…it’s not just a minor stroke…

1. APSS Telehealth Presentation Teri Green, RN PhD Calgary Stroke Program Faculty of Nursing/University of Calgary June 2008 …it’s not just a minor stroke…

2. An Examination of Male Patient, Wife-Caregiver, and Marital Dyad Outcomes Over a Three-Month Period Following Minor Stroke

3. BACKGROUND • 50,000 Canadians have a stroke annually; minor stroke or transient ischemic attacks account of 82% of all cerebrovascular disease • Having a stroke creates a need for short and long-term adjustments for the patient as well as the family • Minor stroke patients are discharged from acute care shortly after their stroke event • There is little empirical evidence available regarding: • the effect of minor stroke on patient’s abilities to return to their previous roles and functions; and (b) how this seemingly minor event influences the marital dyad in the immediate post-discharge period

4. RESEARCH QUESTIONS Primary Question • What are the changes in patient functional status, patient and wife-caregiver health related quality of life (HRQOL) and depression, wife-caregiver strain, and marital dyad functioning between hospital discharge and 3-months following the stroke event? Secondary Questions • What are the associations between patient functional status, patient and wife-caregiver HRQOL and depression; caregiver strain; and marital dyad functioning over a 3-month period following stroke? • What are the predictors of marital function at 3-months following a minor stroke? Tertiary Question • What do minor stroke patients and wife-caregivers identify as factors affecting their HRQOL and/or caregiver strain over 3-months following discharge?

5. RESEARCH METHODS • Prospective pilot study of 38 male stroke patients and their wife-caregivers • Demographic and clinical information obtained from the health record and in-person interviews at time of discharge • Questionnaires administered, using standardized measures, at discharge and one month intervals over a period of 3-months post-stroke using: • SS-QOL • SF-12v2 • BDI-II • FADGFS • BCOS (1-,2-,&3-months)

6. Inclusion/Exclusion Criteria Inclusion Exclusion No identified spousal caregiver Moderate/severe stroke Extended hospital stay MMSE < 24 Unable to provide informed consent Unable to read/speak English • Male patient with a wife-caregiver • Minor stroke (NIHSS<4, mRS<2, BI>65) • d/c home within 7 days • MMSE ≥ 24 • Able to provide informed consent • Able to read/speak English

7. DATA ANALYSES • Patients and wife-caregivers characterized using descriptive statistics • Correlation analyses to examine relationships between biophysical and psychosocial measures • Repeated measures ANOVA & MANOVA to examine changes over time • Logistic regression analysis to determine predictors of marital function at 3-months • Conventional content analysis of responses to open-ended questions from the Stroke-Specific Quality of Life Scale and the Bakas Caregiver Outcomes Scale administered at 1-, 2-, and 3-months post-discharge

8. Demographic Characteristics

9. Stroke Characteristics • Stroke Type: ischemic 36 (95%), hemorrhagic 2 (5%) • Lesion Side: right 21 (55%), left 17 (45%) • Location: supratentorial 27 (63%), brainstem 4 (11%), unknown 7 (18%)

10. Stroke Severity & Functional Outcomes

11. Changes in Psychosocial Measures between Discharge and 3-months Post-discharge

12. Changes in Depression and Marital Function between Discharge and 3-months Post-discharge

13. Patient and Wife-caregiver Mean BDI-II Scores Over Time Patient and Wife-caregiver Mean BDI-II Scores Over Time Patient and Wife-caregiver Means FADGFS Scores Over Time

14. Patient and Wife-caregiver Mean FADGFS Scores Over Time

15. Associations Between Outcome Variables Patient: • HRQOL & depression • r=-.577, p<0.001 (discharge) • r=-.662, p<0.001 (1-month post-discharge) • r=-.495, p=0.002 (2-months post-discharge) • r=-.758, p<0.001 (3-months post-discharge) • Depression & wife-caregiver’s perception of marital function • r=.442, p=0.005 (discharge) • r=.376, p=0.020 (2-months) • r=.610, p<0.001 (3-months)

16. Associations Between Outcome Variables Wife-caregiver: • Depression & wife-caregiver’s perception of marital function • r =.362, p=0.026 (discharge) • r=.538, p<0.001 (1-month) • r=.334, p=0.040 (2-months) • r=.578, p<0.001 (3-months) • Wife-caregiver’s perception of marital function and caregiver strain • r=-.517, p<0.001 (1-month) • r=-.742, p<0.001 (2-months) • r=-.620, p<0.001 (3-months)

17. Predictors of Marital Function at 3-months

18. Qualitative Data • Transitional framework * “Passage from one life condition or status to another “ • process • time • perception • **Content analysis *Chick & Meleis (1986). Transitions: A Nursing Concern Hsieh & Shannon (2005)

19. Content Analysis • Overarching Themes • Being vulnerable • Realization of the new self and changing relationships • Subthemes • Masculine image • Hyper-vigilance • Loss

20. Being Vulnerable • Uncertainty • Fear of recurrent stroke – vulnerable to the disease • Frustration over recovery process • Lack of assurance about the future - health status - work and financial situations - lifestyle

21. Being Vulnerable • Gossiped about • Stigmatized • Isolated & abandoned • Insecure • Financial/work stability challenged • Mood changes and stress

22. Realization • Increasing awareness and insight • Apprehension about ability to put their lives back together • Continuity of the family • Maintenance of relationships

23. Adaptation • Acceptance and denial • Incorporation of physical deficits • Ongoing challenges of emotional and cognitive changes • Stabilization – changing priorities • Recognition of need for continuous adaptation

24. Key Threads • Masculinity: imposed limitations, life-changes • Hyper-vigilance: protective monitoring, control • Loss: physical, emotional, social

25. Masculinity • “I was surprised by the long term effects of the stroke…not prepared for the loss of energy and changes in mood, thinking and personality.” • “The stroke has made me useless. I can’t do the things for my family like protect them. If an intruder came in I couldn’t even defend my family. I wouldn’t even have the strength to fight off a child.”

26. Masculinity • “The largest challenge has been the feelings of depression that have been part of life since the stroke. It’s a struggle to accept that I am not the person I used to be, that I can’t contribute like I used to, it seems like I’m not worthwhile as I was before.” • “…I am feeling blue and I cry at the drop of a hat…fear and anxiety are new to me.”

27. Hyper-vigilance • “always watching” • “Since I am his wife and I am the one closest to him, the only one who can really take care of him, I really do feel this as a responsibility and yet it is so different to have him here in my space…” • “…my husband would kill me if he knew that I check on him in the night to see if he is still breathing.” • “My husband accuses me of babying him, but my over-protectiveness is an automatic reaction because I am afraid to let him go.”

28. Loss • “I am feeling the burden of having to make many life decisions because my husband doesn’t want to make any decisions himself.” • “I feel trapped by my husband and sometimes I would like to run away…I have to spend all my time with him and this has negatively impacted my relationship with friends and family.” • “I am feeling overwhelmed…the whole family system is disrupted.”

29. Loss • “…marital relationship is tense and negative with arguments over everything.” • “I am not the same person that I was before.” • “I always pride myself in being healthy and athletic, now I feel so weak. Physically I am going soft.”

30. Participant’s Personal Reflections • “There is more to life than tangibles, and I have learned to count my blessings.” • “I realize how devastating the stroke could have been…I am humbled by everything and I am most grateful.” • “…more reflective and more aware of what is important…” • “I am entering a transitional period, where I will have to learn to get over my past perceptions of self-image. Perhaps it is time to focus on other things…Previously I had a dichotomy between my physical and emotional needs. The stroke has highlighted the need to develop all aspects of myself in order to have a better quality of life. It has taught me the importance of moderation and balance.”

31. CONCLUSIONS …it’s not just a minor stroke… • Patients experienced significant improvement in functional status over time however overall psychosocial status did not improve from time of discharge • Though patients perceived a deterioration in marital function over time, wife-caregiver scores did not change significantly (on any of the psychosocial measures)

32. Conclusions • Qualitatively, patients and wife-caregivers reported difficulty returning to previous life roles (including family, work, and social roles) over the 3-month period • The lack of complete functional recovery over time created a disconnect between the hope and the reality of having a ‘minor’ event

34. Thank You! ????’s Comments???