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Activity participation and role changes for survivors and caregivers post-stroke
Jackie Einerson, Beth Cardell, Ph.D., OTR/L, Alexandra L. Terrill, Ph.D.
Department of Occupational & Recreational Therapies, University of Utah, Salt Lake City, UT, USA
Introduction
Caregiver
Stroke Survivor
Stroke is the leading cause of long-term disability in the United States, with
800,000 suffering a stroke annually. Seventy percent of stroke survivors return
home and often need assistance from friends or family, with one third of
caregivers giving at least 21 hours of care per week.
Research suggests:
Caregivers are experiencing changes in occupation, including changes in
work status, after their significant others return home. Female caregivers
report occupational loss in valued activities leading to high levels of
burden and decreased mental health.
Many stroke survivors living in the community one year post-stroke still
report low life satisfaction, which is correlated with decreased
participation in desired activities.
The couple needs to be addressed as a system after the stroke survivor
returns home to have the greatest impact during recovery.
ACS
Instrumental
Low Demand Leisure
High Demand Leisure
Social
Global
SIS
Physical Problems
(ideal score = 20)
Memory & Thinking
(ideal score = 7)
Mood & Emotion Control
(ideal score = 9)
Stroke Recovery Scale
(fully recovered = 100)
Physical
No physical
Physical
No physical
32%-68%
68%-82%
10%-30%
67%-93%
51%-69%
76%-108%
67%-97%
59%-100%
62%-100%
67%-101%
94%-100%
100%-100%
58%-100%
75%-100%
89%-100%
73%-114%
50%-89%
50%-118%
53%-104%
63%-97%
6-11
16-20
10-24
9-21
10-25
11-28
48-85
70-100
120%
%activities retained
100%
Methods
80%
Results
60%
40%
20%
0%
102A
Participants: Seven community dwelling couples that were at least 6 months post
stroke were enrolled. Three survivors and four caregivers were women. Mean
participant age was 55 years (range: 36-77).
103A
105A
108A
102B
103B
105B
Participant ID (A=stroke survivor, B=caregiver)
108B
Conclusions
120%
%activities retained
80%
60%
Stroke Impact
Scale 3.0 (SIS):
selected subscales
40%
20%
0%
Instrumental Low Demand High Demand
Stroke Survivor
Caregiver
Social
Global
100%
%activities retained
100%
Main Outcome
Measures:
Research Objective:
Empirical research to support this
phenomena is limited. The purpose of
this study was to explore these changes
in roles and participation in valued
activities after stroke.
80%
60%
40%
20%
0%
101A
106A
107A
101B
106B
Participant ID (A=stroke survivor, B=caregiver)
107B