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Evaluation of pilot implementation of the Chronic Stroke Resource Kit August 2014 Draft report

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i

Table of Contents

Project Contributors....................................................................................................................... iii

Contact details for information about this report ................................................................ ii

Acknowledgements ......................................................................................................................... ii

Executive Summary ........................................................................................................................ iii

Introduction ....................................................................................................................................... 1

Background ........................................................................................................................................ 1

Aims ....................................................................................................................................................... 4

Methods................................................................................................................................................ 5

Study Design .................................................................................................................................................. 5

Setting ............................................................................................................................................................... 5

Participants .................................................................................................................................................... 6

Measures ......................................................................................................................................................... 6

Data Collection .............................................................................................................................................. 8

1. Clinician surveys ............................................................................................................................ 8

‘Train the trainer’ day ........................................................................................................................... 8

2. Stroke survivor and carers ........................................................................................................ 9

Audit of the Resource Kit review assessment and therapies and services received by

stroke survivors ....................................................................................................................................... 9

Survey of stroke survivors .................................................................................................................. 9

3. Focus group interview of stroke survivors and carers ............................................... 10

Data Management ..................................................................................................................................... 10

Data Analysis .............................................................................................................................................. 11

Survey and audit data......................................................................................................................... 11

Focus group data analysis ................................................................................................................ 11

Ethical Review ............................................................................................................................................ 12

Privacy ........................................................................................................................................................... 12

Results ................................................................................................................................................12

‘Train the trainer’ day ............................................................................................................................. 12

Clinician views on the format, content and useability of the Resource Kit ...................... 17

Audit of the utilisation of assessment and intervention components of the Resource

Kit .................................................................................................................................................................... 20

Survey of stroke survivors .................................................................................................................... 24

Focus group interview of stroke survivors and carers ............................................................. 26

Discussion .........................................................................................................................................28

References.........................................................................................................................................31

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Appendices

1. Chronic Stroke Resource Kit

2. Train the trainer day pre and post surveys

3. Data collection form for stroke survivors

4. Survey monkey questionnaire for clinicians

5. Long form comprehensive review assessment

6. Short form comprehensive review assessment

7. Stroke Survivor surveys

8. Consent forms

9. Summary of Assessment form findings

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Project Contributors

Affiliations of investigators and project staff 1 Physiotherapy Department, St Vincent’s Hospital, Melbourne. 2 Translational Public Health Unit, School of Clinical Sciences at Monash Health,

Monash University.

3 Public Health: Stroke Division; Florey Institute of Neuroscience and Mental

Health.

Project conceptulisation

Brock, K1

Birnbaum, M1

Graven, C

Project coordination Brock, K1

Birnbaum, M1

Ethics preparation Brock, K1

Birnbaum, M1

Cadilhac, D2,3

Purvis, T2 Development of the ‘train the trainer’

education session Brock, K1

Birnbaum, M1

Cadilhac, D2,3

Purvis, T2

Development of the ‘train the trainer’

evaluation tool

Brock, K1

Birnbaum, M1

Cadilhac, D2,3

Purvis, T2

Development of survey and database for

utilisation of assessment and

intervention components Brock, K1

Birnbaum, M1

Cadilhac, D2,3

Purvis, T2

Development of the focus group interview

schedule

Brock, K1

Birnbaum, M1

Cadilhac, D2,3

Purvis, T2

Moss, K3

Facilitation of focus group

Purvis, T2

Moss, K3

Data analysis

Purvis, T2

Moss, K3

Black, S1

Report compilation and editing

Purvis, T2

Moss, K3

Cadilhac, D2,3

Brock, K1

Birnbaum, M1

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Contact details for information about this report

St Vincent’s Physiotherapy Department

PO BOX 2900

Fitzroy, Victoria 3065

Ph: (03) 9288 2211 (page 947) Fax: (03) 9288 3825

Email: [email protected]

No part of this report may be reproduced without prior written permission from

Dr Kim Brock, St Vincent’s Physiotherapy Department. Any direct reference to

this work must be appropriately acknowledged.

Suggested citation: Brock K, Birnbaum M, Graven C, Purvis T, Moss K, Cadilhac

D (2014) Evaluation of the pilot implementation of the Chronic Stroke Resource

Kit. Department of Health, Victoria.

Acknowledgements

This project was supported by a grant from the Victorian Stroke Clinical Network

(VSCN).

We would like to thank the clinicians and the stroke survivors and their carers

who participated in the project.

We also acknowledge Megan Reyneke (Monash University) for her input with the

Access database and Genevieve Agostenelli for assistance with data collation.

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Executive Summary

The Chronic Stroke Resource Kit (Resource Kit) is a tool for health care clinicians

working in community settings to facilitate review and management of stroke survivors

and carers in the chronic phase (ie. more than six months) following stroke. Evidence

based guidelines were developed under ten specific domains, such as participation,

functional limitations and decline, mood status, carer support and goal setting. For each

domain, the Resource Kit includes a process for interdisciplinary review, identification

of “flags” indicating a need for intervention, and a summary of evidence based

intervention options and management plans. In Victoria, there are well established

community health resources in both community rehabilitation services, funded through

Subacute Ambulatory Care Services, Department of Health, Victoria and Community

Health Centres. Within these centres, there are allied health and nursing practitioners

who are well placed to implement recommendations for stroke survivors and their

caregivers. However, education and support is limited for clinicians undertaking this

role. The purpose of the Resource Kit is to facilitate these community organisations to

provide high quality care for stroke survivors in the chronic phase of recovery. In the

current project, a pilot implementation of the Resource Kit was conducted, inclusive of

evaluation from key stakeholders; clinicians who utilised the tool and stroke survivors

and their carers who participated in the assessment processes. The results of the

evaluation will be utilised for further development of the Resource Kit and to determine

the feasibility of state-wide implementation of the Kit.

Methods: The study was conducted at eight sites, including metro and rural services

and community rehabilitation and community health services. Two groups of

participants were involved: stroke survivors and carers; and allied health and nursing

clinicians providing community based services. Clinicians participated in “train the

trainer” workshops, provided feedback on use of the Resource Kit with individual stroke

survivors, and completed questionnaires about their experiences with the Kit. Stroke

survivors participated in comprehensive review assessments and completed

questionnaires about their experiences. A focus group of stroke survivors was

conducted. Data regarding interventions being delivered to stroke survivor participants

before and during the project were collected.

Results: Data were received from 22 clinicians and 37 stroke survivors. Clinicians found

that the Resource Kit was useful and they would recommend it to other clinicians.

Stroke survivors agreed that the domains included in the Kit were important to them.

Both clinicians and stroke survivors supported the use of the comprehensive review

assessment, with clinicians indicating that it focused attention on areas of importance to

the stroke survivor. Clinicians reported increased confidence in exploring alterations in

mood and participation in valued activities with stroke survivors. The pilot

implementation did not show increased uptake of evidence based interventions

provided by community services. Areas identified for further development of the

Resource Kit include a greater focus on emotional changes after stroke and adjustment

to major life changes; community access to services; and issues about sexuality or

intimacy. Further research should focus on ways to improve access to evidence based

care for chronic stroke survivors living in the community.

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Introduction

The Chronic Stroke Resource Kit (Resource Kit) is a tool for health care clinicians

working in community settings to facilitate comprehensive interdisciplinary

review and management of stroke survivors and carers following stroke. The

Resource Kit represents a summary of current evidence-based practice in

rehabilitation for the assessment, treatment, and overall management of chronic

stroke survivors. Guidelines for assessment and management were developed

under specific domains, such as participation, functional limitations and decline,

mood status, carer support and goal setting. The Resource Kit was developed by

a team of clinicians at St Vincent’s Hospital,Melbourne (SVHM), with additional

input from external experts and consumer representatives, and was funded by

the Victorian Stroke Clinical Network (VSCN). The purpose of the Resource Kit is

to facilitate community organisations to provide high quality care for stroke

survivors in the chronic phase of recovery, ie. more than six months post stroke.

Preliminary testing of selected individual components occurred as part of the

development of the Resource Kit. The purpose of this project was to detail the

pilot implementation and evaluation of the tool in community settings across

Victoria between January 2013 and May 2014.

Background

In Australia, stroke is a leading cause of long-term, permanent disability. In 2003,

more than 140,000 Australians were living with a disability as a result of their

stroke [1]. Most stroke survivors live at home, with half of these individuals

requiring assistance to complete some aspects of their daily life, such as

household chores, home maintenance and transport [1]. Informal carers provide

most of the assistance required for these, and many other activities. Given the

incidence of stroke is increasing due to an ageing population, and that close to 20

percent of all strokes occur in people under 55 years old, the need to optimise

the recovery of people with stroke is clear [2].

The initial acute and subacute phases post stroke usually involve an intensive

rehabilitation period that may include inpatient and outpatient based

rehabilitation, with improved outcomes evident if evidence based

recommendations for rehabilitation are followed [3]. As outlined in the Victorian

Stroke Care Strategy, on returning home, stroke survivors and their carers often

experience an intense and difficult lifestyle adjustment as they attempt to

resume their former way of living [4]. In the chronic phase of stroke, a high level

of unmet needs has been identified, with a recent Australian study providing

evidence that 84% of stroke survivors report unmet needs, with younger age and

higher disability levels being associated with greater unmet needs [5]. Lack of

access to community-based services and programs may be an important factor in

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explaining the reported levels of unmet need. This is because stroke survivors

need to adjust to lifestyle changes and their loss of independence while

attempting to maximise their community reintegration and return to a healthy

and active lifestyle. There is also evidence that the needs of stroke survivors in

the chronic phase can change over time, particularly with regard to functional

decline [6,7].

Individuals who have had a stroke should have a review by a healthcare clinician

with expertise in stroke at least three, six, and twelve months after discharge

from hospital, with at least one review by a specialist medical practitioner [8,9].

The Australian Clinical Guidelines for Stroke Management recommend annual

reviews for people with ongoing impairments in order to determine current

health status and the merits of further intervention [8]. In addition, the person

who has had a stroke and their family/carer should have access to the details of a

relevant health care clinician who can act as a contact person within the

community setting [8].

In Victoria, we have well established community health resources in both

community rehabilitation services, funded through Subacute Ambulatory Care

Services, Department of Health, Victoria and Community Health Centres. Within

these centres, there are allied health and nursing practitioners who are well

placed to implement recommendations for stroke survivors and their caregivers.

However, education and support is limited for clinicians undertaking this role.

The Resource Kit (Appendix 1) was designed as an evidence based tool,

specifically to educate community based clinicians on the main issues for stroke

survivors. Key areas of focus are the risk of post stroke depression, indicators of

functional decline, and the need for a goal orientated and holistic approach to

enhance long term recovery and participation in valued life activities. The

Resource Kit includes a process for comprehensive interdisciplinary review for

10 domains (see Table 1); identification of “flags” indicating a need for

intervention; and a summary of evidence based intervention options and

management plans for each domain. The Resource Kit also includes

documentation options to provide stroke survivors and their carers with a

written summary of issues and personal goals identified and formats to promote

communication between clinicians, including general medical practitioners.

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Table 1: Domains of the Chronic Stroke Resource Kit

Domain

Participation

Functional limitations and decline

Minimising risk of falls

Communication

Cognition

Mood Status / Depression

Health-related quality of life

Secondary stroke prevention and risk factor management

Carer support

Goal setting

The Resource Kit was developed by a team of clinicians at SVHM, funded by a

competitive grant through the VSCN in 2012. Input from external experts was

included, particularly in the areas of depression, falls and carer support.

Consumer representatives were involved in all stages of development. The

Subacute Committee of the VSCN were pivotal in review and refinement of the

Resource Kit. The Resource Kit has been presented at a number of professional

meetings, including workshops at events for clinicians sponsored by the VSCN,

and feedback from these sessions was incorporated into the Resource Kit. Key

assessment components of the Resource Kit relating to depression and

participation were pilot tested during development. However, no pilot testing of

the completed Resource Kit was undertaken prior to this project.

Project objective

The purpose of this project was to conduct a pilot implementation of the

Resource Kit, inclusive of evaluation from key stakeholders; clinicians utilising

the tool and stroke survivors and their carers who participate in the assessment

processes. Through this evaluation it is anticipated that further development of

the Resource Kit will be facilitated, and that the feasibility of state-wide

implementation to use the Resource Kit to improve management of chronic

stroke survivors will be determined.

Key issues for implementation and evaluation

The Resource Kit has a broader aim than provision of information. A main

intention in the development of the Resource Kit was to promote a culture shift

in community services. This was particularly around perceptions of the potential

of rehabilitation type activities to enhance the lives of stroke survivors and

carers in the chronic phase after stroke. There is a considerable body of evidence

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to support the benefits of rehabilitation activities during the chronic phase (see

Appendix 1), but there are few indications of translation of this evidence into

clinical practice. The second main intention was to promote holistic care,

particularly with regard to stroke survivors and carers pursuing their personal

goals including the return to valued activities, thus driving the recovery process.

The third main intention was to assist clinicians to promote self efficacy and self

management during engagements with clients.

To promote a culture shift, it was required to consider the mode of

implementation. The Resource Kit is a 47-page document, inclusive of

assessment forms. Although the document is designed for easy navigation and

has a reader friendly layout, we were concerned that use of the Resource Kit may

be restricted to utilising the assessment formats only, with occasional reference

to the evidence based information. This would be unlikely to achieve the desired

culture shift. Therefore, the implementation was designed to include a “train the

trainer” module to ensure a focus on achieving the stated intentions.

It was also important to capture the views of stroke survivors and carers

regarding their participation in comprehensive assessments and any goal

directed rehabilitation activities that may have resulted from the assessment.

We wanted to identify whether the domains considered in the Resource Kit

represented areas of concerns for consumers and whether the process of

assessment, was considered a useful experience.

With regard to clinicians involved in the implementation, we sought to capture

their views on the provision of care for chronic stroke survivors and carers in

Victoria, as well as feedback on the structure and contents of the Resource Kit.

We also sought to identify whether use of the Resource Kit improved knowledge

and confidence in dealing with recovery and reintegration issues for stroke

survivors, such as depression.

The planning of the implementation project was greatly facilitated by the

interest shown by allied health and nursing clinicians during the development of

the Resource Kit. Conducting presentations and workshops at professional

meetings gave us an opportunity to invite those present to provide an email

contact if they were interested in the further development of the Resource Kit.

This email list enabled us to identify clinicians and health services who were

prepared to trial the Resource Kit and participate in these evaluation activities.

Aims

The primary aim of the project was to obtain consumer and clinician

feedback regarding the content and processes of the Resource Kit, to guide

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revisions to better meet the needs of consumers and clinicians. For

consumers, we sought their input on the appropriateness of the review

assessment; whether it covered the domains of interest for them, and the

quality of the experience of participating in the assessment. For clinicians,

we sought their input on the structure and content of the Resource Kit and

the utility of the review assessment.

Secondary aims were:

a) To describe clinician perceptions of current service provision in the

community for stroke survivors and their carers; and their

perceived competence in managing chronic stroke survivors.

b) To determine whether use of the Resource Kit improved clinician

knowledge and confidence in their ability to deliver a

comprehensive assessment and plan interventions for stroke

survivors and their carers.

c) To determine whether participation in a review assessment resulted

in changes to management of stroke survivors and carers.

Methods

Study Design

This project was based primarily on data from a prospective audit of review

assessments and related service utilisation by stroke survivors and carers.

Additionally, questionnaires for stroke survivors, carers and clinicians at varying

time points were undertaken, and a focus group was conducted with stroke

survivors and carers.

Setting

This study was conducted at eight sites, five metropolitan sites and three rural

sites. Five sites were community rehabilitation services (four metropolitan, one

rural), one site was a metropolitan community health service and one site was a

rural health service. The remaining site was a rural stroke care liaison service.

Key clinicians from each of these sites had indicated their interest in the

Resource Kit project prior to the commencement of the study and responded to a

group email asking for volunteers to participate in a pilot implementation of the

Resource Kit.

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Participants

Two groups of participants were involved in this study: stroke survivors and

carers; and clinicians providing community based services to stroke survivors.

Stroke survivor and carer participants

Stroke survivors who were six months or more post stroke and attended the

participating sites were invited to participate. Prospective participants may have

been already attending the site when the study was commenced or commenced

at the sites at a later date. Sites were encouraged to include all those who met the

selection criteria. However, no registers were kept and the sample should be

viewed as a convenience sample. Clinicians were also encouraged to invite carers

to participate.

Stroke survivors and carers who attended either the SVHM Community

Rehabilitation Centres or Inner East Community Health Service were invited to

participate in the focus group.

Clinicians

Clinicians from allied health disciplines and nurses working at the participating

sites were eligible to participate in the study. Three modes of participation were

available for clinicians.

a) Clinicians who attended the introductory one day “train the trainer”

module at SVHM completed pre and post questionnaires. Each

participating site was encouraged to enroll two clinicians in this training

day.

b) Clinicians who conducted the review assessments at the sites were

invited to provide feedback on the utility of the assessment for individual

stroke survivors.

c) Clinicians who conducted the review assessments were invited to

complete a questionnaire about the utility of the Resource Kit at the

completion of the project.

Some clinicians may have participated in all three of these modes. Those who

attended the “train the trainer” day were tasked with orientating other

interested members of staff to the project, who may then have participated in

modes b) or c).

Measures

The measures in this study included information collected in audit, through

questionnaires and in the focus group. A summary of the measures for stroke

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survivors and carers and clinicians is provided in Table 2. Figure 1 provides an

overview of the study design and evaluation methods.

Table2: Summary of measures Participants Measure Data type Stroke survivors & carers

Patient demographics and resource utilisation form

Quantitative

Chronic Stroke Assessment Forms

Quantitative & Qualitative

2 week stroke survivor and carer questionnaire

Quantitative & Qualitative

8 week stroke survivor and carer questionnaire

Quantitative & Qualitative

Focus group data

Qualitative

Clinicians Train the Trainer day pre and post questionnaires

Quantitative & Qualitative

Comments on assessments of individual stroke survivors

Qualitative

Survey monkey questionnaire at completion of the study

Quantitative & Qualitative

‘Train the trainer’ workshop

Pre and post survey of clinicians attending workshop to assess change in knowledge, and confidence in managing chronic stroke survivors and feedback on the workshop

Implementation- clinicians using Resource Kit assessment on chronic stroke survivors in community health settings

Clinicians conducted comprehensive screening assessments with stroke survivors/carers, recorded information about services/therapies survivors were receiving prior to the assessment and then at the end of the episode of care at the health service, and also provided comment about the utility of the Resource Kit for that individual

Focus Group with stroke survivors and carers at the end of the implementation period

Clinician survey completed at the end of the implementation period regarding the useability of the Resource Kit

Stroke survivor survey at 2 weeks post assessment, then 8 weeks post assessment

Evaluation of Resource Kit assessment

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Figure 1: Overview of the study design and evaluation methods

Data Collection

A mix of quantitative and qualitative methods were used within a pre-post

evaluation design. The methods below outline these modalities in further detail.

1. Clinician surveys

As mentioned clinicians were asked to complete surveys at various time points

during the evaluation. These are further summarised below.

‘Train the trainer’ day

Clinicians who attended the ‘train the trainer’ day were asked to complete a

paper-based survey at the beginning (pre) and then at the end of the training

session (post) (Appendix 2). Surveys were de-identified, and an individual

identifying number was generated for each clinician to be used on both pre and

post surveys. Both open and closed questions were included. The initial baseline

(pre) survey captured basic demographic data, as well as quantitative

information regarding clinician’s beliefs and knowledge about the current care

they provide for chronic stroke survivors. Also included were closed questions

with various scales of response to rate the confidence of clinicians in managing

and treating patient with chronic stroke. The post survey administered at the

end of the training session included similar questions on knowledge and the

current care for chronic stroke survivors, and clinician confidence in managing

and treating issues associated with chronic stroke survivors. Feedback on the

content, presentation and usefulness of the training day itself was also elicited.

Open-ended questions were also included to capture additional information the

clinicians’ wanted to share on the training day.

Clinicians who used the Resource Kit in the community setting

Clinicians were provided with the opportunity to respond to open-ended

questions at completion of the data collection for each patient (Appendix 3)

regarding the usefulness of the Resource Kit for that individual patient; whether

it led to a change in focus or management, and suggested improvements to the

Resource Kit.

All clinicians who used the Resource Kit during the implementation phase were

also asked to complete an online survey via SurveyMonkey

(http://www.surveymonkey.com) to provide feedback on the format, content

and usability of the Resource Kit. The survey was completed by clinicians at the

end of the implementation phase. In addition to demographic information about

the clinician, quantitative data regarding clinician confidence in managing and

treating patients with chronic stroke both before and after using the Resource

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Kit were collected. Open-ended questions were also included to capture any

additional information about clinician’s views on the useability of the Resource

Kit (Appendix 4 ). All data were de-identified.

2. Stroke survivor and carers

Audit of the Resource Kit review assessment and therapies and services received by stroke survivors

All stroke survivor participants in the project had a Resource Kit comprehensive

review assessment at the commencement of their involvement in the project.

The findings of this assessment were recorded on either the Long Form of the

Assessment (Appendix 5) or the Short Form of the Assessment (Appendix 6),

according to the assessing clinician’s preference. In addition, clinicians recorded

therapies and/or services stroke survivors were receiving at the initial contact

point, and again at the end of the episode of care at the health service, or at the

eight week post assessment review in the Resource Kit, whichever occurred first

(Appendix 3).

Investigators also made regular contact with each site to check the progress and

offer further assistance in using the Resource Kit, as required.

Survey of stroke survivors

Stroke survivor participants who received the Resource Kit assessment were

asked to complete two paper-based surveys (Appendix 7). The first was sent two

weeks after their Resource Kit assessment to obtain their views of this

assessment. Like the post audit, the second stroke survivor survey was

completed eight weeks after the assessment, or at the end of their care provided

by the health service. This survey was intended to gain their perceptions on the

interventions and referrals resulting from the assessment. These surveys were

designed to be completed independently and could be sent as a postal survey.

However, it was considered that many stroke survivor participants would find

completing the survey difficult because of cognitive, communication or

community access issues. For each participant, the assessing clinician

determined the optimum mode of delivery of the surveys; as face to face

interviews, over the telephone or as a postal survey.

Closed questions were included, as well as open-ended questions which

provided stroke survivors with the opportunity to submit additional information

on services/therapies they felt were unnecessary, or conversely, that would have

been useful but weren’t offered. These open-ended questions also provided an

opportunity for the stroke survivor to raise any other issues associated with

services and support offered to chronic stroke survivors in the community.

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3. Focus group interview of stroke survivors and carers

Survivors and their carers who had received the Resource Kit assessment were

invited to participate in a semi-structured focus group interview. Potential

interviewees were approached by a physiotherapist from SVHM or Inner East

Community Health and participation in the interview was voluntary.

Participation was offered to all stroke survivors who participated in a review

assessment, and their carers, where the person was deemed capable of taking

part in a focus group. The interview schedule comprised 18 primarily open-

ended questions covering the survivors’ and carers perceptions of recovery and

living with stroke, access to resources, any challenges/barriers that may have

been faced, and thoughts on the use of the Resource Kit assessment. The

interview schedule, although not specifically underpinned by a single theoretical

framework, covered each of the seven domains listed in the checklist recently

published by Flottorp and colleagues such as: ‘guideline factors’, ‘professional

interactions’, ‘resources’, ‘individual health professional factors’, ‘patient factors’,

‘social factors’ and ‘organisational characteristics [10].

The focus group interview was held at St. Georges Hospital in Kew from 1.30 pm

to 3 pm on 21/05/2014. Two research staff from Monash University and The

Florey facilitated the interview. Each researcher took notes during the interview

to ensure all major issues and views were recorded. With consent from the

participants, the interview was also tape recorded to aid with data transcription.

One survivor and carer were unable to attend the planned focus group. A

recorded telephone interview was conducted by one researcher (TP) with this

survivor and carer on 27/05/2014 using the same interview schedule. TP took

notes during the telephone interview, which were later verified using the tape

recording.

Data Management

An overview of the data management is provided in Table 3. Audit forms and stroke survivor survey

An individual identification number was generated for each stroke survivor and

used for the initial and post audits that were completed by a clinician. This

meant that all data were de-identified. The same individual identification

number was used on the stroke survivor survey so information could be tracked.

A random sample of 10% of the paper-based forms were double entered into the

database to assess data entry quality and over 96% of the data points were

consistent.

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Table 3: Data management methods

Data Management Information collected

Access database Audit of the utilisation of the components of the Resource

Kit

Survivor survey- 2 weeks and 8 weeks post assessment

Excel (Microsoft

Corporation, 2010)

Train the trainer pre and post clinician survey

Focus group data

Comprehensive review assessment data

SurveyMonkey Clinician feedback at the end of the implementation project

Data Analysis

Survey and audit data

Data from the pre-post ‘train the trainer’ clinician survey were analysed in Excel

(Microsoft Corporation, 2010).

Data from the on-line SurveyMonkey database containing responses from

clinicians who had utilised the Resource Kit were downloaded and analysed

using STATA (statistical software) by the Monash University staff. Likewise, the

Access database containing audit data from the use of the Resource Kit and the

stroke survivor survey was converted to a STATA file for analysis. All data were

then cleaned and merged and then analysed by Monash University staff using

Intercooled STATA 12.0 for Windows (Stata Corporation,

http://www.stata.com/stata12/). Descriptive statistics are presented. Where

data were missing for a question, these data was excluded from the analysis for

individual questions.

The open-ended responses from surveys were subjected to thematic analysis. A

coding tree outlining the major themes and sub-themes was developed and used

to systematically code and then analyse the text responses. The coding was

verified independently by two researchers to ensure the interpretation and

meaning of the data was maintained.

Focus group data analysis

Qualitative data from the focus group were subjected to internal verification,

which involved two researchers reviewing and cross-checking responses and

other notes recorded at the focus group. Qualitative data analysis software QSR

NVivo 9 was used to identify and extract key themes and sub-themes that

emerged from the data transcript. Data for each of the key themes and sub-

themes were summarised, in order to provide an overview of the feedback

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regarding respondents’ experiences of care for stroke survivors within the

community.

Ethical Review

Ethical review of the project was initially conducted by the SVHM HREC,where

the study was approved to be a Quality Assurance Project. Three sites did not

have formal associations with a HREC and these sites were added as external

sites to the SVHM Ethics Approval. The study was approved as Quality Assurance

at South West Healthcare and Goulburn Valley Health. Two sites required

submission of the project as a Low Risk Ethics Application and the study was

approved as such at Eastern Health and Southern Health. Consent forms for

stroke survivors and carers for SVHM are included in Appendix 8. In addition,

the focus group component of the study was approved as a Low Risk study by

the SVHM HREC; the consent forms for focus group are also included in Appendix

8.

Privacy

All data that were collected have been de-identified in this report. All data, in

paper and electronic formats, are kept confidential and stored and secured at

SVHM, as required by the Australian Code for Responsible Conduct of Research

(National Health and Medical Research Council, Australian Research Council,

Universities Australia. Australian Code for Responsible Conduct of Research.

Canberra: Australian Government; 2007).

Results

For continuity, the results sections will be presented in a similar order to that

described in the methods.

‘Train the trainer’ day

In total, 16 clinicians from 10 health services participated in the ‘train the trainer’

day. Two of the 10 sites did not commence the study; one site had competing

projects and commencement at the other site was initially delayed by the need

for extended ethical review and then the primary contact had maternity leave.

Table 4 depicts the demographics of the clinicians who attended the ‘train the

trainer’ day.

Only four clinicians had previously received any prior training in managing

chronic stroke survivors. All clinicians unanimously felt there were

improvements to be made in the quality and comprehensiveness of services

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offered to people with chronic stroke and their carers in Victoria, as well as

locally, at their site (Figure 2).

Figure 2: Clinicians perceptions of quality of services offered to chronic

stroke survivor’s and their carers in Victoria and at their centre (N=16)

Perceptions on service quality

The majority of the barriers clinicians felt impeded the management of chronic

stroke survivors at a local level were also identified at a State level. Many

clinicians perceived funding limitations affected resources, especially the

services available post the community rehabilitation phase, and staffing levels

alike. Several clinicians also stated that often patients with a chronic condition

become less of a priority compared to those with acute conditions, which was

perceived to be exaggerated by a lack of organisational management and

decreased awareness and knowledge of the issues this patient population faces.

Confidence, beliefs and knowledge in managing chronic stroke survivors

There was an improvement in confidence levels reported by clinicians in

managing all aspects of chronic stroke survivors after the train the trainer

education (Figure 3). This was especially the case for their ability to explore

alterations in mood (40% confident pre; 93% confident post), and being able to

explore options to improve stroke survivor participation in valued activities (73%

confident pre; 100% confident post).

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Figure 3: Clinician changes in confidence in managing areas involved with

chronic stroke patients before and after the train the trainer day

After the training day, more clinicians were able to recognise more issues

commonly faced by chronic stroke survivors (Figure 4).

Figure 4: Clinician knowledge of the issues commonly faced by chronic

stroke survivors and their carers before and after the training day.

There was more awareness of the risk factors for post-stroke depression,

especially cognitive impairment, stroke severity and being female after the

training day (Table 4). Interestingly, more clinicians incorrectly recognised age

as a risk factor for depression after the training.

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Table 4: Clinician knowledge of risk factors for post-stroke depression

before and after the training day

Correct Risk Factor Pre training day Post training day % change

Physical disability 15 (100%) 15 (100%) -

Cognitive impairment 11 (73%) 15 (100%) ↑ 27%

Dysphasia 15 (100%) 15 (100%) -

Stroke severity 13 (87%) 15 (100%) ↑ 13%

Female 4 (27%) 14 (93%) ↑ 66%

Social isolation 15 (100%) 15 (100%) -

Incorrect Risk Factor

Age 8 (53%) 12 (80%) ↑ 27%

Pre-morbid function 12 (80%) 11 (73%) ↓ 7%

Socioeconomic status 11 (73%) 9 (60%) ↓ 13%

Following the training, clinicians general knowledge of the majority of issues

surrounding chronic stroke improved (Table 5).

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Table 5: Clinician general knowledge of chronic stroke before and after

training

Correct answers

Pre training

day N=15

Post training

day N=15

% change

Proportion of people experiencing

depression post stroke

73% 93% ↑ 20%

Proportion of chronic stroke

survivors experiencing a decline in

mobility

20% 20% -

How often should chronic stroke

patients be reviewed

27% 67% ↑ 40%

Most stroke survivors live at home 87% 100% ↑ 13%

Most stroke survivors have a

disability

100% 100% -

Stroke does not affect ability to

engage in social or leisure

activities

100% 93% ↓ 7%

Mood disturbances after stroke

are common

100% 100% -

Survivors with dysphasia are more

likely to experience depression

than those who don’t

87% 100% ↑13%

Long-term functional decline is

rare following stroke

100% 93% ↓ 7%

Community-dwelling survivors

have twice the risk of falling

60% 93% ↑33%

Stroke can lead to role changes

within the family

100% 100% -

Increasing social support can help

reduce depression in carers

100% 100% -

Stroke creates emotional and

identity issues

100% 100% -

Informal caregivers are rarely

affected by someone having stroke

if they have good social support

80% 93% ↑ 13%

Feedback on the ‘train the trainer’ day

Overall, the feedback on the ‘train the trainer’ session was favourable (Table 6).

Clinicians reported that the most useful aspects were the background

information on each domain, and the workshop tasks. There were some

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clinicians who felt that having more time to talk about the actual implementation

of the Resource Kit would have been beneficial.

Table 6: Feedback on the ‘train the trainer’ day

N=15 1 2 3 4 5 6

The content of today’s

training was easy to

understand

11 4 0 0 0 0

The content of today’s

training was useful

7 7 1 0 0 0

The presentation of the

training was useful

7 8 0 0 0 0

The presentation of the

training was well paced

9 3 2 0 1 0

The group activities

during the training

session helped my

learning

6 6 1 0 0 0

The training manual

provided was excellent

8 6 1 0 0 0

Overall, the training

prepared me to manage

chronic stroke

survivors/carers well

8 6 1 0 0 0

1=strongly agree- 6=strongly disagree

Clinician views on the format, content and useability of the Resource Kit

Overall, 12 staff who had used the Resource Kit assessment on survivors in the

community completed the clinician survey at the end of the implementation

phase. The response rate could not be determined as it was unknown how many

clinicians at the Community Rehabilitation Centres/Community Health Centres

were involved in conducting review assessments with stroke survivors.

Nevertheless, of those who responded, six (50%) had completed the ‘train the

trainer’ day. Table 7 outlines the demographics and experience of these

clinicians who had used the Resource Kit assessments.

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Table 7: Demographics and experience of those clinicians who had used the Resource Kit

Demographics Clinicians who

attended the train-

the-trainer day

N=16 n (%)

Clinicians who used

the Kit

N=12

n (%)

Gender

Female 15 (94) 11 (92)

Age (years)

<24 2 (13) 0 (0)

25-34 8 (50) 7 (58)

35-44 2 (12) 2 (8)

45-54 3 (19) 2 (17)

55-65 1 (6) 2 (17)

Professional background

Physiotherapist 5 (31) 5 (42)

Occupational therapist 8 (50) 6 (50)

Nurse 1 (6) 1 (8)

Speech pathologist 2 (13) 0 (0)

Worked in profession

<1 year 1 (6) 0 (0)

1-2 years 1 (6) 0 (0)

2-5 years 3 (19) 4 (33)

5-10 years 8 (50) 3 (25)

> 10 years 3 (19) 5 (42)

Work setting*

Community rehabilitation

centre

10 (63) 7 (70)

Community health centre 4 (25) 3 (30)

Both 2 (12) 0 (0)

Experience in current setting

<1 year 2 (12) 0 (0)

1-2 years 3 (19) 2 (18)

2-5 years 6 (38) 6 (55)

5-10 years 2 (12) 2 (18)

> 10 years 3 (19) 1 (9)

Experience with chronic stroke

survivors

Regularly work with this

patient group

10 (63) 5 (42)

Occasionally work with this 5 (31) 6 (50)

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patient group

Rarely work with this patient

group

0 (0) 0 (0)

No previous experience 1 (6) 0 (0)

Other^ 0 (0) 1 (8)

*2 with missing data for clinicians who used Kit; ^Other included someone who delivers stroke self-management program

Figure 5 outlines the clinicians’ perceptions of their confidence in managing

aspects of care for their patients with chronic stroke before and after using the

Resource Kit assessment. After using the assessment, 92% compared to 50%

(before using the assessment) were confident to provide options to improve

participation, and almost twice as many felt confident exploring alterations in

mood (42% before; 83% after). This is a similar representation to the change

seen before-after the ‘train the trainer’ day.

Figure 5: Clinician changes in confidence in managing areas involved with

chronic stroke patients.

After using the assessment, the majority (92%) of the clinicians would

recommend the use of the Resource Kit for all chronic stroke survivors (Figure

6).

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Figure 6: Clinician’s perceptions on the benefits of the Resource Kit From the qualitative responses, the feedback from clinicians regarding the

useability of the Resource Kit was generally positive. They valued the structure

and guidance that the questions provided, and the fact that it covered a variety of

scenarios that chronic stroke survivors experienced. A couple of clinicians raised

concerns that it may duplicate some already existing assessment tools being

used at certain sites. It was also felt that the Resource Kit may be strengthened

by including additional areas such as community access and sexuality. In terms

of useability, some clinicians felt it was easy to use and follow the layout, while

others commented that may be it could be condensed to reduce the time taken to

deliver the assessment.

Audit of the utilisation of assessment and intervention components of the Resource Kit

Between March 2013 and Jan 2014, the Resource Kit assessment was used on 37

stroke survivors at the eight participating sites. Appendix 9 summarises the

findings from the review assessments received (n= 33).

Clinicians filled in the assessment and service utilisation components of the audit

on various numbers of survivors. The available audit data for each section are

outlined in Table 8.

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Table 8: Number of survivors with Resource Kit assessments and completed data at each site

Site

number

Location/ type

Number Resource

Kit used on

N= 37

Completed assessment

forms submitted

N = 33

Demographic data

completed by clinicians

N=30

Data on current services

N=27

Data on services

post assessment

N=20

Survivor survey

completed (2 weeks)

N=31

Survivor survey

completed (8 weeks)

N=25

1 Metro CRC 9 9 8 7 5 7 5

2 Metro CRC 5 5 5 5 4 5 5

3 Metro CRC 2 2 2 2 0 2 2

4 Rural Stroke Liaison

10 10 10 10 9 9 8

5 Rural CRC 3 0 2 0 0 3 0

6 Metro CHS 4 4 0 0 0 2 2

7

Rural CHS 3

3

3

3

2

3

3

8 Metro CRC 1 1 0 0 0 0 0 CRC- Community Health Centre; CHS- Community Health Service

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Table 9 outlines the demographics of the stroke survivors who received the Resource Kit assessment. More than half were male and the majority had an ischaemic stroke. Table 9: Demographics of survivors who received the Resource Kit assessment

Demographics N= 30

n (%)

Gender

Male 19 (63)

Age (years)

Median (Q1, Q3) 60 (53, 75)

Stroke type^

Ischaemic 17 (63)

Haemorrhage 8 (30)

Both 2 (7)

Time since stroke (months)

Median (Q1, Q3) 12 (9, 21)

Living arrangements

Alone 8 (27)

With Family/Friend 21 (70)

Supported Residential Facility 1 (3)

Availability of carer#

Physical assistance 24 hours 9 (31)

Supervision 24 hours 3 (10)

Physical assistance part time 6 (21)

Supervision part time 3 (10)

Daily check 1 (4)

None 7 (24)

Existing patient at service* 19 (83)

Q1, Q3- 1st and 3rd quartile; ^3 cases missing/unknown; #1 cases missing/unknown; * 7 cases missing/unknown

While somewhat difficult to quantify, the data in Table 10 outlines the

services/therapies survivors were receiving prior to the Resource Kit assessment, and

then after use of the Resource Kit assessment.

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Table 10: Comparison of interventions recorded before and after the Resource Kit assessment^

Domain Interventions pre

assessment

N=27 Interventions

post assessment

N=20

Participation/

Functional limitation

/fatigue/falls

Physiotherapy 41% Physiotherapy 30%

Occupational

therapy

41% Occupational

therapy

5%

Various exercise

groups+

22% Exercise group 10%

Orthotists 4% Podiatry 5%

Botox 5%

Volunteer

programs

(vocation)

5%

Continence Continence clinic 4% Continence

clinic/nurse

20%

Communication Speech therapy 7% Speech therapy 10%

‘Talk and Tea’

group

5%

Cognition/mood/qual

ity of life*

Neuropsychology 7% Neuropsychology 5%

Psychology/psychiat

ry

11% Psychology/psych

iatry

5%

Self-Management

Program

22% Counselling and

support group

30%

Stroke education

program

5%

Secondary prevention GP involvement 30% GP involvement 10%

Rehabilitation

physician

7%

Carer Social worker 11% Social worker 5%

Home Care 7%

Respite 7%

^There is much overlap in the domains for which services/activities relate. An attempt has been made to categorise these; *Occupational therapy also linked with cognition/mood; +includes upper limb classes, balance classes, fatigue management classes, hydrotherapy

Clinician feedback for individual stroke survivors

In 56% of patients (n=14), clinicians felt that the assessment with the Resource Kit led

to some kind of change in focus for services that the patient was already receiving

(Figure 7). Importantly, this was on an individual patient basis rather than globally. The

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additional feedback from clinicians was that using the Resource Kit assessment tended

to focus on areas that may not have been followed up previously, or was more focused

on areas of importance to the survivor. It was also suggested that it would be beneficial

to complete the Resource Kit assessment annually as stroke survivor needs may change

over time.

Figure 7: Clinician responses about results of Resource Kit Assessment

Survey of stroke survivors

Two weeks post assessment In total, 31 of the 36 (86%) stroke survivors responded to the survey request two

weeks after their Resource Kit assessment. Of these, 17 (55%) reported the assessment

to be ‘very worthwhile’ and 14 (45%) felt it was ‘somewhat worthwhile’. Stroke

survivors agreed that the domains included in the resource kit were important (Figure

8). Other useful areas survivors felt could have been covered in the assessment included

Religion and further inquiry and information on changes in emotions.

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Figure 8: Outline of stroke survivor perceptions of the importance of the domains

of the Resource Kit Assessment

Eight weeks post assessment (or end of episode at the health service)

Twenty-five survivors completed the follow-up survivor survey. At this time, 60%

(n=15) stated that they remembered receiving advice from a health professional or

referral to other therapies after the Resource Kit assessment. Overall, 21 (84%)

survivors felt that having a comprehensive assessment as part of the Resource Kit

assessment was helpful. The stroke survivors perceptions on the services/therapies

available are listed in Table 11.

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Table 11: Stroke survivor’s perceptions on recommended services/therapies as a

result of the assessment

Survivor perceptions N=25

n (%)

Services

Referred to services or

therapies that were helpful*

19 (83) Therapies, including physiotherapy,

occupational therapy and speech

therapy

Referred to services or

therapies that were not

helpful*

2 (9) Recommended change in medication,

and advice to cease smoking

Referred to services or

therapies you chose not to

receive*

8 (35) Continence clinic, botox injections,

counselling and support and

psychological services

Services you felt you

required but did not receive

6 (24) Counselling and support,

physiotherapy for longer duration

Services you were unable to

access, and why

7 (28) Physiotherapy, hydrotherapy

Not locally available 2 (29)

Too expensive 1 (14)

Lack of transport 2 (29)

Other 2 (29)

*2 cases missing

Focus group interview of stroke survivors and carers

In total, the focus group and telephone interview comprised six participants, four were

stroke survivors (50% male) and two were carers (100% male). The average age (of all

participants) was 68 years. The average time since stroke was 16 months. Two of the

stroke survivors were living with family, one was at home with a carer and one was at

home alone.

The following section provides a summary of the main themes that arose from the focus

group interview.

Physiotherapy was considered the first step and the most important and beneficial

step in recovery. However, there were concerns raised that the services were limited

and difficult to access long-term:

“Need more access to therapy. I go backwards when not in therapy”.

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“Need to resolve anger issue about the system. How can we achieve these goals in eight

weeks? The system is set up to fail. No way in six weeks can I climb stairs sequentially and

be comfortable to be able to use my left hand for light switches and shaving for example”.

Respondents reported a need for more information about emotional changes after

stroke.

“Not once was my partner warned of changes after the stroke, that I might have some

difficulty emotionally. Need additional information about mood changes before discharge

for the carer. No discharge planning should take place until the significant other is present.

Family meetings would be good”.

Respondents felt that their needs had changed one year post-stroke and that they had

become more physically independent.

“My needs are less now. I can do more things now. I can read now and concentrate more, I

can sleep now”.

“We all need help and depend on someone but being independent helps us to go on. I try to

make my own lunch. I push the trolley when shopping with my wife which I couldn’t do

before. Of course I am tired when I go home”.

Carers reported a need for more information about what to expect after stroke. In

particular, the emotional aspects and mood changes post-stroke such as anxiety and

depression.

“[There is] nothing to educate you about what you’re going to come up against. No-one

said changes in personality might happen”. (Carer)

Also from the carer’s perspectives, more information was wanted about eligibility for

allowances and services:

“There's no system in place to handle such a major change in life. No-one gives you

assistance to say this is what's going to happen, this is what you're going to do. No -one

assists you. Centrelink is hopeless.”

More access to disabled parking at rehabilitation centers was also deemed important,

along with the recurring theme of the need for access to longer term rehabilitation and

physiotherapy.

“At St. Vincent’s there’s a five hour wait and see a different person every time. The main

thing is seeing when [stroke survivor] does physio[therapy] she can do more. When the

eight week stint finishes you have to wait before you can go back”.

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Responses regarding the Resource Kit assessment were varied in that some

respondents did not readily recall having been given the assessment. One stroke

survivor said: “I get asked a lot of questions by people”. Another stroke survivor who

remembered the assessment task said they had taken the paperwork home to complete

it. They stated that: “It was useful for the new physio[therapist] to have an idea of where

I'm at” and “…it was good to go back over things”. Another respondent remembered the

task as “…a goal-focused instrument with questionnaire follow-up to see if these goals

have been achieved”. This respondent felt that the questions asked in the Resource Kit

assessment were relevant and were comprehensive.

Discussion

The primary objective of this project was to obtain consumer and clinician feedback on

the usefulness of the Chronic Stroke Resource Kit, including the comprehensive review

assessment embedded in the tool. With regard to the assessment, the results of the

study support the value of this assessment, with stroke survivors finding the experience

to be worthwhile and that the domains included in the assessment were important to

them. Similarly, clinicians also agreed that the Resource Kit was useful and they would

recommend it to other clinicians. Clinicians indicated that the review assessment

focused attention on areas of importance to the stroke survivor and identified areas that

may not have been followed up in previous assessments.

The main areas of focus within the Resource Kit include the high incidence of

depression, the difficulties experienced by stroke survivors in returning to valued

activities and the importance of individualised goal setting. Prior to using the Resource

Kit, clinicians indicated a lower level of confidence in exploring alterations in mood,

compared to other domains of the Resource Kit, with an increased rate of confidence

following utilisation of the Resource Kit. A similar pattern was observed for exploring

participation in valued activities with clients, with improvements in confidence

following use of the Resource Kit. Clinicians had high levels of confidence in their ability

to explore meaningful goals with clients, prior to and following use of the Resource Kit,

and this perhaps reflected the current strong focus on this area of practice in

community care.

Several areas were identified in the study as limitations to the Resource Kit in it’s

current form. Of particular interest is the focus on emotional changes after stroke and

the impact of this on families of stroke survivors. Another main theme was the need for

services to help stroke survivors and families cope with such a major change in their life;

with access to counselling specifically identified and also self management programs,

support groups and stroke education programs. These later aspects were not included

in the original version of the Resource Kit due to a number of studies being concurrently

conducted utilising these interventions. The updated version of the Resource Kit should

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include a comprehensive review of strategies to assist with coping. Other areas

identified as gaps in the Resource Kit include community access and sexuality.

Some clinicians noted that the review assessment may duplicate some already existing

assessment tools utilised at their sites. It may be that the Resource Kit tool should be

used to supplement current assessments in these settings to prevent stroke survivors

from having to participate in repeated assessments. Alternatively, the more targeted

and comprehensive assessment in the Resource Kit could replace the standard initial

assessment for stroke survivors. While the assessment tool in the Resource Kit has

overlap with other tools, particularly those developed for the care of the older person

[11], there is benefit in having condition specific tools. Some assessment components

are specifically targeted at the needs of stroke survivors and the evidence for

interventions and management is condition specific. Ideally, the review assessment

embedded in the Resource Kit would form the first assessment when a person with

chronic stroke is referred to a community service. One clinician participant suggested

that the Resource Kit be used annually as survivor needs may change. This is certainly

the view of the investigators involved in the development of the Resource Kit and is

consistent with National Stroke Foundation guidelines [8].

The study results did not indicate an increased uptake of evidence based interventions

and management plans, with a general decrease observed in rehabilitation

interventions between the two week and eight week assessments. Forty-one percent of

stroke survivors were receiving physiotherapy and/or occupational therapy prior to

participating in the review assessment. These stroke survivors were likely to be already

engaged in a comprehensive rehabilitation program, with less potential to add

interventions. In addition, 28% of stroke survivors indicated that they were not able to

access services they required, including counselling and support, rehabilitation and

physiotherapy for longer durations and hydrotherapy. Further investigations need to be

conducted to identify the level of need for interventions in chronic stroke survivors and

access to appropriate services.

Limitations to the study include the sample recruited as a representation of the

population of people with chronic stroke. All stroke survivor participants were within 2

years post stroke, with a median of 9 months and many were already receiving

comprehensive rehabilitation prior to recruitment. Stroke survivors at a later stage

post stroke are not represented in this sample. The sample was also characterised by

younger age (mean age of 60 years) and a predominance of males (63%). A large

number of stroke survivor participants had incomplete data, particularly data acquired

at the eight week point.

The study protocols included a postal survey for stroke survivors, however, this was felt

to be difficult for many of the participants to complete. Clinicians were given the option

of conducting the survey by phone or in person, if this was deemed necessary and was

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feasible within resource capabilities. This decision was made to facilitate involvement of

people with cognitive and communication disabilities or difficulty with hand writing

commonly observed post stroke, to gather the viewpoints of those who may not have

been included if support was not available to complete questionnaires. However,

participants may have given more positive responses to questions because of their

relationship with the clinician. We also sought to gather carer perspectives, however,

very little data was received from carers. Future studies should consider using clinicians

not involved in the care of the person to collect data, while still providing support and

guidance to those who require it to participate. Strategies to increase carer responses

should be investigated.

With regard to clinician participation in the study, twelve clinicians responded to the

final survey. The number of clinicians who were involved in delivering the assessments

at the eight centres is unknown, so the response rate can’t be calculated. There is a

possibility that clinicians who found the Resource Kit less useful didn’t respond to the

survey. It should also be noted that all of the sites volunteered to participate, without

financial recompense, indicating that the clinicians at these sites already had a

commitment to improving care for chronic stroke survivors. The views of the clinicians

from these sites may not be representative of other clinicians working in community

settings.

Considering barriers and enablers for this project, a difficult aspect to the project was

the varying response of the Ethics Committees at the sites. The project was accepted as

a quality assurance activity at the host site SVHM on the basis that the purpose of the

project was to enhance evidence based practice through provision of information

regarding current evidence and structured formats to improve assessment processes.

Informed consent was obtained from stroke survivor participants and implied consent

was utilised for clinicians participating in the anonymous questionnaires. However,

three potential sites required full ethical review of the proposal, adding a considerable

delay to commencement, with only two of these sites commencing data collection. The

primary enabler to the project was the interest in the study from the clinicians and their

commitment to data collection over a prolonged period of time, adding an extra

component to their workloads.

Most of the stroke survivors in the study were in the first year post stroke, with no

participants more than two years post stroke. It is notable that only one service reached

the goal of recruiting ten people to the study, despite a six month extension of the

timeframe for data collection. Reports from the centres indicated that there were few

clients with chronic stroke attending, making it difficult to recruit to the study. Given

the large numbers of people living with chronic stroke in our community, with high

levels of remediable conditions such as depression and low levels of community

participation, it is disappointing to find that few stroke survivors are accessing the

expertise in these sites beyond the subacute phase post stroke. It is important that

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barriers to people with chronic stroke accessing services are identified. The high level of

unmet need in stroke survivors has been clearly identified by Andrew et al (2014) [5].

Future studies investigating methods to improve access to evidence based interventions

in chronic stroke should focus on stroke survivors with ongoing disability, who are

more than two years post stroke and are not linked in to community rehabilitation or

community health services.

Conclusion The pilot implementation of the Chronic Stroke Resource Kit has provided evidence that

clinicians working in community settings are supportive of the introduction of the Kit

and would recommend it to their colleagues. The comprehensive review assessment

embedded in the Resource Kit was utilised for stroke survivor participants and

clinicians reported that this often led to a change in focus for ongoing care. Stroke

survivor participants reported that taking part in the comprehensive review

assessment was worthwhile, and the assessment covered domains of interest that were

relevant for them. Clinicians reported improved confidence in exploring alterations in

mood and participation in valued activities with stroke survivors following the

introduction of the Resource Kit.

Areas identified for further development of the Resource Kit include emotional changes

after stroke, adjustment to major life changes, community access to services and a

greater focus on sexuality and intimacy. The pilot implementation did not show

increased uptake of evidence based interventions provided by community services .

Further research needs to be directed towards stroke survivors who are not currently

utilising community based services, to identify the evidence based interventions that

they may benefit from, and processes for improving access to community based services.

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