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Things are different around here:

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)

Activity Card Sort 2nd ed., Recovering Version

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

High physical demand leisure activities (17)


golfing, walking, fishing, gardening
Social activities (17)
traveling, family gatherings, talking on the telephone, being with
spouse or partner
Global
overall score of all four domains

120%

Design: Cross-sectional, descriptive mixed-methods data were collected on


couples coping with stroke during in-person assessments as part of an ongoing
behavioral intervention pilot.

%activities retained

100%

Methods

80%

Results

60%

Assessments allowed us to examine number of current and previous


activities, and calculate the percentage of retained activities across
four domains. The percent retained corresponded with age of the
participant and presence of physical disability. Younger couples
tended to have overall less retained daily activities as compared to
older participants. Survivors with physical stroke sequelae had
marked decreases in instrumental and high demand leisure
activities. Caregivers for survivors with no physical sequelae had
marked decreases in low demand leisure activities.

40%
20%
0%

Setting: University-affiliated community-based clinic

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

Couples >65 years old

Conclusions

120%

Activity Card Sort,


2nd ed., Recovering
Version (ACS)

%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

Stroke affects both partners and can include changes in activity


participation and role changes within a couple after the stroke
survivor returns home. Implications for interdisciplinary best
practice must go beyond focusing on the physical effects of stroke,
especially in younger couples. Early assessment and interventions to
address changes in daily activities and psychosocial factors for both
survivor and caregiver are needed.

100%
%activities retained

100%

Main Outcome
Measures:

Activities Retained Post-Stroke

The number/types of daily activities and some examples are


indicated below:
Instrumental activities (20)
dishes, shopping, paying bills, child care
Low physical demand leisure activities (35)
sitting and thinking, watching movies, photography, reading
newspaper

Couples <65 years old

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.

The ACS is an assessment used by occupational therapists to assess


clients changes in daily activities and use this information to help
promote healthy routines and increased occupational participation.

80%
60%
40%
20%

Acknowledgement of financial support:

0%
101A

106A
107A
101B
106B
Participant ID (A=stroke survivor, B=caregiver)

107B

University of Utah Consortium for Families & Health (C-FAHR)


research fund