It’s not just a minor stroke...

1. It’s not just a minor stroke... Dr. Teri Green University of Calgary Calgary Stroke Program

2. Goals • To present nursing research findings related to minor stroke • Identify functional and psychosocial reactions following minor stroke • Describe nursing strategies for promoting adaptation, health & well-being • Describe the significance of continuity of care and community re-entry • …Or simply lull you into submission

3. The Definition of Stroke/TIA A clinical syndrome characterized by the sudden onset of a focal neurological deficit, presumed to be on a vascular basis

4. Major Stroke Decreasing in All Categories Rothwell et al. Lancet 2004; 363: 1925-1933

5. Minor Stroke and TIA Vast Majority Morgenstern LB et al. Neurology 2004;62:895-900

6. Why are the “minor ones” important? • Systems of care streamlined for acute stroke. • Patients are presenting early. • Few receive thrombolytic therapy. • Among patients deemed too mild for thrombolytic therapy, up to one third are dependent or dead at hospital discharge. Barber PA et al. Neurology 2001;56:1015-1020

7. Sticks and Stones will break my bones…names will never harm me… • Minor • Transient • Mini-stroke • Little stroke • Need something that scares and emphasizes the high risk…? Unstable stroke

8. …it’s not just a minor stroke… • An Examination of Male Patient, Wife-Caregiver, and Marital Dyad Outcomes Over a 12-Month Period Following Minor Stroke

9. 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 • how this seemingly minor event influences the marital dyad in the immediate post-discharge period

10. 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 12-months following the stroke event? Secondary Questions • 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 12-months following discharge?

11. 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 , 1-2-3-6-9 & -12 months post-stroke using: • SS-QOL • SF-12v2 • BDI-II • FADGFS • BCOS

12. Demographic Characteristics

13. 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%)

14. Stroke Severity & Functional Outcomes

15. Changes in Psychosocial Measures between Discharge and 12-months Post-discharge

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

17. Predictors of Marital Function at 3 &12-months

18. Qualitative Data • Content analysis of responses to open-ended questions • SS-QOL: • BCOS: 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 • Gossiped about • Stigmatized • Isolated & abandoned • Insecure • Financial/work stability challenged • Mood changes and stress

21. 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 • Wife-caregiver hypervigilance

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

23. Realization • 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…”

31. Participant’s Personal Reflections • “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.”

32. Participant Suggestions • Lose the term “minor stroke” as it does not convey the seriousness of the event and the need for life changes • ‘Non-disabling stroke’ has many different connotations • Don’t slam the door shut behind them as they leave the hospital • Follow-up to see how they are coping in the community

33. Nursing Strategies • Pay attention to discharge planning, even for minor stroke patients • Talk to patients about their recovery • Emphasize lifestyle implications • Ensure the caregiver is up to the task • Provide resources • Determine when & how to follow-up

34. Continuity of Care • Feedback to primary care physicians and allied health • Follow-up with the patient & caregiver • When? How? • Lobby for a (nursing) follow-up clinic for all patients with stroke • Assess coping, mood, reintegration, etc. • Assess need for information – timely, appropriate

35. Role of Nurses in Secondary Stroke Prevention • Screening and monitoring of high risk population • Assessment and education about risk factors, lifestyle management issues (exercise, smoking, diet, weight, alcohol, stress management) • Counseling about possible strategies to modify lifestyle and risk factors

36. CONCLUSIONS …it’s not just a minor stroke… • Patients experienced significant improvement in functional status over time however their overall psychosocial status did not improve • Significant deterioration was noted in mood and marital function over time

37. Conclusions • Qualitatively, patients and wife-caregivers reported difficulty returning to previous life roles (including family, work, and social roles) over the 12-month period • The lack of complete functional recovery over time created a disconnect between the hope and the reality of having a ‘minor’ event

38. Thank You!