient Rehabilitation
Sharon Ostwald, Kyler Godwin, Hee Cheong, Stanley Cron

Changes in Health-Related Quality of Life for Long-Term Stroke Survivors as Measured by the Stroke Impact Scale
Joan Wasserman, Kyler Godwin, Sharon Ostwald, Stanley Cron

Expressions of Spirituality in Caregivers of Stroke Survivors
Rebecca Casarez, Kyler Godwin, Sharon Ostwald

Impact of Inpatient Rehabilitation Complications on Stroke Survivor Recovery
Karen Janssen, Joan Wasserman, Sharon Ostwald

Outpatient Rehabilitative Service Cost the First Year Post Stroke
Kyler Godwin, Joan Wasserman, Sharon Ostwald

  • Wasserman, J., Godwin, K., Ostwald, SK. Generic and Disease-Specific Health Related Quality of Life (HRQOL) in Stroke Survivors. International Society for Pharmacoeconomic Outcomes Research. 12th Annual Meeting, Arlington , VA. , May 2007 (poster presentation)

Objectives : To measure and compare generic and disease-specific HRQoL in stroke survivors one to two years post hospital discharge.

Methods: The SF-36 and the Stroke Impact Scale (SIS) were administered to 33 stroke survivors. The standard gamble method was used to elicit utilities regarding stroke health states.

Results: Of the 33 patients, 79% were male, 67% had mild stroke, 24% had moderate stroke, and 9% had severe stroke; mean age was 66.9. Study participants scored significantly lower (p<0.05) than the general population on seven of the eight multi-item scales of the SF-36: Physical Functioning, Role-Physical, General Health, Vitality, Social Functioning, Role-Emotional, and Mental Health. Participants scored significantly lower (p<0.001) than the general population on both physical and mental health component summary measures. Using the SIS, participants had a mean score of 57.23 on the physical summary score. On the four component scales of the physical summary score, participants had mean scores of: 44.14 on Strength, 50.31 on Hand Strength, 65.93 on Mobility, and 71.26 on Activities of Daily Living (ADL). Participants had mean scores of 79.55 on Memory, 85.91 on Communication, 73.18 on Emotional, and 57.68 on Social Participation. SIS Physical was significantly correlated (p<0.05) with both SF-36 physical measures. Both the SF-36 mental component scores and Mental Health domain measure were significantly correlated with the SIS measures of ADL, Memory, Communication, Emotional, and Social Participation (p<0.05). The mean standard gamble utility score for all participants was 83.2.

Conclusions : Stroke survivors one to two years post stroke had significantly lower scores than the general population on most of the SF-36 health domains with the exception of bodily pain. Positive correlations with major domains of the disease-specific SIS indicate that the SF-36 was sensitive to stroke health states. Further research with a larger sample size and severity sub-group comparisons is ongoing.

  • Risk Factors Associated with Pain in Elderly Stroke Survivors ( S Decker, S Ostwald, S Cron) International Stroke Conference, ( February, 2007), San Francisco, CA

Introduction: Pain is a common complaint among stroke survivors, with prevalence rates between 19% and 74%. Previous pain research with stroke survivors has focused on prevalence, intensity, location, treatment, and related factors associated with pain. The limited number of research studies about risk factors associated with pain in stroke survivors excludes neurological symptoms. Because patients may have multiple risk factors, there is a need to examine other variables associated with pain in stroke survivors. Of particular interest with the elderly is the presence of pain within the context of preexisting chronic diseases. The purpose of this cross sectional study was to describe the risk factors associated with pain in elderly stroke survivors.

Methods and Sample: The sample included 159 stroke survivors, predominately male, with a mean age of 66.37 years. A majority of the sample was White followed by African-Americans. Fifty-four (39%) of the stroke survivors had pain documented in their charts during the hospital stay.

Results: Based on a review of symptoms in oncology patients and stroke survivors, 25 symptoms, designated as diagnoses, complications and sequelae, were identified from the CAReS (Committed to Assisting with Recovery after Stroke, NIH/NINR 1R01 NR035316) data set that would likely be pain related. Univariate data analysis using Chi-square resulted in a significant correlation with 17 diagnoses, complications and sequelae. All of the significant variables from the univariate analysis were included in the logistic regression forward selection method. For example, hemiplegia (p < 0.01) and spasticity (p < 0.01) were correlated with pain and represent two risk factors that were included in the model. The final model included 5 risk factors most strongly associated with pain, musculoskeletal problems (p = 0.0035), cognition (p = 0. 0005), hemiplegia (p = 0.0012), sleep disorder (p< 0.0001), and spasticity (p < 0.0001). The odds of reporting pain in those with spasticity was over twice the odds of reporting pain in those without spasticity (OR = 2.40, 95% CI, 1.03 – 5.61). The overall predictive ability of the model to discriminate between those with pain and without pain was 0.82.

Conclusion:  The study of multiple risk factors is needed to determine the appropriate reliable and valid instruments for the assessment of the risk factors associated with pain in stroke survivors. Future research is needed to explore the interventions that affect the multiple risk factors that include preexisting diseases and the consequence of pain.

  • Ostwald, SK, Wasserman, J, Godwin, K, Cron, S (2007). The effect of depression and stress on life satisfaction among stroke survivors and spousal caregivers at 12 to 24 months post hospital discharge.  The Gerontologist . Special Issue, October, A42, p. 67.
  • Wasserman, J, Godwin, K, Ostwald, SK, 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.

Objectives: The goal of this study was analyze changes in disease-specific HRQoL as measured by the Stroke Impact Scale (SIS) in stroke survivors from initial stroke date to one and a half to four years post hospital discharge. Methods: T he Stroke Impact Scale (SIS) was administered to 33 first-time stroke survivors discharged home from the hospital at baseline, 3 months, 6 months, 9 months, 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 the initial stroke event and this 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, 66.7% had mild stroke, 24.2% had moderate stroke, and 9.1% had severe stroke. The average age was 68 years, with a range of 53 to 87 years. A linear mixed model for repeated measures showed statistically significant changes over time for all subcomponents of the SIS: physical and emotional component scores improved significantly (p<0.0001), while social participation, memory and communication scores decreased significantly over the same time period (p<0.0001, 0.020 and 0.002, respectively). Further, statistically significant decreases in scores were seen between 12 month SIS scores and the additional sixth time point SIS 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=<0.0001). Conclusions: Increases in physical and emotional SIS scores indicate significant improvement in these constructs over time. However, significant decreases in social communication, memory and communication were seen for this same time period. These results indicate that while there may be significant physical improvement, individuals were still struggling with social reintegration, communication and memory. Results from this preliminary study demonstrate the need for continued longitudinal research on HRQOL and its determinants in this population.

  • Capturing Costs for Outpatient Rehabilitative Stroke Services (J Wasserman, K Godwin, SK Ostwald) American Stroke Association, Feb, 2006, Kissimmee, FL.

Outpatient medication costs and service utilization for one year (2002-2003 /2003-2004) were calculated for 59 stroke survivors enrolled in an ongoing NINR-sponsored stroke study.  Of the 59 patients, 37 (63%) had mild stroke, 16 (27%) had moderate stroke and 6 (10%) had severe stroke. Stroke severity was based on NIH Stroke Scale scores.  Patient documented notations in study calendars were used to capture service utilization. Costs for services were based on Medicare reimbursement rates. Medicaid reimbursement rates and average wholesale price (AWP) were used to estimate costs for medications. The mean cost per patient for outpatient stroke services and medications for the first year post discharge was $16,175.  The average cost of medication was $4,798 per person, while the average cost of service utilization was $11,377. Annual mean costs were $26,311for severe stroke, $17,976 for moderate stroke and $13,752 for mild stroke, Service utilization constituted the majority of cost within each group: 82.2% (severe), 72.6 % (moderate) and 65.4% (mild). Although costs varied by severity, medication costs were similar and remained constant among all three groups (roughly $4,500-$5,000 per year).  However, average cost and utilization of services decreased even when stratified by severity.

  • The Effects of Stroke-Related Co-morbidities, Impairments and Complications on Stroke Survivors’ Length of Stay in Rehabilitation: The CAReS Study (SK Ostwald, K Janssen) International Stroke Conference, February, 2005, New Orleans, Louisiana.

The purpose of this study was to describe the Co-morbidities, impairments, and complications experienced by stroke survivors during inpatient rehabilitation and to identify correlations among Co-morbidities, impairments, complications and rehabilitation length of stay. Recovery from stroke-related impairments; prevention, rapid recognition, and effective treatment of medical complications; and lifestyle education and pharmaceutical treatment of stroke-related Co-morbidities to prevent recurrent strokes are dependent upon a successful interdisciplinary rehabilitation team that includes the stroke survivor and the family caregiver.   

  • CAReS: An Interdisciplinary Randomized Clinical Trial with Stroke Survivors and Their Spousal Caregivers (SK Ostwald, S Davis, G Hercsh, C Kelley, D Griffith) February, 2005 International Stroke Conference, New Orleans, Louisiana.

The purpose of this poster was to describe the components of the CAReS intervention and to demonstrate the customized ACCESS database used to track the intervention. This study addresses the “black box phenomena” in nursing intervention research by fully describing the length and content of each intervention visit, and thus, provides a better understanding of the needs of stroke survivors and their spouses after discharge.

  • Interactions among stress, depression, coping and physical function in stroke survivors and their spousal caregivers (SK Ostwald) Gerontological Society of America, November, 2003, San Diego, CA

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.

  • The Black Box: Describing the Intervention in Nursing Research (SK Ostwald) 18th Annual Convention, National Gerontological Nursing Association, October, 2003 Houston, TX.

A common complaint about clinical nursing research, especially psycho- educational studies, is that the interaction between the nurse and the patient is not well described, and thus remains a “black box.” Nurses have been resistant to specifying their interventions, claiming that each patient is an individual and so every interaction must be different. The poster demonstrated the use of an ACCESS database to keep track of the intervention.

  • Addressing the Wounds of Caregiving: Promoting Holistic Healing Through a CAReS Intervention Study (M Peck, SK Ostwald, S Davis) 18th Annual Convention, National Gerontological Nursing Association, October, 2003, Houston, TX.

Quantitative data collected from caregivers at baseline assessments included scores from the Geriatric Depression Scale short form and the Perceived Stress Scale and were provided graphically. Demographic data included age, race, education, gender, working status, and responsibility for caring for others on 79 caregivers that were recruited and randomized into the study. Qualitative data from surveys were provided to demonstrate different perspectives of the caregiving role.