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Grace Warner, Tanya Packer, Michelle Villeneuve, Asa Audulv & Joan Versnel
To cite this article: Grace Warner, Tanya Packer, Michelle Villeneuve, Asa Audulv & Joan Versnel
(2015) A systematic review of the effectiveness of stroke self-management programs for improving
function and participation outcomes: self-management programs for stroke survivors, Disability and
Rehabilitation, 37:23, 2141-2163, DOI: 10.3109/09638288.2014.996674
REVIEW
Abstract Keywords
Purpose: A systematic review of stroke self-management programs was conducted to: (i) identify Family-centred care, function, goal-setting,
how many and what self-management support strategies were included in stroke self- participation, self-management, stroke
management interventions and (ii) describe whether self-management programs effectively
improved outcomes, focusing specifically on function and participation outcomes. Methods: History
Twelve databases were searched for the years 1986–2012 to identify self-management
programs for stroke survivors. Pre-post, quasi-experimental and randomized controlled trial Received 10 June 2014
study designs were included. Descriptive information about the intervention was scrutinized to Revised 1 December 2014
identify what self-management support strategies were present in the intervention and Accepted 5 December 2014
comparisons were made between programs using a group versus a one-to-one format. All Published online 12 January 2015
outcomes were included and categorized. Results: The most prominent strategies identified in
our review were goal setting and follow-up, and an individualized approach using structured
information and professional support. There are indications that self-management programs
can significantly increase participation and functional ability. However, the high level of clinical
heterogeneity in program delivery, outcomes and level of stroke severity made it impossible to
conduct a meta-analysis. Further examination of individual self-management support
strategies, such as linking rehabilitation goal setting to post-acute self-management programs,
the inclusion of family members and the contribution of peer-support is warranted.
functional tasks to performing self-care activities [12]. The World were to: (i) identify how many and what self-management support
Health Organization’s International Classification of Functioning, strategies were included in stroke self-management interven-
Disability and Health (ICF) classification system defines partici- tions using the de Silva criteria and (ii) describe whether
pation as ‘‘participation in a life situation’’ [13,14], which is self-management programs effectively improved outcomes, focus-
sometimes divided into participation in purposeful activities in ing specifically on function and participation outcomes.
daily life (e.g. activities of daily living) and societal involvement
(e.g. ability to participate in social settings) [15]. Participation has Methods
previously been operationalized by various assessments, such as
This review was part of a larger systematic review of intervention
accomplishment of daily activities [16–18], participation in
studies on self-management interventions for persons with
society [19], occupational gaps [20], community participation
neurological conditions. The diversity of the conditions and the
[21] or community reintegration [22]. However, participation
unexpectedly large number of studies that met the initial inclusion
outcomes are rarely assessed in self-management programs
criteria, created a very clinically heterogeneous group of partici-
[23,24]. Most systematic reviews of self-management programs
pants. To increase our understanding of self-management pro-
prefer to focus on clinical outcomes for chronic conditions such as
grams, and their effectiveness, this review focuses only on
diabetes [25–27], asthma [28,29] or osteoarthritis [30].
programs delivered to stroke survivors. The search strategy and
Assessing outcomes such as function or participation are
study selection methodology was the same for the full review and
appropriate for stroke survivors who often experience significant
the sub-study on stroke survivors. The study selection criteria
disruption in their functional abilities and participation in
were also the same, except the participant inclusion criteria was
everyday life due to long-term impairments such as fatigue [31],
narrowed to participants with stroke. After studies were identified
dysarthria [32], dyspraxia [33] and lower extremity weakness
an abstract and full-article review were completed to determine
[34]. These disruptions can have a significant impact on their
eligibility; for this study data extraction and synthesis were
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assistant and the two primary investigators (G.W. and T.P.) using a
Comparison group relevance assessment worksheet to determine final eligibility.
Where there was a difference of opinion the article was discussed
If the study had a comparison group, it was included if the
among the research assistant and the two primary authors until
comparison group was defined as usual care, information only or
consensus was reached.
a placebo group (i.e. to eliminate the effect that the outcome was
due to increased contact with a health provider rather than the
Data extraction and management for studies with stroke
intervention itself). Studies which compared two self-manage-
survivor participants
ment interventions without a usual care, information only or
placebo group were excluded. After final eligibility was determined, data extraction and
synthesis were conducted on studies with stroke survivor partici-
Outcomes pants. Four of the authors independently extracted data. Each
study was extracted by two individuals and organized using data
All outcomes were included and categorized in Table 1.
extraction forms in Excel. Conflicts were looked at in depth by the
first two authors, and a consensus decision was reached.
Search strategy
Information from the data extraction forms was used to create
To identify relevant studies the following 12 databases tables on characteristics of the study participants and interven-
were searched: MEDLINE (OvidSP), the Cochrane Library– tions (Table 2), self-management strategies included in the
Wiley (includes CENTRAL, DARE and Economic Evaluations interventions (Table 3) and outcomes assessed (Table 4). All
Database), EMBASE (OvidSP), CINAHL (EBSCOhost), AMED descriptive information about the intervention was scrutinized to
(OvidSP), PsycINFO (OvidSP), National Research Register, SCI- identify whether the self-management strategies identified by de
EXPANDED (Web of Science–ISI), ERIC (Education Resources Silva (2011) were present or not present. One of the de Silva
Information Clearinghouse–WilsonWeb), PEDro, OT Seeker and (2011) criteria, having an opportunity to share/learn from other
REHABDATA. The search was limited to the years 1986–2012, service users, was used to stratify studies into those delivered in a
because self-management programs emerged during this time group versus a one-to-one format [37]. The remaining strategies
period. Search terms for each database are in Appendix 1. The were coded 1 if present and 0 if absent. In addition, the article was
search was conducted for all neurological groups simultaneously, examined for any mention of having a theoretical underpinning
but this study will focus on only the studies reporting outcomes for the intervention. Although the review was focused on whether
for participants with stroke. the strategies identified by de Silva (2011) were present or absent
Study reference, Stroke severity, family Participants’ age and Intervention theory and Intensity and Location and person Comparison group for
country, type of study caregiver involved female percentage description duration of intervention delivering intervention intervention Risk of Bias assessment
Group
[38]; Australia; RCT First stroke: expected 66 (SD 10.67); Modified CDSMP; 7-week period, for 2 h In a community setting Standard post-discharge Randomization and
discharge to home; 33% taught content on each week first 6 by health rehabilitation as allocation conceal-
Yes topics pertaining to weeks was regular professionals offered through the ment is low. Unclear
G. Warner et al.
health and well- CDSMP, final ses- health system blinding of interven-
being, emphasize sion was stroke tion providers, out-
group interaction and specific come administration
support, and rein- and assessment.
forces solution Good explanation of
focused behaviours, dropouts. No evi-
aimed at assisting dence of selective
individuals to reporting.
actively manage the
impact of chronic
conditions on all
domains of their life.
[39]; Canada; Pre–post Medical diagnosis of 68 (SD 10.5); 33% Social-cognitive theory: 8-week period twice a In a community setting Standard education No evidence of ran-
stroke, at least 3 the first hour of each week, for 2 h includes by health profes- program called domization, alloca-
months post-stroke, session involves dis- one hour of exercise sionals and physio- Living with Stroke tion concealment, or
completed all active cussion of weekly and one booster ses- therapy assistant and blinding of interven-
stroke rehabilitation; topics, short-term sion 6 weeks later volunteers tion providers, par-
Yes goal setting and ticipants, outcome
problem solving, administration or
while the second outcome assessment.
hour is devoted to Good explanation of
exercise. dropouts. No evi-
dence of selective
reporting.
[40]; Australia; RCT Confirmed stroke diag- 69 (SD 11); 59% Modified CDSMP: 8-week period, In a community setting Access to the informa- Randomization and
nosis of 3 months; stroke-specific for 2 h each by health profes- tion and education allocation conceal-
Yes optional chronic condition week sional and peer provided by the ment is low. No
self-management leader(s) hospital team or blinding of interven-
Intervention that (i) their local general tion providers or
only includes stroke practitioner participants, blinding
survivors; (ii) has of outcome adminis-
greater contact time tration and assess-
than original ment, good
CDSMP; (iii) only explanation of drop-
delivered by health outs. No evidence of
professionals and selective reporting.
peer leaders skilled
in stroke and trained
by the National
Stroke Foundation;
(iv) provides targeted
stroke-specific infor-
mation each week
and (v) revisits infor-
mation provided in
Disabil Rehabil, 2015; 37(23): 2141–2163
[41]; Australia; RCT Clinical diagnosis of at Intervention ¼ 70 (SD Multi-disciplinary team. 7-week period, 2.5 h In a community setting Usual care, wait listed Evidence of randomiza-
least one stroke and 9), 17%; con- The community once-a-week includes by multidisciplinary for intervention tion, but allocation
community dwelling, trol ¼ 73.1 (SD 9.3); Living after Stroke 1 h physical activity, team of health pro- concealment is
no ongoing rehab 31% for Survivors and half-an-hour healthy fessionals: physio- unclear. No blinding
therapy; Carers programme options tea, and 1 h therapist; social of intervention pro-
Yes minimal combined 1-h phys- education session worker; dietician; viders or participant.
ical activity (warm clinical nurse con- Blinding of outcome
up; circuit; cool sultant; speech lan- administration and
down), half-an-hour guage pathologist; assessment for Stroke
healthy options tea OT Impact Scale. Good
DOI: 10.3109/09638288.2014.996674
implemented their
action plan at home
2145
(continued )
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Table 2. Continued
2146
Study reference, Stroke severity, family Participants’ age and Intervention theory and Intensity and Location and person Comparison group for
country, type of study caregiver involved female percentage description duration of intervention delivering intervention intervention Risk of Bias assessment
during the week
before the next ses-
sion and reported on
progress at the
G. Warner et al.
[47]; USA; RCT Diagnosis of ischemic 58 (no SD); Therapeutic Alliance Once 45 min at time of In the hospital at the Verbal and written Poor randomization and
stroke or TIA; 46 % Model with motiv- discharge time of discharge by information given at unclear allocation
National Institutes ational interviewing: health professionals discharge concealment. No
of Health Stroke collaboration blinding of interven-
Scale (NIHSS) between the patient, tion providers, par-
score of 15; caregiver, and health ticipants, outcome
Yes provider. Stroke edu- administration and
cation and post-dis- assessment.
charge care needs Unclear explanation of
were addressed and dropouts. No evi-
DOI: 10.3109/09638288.2014.996674
needs to perform;
(continued )
2147
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2148
G. Warner et al.
Table 2. Continued
Study reference, Stroke severity, family Participants’ age and Intervention theory and Intensity and Location and person Comparison group for
country, type of study caregiver involved female percentage description duration of intervention delivering intervention intervention Risk of Bias assessment
client is taught use of
goal-plan-do-check
strategy to handle
difficulties in self-
care performance;
OT and client for-
mulate a plan by
identifying domain-
specific strategies;
client is encouraged
to use training diary
to keep track respon-
sibility for goals; OT
informs other staff
and family about the
client’s goals and
strategies; client
practices strategies
and activities on own
and with OT; client
and OT discuss and
evaluation strategies
implemented and
formulate new goals.
No caregiver specific
training.
SD, standard deviation; OT, occupational therapist; CDSMP, Chronic disease self-management program.
Disabil Rehabil, 2015; 37(23): 2141–2163
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intervention intervention based on CDSMP based on CDSMP based on CDSMP exercise and specific symp- symptoms and
protocol protocol protocol relaxation toms, but yes knowing when to
managing emo- take appropriate
tional action
consequences
[39] 3Mentions goal set- 3Mentions problem Mentions social- 3Practiced exercises 3Therapist modified 3Discussion on pre- 3Discussion on 6: No action plan-
ting and use of solving as part of cognitive theory as part of exercises for venting stroke symptoms of ning/homework
Goal Attainment intervention so may have intervention individuals and healthy stroke
Scale in text existed behaviors
[40] 3Not mentioned, 3Intervention 3Not mentioned, 3Not mentioned, 3Not mentioned, 3Discussion on pre- Mentions providing 6: No teaching how
but intervention included develop- but intervention but intervention but intervention venting stroke information about to monitor their
based on CDSMP ing problem sol- based on CDSMP based on CDSMP based on CDSMP and healthy appropriate use of symptoms and
protocol ving strategies protocol protocol protocol behaviors medications but knowing when to
not when to take take appropriate
action action
[41] 3Mentions goal set- Not explicitly Not explicitly 3Intervention 3During exercise 3Healthy tea was 3Discussion on and 5: No problem sol-
ting as educa- mentioned mentioned included opportu- sessions nurses way to learn more review of risk ving/help with
tional topic and nities to practice monitored symp- about healthy factors and warn- decision making,
written goal set- exercises under toms and modi- eating, and ing signs of stroke or action plan-
ting activity supervision of fied program included educa- ning/homework
nurse tion on exercise
and stroke
prevention
[42] 3Intervention had 3Mentions time to 3Mentions focus on 3Intervention pro- 3Mentions time to 3Discussion on 3Discussion on 7
participants share goals and individual goal vided opportunity discuss goals and stroke prevention, consequences of
choose a risk experiences in setting and action to practice action plans with healthy diet, and stroke, medica-
behavior, identify group, and indi- plans learned skills and nurse facilitator risk factors of tions, and stroke
goals, discuss vidual reflection implement action stroke management
goals and report plans in between
back on goals sessions
One to one
[43,44] 3Nurses worked Not explicitly Feedback form eval- Not explicitly 3Intervention was Not explicitly 3Nurses worked 3: No problem sol-
with participants mentioned uated whether mentioned tailored to meet mentioned with participants ving/help with
using written goals were the needs of par- using written decision making,
guidebook that achieved filled ticipants by guidebook on self action planning/
included topics out by nursing spending time on care goals and homework,
and associated students rather topics of interest achieving goals opportunity to
goals than participants to participants practice skills, or
education on
Self-management programs for stroke survivors
healthy lifestyles,
their conditions
(continued )
2149
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Table 3. Continued
2150
manage
[46] 3Intervention had 3Intervention had Mentions helping set Not explicitly 3Nurses supports Not explicitly Not explicitly 3: No action plan-
participants iden- participants iden- goals and looking mentioned participants in mentioned mentioned ning/ home-
tify and clarify tify assets and at ways to achieve identifying indi- work, opportunity
goals strategies to help goals but no vidual goals and to practice skills,
achieve goals explicit mention how to reach education on
of action planning goals healthy lifestyles,
or home work their conditions
and how to self
manage, or
teaching how to
monitor their
symptoms and
knowing when to
take appropriate
action
[47] 3Used stepwise 3Used empathic and Not explicitly Not explicitly 3Mentions client- Not explicitly 3Individualized 4: No action plan-
process to collab- reflective listen- mentioned mentioned centred counsel- mentioned educational ning/ home-
oratively set goals ing, examined ing style, indivi- sheets included work, opportunity
discrepancy dualized educa- diagnosis and to practice skills,
between goals tional sheets effect on recov- or education on
and current ery, medications, healthy lifestyles,
behavior and test results their conditions
and how to self
manage
[48,49] 3Therapist worked 3Mentions teaching 3Mentions therapist 3Intervention had 3Intervention deliv- Not explicitly 3Intervention taught 6: No education on
with participants participants to use helping partici- participants prac- ered by therapist mentioned about identifying healthy lifestyles,
to set goals for and implement a pants identify tice activities on and tailored to and monitoring their conditions
activities he/she global problem- strategies, and their own and participants’ functional symp- and how to self
wanted or needed solving strategy formulating a with therapist needs toms affecting manage
to perform plan. Used train- activities
ing diary to
document goal
progression.
Total 9 7 4 6 9 5 6
(68); 76% left at 2 weeks self-care ability) difference between the inter-
vention and the control in self
efficacy using repeated meas-
ures multiple analysis of
2151
variance
(continued )
2152 G. Warner et al. Disabil Rehabil, 2015; 37(23): 2141–2163
No statistical significance
No statistical significance
their effectiveness. For example, the widely known Stanford
Chronic Disease Self-Management Program (CDSMP) developed
by Lorig et al. [50] is an adaptation of Bandura’s [51] social
cognitive theory.
The quality of the studies was assessed using the risk of bias
assessment tool described in the Cochrane Handbook for
Systematic Reviews of Interventions [52]. The Handbook recom-
mends critically assessing each of the following domains for
randomized clinical trials: sequence allocation, allocation con-
cealment, blinding (participants, providers, outcome assessors and
activities. Stroke Impact Scale
(SIS): perceived difficulties in
Frequency of social lifestyle data analysts), incomplete outcome data, selective outcome
Frencay Activities Index (FAI)
Measures used to assess
Questionnaire (OGQ)
participation
Occupational Gaps findings has been included in Table 2. All reported outcomes were
participation, and
None
Results
The review process identified nine studies that met the inclusion
criteria for the review of self-management programs delivered to
Stroke Impact Scale (SIS) sub-
Measures used to assess function
tal design) The remaining studies were RCTs; most of these trials
[47]
physical functioning on family roles. The intervention included family caregivers in self-management programs has been men-
family caregivers and a peer-group component, the support from tioned as one way of tailoring self-management programs to the
family and peers may have affected the family-centred participa- needs of stroke survivors [60].
tion outcomes. Despite the lack of evidence that participation Our review stratified the studies based on whether or not the
outcomes may improve given more time, it is encouraging to see program provided an opportunity to share and learn from other
assessments 6–12 months post-intervention. service users, which we labeled as those with a group or one-to-one
Although the clinical heterogeneity limited the ability to do a format. Stratifying the self-management programs into those with
meta-analysis, two RCT studies did find statistically significant or without a group component enabled us to create more
improvements in participation and function. This indicates that homogeneous categories of self-management programs with
self-management programs can help participants manage the similar attributes. In comparison to the one-to-one format,
effects of stroke on their lives (role management). Furthermore, programs delivered in a group format were more likely to be
the large array of self-management programs identified in our delivered in the community, to involve a lay leader, to be of similar
review demonstrates that there are multiple opportunities for length and duration, to be a modification of the CDSMP program,
incorporating self-management support for stroke survivors and to incorporate exercise as part of the intervention and to assess
their family members across the care continuum. As adequately participation as an outcome. Having a group component was often
powered studies increase and tools become more standardized, the an indication that the program provided peer support to partici-
evidence for linking self-management programs with improve- pants. Peer support allows participants with similar experiences to
ments in functional ability and participation will likely increase. share information, and receive feedback and emotional assistance
Similar to other recent reviews of self-management programs from each other, which can help validate their feelings and
for stroke survivors [53,55], we were unable to identify particular experiences [61]. Recent reviews suggest that providing peer
self-management components that made programs more or less support can benefit people living with chronic conditions
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effective. This may be because of errors in determining whether a [10,62,63], and it has been a key component of the CDSMP. Peer
self-management strategy was present, or our inability to support could possibly be a key element contributing to the
determine the degree to which the strategy was implemented. effectiveness of self-management programs for improved role
However, when particular strategies are examined in depth, there management outcomes such as participation. More research will be
are implications for practice. The two most prominent strategies needed to explore this relationship.
identified in our review were goal setting and follow-up, and
individualized approaches with structured information and pro- Conclusion
fessional support. These two strategies can overlap, such as when
In conclusion, this review adds to the growing evidence on the
client-centred goal setting is done in partnership with a health
effectiveness of self-management interventions to improve func-
professional. Client-centred goal setting is one way of tailoring
tional ability and participation. Six of the nine studies assessed
the program to the needs of the stroke survivor.
participation in everyday life activities or functional ability, two
de Silva [37] is not the only one to have identified goal setting as
of the six demonstrated statistically significant differences
an important self-management strategy, it is also a key part of the
between the self-management interventions and the controls
CDSMP program [51], and it is strongly linked to improvements in
over time. The high level of clinical heterogeneity in program
stroke recovery [36,56]. Scobbie et al.’s (2009) review of the
delivery, outcomes and level of stroke severity made it difficult to
theories of behaviour change relevant to goal setting identified the
conduct a meta-analysis on whether self-management programs
social cognitive theory, the basis of CDSMP programs, as one of
are effective for improving role management for stroke survivors.
the theories that offered the most potential to inform practitioners’
Nesting qualitative studies within effectiveness studies could
goal setting [57]. The high prevalence of goal setting in the
provide important insights on how participants perceived the
identified self-management programs could be due to our inclusion
implementation of self-management strategies, such as whether
criteria for studies, that necessitated programs actively engage
they felt they actively participated in goal setting. This informa-
participants. In addition, the limited intervention details provided
tion may help to explain why studies that seem to be similar differ
in the articles made it difficult to determine whether goals were
in effectiveness. As the number of sufficiently statistically
client-centred, resulting from a shared decision-making process
powered studies increases, and tools become more standardized,
with health professional. Regardless of these possible biases, there
the evidence for the effectiveness will also increase. Further
may still be an important message for rehabilitation practitioners. It
examination of the contribution of individual self-management
is possible that self-management programs for stroke survivors that
support strategies to improvements in role management outcomes,
build on the goal setting that commonly happens in rehabilitation
such as linking rehabilitation goal setting to post-acute self-
settings could facilitate the stroke survivors’ transitions from acute
management programs, the inclusion of family members and the
care into community settings.
contribution of peer-support is warranted.
The goal setting literature suggests that the effectiveness of
self-management programs may be limited to the timing of
Acknowledgements
delivery. It has been hypothesized that delivering self-manage-
ment programs too soon in the recovery process may be This work would not have been possible without the expertise of
inappropriate, because stroke survivors may not have capacity health sciences librarian Paola Durando and research assistant
to set goals and engage in self-management programs [58]. One Chandima Karunanayaka. This study is part of the National
way of addressing this limitation may be the inclusion of family Population Health Study of Neurological Conditions. We wish to
members in self-management programs for stroke survivors. acknowledge the membership of Neurological Health Charities
Collaborative goal setting between family members, health Canada and the Public Health Agency of Canada for their
professionals and the client have been shown to be of value to contribution to the success of this initiative.
all parties [59]. For conditions with long-term impairments that
affect the client’s ability to care for themselves, the inclusion of
Declaration of interest
family caregivers could enable more realistic goal setting and
better long-term outcomes. Eight of the nine studies in our review Funding for the study was provided by the Public Health Agency
included family caregivers to some extent. The involvement of of Canada. The opinions expressed in this publication are those of
DOI: 10.3109/09638288.2014.996674 Self-management programs for stroke survivors 2155
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