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931 Disability & Rehabilitation, 2013; 35(11): 931–938 © 2013 Informa UK, Ltd. ISSN 0963-8288 print/ISSN 1464-5165 online DOI: 10.3109/09638288.2012.717578 Objectives: To explore whether a pilot secondary stroke prevention group program for community-dwelling chronic stroke survivors assisted participants in modifying their lifestyle to reduce their risk of secondary stroke. Design: A mixed methods study (quantitative and qualitative). Setting: Community. Subjects: Twenty-two community dwelling, chronic stroke survivors. Intervention: The Masterstroke program incorporated a secondary prevention stroke group program over a 9-week period with two 2-h sessions weekly (1 hour for education and 1 hour for exercise). The exercise component incorporated fitness, strength, mobility and balance and education focused on secondary stroke prevention whilst also providing chronic condition self-management support. Main measures: Timed Up and Go (TUG), Six Minute Walk Test (6MWT), Fat and Fibre Barometer, The Stroke and Aphasia Quality of Life Scale (SaQoL-39), and questionnaires for salt intake and stroke knowledge. Qualitative outcomes were participants’ perceptions. Data analysis involved an inductive thematic approach with constant comparison. Results: There were insufficient participants for results to reach statistical significance in all categories, however, statistically significant results where achieved with regards to knowledge, TUG, salt intake and quality of life (QoL) scores. Qualitative responses explored participants’ experience of the Masterstroke program; results confirmed increases in knowledge about stroke and exercise tolerance, successfulness of a group program and lifestyle modification post stroke. Conclusions: Participation in the Masterstroke program for community dwelling stroke survivors resulted in significant improvements in knowledge, functional balance, dietary behaviours and quality of life. Qualitative interviews support the participants’ implementation of lifestyle changes essential for reducing risks of secondary stroke. Results support the utilisation of this model and warrants rigorous investigation regarding long-term impacts of an education and exercise program on community dwelling stroke survivors. Keywords: Exercise, stroke, stroke prevention Background With changing demography and the ageing population, the incidence of stroke is expected to continue to rise. Moreover recurrent stroke has been found to be six times greater than first ever stroke, resulting in a high percentage of individu- als living with residual impairments [1,2]. Secondary stroke prevention strategies aim to address this in a bid to save lives, avoid disability, and reduce the burden of stroke on the com- munity [3]. Many stroke risk factors are modifiable making them amenable to both medical and behavioural interven- tions. ese include high blood pressure, smoking, diabetes, high cholesterol, inactivity and excessive alcohol [4,5]. Studies have found that many individuals are unaware of and give little attention to their stroke warning signs and risk factors [6–8]. Furthermore a large population study undertaken [9] identified that poor knowledge among stroke survivors was comparable to those in the general population. Such research highlights the importance of effective REHABILITATION IN PRACTICE ‘Masterstroke: a pilot group stroke prevention program for community dwelling stroke survivors’ Jennifer H. White 1 , Bridget L. Bynon 1 , Jodie Marquez 2 , Anne Sweetapple 3 & Michael Pollack 1 1 Hunter Stroke Service, Hunter New England Area Health Service, Hunter Region Mail Centre, NSW, Australia, 2 University of Newcastle, University Drive, Callaghan, NSW, Australia, and 3 Community Stroke Team, Hunter Region Mail Centre, NSW Australia Correspondence: Jennifer White, Locked Bag No. 1, Hunter Region Mail Centre, NSW, Australia 2310. Tel.: +61 2 4921 4837. Fax: +61 2 4921 4833. E-mail: [email protected] A program which incorporates exercise and education in a group setting may improve health-related qual- ity of life and functional performance for community dwelling, chronic stroke survivors. It is feasible for a multidisciplinary team to implement a secondary stroke prevention group program for community dwelling, chronic stroke survivors. Implications for Rehabilitation (Accepted July 2012) Disabil Rehabil Downloaded from informahealthcare.com by University of Waterloo on 10/30/14 For personal use only.

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Page 1: ‘Masterstroke: a pilot group stroke prevention program for community dwelling stroke survivors’

931

Disability & Rehabilitation, 2013; 35(11): 931–938© 2013 Informa UK, Ltd.ISSN 0963-8288 print/ISSN 1464-5165 onlineDOI: 10.3109/09638288.2012.717578

Objectives: To explore whether a pilot secondary stroke prevention group program for community-dwelling chronic stroke survivors assisted participants in modifying their lifestyle to reduce their risk of secondary stroke. Design: A mixed methods study (quantitative and qualitative). Setting: Community. Subjects: Twenty-two community dwelling, chronic stroke survivors. Intervention: The Masterstroke program incorporated a secondary prevention stroke group program over a 9-week period with two 2-h sessions weekly (1 hour for education and 1 hour for exercise). The exercise component incorporated fitness, strength, mobility and balance and education focused on secondary stroke prevention whilst also providing chronic condition self-management support. Main measures: Timed Up and Go (TUG), Six Minute Walk Test (6MWT), Fat and Fibre Barometer, The Stroke and Aphasia Quality of Life Scale (SaQoL-39), and questionnaires for salt intake and stroke knowledge. Qualitative outcomes were participants’ perceptions. Data analysis involved an inductive thematic approach with constant comparison. Results: There were insufficient participants for results to reach statistical significance in all categories, however, statistically significant results where achieved with regards to knowledge, TUG, salt intake and quality of life (QoL) scores. Qualitative responses explored participants’ experience of the Masterstroke program; results confirmed increases in knowledge about stroke and exercise tolerance, successfulness of a group program and lifestyle modification post stroke. Conclusions: Participation in the Masterstroke program for community dwelling stroke survivors resulted in significant improvements in knowledge, functional balance, dietary behaviours and quality of life. Qualitative interviews support the participants’ implementation of lifestyle changes essential for reducing risks of secondary stroke. Results support the utilisation of this model and warrants rigorous investigation regarding long-term impacts

of an education and exercise program on community dwelling stroke survivors.

Keywords: Exercise, stroke, stroke prevention

Background

With changing demography and the ageing population, the incidence of stroke is expected to continue to rise. Moreover recurrent stroke has been found to be six times greater than first ever stroke, resulting in a high percentage of individu-als living with residual impairments [1,2]. Secondary stroke prevention strategies aim to address this in a bid to save lives, avoid disability, and reduce the burden of stroke on the com-munity [3]. Many stroke risk factors are modifiable making them amenable to both medical and behavioural interven-tions. These include high blood pressure, smoking, diabetes, high cholesterol, inactivity and excessive alcohol [4,5].

Studies have found that many individuals are unaware of and give little attention to their stroke warning signs and risk factors [6–8]. Furthermore a large population study undertaken [9] identified that poor knowledge among stroke survivors was comparable to those in the general population. Such research highlights the importance of effective

REHABILITATION IN PRACTICE

‘Masterstroke: a pilot group stroke prevention program for community dwelling stroke survivors’

Jennifer H. White1, Bridget L. Bynon1, Jodie Marquez2, Anne Sweetapple3 & Michael Pollack1

1Hunter Stroke Service, Hunter New England Area Health Service, Hunter Region Mail Centre, NSW, Australia, 2University of Newcastle, University Drive, Callaghan, NSW, Australia, and 3Community Stroke Team, Hunter Region Mail Centre, NSW Australia

Correspondence: Jennifer White, Locked Bag No. 1, Hunter Region Mail Centre, NSW, Australia 2310. Tel.: +61 2 4921 4837. Fax: +61 2 4921 4833. E-mail: [email protected]

Disability & Rehabilitation

2013

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© 2013 Informa UK, Ltd.

10.3109/09638288.2012.717578

0963-8288

1464-5165

A pilot group stroke prevention program

30July2012

• A program which incorporates exercise and education in a group setting may improve health-related qual-ity of life and functional performance for community dwelling, chronic stroke survivors.

• It is feasible for a multidisciplinary team to implement a secondary stroke prevention group program for community dwelling, chronic stroke survivors.

Implications for Rehabilitation

(Accepted July 2012)

J. H. White et al.

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community education and stroke prevention programs [6–8]. Stroke prevention programs have focussed on empowering individuals to alter their modifiable risk factors through exercise, diet modification and medication adherence [10,11]. It has been proposed that 80% of secondary strokes could be prevented if a multifaceted approach is adopted and the post stroke period appears to be an appropriate time for implementation of prevention strategies [4].

The benefit of regular exercise on cardiovascular disease factors has been well documented [11]. However, the capac-ity to exercise post stroke is limited by residual impairments resulting in deconditioning and a more sedentary lifestyle [11]. Several studies exploring exercise post stroke have dem-onstrated that stroke survivors have the capacity to improve their cardiovascular fitness [12,13]. Despite these findings very few stroke prevention studies incorporate an exercise component which is sufficient to promote physiological change concerning aerobic fitness by mediating resting heart rate, blood pressure and weight. As a result there remains a gap within the current literature regarding how much exercise is needed to make a difference to an individual’s lifestyle and risk [11,14].

The best model for the delivery of stroke prevention interventions remains undetermined; however, there is grow-ing interest in the use of chronic disease self-management principles to assist with management of chronic conditions, such as stroke. These programs typically endorse treatment adherence, activities which promote health, self-monitoring of health and symptom management [15]. These components are highly relevant for stroke survivors whereby they are encouraged to take responsibility for their risk factors and our supported to minimise the impact of symptom severity and disease progression on lifestyle [16,17].

This study aimed to determine the effectiveness of a pilot, secondary stroke prevention program, called Masterstroke, which incorporated exercise and education regarding lifestyle modification, using the principles of self-management.

Methods

This was a mixed methods study evaluating the effectiveness of a pilot program called Masterstroke, a secondary stroke prevention group program for stroke survivors, led by the Community Stroke Team (CST). This research was conducted in two stages. The first stage involved analysis of quantitative pilot data (n = 22) obtained from Masterstroke groups con-ducted in 2010 and 2011. The second stage involved individ-ual semi-structured interviews with participants (n = 9) who completed Masterstroke during 2011 only. Approval for this project was obtained from the Hunter New England Human Ethics Research Committee.

RecruitmentThis study was conducted in Newcastle, Australia. Participants formed a convenience sample and were referred by stroke cli-nicians following recent hospital admission for stroke, or self-referral following promotion of the program in a mail out to stroke survivors who had previously opted to be registered on

a local data base. All participants were provided with detailed information about the research at enrolment. Consent to par-ticipate in this study was not a requirement for inclusion in Masterstroke, however, all respondents chose to participate and gave written informed consent. Furthermore, participants in 2011 were invited to participate in the qualitative study at the same time they consented for the group. Inclusion criteria included: a diagnosis of stroke, community dwelling, and not currently accessing other rehabilitation services. Exclusion criteria were severe cognitive or language impairment as assessed by a speech pathologist.

InterventionThe group intervention, Masterstroke, led by a multi-profes-sional community based team, was conducted on four occa-sions during the study period. Each group was conducted over a 9-week period and each session lasted 2 h with a morning tea break. One hour was allocated to exercise and 1 h was allocated to education. The exercise program used a mixed training intervention model incorporating fitness, strength, mobility and balance. It was conducted in a gym-nasium and utilised exercise equipment such as weights, treadmills and exercise bikes where appropriate. The intensity of the exercise was monitored through the use of the Borg Rating of Perceived Exertion Scale [18] and participants were encouraged to exercise at a moderate intensity as per current exercise guidelines for this population [5]. Each education session (presented using power-point and handouts) focused on a different topic in order to provide comprehensive stroke prevention information whilst also providing chronic condi-tion self-management support [5]. Topics covered included: stroke risk factors, nutrition, diet and managing stroke com-plications (depression, social isolation).Each session followed the same format and the exercise component was led by a physiotherapist and the education was facilitated by multidis-ciplinary member of the CST. Groups were held in a rehabili-tation setting situated on a hospital campus which had gym facilities. Participants’ had access to disabled parking, disabled transport and community transport to access the group. The overall aim of Masterstroke was to assist participants to better understand how to manage their own health and modify their lifestyle in order to reduce their risk of secondary stroke. Full details of the program are available on request.

Data collection methodsStage one: quantitativeQuantitative data was gathered prior to the commence-ment of the program, at its conclusion and 3 months later by a member of the CST. Reliable clinical tools, previously validated in stroke populations, were used where possible as measure outcomes. Physical assessments included waist circumference, resting heart rate, functional balance (Timed Up & Go (TUG) [19], and mobility (Six Minute Walk Test 6MWT) [20]). Quality of life was assessed using the Stroke and Aphasia Quality of Life Scale [21] (SAQoL) which mea-sures health related QoL across five domains. Diet and smok-ing habits were assessed with self-rater questionnaires; the Fat and Fibre Barometer [22]; and fagerstrom test for nicotine

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dependence [23]. Participants were also asked to report daily salt and alcohol intake. Knowledge of stroke and associated risk factors were assessed using a questionnaire developed by the stroke team, with a score of 31 denoting the highest pos-sible score.

Stage two: qualitativeQualitative interviews were conducted following completion of each group in 2011 to further explore participants’ personal experiences of attending Masterstroke. The interviews were conducted by a researcher not involved in the intervention program or outcome measurements. A topic guide was used during interviews, however, discussions were informant-led and emergent themes informed continuing data collection. Participants were initially asked to describe the onset of their stroke, the impact of stroke, participation in Masterstroke including content of the program, and subsequent lifestyle modifications. Examples of questions included “Did you know what your risk factors for stroke were?” and “Have you made ongoing lifestyle modifications based on what you learned?” All participants selected to have their interview (average duration of 30–45 minutes) conducted in their own home in preference to returning to the community centre at a later date. Interviews were digitally recorded with permission from the participants, and transcribed verbatim.

Data analysisQuantitativeThis was a pilot study, with a sample comprised of 22 par-ticipants. After the data was checked for normality, mean differences in outcomes at the three time points (pre- and post-program, and 3-month follow-up) were calculated to provide indications of the presence and direction of effects.

Differences in waist circumference, Fat and Fibre Barometer, Salt intake and QoL data sets were normally dis-tributed thus paired t-tests were performed to statistically analyse these effects. Changes in heart rate, TUG, 6MWT and knowledge were not normally distributed therefore were anal-ysed using the Wilcoxon rank sum tests. All statistical analysis was performed using STATA 11.0 (Stata Corporation, TX, USA). The level of significance was set at 0.05.

QualitativeAn inductive thematic approach using a process of constant comparison was used, incorporating simultaneous data col-lection, coding and analysis [24]. The initial stage of the cod-ing process involved a line by line analysis and interpretation of the transcripts that identified a broad range of concepts from the data that repeatedly occurred throughout the tran-scripts [24]. Two researchers (J. W. and B. B.) continually compared and contrasted the data in order to develop cat-egories that were representative of the data. Categories were issued with a four letter label or code to facilitate data retrieval between the transcripts (for example, stroke knowledge was coded as KNOW). The second level of coding involved iden-tifying the connections between the categories (for example all codes that described the impact of knowledge on altered diet). Any differences in researcher perspective were resolved

by negotiation and consensus and fed back into the analysis to cross-check codes and themes and develop an overall inter-pretation of the data. Final categories were then collated and grouped into themes, which formed the basis of the findings and discussion of this study regarding relationships between attendance to Masterstroke and altered lifestyle.

Results

QuantitativeDuring the study period, four Masterstroke groups were conducted, two in 2010 (n = 5 and n = 8) and two in 2011 (n = 4 and n = 5). Participant demographics are outlined in Table I. In total, 22 participants were recruited to participate in Masterstroke, one participant failed to complete the pro-gram and therefore was not included in the analysis. This gave a total of 16 males and 5 female participants with a mean age of 65.76 years (age range: 46–85 years). As data collection was ongoing follow-up data was not available for five participants. Furthermore, as this was a clinical program, where data was collected by therapists, some data points for several partici-pants are missing. Therefore the sample size for each variable is reported.

Risk factorsWe identified that 42% of participants demonstrated a reduced waist circumference at the conclusion of the program and 60% of participants showed a reduction in resting heart rate. However, the mean changes for both of these variables did not reach statistical significance (mean = 0.33 cm, p = 0.73; mean = 0.60 beats/min, p = 0.59, respectively). In terms of dietary behaviours, 72% of participants demonstrated posi-tive changes on the fat and fibre barometer at discharge from the program (mean = 5.48, p = 0.02) and 67% of participants reported a reduction in salt intake (mean = 2.00, p = 0.01). These dietary changes were maintained at 3-month follow-up. None of the participants reported alcohol consumption or smoking behaviours within ranges which would contrib-ute to stroke risk. Therefore this data was not included in the analysis.

Physical functionA large majority of the participants demonstrated an improvement in TUG scores (81%) with the mean change for the group reaching statistical significance (mean = 3.89 s, p = 0.00). This improvement was maintained at follow-up. To a lesser extent, the majority of participants improved 6MWT

Table I. Demographic profile of participants.

CharacteristicMean & standard

deviation RangeAge (years) (n = 21) 65.76 ± 11.01 46–85Time Since Stroke (years) (n = 19) 2.11 ± 1.76 0.67–8.5mRS (n = 21) 2.57 ± 1 1–4Gender (n = 21) Frequency Percentage Male 16 76.19 Female 50 23.8

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scores (61%), however, the mean change for the group was not statistically significant (mean = 26.99 m, p = 0.08) (Table II).

Stroke knowledge/quality of lifeImprovements in stroke knowledge reached statistical sig-nificance (p = 0.00) with 95% of participants demonstrat-ing an improved awareness of stroke signs and risk factors. Although the average score was slightly lower at follow-up, statistically the knowledge gain was maintained. Attendance at Masterstroke resulted in a significant improvement in QoL (mean = 0.25, p = 0.01) which was maintained 3 months later (Table III).

QualitativeNine participants (seven males and two females, age range: 53–80 years, mean age: 69 years) consented to participate in a qualitative interview, forming a convenience sample for this study. The majority (66%) was independent (mRS score = 2) and time post stroke ranged from 6 months to 11 years (mean: 2.5 years).

Several themes emerged from the interviews about the stroke survivors’ experience of Masterstroke these included: loss of roles post stroke, stroke onset/knowledge of risks fac-tors prestroke, benefit of Masterstroke, motivation to modify lifestyle and lifestyle modification post Masterstroke.

Loss of roles post strokeAll participants reported experiencing role loss and lifestyle change as a result of the impact of residual physical, cognitive or communicative impairments from their stroke. Participants stated they were unable to resume everyday tasks and previ-ously enjoyed activities, for example walking and golf. The inability to return to work and driving were significant areas of expressions of loss.

“I’m home bound and I can’t drive yet.” (Participant 3, male, 76)

“I stopped working; I had a good job, good income. That’s all gone and I had to learn how to walk, talk, and breathe.” (Participant 4, male, 60)

All participants spoke of how their symptoms were expe-rienced on a continuum of lesser to greater role restrictions and loss. Greater experiences of loss were closely linked with

a cycle of inactivity and frustration. This was evident in par-ticipants’ expressions of frustration regarding the experience of restriction.

“I mean I just get frustrated. I can’t do things I used to do and . . . [you] just try to work your way around it.” (Participant 2, male, 67)

Feelings of frustration were often attributed to feelings of increased dependency as a result of ongoing residual symp-toms. Most participants were required to rely on other people to assist them to maintain involvement in prestroke roles.

“ . . . it’s like you’re a bird having its wings clipped, I mean I’m com-pletely relying on my wife to take [me] to go out . . . ” (Participant 3, male, 76)

Participants who took initiative for adapting to their cir-cumstances were able to modify activities to maximise inde-pendence and reported feelings of greater control over their circumstances. For many, feelings of control were closely aligned with recovery, increased independence and a gradual resumption of the demands of normal life and previously val-ued life roles.

“The other day I got out of the car and walked to the bank, normally I would have gone with someone pushing me in a wheelchair . . . now I walk it.” (Participant 4, male, 60)

Stroke onset/knowledge of risks factors pre strokeThere was evidence in the interviews that most participants lacked knowledge of stroke risk factors, warning signs and “did not even know what a stroke was really” (Participant 6, male, 52). Poor knowledge of stroke was evidenced by the fail-ure of the majority of participants to respond to their stroke symptoms as an emergency. As a result many participants continued to conduct their daily activities and postponed seeking medical attention or depended on family members to instigate contact with the health system.

“During the night I sort of felt a bit funny. I thought it might have been the way I was sleeping, the position of the head. So I went back to bed. I got up in the morning and I still felt something strange . . . .” (Participant 3, male, 76)

However this was not always the case and some partici-pants reported familiarity with education campaigns or had

Table II. Physical measures at baseline, post intervention and 3-month follow-up.Variables Baseline Post-program Difference 1 p value 3-month follow-up Difference 2 p valueWaist circ(cms) 100.19 ± 13.68 101.14 ± 14.13 −0.95 0.73 96.57 ± 10.94 4.57 0.86HR (beats/min) 66.81 ± 9.92 66.25 ± 11.57 0.56 0.59 67.8 ± 6.89 −1.55 0.49TUG (s) 17.47 ± 20.73 15.26 ± 21.41 2.21 0.00 15.99 ± 29.32 −0.73 0.436MWT (m) 377.82 ± 176.19 398.17 ± 165.38 20.35 0.08 450.39 ± 180.89 52.22 0.10

Table III. Risk factors, stroke knowledge and quality of life measures at baseline, post intervention, and 3-month follow-up.Variables Baseline Post-program Difference 1 p value 3-month follow-up Difference 2 p valueFat & Fibre Barometer 66.86 ± 11.06 72.33 ± 7.94 5.47 0.02 71.27 ± 9.52 −1.06 0.51Salt intake 10.62 ± 2.62 8.62 ± 2.36 2 0.01 8.6 ± 1.68 0.02 0.30Stroke knowledge 22.76 ± 4.29 28.48 ± 3.64 5.72 0.00 26.8 ± 4.43 −1.68 0.07Quality of life 3.55 ± 0.73 3.80 ± 0.61 0.25 0.01 3.88 ± 0.78 0.08 0.71

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previously read information regarding stroke warning signs and symptoms and thus responded appropriately.

“I had read I don’t know if it was in Readers Digest or some magazine, what the symptoms were . . . and in answer I said I think I’m having a stroke. So straight away she [my wife] phoned the hospital.” (Partici-pant 8, male, 80)

A concerning finding was the extent to which participants perceived themselves to be in good health and not at risk of stroke, or recurrent stroke, despite having multiple risk factors such as high blood pressure and diabetes and other significant comorbidities, such as heart disease. With further exploration it was apparent that participants were in fact not familiar with modifiable and non modifiable risk factors for stroke and the way in which these could be addressed to improve health.

“I didn’t think I was terribly much at risk to be honest . . . I always felt my diet was pretty good and fairly varied . . . but yes, I had high blood pressure.” (Participant 8, male, 80)

Benefit of MasterstrokeKnowledge

Most participants reported an increase in their knowledge about stroke, management of risk factors and lifestyle modifi-cation as a result of attending the Masterstroke program. The most commonly reported knowledge gains pertained to diet and making wiser food choices such as, “how to recognise what was good for you” (Participant 8, male, 80) through an increased understanding of food labels, nutritional value and dietary intake.

“ . . . .just the things you learn about diet and all stuff like that was incredible” (Participant 6, male, 52)

ExerciseThe incorporation of an exercise component into the program was highly valued by all participants. As a result participants reported improvements in regards to their levels of personal exercise as a result of Masterstroke. In particular, partici-pants reported increased strength, endurance and exercise tolerance.

“I think I’m actually stronger now in the top half [of my body] than I was before I had the stroke.” (Participant 6, male, 52)

The impact of regular exercise meant that many were now able to complete exercises and activities of daily living that they could not initially complete post stroke.

“I’m definitely stronger in the legs, I get up and down [off a chair] a lot easier . . . without increasing leg strength I wouldn’t have been able to do that and also it helps with the stamina cause I did tend to get out of breath very quickly.” (Participant 4, male, 60)

However the amount of exercise undertaken by partici-pants varied considerably depending on severity of impair-ments and exercise tolerance. For example some participants had impaired mobility and balance as a result of their stroke which impacted participation in contrast to other par-ticipants with milder impairments who were able to more fully participate.

Group benefitsParticipation in Masterstroke also provided an opportunity for increased socialisation among participants; sharing the common experience of stroke meant that participants felt less isolated. Overall, participants reported that being in a group with others in a similar situation was also an optimal way to find out how others have managed to negotiate life after stroke.

“Being with other people that have had similar incidents was good to talk to them and find out how they’ve managed.” (Participant 4, male, 60)

In addition, participants were able to empathise with each other and gain encouragement and motivation from seeing improvements in other group members over the course of Masterstroke.

“What was good is you got to know them and know that you’re not alone.” (Participant 3, male, 76)

“One of them there, his walking from the first day to the last day im-proved 100%.” (Participant 2, male, 67)

There was a common experience of participants benefiting from the opportunity to compare themselves with other par-ticipants in terms of stroke symptoms and severity of impair-ments. As a result, participants were able to appreciate their own circumstances and their personal progress.

“Well one of the things that really hit me was how bad a lot of younger people were and how lucky I’d been in comparison. That really hit me.” (Participant 8, male, 80)

Participants also reported that constant encouragement by the health professionals was advantageous and a source of moti-vation to improve and be “pushed.” (Participant 2, male, 67).

Motivation to modify lifestyleA major benefit of Masterstroke reported by participants was the opportunity to make lifestyle changes and improve one’s physical health. Following the initial onset of stroke, partici-pants expressed feelings of fear that they would experience a subsequent stroke. Participants reported a desire to make life-style modifications in order to manage risk factors and reduce their risk of secondary stroke. Feelings of fear were a key motivator for attending Masterstroke and for making lifestyle changes to reduce risk factors for stroke. As a result many participants reported that making changes to their lifestyles was in fact not difficult considering their “life was involved” (Participant 6, male, 52).

“I don’t want to have another stroke anytime soon so I’m gonna do the darn best I can to make sure I don’t.” (Participant 8, male, 80)

However some participants were not highly motivated to make lifestyle changes and were more dependent on external sources for motivation. In particular there was an expressed benefit towards attending Masterstroke as a source of motivation.

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“I committed myself to go there, so once I got there I got stuck into it.” (Participant 8, male, 80)

Goal settingGoal setting was central to the Masterstroke program and participants reported that this provided a means to learn how to set measurable and achievable goals for the duration of Masterstroke. Most participants expressed a common goal towards making physical gains, such as walking better and increasing endurance, which in turn impacted on functional abilities.

“Well I had a goal to try and start walking without the stick so the pro-gram was basically set-up to help me build up certain muscle groups in the leg, hip and knee.” (Participant 4, male, 60)

Despite the benefit of goal setting the majority of partici-pants stated that they had not achieved all of the goals that they identified as the commencement of Masterstroke which resulted in concerns for the future. However overall, partici-pants were motivated to achieve their goals and reported that Masterstroke was seen as a stepping stone towards improved outcomes.

“I think I’m on my way to it, I wouldn’t say I’ve achieved it because I don’t think [I have] . . . I think you’ve got to keep working at it.” (Participant 2, male, 67)

Lifestyle modification post MasterstrokeInterviews explored ongoing implementation of knowledge and lifestyle modification. Some participants reported per-sisting low motivation as a barrier to lifestyle modification specifically with regards to maintenance of a regular exercise regime. This was closely linked to no longer having a formal routine which promoted accountability.

“I just wasn’t feeling motivated . . . it’s just so easy on your own [be-cause you say] ‘yeah I’ll do it tomorrow’.” (Participant 8, male, 80)

However, some participants had decided to continue attending the same gym where Masterstroke was held. Participants reported motivation was facilitated by having familiarity with the staff and the gym setting.

“I’m not exercising much at all at home but I’m trying to get back into the program they run up there at John Hunter Hospital and going up there once or twice a week.” (Participant 2, male, 67)

Participants who reported having a tolerance of exercise and a regular exercise routine prior to Masterstroke were more likely to continue with exercise than those who had no previous exercise tolerance. This was heightened in indi-viduals who had the support of others to achieve this, routines such as a daily walks with their partners or use of home gym equipment.

“We’ve got a little home gym here so I keep the exercises up most morning. I’m doing the cross trainer for half an hour and then I do weights...I’ve been trying to pick up some muscle tone again.” (Par-ticipant 7, female, 64)

For other participants the experience of comorbidities was an additional barrier to ongoing exercise due to conditions such as lower back pain.

“Well I’m motivated but I’m usually de-motivated by the [back] pain.” (Participant 5, male, 81)

Participants reported that education about diet and nutrition was major benefits of Masterstroke which led to positive modifications to diet and “keeping my weight down” (Participant 2, male, 67). Participants stated they had increased the amount of salad and vegetables consumed and paid more attention to lowering levels of salt, sugar and fat content within their diets in order to make healthy modifications.

“I pay much more attention to you know, salt content and sugar con-tent and things like this.” (Participant, 8, male, 80)

Discussion

This study explored the experience of participation in the Masterstroke program which incorporated education, exer-cise and self-management principles aimed at assisting partic-ipants to make positive lifestyle changes towards reducing the risk of secondary stroke. We evaluated objective outcomes to assess the success of the program which were complimented by qualitative methodology highlighting common themes.

Exercise is featured in many studies as a key method of assisting the reduction of many risk factors associated with secondary stroke [1,25–27]. Our results showed trends towards gains in physical status which lend support these claims. Changes in heart rate, waist circumference and mobil-ity scores failed to reach statistical significance. This may indicate that the frequency or intensity of the exercise in this chronic stroke sample was inadequate or the duration of the program was insufficient, to produce statistically significant changes possibly due to deconditioning and maladaptive secondary changes [29]. Or conversely, outcome tools we adopted may have lacked sensitivity to detect clinically mea-surable changes.

Although not statistically robust, the trend towards physi-cal improvement is supported by the qualitative interviews whereby participants consistently reported the perceived benefits of exercise. Such results lend support the clinical importance of our quantitative findings even though statisti-cal significance was not achieved. The perceived benefits of exercise include: increased strength, endurance, exercise tol-erance and the ability to engage in activities of daily living. Our results are consistent with previous studies highlighting the benefits of exercise post stroke [25–28]. At the conclusion of the program most participants continued a regular exercise program at the gym associated with Masterstroke. This find-ing highlights the need for health professionals to adequately facilitate and support stroke survivors to attend local, commu-nity centres in order to promote ongoing engagement in exer-cise. However further research in a larger study is required to identify the program duration and dosage of exercise required

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to make positive long-term lifestyle modifications which will lead to secondary stroke prevention.

Lack of knowledge pertaining to stroke, risk factors and methods for lifestyle modification was a key finding in our study and is consistent with previous research [25,26]. Insufficient knowledge prior to the program meant many participants were unable to identify their stroke symptoms when they occurred, leading to a less then desired response rate for seeking emergency medical attention. The vast major-ity of participants increased their knowledge about stroke and directed lifestyle modification to address individual risk fac-tors. The average change in knowledge score was 5.2 points on a 31 point scale. This would appear to be clinically worthwhile, however, the assessment tool was developed locally and has not been validated. These results highlight the effectiveness of information provision in this format and reinforces the need for multidisciplinary teams to promote secondary prevention strategies for lifestyle modification [25,26].

Participants reported a key benefit of Masterstroke related to attending a stroke specific program with other stroke sur-vivors and a significant increase in quality of life was identi-fied. Participants’ exposure to other stroke survivors provided them with an opportunity for socialisation with other group members and to share management strategies for stroke. In particular participants reported benefits from the opportu-nity to compare themselves to other group members. This suggests there is benefit of group based stroke service delivery to facilitate ongoing adaptation post stroke.

All participants reported continuing lifestyle modifica-tions to minimize their risk factors following the conclusion of Masterstroke as a result of the knowledge, motivation and encouragement received during the program. The greatest areas of change occurred within the aspects of diet and exer-cise. Overall, participants who had previously adopted healthy lifestyle practices found it easier to make lifestyle changes than those who needed to make extensive change. Goal set-ting was identified as a positive strategy to assist behaviour change, however, ongoing modification proved difficult for some participants especially those who experienced consider-able impairments or comorbidities. As a result further explo-ration of strategies to maximize the engagement of those with significant physical impairments is required.

A major strength of this study was the opportunity to triangulate qualitative and quantitative findings. Qualitative methodology elicited specific information concerning lifestyle change which was supported overall by objective findings. Furthermore, to our knowledge this is the first inves-tigation of a program incorporating education with an inclu-sive exercise component and provides preliminary data for comparison in future studies concerning exercise dosage and duration to promote physiological change. A further strength of the study lies in the clinical feasibility of Masterstroke. This practical, cost and time efficient program was conducted by an established multidisciplinary team in a community setting; transference to other community teams could be easily facili-tated. Recruitment for Masterstroke used diverse avenues and the inclusion criteria was broad therefore the sample

population was representative of chronic, community dwell-ing stroke survivors in regards to diversity of age and stroke impairments.

A limitation of the Masterstroke study was the sample size. As this is a pilot program it was not statistically powered nor controlled. Consequently it was not possible to measure the effects of potential confounders such as time since stroke, stroke severity or social factors. Qualitative interviews were limited to one per person therefore this may limit the ability to capture changes over time and sustainability of modifications. There was potential for measurement bias during the study as the assessors were also the therapists who implemented the program. However, bias was minimized through the use of objective outcome measures with standardized implementa-tion and scoring regimes.

Overall, participation in the Masterstroke program for community dwelling stroke survivors resulted in significant improvements in knowledge, functional balance, dietary behaviours and quality of life. Qualitative interviews support the participants’ implementation of lifestyle changes which are essential in order to reduce risk of secondary stroke. These results are promising and this is a model that warrants rigor-ous investigation regarding the long-term impact of an edu-cation and exercise program for community dwelling stroke survivors.

Acknowledgement

We thank all the participants in the study, The Community Stroke Team, Hunter Stroke Service and the University of Newcastle who supported the study.

Declaration of Interest: The authors report no declaration of interest. There was no funding for this study.

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