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Disability and Rehabilitation

ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20

A systematic review of the effectiveness of stroke


self-management programs for improving function
and participation outcomes: self-management
programs for stroke survivors

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

To link to this article: http://dx.doi.org/10.3109/09638288.2014.996674

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ISSN 0963-8288 print/ISSN 1464-5165 online

Disabil Rehabil, 2015; 37(23): 2141–2163


! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2014.996674

REVIEW

A systematic review of the effectiveness of stroke self-management


programs for improving function and participation outcomes:
self-management programs for stroke survivors
Grace Warner1, Tanya Packer1, Michelle Villeneuve2, Asa Audulv1,3, and Joan Versnel1
1
School of Occupational Therapy, Dalhousie University, Nova Scotia, Canada, 2Faculty of Health Sciences, University of Sydney, Sydney, NSW,
Australia, and 3Department of Nursing, Mid Sweden University, Sundsvall, Sweden
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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.

 Implications for Rehabilitation


 Self-management programs for stroke survivors:
 Linking post-acute self-management programs to rehabilitation goal setting could improve
outcomes.
 Involving family members in self-management programs may benefit stroke survivors.

Introduction condition (medical/behavioural management); (ii) the emotional


sequel resulting from the condition (emotional management) and
Self-management programs have been promoted as one way to
(iii) the effects of the condition on their lives, by maintaining and/
improve outcomes for stroke survivors after they leave the acute
or creating new life roles (role management) [6].
care setting [1]. The goals of self-management programs are to
The stated expectation of the Chronic Care Model is that
activate and inform clients [2], with growing evidence that
activating clients should translate to improvements in functional
achieving these goals leads to better health outcomes [3,4] and
and clinical outcomes [2,7,8]. Historically, the majority of
better quality of life for clients [5]. The definition of self-
self-management programs have assessed only clinical outcomes
management varies, but the key ingredients are empowering
[9–11]. Clinical outcomes are good indicators of clients’ abilities
clients, by providing them with the knowledge and skills to better
to medically (e.g. taking the appropriate medication) and
manage (i) the symptoms and modifiable risk factors of their
emotionally manage their condition (e.g. dealing with the stress
of managing a chronic condition); however, function or partici-
Address for correspondence: Dr Grace Warner, School of Occupational pation outcomes are good indicators of whether self-management
Therapy, Dalhousie University, P.O. Box 15000, Halifax, Nova Scotia programs improve role management. Functional outcomes cover a
B3H 4R2, Canada. Tel: +1-902-494-2559. E-mail: grace.warner@dal.ca broad spectrum from specific body movements or discrete
2142 G. Warner et al. Disabil Rehabil, 2015; 37(23): 2141–2163

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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ability to manage their life roles [35]. Furthermore, stroke


conducted only on studies with stroke survivor participants. There
survivors have identified participation in everyday life as a high
were 6282 studies located, and 95 studies included, for the larger
priority rehabilitation goal [36]. If self-management programs can
systematic review on self-management interventions for persons
improve function and participation outcomes, stroke survivors
with neurological conditions. Nine of the 95 studies were
should be able to manage the medical and emotional sequelae of
delivered to stroke survivors. The flow chart describing the
their condition and their life roles more effectively.
number of included studies for the larger review and the review of
While the mechanism for client activation through improved
programs delivered to stroke survivors is presented in Figure 1.
self-management is not well known, there is growing consensus
The inclusion criteria used to identify eligible studies are outlined
that certain self-management support strategies are associated
in the selection criteria section.
with improved outcomes across all conditions. A recent report
by de Silva [37] conducted a comprehensive and clinically
Study selection criteria
oriented synthesis of the self-management literature after
examining 16 bibliographic databases and numerous websites Study design
using an array of search terms. The report indicates that there is
Pre-post, quasi-experimental and randomized controlled trial
sufficient evidence to support the following self-management
(RCT) study designs were included.
strategies: (i) involving people in decision making, (ii)
emphasising problem solving, (iii) developing care plans as a
Participants
partnership between service users and professionals, (iv) setting
goals and following up on the extent to which the goals are The stroke sub-study was drawn after the data extraction phase
achieved, (v) promoting healthy lifestyles and educating people (see ‘‘Data extraction’’ section for further details). Participants
about their conditions and how to self-manage, (vi) motivating had to be stroke survivors 5 years of age or older and living in the
people to self-manage using targeted approaches and structured community. Studies where informal caregivers participated in
information and support, (vii) helping people to monitor their
symptoms and know when to take appropriate action, (viii)
helping people to manage the social, emotional and physical
impacts of their conditions, (ix) proactive follow up and (x)
providing opportunities to share and learn from other service
users [37].
In theory, self-management programs that use more of these
identified strategies should be more effective than programs using
fewer strategies. It is not known whether all or any one of these
components is necessary for self-management programs to be
effective for persons living with stroke.
In conclusion, systematic reviews examining the efficacy of
self-management programs for improving functional and partici-
pation outcomes do not currently exist. Furthermore, more needs
to be known about what makes self-management programs
effective for stroke survivors. Such a review would be informative
to rehabilitation professions who are treating stroke survivors
dealing with long-term impairments that effect their functional
abilities and levels of participation. This review addresses these
current gaps in the research literature. The goal of this systematic
review is to synthesize a variety of self-management programs
that actively engage participants in their self-care, regardless of
the theoretical underpinning of the intervention. The objectives Figure 1. Flowchart for included excluded studies.
DOI: 10.3109/09638288.2014.996674 Self-management programs for stroke survivors 2143
the intervention were included provided that outcomes specific to Selection of studies
the stroke survivor were reported.
All identified records were downloaded into the reference
management software RefWorks (Ann Arbor, AI). The initial
Intervention
database was screened for duplicates and for any qualitative
Programs described by the authors as a self-management inter- studies, which were deleted from the database. To identify
vention were included. If not explicitly described as a self- qualitative studies the database was screened using the following
management program, studies were included if the program used key words: qualitative study, grounded theory, ethnography,
one of the following terms to describe the program ‘‘self-care’’, ethnographic study, phenomenology, phenomenological study,
‘‘self-management’’/‘‘self-manage’’, ‘‘patient education’’ and narrative study, commentary and lived experience.
described active engagement of the participants as indicated by A random sub-sample of 25 studies was assessed by three
homework, practice/rehearsal, action plans and individualization research assistants and two investigators to examine accuracy in
of content (problem-solving and the opportunity to individualize determining study eligibility. The research assistant whose
learning to his/her specific circumstances). This criterion was accuracy and critical decision-making skills was most aligned
developed in conjunction with a health sciences librarian in order with the investigators’ decisions was selected to perform the
to identify programs that actively involved participants in relevancy screening of the abstracts. The research assistant used a
managing their conditions. relevance assessment worksheet designed by the investigators
Interventions were excluded if they only disseminated infor- against which titles and abstracts of each record were compared to
mation (e.g. self-help workbooks, provision of written materials, inclusion/exclusion criteria. If the research assistant was unsure of
tapes or DVDs) or reported on a single intervention strategy any abstracts they were reviewed by the investigators.
[cognitive behavioral therapy (CBT), exercise, self-help group, All potentially relevant articles were retrieved in full text for
relaxation, information] in the absence of other criteria. further consideration. These were again reviewed by the research
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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

Table 1. Adapted deSilva self-management strategies.

Self-management strategies Outcome categories


Goal setting and follow-up Participation in everyday life roles and activities (e.g. reintegration to
Normal Living Index)
Problem solving/help with decision making Functional ability (e.g. Functional Independence Measure)
Action planning/homework Physical or psychosocial symptoms (e.g. Geriatric Depression Scale)
Opportunity to practice skills Quality of life/global assessment of health/self-efficacy (e.g. self-
efficacy, Life Satisfaction Scale or Self-Perception of Health)
Individualized approaches with structured information and Health utilization/adherence (e.g. self-reported health service utiliza-
professional support tion diary or medication adherence)
Education on healthy lifestyles, their condition (i.e. stroke) Knowledge and satisfaction with intervention (e.g. Stroke Knowledge
Test or Satisfaction Survey)
Education and practice on monitoring symptoms and when to take
appropriate action
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Table 2. Description of included studies.


2144

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

other weeks to ensure


retention of learning
and skills.
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[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

(interaction and explanation of drop-


information sharing outs. No evidence of
among participants selective reporting.
focused on healthy
eating) and 1-h edu-
cation session (pres-
entation, discussion,
group activities,
written summaries,
worksheets and goal
setting). Careers ses-
sion with social
worker to express
their feelings and
discuss issues related
to being a career.
[42]; Hong Kong; Minor stroke, living in Intervention ¼ 62.8 Empowerment: program 8-week period, In a community setting Usual care No evidence of adequate
quasi-experimental the community, inde- (SD 10.25); covered eight topics 2 h once a by community nurses randomization allo-
pendent in ADL and 45%; related to stroke week cation concealment,
cognitively intact; control ¼ 64.02 (SD knowledge, risk fac- or blinding of inter-
Yes 12.03); tors and healthy life- vention providers or
50% style. Sessions participants. Blinding
included: experience of outcome adminis-
sharing, individual tration, but unclear
goal setting and about assessment.
action plans, partici- Good explanation of
pants selected risk dropouts. No evi-
behaviours they dence of selective
wanted to focus on reporting.
and addressed them
one at a time, setting
practical short-term
goals, writing goals
written down, and
speaking to facilita-
tor and fellow group
participants at the
end of each session.
Participants practiced
the learned skills and
Self-management programs for stroke survivors

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.

beginning of the next


session. Personal log
sheets and a pedom-
eter were given to
each participant for
daily tracking of goal
achievement.
One to One
[43,44]; Israel; RCT First stroke, an average 72 (SD 6.8); Based on Orem [45]: 12-week period, 1–2 h In a medical centre Half-an-hour of physical Unclear evidence of
of 13 days in an acute 48% intervention had a sessions once a week geriatric rehabilita- and occupational randomization and
care setting; written guidebook tion department by therapy 5 days/week, allocation conceal-
Yes with topics that senior nursing if desired discussions ment. No blinding of
addressed common students with a social worker intervention pro-
problems that arise viders or participant.
after stroke. Time Blinding of outcome
spent on topics administration and
determined by par- assessment. Good
ticipants and nurse. explanation of drop-
Each topic contained outs. No evidence of
goals, a guide to selective reporting.
achieving those goals
and a feedback form.
The feedback form
was used to evaluate
the extent to which
the goals were
achieved.
[46]; USA; quasi- First stoke and needed 75 (no SD); 44% Based on Orem [45]: 2-week period, four In a rehabilitation unit Usual care No evidence of ran-
experimental rehabilitation; No individually focused sessions at least 2 by a nurse researcher domization, alloca-
guided decision- days apart tion concealment, or
making intervention blinding of interven-
to improve individ- tion providers, par-
uals’ perception of ticipants, outcome
self-care ability after administration, or
stroke. Protocol outcome assessment.
helped the participant Good explanation of
in: identifying and dropouts. No evi-
clarifying goals; dence of selective
clarifying and reporting.
expressing goals in
measurable terms;
identifying and list-
ing self-care assets
needed and self care
deficits that must be
Disabil Rehabil, 2015; 37(23): 2141–2163

overcome to meet the


goals; identifying
strategies to meet
goals.
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[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

discussed collabora- dence of selective


tively establishing reporting.
goals with patient
and caregiver; bar-
riers to knowledge
and behavior change
were addressed;
goals were broken
down into small
tasks. In addition,
participants were
given an individua-
lized education sheet
that included their
diagnosis and its
effect on recovery, a
listing of their medi-
cations and indica-
tion, the prescribed
test results and a
description of what
to anticipate upon
discharge.
[46,47]; Sweden; Diagnosis of stroke, Intervention ¼ 66 Client-centred interven- Over a 12-month period In a rehabilitation Ordinary self-care Evidence of randomiza-
RCT cognitively able to (SD 14), 58%; tion using goal-plan- contacts with OT department by OT training by therapists tion and allocation
follow instructions, control 69 (SD 15); do-check strategy. (intervention: mean concealment. No
needed rehabilita- 57% Intervention had the ¼ 13, range 4–25 and blinding of interven-
tion; Yes optional following steps: meet control: mean ¼ 19, tion providers or
and establish rela- range 3–34) participants, blinding
tionship with client; of outcome adminis-
observe client per- tration and assess-
forming self-care; ment. Good
score the Sunnaas explanation of drop-
ADL index with the outs. No evidence of
client to identify dif- selective reporting.
ficulties in perform-
ing activities; client
formulates three
goals for activities
he/she wants and
Self-management programs for stroke survivors

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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Table 3. Self-management support strategies.

Individualized Teaching how to


approaches that have Education on monitor their symp-
Goal setting and Problem solving/ structured informa- healthy lifestyles, toms and knowing
follow-up to check help with decision Action planning/ Opportunity to prac- tion and professional their conditions and when to take appro- Total self-manage-
Reference on goal status making homework tice skills support how to self manage priate action ment strategies
Group
[38] 3Mentions goal set- 3Mentions problem 3Not mentioned, 3Not mentioned, 3Not mentioned, 3Discussion on CDSMP does not 6: No teaching how
ting as part of solving as part of but intervention but intervention but intervention health eating, manage disease to monitor their
DOI: 10.3109/09638288.2014.996674

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

Individualized Teaching how to


approaches that have Education on monitor their symp-
Goal setting and Problem solving/ structured informa- healthy lifestyles, toms and knowing
follow-up to check help with decision Action planning/ Opportunity to prac- tion and professional their conditions and when to take appro- Total self-manage-
Reference on goal status making homework tice skills support how to self manage priate action ment strategies
and how to self
G. Warner et al.

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

3 ¼ self-management support strategy was determined to be part of intervention


Disabil Rehabil, 2015; 37(23): 2141–2163
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Table 4. Outcomes for self-management programs.

Measures used to assess


Reference Intervals and numbers assessed Types of outcomes assessed Measures used to assess function participation Statistically significant differences
Group
[38] Baseline 3 months post-stroke Participation, quality of life, Stroke Specific Quality of Life Sub Stroke Specific Quality of Life Statistical differences were found
(91); 6 months post-stroke (81); self-efficacy, functional ability, (SSQOL) Sub-scales Mobility scale (SSQOL) sub-scales work between the intervention and
9 months post-stroke (73); 12 physical symptoms, psycho- and Fine Motor Tasks productivity, social roles, family the control over the 12-month
months post-stroke (71); 78% social symptoms roles, self-care period post-stroke (or 6 months
left at 9 months post-intervention) for participa-
DOI: 10.3109/09638288.2014.996674

tion (engagement in family


activities, perceived burden and
impact of physical functioning
on family roles) and fine motor
function (fine motor tasks such
as writing, dressing and opening
jars)
[39] Baseline (30); post-intervention Participation, self-efficacy, Chedoke McMaster Stroke Reintegration to Normal Living No statistical significance
(26); 12 weeks post-program functional ability, Assessment Activity Inventory Index (RNL index) includes
(23); 77% left at 12 weeks psychosocial symptoms (CMSA-AI). Assesses gross self-care, activity participation,
motor function and walking. family roles, and dealing with
social and life events.
[40] Baseline (73), 2–4-weeks post- Participation, quality of life, None Positive and active engagement No statistical significance
intervention (65) and 6 months physical symptoms, psycho- (ActPos) in life a domain of the
post-intervention (65); 89% left social symptoms, health Health Education Impact
at 6 months. Used ITT utilization Questionnaire.
[41] Baseline (26), post-intervention Participation, quality of life, Stroke Impact Scale (SIS) recovery Stroke Impact Scale (SIS) recovery No statistical significance
(25) and 12-weeks post-inter- functional ability, physical moving, hand function, house- Impact on social relationships
vention (24); 92% left at 12 symptoms, psychosocial hold work, ADL, cognitive and work
weeks symptoms, knowledge function), Timed UP and
Go test: secondary measure of
functional performance, Rankin
Scale: independence
[42] Baseline (190); 1-week post-inter- Adherence and knowledge None None There was a statistically significant
vention; 3 months post-inter- difference between the inter-
vention (147); 77% left at 3 vention and the control in some
months. Used ITT measures of knowledge and
adherence
One to one
[43,44] Baseline (155), 3 months (post- Participation, global assessment of Functional Independence Measure Instrumental Activities of Daily There was a statistically significant
intervention) (143); 6 months health, self-efficacy, functional (FIM): dependence or need for Living Scale (IADL): measures difference between the inter-
(136); 88% left at 6 months ability, psychosocial symptoms, assistance in self-care, sphincter the patient’s ability to perform vention and the control in
knowledge and adherence control, mobility, locomotion the tasks required to maintain function (FIM) from baseline to
an independent household. the 6-month assessment. Also
significant differences in global
assessment of health, adher-
ence, and psychosocial
symptoms
[46] Baseline (90), post-intervention Self-efficacy (perception of None None There was a statistically significant
Self-management programs for stroke survivors

(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

Statistically significant differences


in identified studies, it is possible programs based on a theoretical
framework may be more likely to incorporate these strategies
and having a theoretical framework may be a critical factor in

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

reporting and other sources of bias (concerns about bias not


addressed in other domains). A summary of the risk of bias

Questionnaire (OGQ)
participation

Occupational Gaps findings has been included in Table 2. All reported outcomes were
participation, and

recorded and categorized. The list of de Silva (2010) self-


management strategies were adapted to make them easier to
categorize, the adapted strategies and the outcomes are listed in
Table 1.
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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

dependence or need for assist-


Independence Measure (FIM):

control, mobility, locomotion.

stroke survivors. The number of reviewed abstracts and articles,


Barthel Index (BI), Functional

scale 5 regarding perceived


ance in self-care, sphincter

and the final number of included studies is in the flow chart


(Figure 1).
difficulties in ADL

Description of included studies


Table 4. Continued

Table 2 has a description of the included stroke studies, stratified


by those delivered in a group (N ¼ 5) and those delivered in a one-
to-one format (N ¼ 4). Across the nine studies there were six
None

RCTs, two quasi-experimental studies and one with a pre–post


design. The studies were conducted in a range of countries: the
most common being Australia (N ¼ 3) and USA (N ¼ 2). The
mean age of study participants ranged from 50 to 75 years of age;
the number of participants in the studies ranged from 13 to 155.
Types of outcomes assessed

The severity of the stroke varied across studies from a recent


Knowledge, satisfaction with

Participation, quality of life,

minor stroke or transient ischemic attack to at least one stroke at


any time in the past. In all, eight studies included the family
functional ability

caregiver to varying degrees in the intervention. All the


interventions were stroke-specific.
intervention

All interventions using a group format (N ¼ 5) were delivered


in a community setting with the majority (N ¼ 3) modifying the
CDSMP [50] to include stroke specific information. All five
interventions were led by a health professional (one also had a
lay leader) and were typically delivered in weekly 2-h sessions for
6–8 weeks. Interventions delivered using a one-to-one format
Baseline demographics (13); stoke

month following discharge (13);

(N ¼ 4) were usually delivered in an acute or rehabilitation


Intervals and numbers assessed

months (31); 12 months (24)


knowledge and satisfaction 1

left at 3 months; 60% left at


Baseline (40) 3 months (33); 6

facility. The theoretical underpinnings of the interventions are


identified in the intervention description in Table 2. Most of the
modified CDSMP interventions did not mention having a
12 months. Used ITT
100% left at 1 month

theoretical underpinning, although the CDSMP is based on


Bandura’s [51] social cognitive theory. Two of the one-to-one
interventions [44,46] identified the Orem [45] self-care frame-
work as the basis for the interventions. The length of the
intervention varied from a maximum of 1–2 h for 12 weeks, to a
single 45-min session at discharge.
The results for the risk of bias assessment are in Table 2. The
three studies that did not use an RCT design were judged to be at a
high risk of bias due to the lack of a control or randomization
Reference

(pre–post design) or incomplete randomization (quasi-experimen-


[48,49]

tal design) The remaining studies were RCTs; most of these trials
[47]

used adequate randomization and allocation concealment, but


DOI: 10.3109/09638288.2014.996674 Self-management programs for stroke survivors 2153
often there were insufficient details in the methods to determine if intervention with an initial sample size of 155 with 12% attrition
study participants or the intervention providers were blinded. at 6 months. The intervention used a guidebook based on Orem’s
Three trials [40,43,44,48] indicated that the outcome assessors [45] model of self-care and was delivered in a geriatric rehab
were blinded to allocation for all assessments and explained setting. The description of the intervention did not indicate that
dropouts and incomplete outcome assessments; therefore, the risk action planning/homework was included in the program, or
of bias assessment for these trials was considered lower than the whether participants were provided with an opportunity to
remaining RCTs. practice skills; therefore, we concluded that it included five of
seven self-management strategies. Like Kendall et al. [38], Nir
Self-management support strategies et al. recruited participants after they had their first stroke while
on an acute unit and they involved the family caregiver. The Nir
The descriptions of the self-management interventions were often
et al. study showed significant differences in global assessment of
very brief, which made assessing the existence of self-manage-
health, psychosocial symptoms, dietary and medication adherence
ment support strategies [37] challenging. For example, while
and functional ability using the Functional Independence
many studies reported use of goal setting strategies, details on the
Measure.
level of client involvement in setting the goals were lacking. To
Two quasi-experimental designs demonstrated statistically
address this, Table 3 reports how the study described each of the
significant differences between the self-management interven-
self-management strategies. Where ambiguity existed, reviewers
tions and the controls over time, but neither assessed functional
assumed the strategy was included. For example, reports of
ability or participation. In brief, these two studies were: (i) a
modified CDSMP interventions [40] were assumed to include
group intervention with an initial sample size of 190 with 23%
self-management strategies included in the original CDSMP
attrition over 3 months that found significant differences in
protocols. Marsden et al. [41] provide a second example: because
medication adherence, healthy behaviours and knowledge of
the intervention modified the exercise program based on infor-
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stroke by Sit et al. [42] and (ii) a one-to-one intervention with an


mation gathered from monitoring symptoms it included an
initial sample size of 68 and a 24% attrition rate after 2 weeks that
element of individualization. We acknowledge this may biased
found significant differences in self-efficacy by Folden [46].
our results toward the null hypothesis of not finding one self-
management strategy significantly more effective than another.
The number of self-management strategies was higher for Discussion
studies that used a group (a minimum of five strategies out of
Stroke self-management programs are becoming increasingly
seven) versus one-to-one format (a minimum of three strategies
prevalent with practitioners’ acceptance of the Expanded Chronic
out of seven). The two most commonly reported self-management
Care Model [2] and the evidence that self-management programs
strategies were goal setting and follow-up, and individualized
can effectively change outcomes increases [53]. Despite these
approaches with structured information and professional support;
trends, the body of evidence necessary to rigorously assess the
these strategies were reported in every study. The strategy action
efficacy of self-management interventions for improving func-
planning and homework was the strategy least mentioned.
tional ability and participation is still evolving. The majority of
the studies included in this review had small sample sizes, which
Outcomes
limited their power to detect a statistically significant difference
The nine included studies assessed a range of participant outcomes between the intervention and the control groups. There was also a
(Table 4) and used 36 outcome measures. Six of the nine studies large degree of clinical heterogeneity across the studies. The
assessed either participation in everyday life activities (N ¼ 6) or participants’ stroke severity and stage of recovery in the included
functional ability (N ¼ 5). Diverse tools assessed functional ability studies differed as did the content and duration of the programs
(e.g. Functional Independence Measure, Barthel Index and and the types of tools used to assess functional ability and
Modified Rankin Scale) and participation (e.g. Positive and participation. The differences across the studies made it difficult
Active Engagement in Life, Reintegration to Normal Living to complete a meta-analysis that could combine study findings to
Index and Frenchay Activities Index). The other outcomes assessed ensure sufficient power to examine whether self-management
were quality of life/global assessment of health (N ¼ 5), self- programs effectively improve functional ability and participation.
efficacy (N ¼ 3), physical or psychosocial symptoms (N ¼ 5), In this review, there were 37 different outcome tools used in
health utilization/adherence (N ¼ 3) and knowledge and satisfac- the nine included studies, of those five different tools were used to
tion with intervention (N ¼ 4). All the studies assessed outcomes assess functional ability and seven tools to assess participation.
post-intervention, the time period varied due to differences in the This type of diversity is similar to what Boger et al. [54] found in
length of the interventions and ranged between 2 weeks to 3 their review of stroke self-management outcomes; where they
months; some had additional follow-up assessments, the longest identified 43 different tools in 13 studies. In addition to the
being 12 months post-intervention. diversity of tools, the length of time outcomes that assessed post-
Two RCT studies assessed functional ability and/or participa- intervention also varied. It could be argued that improvements in
tion and demonstrated statistically significant differences between participation outcomes might take longer to develop than
the self-management interventions and the controls over time. improvements in function, thus the length of follow-up post-
Kendall et al. [38] reported on a group intervention that had an intervention is important to consider. For the majority of the
initial sample of 71 with 22% attrition at the end of 12 months. studies in the review, the outcome assessment was limited to one
The study recruited participants from acute care after their first post-intervention assessment after the intervention was com-
stroke who were expected to be discharged home. The interven- pleted. However, three studies assessed participants 6 months
tion included all seven self-management strategies, involved a post-intervention [38,40,43,44] and one assessed participants 12
family caregiver, was delivered by health professionals and was months post-intervention [48]; however, only one of these studies
based on the CDSMP course. The study demonstrated a found significant improvements in participation [38]. These
significant improvement in stroke survivors’ participation in differences may be due to differences in the participation
family roles and functional ability in fine motor tasks such as assessment tools or intervention components. For example,
writing, dressing and opening jars. Nir et al. [43] and Nir and Kendall et al. [38] found significant improvements in participants’
Weisel-Eichler [44] reported on a nurse guided one-to-one engagement in family activities, and perceived burden/impact of
2154 G. Warner et al. Disabil Rehabil, 2015; 37(23): 2141–2163

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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Appendix 1. Databases and search terms


Databases searched
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Medline 1986 to present OvidSP


The Cochrane Library inception to present Wiley (includes CENTRAL,
DARE and Economic Evaluations Database)
Embase 1986 to present OvidSP
CINAHL 1986 to present EBSCOhost
AMED 1986 to present OvidSP
PsycINFO 1986 to present OvidSP
National Research Register 1986 to present
SCI-EXPANDED (Web of Science) 1986 to present ISI
ERIC (Education Resources Information Clearinghouse) 1986 to present WilsonWeb
PEDro 1986 to present
OTseeker 1986 to present
REHABDATA 1986 to present
DOI: 10.3109/09638288.2014.996674 Self-management programs for stroke survivors 2157
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2158 G. Warner et al. Disabil Rehabil, 2015; 37(23): 2141–2163
Downloaded by [McMaster University] at 09:33 30 August 2017
DOI: 10.3109/09638288.2014.996674 Self-management programs for stroke survivors 2159
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2160 G. Warner et al. Disabil Rehabil, 2015; 37(23): 2141–2163
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DOI: 10.3109/09638288.2014.996674 Self-management programs for stroke survivors 2161
Downloaded by [McMaster University] at 09:33 30 August 2017
2162 G. Warner et al. Disabil Rehabil, 2015; 37(23): 2141–2163
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DOI: 10.3109/09638288.2014.996674 Self-management programs for stroke survivors 2163
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