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RESEARCH ARTICLE

Upper limb recovery after stroke: The stroke survivors’ perspective

R.N. BARKER & S.G. BRAUER

Division of Physiotherapy, School of Health & Rehabilitation Sciences, University of Queensland, Brisbane, Queensland,

Australia

Accepted February 2005

AbstractPurpose. This study investigated stroke survivors’ perspective of upper limb recovery after stroke. The aim was to determinefactors other than medical diagnosis and co-morbidities that contribute to recovery. The objectives were to explore howstroke survivors define recovery, identify factors they believe influence recovery and determine strategies used to maximizeupper limb recovery.Method. A qualitative study consisting of three focus groups and two in-depth interviews was conducted with strokesurvivors (n = 19) and spouses (n = 9) in metropolitan, regional and rural Queensland, Australia. Data were analysed usingprinciples of grounded theory.Results. Stroke survivors maximize upper limb recovery by ‘keeping the door open’ a process of continuing to hope for andwork towards improvement amidst adjusting to life with stroke. They achieve this by ‘hanging in there’, ‘drawing on supportfrom others’, ‘getting going and keeping going with exercise’, and ‘finding out how to keep moving ahead’.Conclusions. This study provides valuable insight into the personal experience of upper limb recovery after stroke. Ithighlights the need to develop training strategies that match the needs and aspirations of stroke survivors and that place notime limits on recovery. It reinforces the benefits of stroke support groups and advocates their incorporation into strokerecovery services. These findings can be used to guide both the development and evaluation of stroke survivor centred upperlimb training programmes.

Keywords: Stroke survivors’ perspective, upper limb, recovery

Background

Upper limb recovery after stroke is unacceptably

poor with only 50% of stroke survivors likely to

regain some functional use [1] compared with 82%

who could expect to walk independently again [2].

This disparity has been attributed to minimal time

spent on the upper limb during rehabilitation [3], the

lack of spontaneous use of the arm for function and

the complexity of upper limb function necessitating

greater recovery of motor control to achieve function

[4]. Although allocation of stroke recovery services

have been traditionally based on the belief that

recovery occurs within the first three months and is

complete by twelve months [5], further improvement

has been shown to occur with intervention beyond

that period [6,7].

Any attempts to improve upper limb recovery after

stroke across the population must be investigated

within the context of the current health climate. Over

the last decade an increasing number of people are

surviving stroke but with rising levels of disability [8].

Greater demand is being placed on rehabilitation

services at a time when cost containment is leading to

reduction in hospital length of stay. With time

available for upper limb training rapidly diminishing,

the search for effective and efficient strategies to

maximize upper limb recovery has become more

pressing.

As the first step, consideration must be given

to factors known to contribute to recovery.

Previous studies have shown that the site and

severity of the lesion [9] and the impact of co-

morbidities [10] is associated with recovery of the

Correspondence: Ruth Barker, Division of Physiotherapy, School of Health and Rehabilitation Sciences, University of Queensland, Qld 4072, Australia.

Tel: 61 7 33652275; Fax: 61 7 33652775. E-mail: [email protected]

Disability and Rehabilitation, 2005; 27(20): 1213 – 1223

ISSN 0963-8288 print/ISSN 1464-5165 online ª 2005 Taylor & Francis

DOI: 10.1080/09638280500075717

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arm and hand after stroke. Upper limb training

programmes involving intensive and repetitive task

related practice [7,11] have been shown to

improve recovery. What has not been investigated

is the extent to which stroke survivors want to or

are able to use these interventions [12] that

demand time, energy and long-term commitment.

With no studies on upper limb recovery from

stroke survivors’ point of view, little is known

about what upper limb deficits mean to indivi-

dual stroke survivors, or their differing beliefs and

behaviours with regards to upper limb recovery.

Clearly the perspective of stroke survivors is

essential in building a comprehensive framework

to promote upper limb recovery and in ensuring

adherence to demanding rehabilitation routines.

This study arose out of the belief that stroke

survivors had a story to tell and that much could

be learnt from their experience. Explanations as

to why some individuals experience an unexpect-

edly good recovery compared with others could

reveal mechanisms used by stroke survivors to

enhance recovery. Stroke survivors views on

current health service provision could provide

insight into why some aspects of rehabilitation are

more acceptable than others and highlight a

broader range of issues that need to be con-

sidered in planning of services [13]. Their

experience of transitions of care from the acute

admission through rehabilitation, discharge and

cessation of services may assist in anticipating

needs and tailoring services to meet them [14].

Stroke survivors’ perspective casts light on long-

term recovery to which rehabilitation staff are

rarely exposed and to which scant attention is

given in the literature [15]. Ultimately, training

programmes developed will apply to stroke

survivors, and will most likely require them to

adopt new practices and take on new responsi-

bilities [16] as well as greater responsibility as

demand for services increases. Their continued

participation is essential to ensure strategies

developed will be acceptable, relevant and acces-

sible to stroke survivors within the context of

their lives.

In an effort to provide fresh insights and a new

perspective for the development and delivery of

effective training strategies, this paper reports the

results of a qualitative study investigating stroke

survivor’s perspective on upper limb recovery. The

aim of the study was to determine factors other than

medical diagnosis and co-morbidities that contribute

to recovery of the upper limb after stroke. The

objectives were to explore how stroke survivors

define recovery, identify factors they believe influ-

ence recovery and lastly, determine strategies used to

maximize upper limb recovery.

Methodology

A qualitative research design was chosen for this

study. Three focus groups (n = 19 stroke survivors +

9 spouses) and two in-depth interviews (n = 2 stroke

survivors) were used to gather the raw data over a six

month period. The data were collected, analysed and

compared with the literature using principles of

grounded theory [17] for the purpose of gaining

insight, not to generate theory.

The nature of the research question and the

decision to collaborate with two stroke groups,

determined the method. Principles of grounded

theory were considered most appropriate for explor-

ing the experience from stroke survivors’ point of

view and for discovering the methods used by them

to promote recovery. Face to face forums were

preferred as a more natural setting for conversation

with the advantage that non-verbal and spontaneous

reactions of participants are witnessed. Focus group

interviews were used to collect information from

various points of view and to take advantage of the

richness of group data. In-depth interviews were

used to complement this method by providing more

personal and individual responses that would not be

influenced by the group or could not be drawn out in

a group, due to the personal nature or lack of

approval from the group. They also offered the

opportunity to address or challenge issues or points

that had either not been mentioned or not discussed

in sufficient depth. The number of focus groups and

in-depth interviews conducted was determined by

saturation of data, deemed to be the point where

nothing more was added to enhance or distinguish

emerging concepts.

Sampling process

Initial sampling was purposive and self selected in an

attempt to include those from whom most could be

learnt and to ensure a wide range of opinions.

Participants had experienced stroke affecting the arm

from 3 months to 13 years previously. Following the

initial focus group interview, thematic sampling [17]

was used to broaden and challenge emerging

categories, with participants selected according to

rural, regional or metropolitan residence, self re-

ported good and bad recovery, functional level,

absence or presence of a spouse or carer, time since

stroke, arm affected, age and gender. Finally,

participants for two in-depth interviews were selected

on the basis of a self reported bad recovery of the arm

but not the leg and a good recovery of the arm, but

not the leg. The demographics of study participants

are summarized in Table I.

Participants were recruited using a network app-

roach via two stroke support groups in Queensland.

1214 R.N. Barker & S.G. Brauer

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Members were advised of the specific criteria for the

first and each subsequent interview as well as the

time, date and venue. Those members and others

known to them who fitted the criteria were invited to

attend. This method of recruitment led to all

participants being members of one of four stroke

support groups in Queensland. It also resulted in

attendance by not only those who had themselves

had a stroke but also by their spouse or partner,

particularly those with aphasia. Based on their belief

that as a couple they were stroke survivors and that

their differing perspectives and roles were both

critical in stroke recovery, no differentiation was

made between the views expressed. As the researcher

had worked as a physiotherapist with stroke survivors

in metropolitan, rural and remote areas of Australia

some members of both stroke support groups had

previous knowledge of the researcher. While this

could have led to reluctance to criticize it appeared to

enhance the contribution made with participants

holding the belief that the study offered real potential

for change.

Collection of data

Each focus group and in-depth interview was held on

one occasion in the homes of participants and

conducted by one researcher. The length varied with

earlier focus group interviews taking over ninety

minutes and the final in-depth interview taking only

thirty minutes. All interviews were taped once

consent had been given by all participants. A semi-

structured format based on a set of open ended

questions was developed to frame the information to

be gathered and to encourage participants to con-

tribute information in their own words. There was no

strict adherence to the style and type of questioning

beyond these four key questions with probes used to

follow or challenge themes that were emerging.

These questions are included in Table II.

Procedure for focus group and in-depth

interviews

Each focus group interview consisted of stroke

survivors as participants, the one researcher as group

leader and an experienced scribe who managed

taping of the session and took notes to record the

group dynamics and non-verbal language. Firstly,

the study purpose and process was explained and

interview questions distributed. Participants were

encouraged to immediately write down their an-

swers, to capture spontaneous responses and those

that had not yet been shaped by the group process.

Each participant was then invited to tell their

personal story of stroke and their reasons for

attending. This was designed to build rapport and

trust that individual experiences would be valued and

to allow presentation of information of particular

importance to participants. The questions specific to

the aims of the study followed with additional probes

used to ensure reflection on their own experience

and that of others with whom they had come in

contact. All interviews were drawn to a close with the

group leader summing up the discussion and asking

each participant to add to or dispute what had been

Table I. Demographics of study participants.

ID Interview Age* Years** Since Stroke Gender Location Arm affected Arm function Spouse present

1 Focus group 1 66 3.5 M Rural L Nil + spouse

2 Focus group 1 67 1.5 M Rural R Nil + spouse

3 Focus group 1 75 2.5 M Rural L Nil + spouse

4 Focus group 1 55 7 M Rural R Nil + spouse

5 Focus group 1 71 10 M Rural R Nil + spouse

6 Focus group 1 72 10 M Rural R Some + spouse

7 Focus group 1 61 6 M Rural L Nil + spouse

8 Focus group 2 79 4.5 F Regional L Functional

9 Focus group 2 71 13 F Regional L Functional

10 Focus group 2 71 2.5 F Regional R Nil + spouse

11 Focus group 3 59 3 M Metro L Functional

12 Focus group 3 54 4.5 F Metro L Nil

13 Focus group 3 59 5 M Metro L Functional + spouse

14 Focus group 3 42 4.5 M Metro R Some

15 Focus group 3 62 1.5 M Metro R Some

16 Focus group 3 62 6.5 M Metro L Functional

17 Focus group 3 42 4 F Metro L Some

18 In-depth 61 3 F Metro L Nil

19 In-depth 82 .4 F Metro L Functional

*Mean age * 64 yrs, age range 42 – 82 yrs.

**Mean time since stroke* 4.9 yrs, range 3 months – 13 yrs.

Stroke survivors’ perspective on recovery 1215

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said and add his or her final comments. Written

responses to the focus group questions were col-

lected and included as data. The group leader and

scribe debriefed after the session documenting what

might be considered the ‘group data’.

In each focus group, participants consistently

encouraged each other to share their unique story,

showing respect and sensitivity particularly when the

personal impact of the experience resulted in

expression of strong emotions. However concern

for the feelings of others could limit the depth of

discussion particularly with regards to the attitudes

and behaviour of those with a good recovery

compared with those with a bad recovery. For this

reason the in-depth interviews provided the oppor-

tunity to gain greater depth in this regard.

The same order and content was used to conduct

the in-depth interviews but with less structure

imposed on the interview. Participants were encour-

aged to talk with questions raised only when a

particular aspect was not covered or clarification was

required. Consistent with the purpose of the inter-

view, probes were more personal and often related to

the interviewee and others known to them.

Ethical approval was obtained from the University

of Queensland Behavioural and Social Sciences

Ethical Review Committee. All participants con-

sented to taping of interviews, having been informed

in writing and verbally that all tapes would be

transcribed verbatim and that confidentiality in

reporting of study findings was assured.

Data analysis

Analysis occurred continuously throughout the

study. During data collection, naı̈ve interpretation

followed immediately after each interview to ensure

that what had been learnt could be used to extend

questioning, seek further clarification or challenge in

the following interview. Once all data were collected

and tapes transcribed verbatim, focus groups and

interview transcripts were explored by a process of

reading and re-reading. On the first reading tran-

scripts were read in their entirety to acquire a sense

of the whole. On the second reading, using line by

line analysis, themes, patterns or concepts were

identified and listed, being mindful of core themes or

patterns emerging. Those that predominated were

tentatively placed into four (4) conceptual categories.

The third reading involved returning to the data to

check the ‘fit’ of the categories, pursuing patterns

both consistent and inconsistent with the categories

defined. The original categories were modified to

more effectively represent or ‘fit’ the emergent

patterns in the data. The analysis then involved

specifying the properties of each category, noting the

conditions under which it arose, relating how it

changed, describing its consequences and ultimately

specifying its relationship to the other categories.

Finally, a core category was identified as the central

phenomenon underpinning, linking and integrating

the emergent categories and accounting for varia-

bility in the data.

Whilst limited attention was given to the literature

for the initial conception of the study, specific review

of the literature only occurred after commitment to

the categories and to the main analytical message, in

order to guard against preconceived categories or

ideas emerging from the literature. This review was

undertaken according to the four (4) categories and

the core category. As a result, concepts were not

borrowed from the literature, rather the categories

that emerged influenced the selection and ordering of

relevant literature. Concepts that appeared repeatedly

in the literature, were used to check the data to

discover whether or not they applied in this context.

In order to verify and extend the emerging

framework [18] member checking occurred through-

out the study. Due to the geographical spread of

study participants, the researcher reported back to

Table II. Focus group questions.

1. What is recovery?

Probes included: What is a good recovery? What is a bad recovery?

Think about someone who had a ‘good recovery’ and explain why.

Think about someone who has had a ‘bad recovery’ and explain why.

Do you consider yourself to have had a good or bad recovery and why?

2. What factors influence recovery?’

Probes included: How do you think we can influence recovery?

How can we enhance recovery? What are the obstacles to recovery?

How could your recovery have been better or worse? What can you do to influence your recovery? What can others do to influence your

recovery?

3. How do you think we can maximise recovery?

Probes included: How can we maximise recovery with the same resources we have now? How could we do it differently to get a better

result?


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participants when they were attending stroke group

meetings. This occurred on five occasions, twice with

each of the two main stroke groups and once in the

final stages, during a meeting with representatives of

both rural and metropolitan focus groups in atten-

dance. This led to small additions or modifications

to content at each stage as well as the renaming of

conceptual categories in the final stage, reinforcing

the personal rather than clinical nature of the

experience. During the period of analysis the

researcher also interacted extensively with stroke

survivors involved in a larger research project of

which this study was a part. Peer review was

undertaken with an experienced qualitative research-

er and coder checking with a novice researcher who

had an acquired disability. Over the length of the

study, findings were presented to clinical experts and

to a number of professional audiences.

Results

Upper limb recovery was viewed by participants as a

critical but neglected issue, with most participants

feeling the magnitude of their loss was poorly under-

stood or appreciated. Expressions of disappointment,

frustration and anger prevailed in this regard.

It’s a big deal to be able to use your arm again. I think most

of the doctors think it’s not. It’s a big deal to be able to use

your arm again psychologically as well physically.

Participants frequently spoke about the experience of

stroke in general, but expressed the enormous losses

associated with arm impairment, with many reduced

to tears during the discussion.

It would almost be easier if the arms came back. You could sit

in a wheelchair, at least you could do something. When the

leg comes back the only thing you learn to do is walk. But the

number of things you can do with an arm ..

Their definitions of recovery were often intensely

personal, conveying sentiments such as a sense of

hope, a familiar identity, valued activities and lifestyle

choices. When asked individually what recovery

meant to them, participant’s responses varied con-

siderably as is evident in the following examples.

. . .some hope for recovery. . . a sign at least to say recovery

was possible . . .. . .

. . .this was the hand that worked all the time and it

doesn’t respond. I was a right-handed man. What I have to

do is control that hand . . .. . .

. . .become independent and that summarises it . . . . you

don’t want to be a burden

. . .some use . . . to hold something . . ...I just want to hold

the nail and hammer it in . . .you have to have two

hands. . .. . .woodwork . . . in the shed . . .

A bad recovery was to lose hope, forget about

even trying to use the arm and to find no way

around or substitute for what had been lost. A

good recovery was to have some return of

movement and feeling, use of the hand, to do

what you want to do and to get on with your life

again, believing there could always be further

improvement. Interestingly, participants believed

recovery only came to an end if the stroke

survivor ‘gave up’.

Keeping the door open

The core conceptual category, identified as the key

process used by stroke survivors to maximise upper

limb recovery, is described as ‘keeping the door

open’, a process of ‘continuing along in life hoping

for and working towards improvement’. Participants

emphasized the importance of not placing time limits

on recovery, and of remaining open to future

possibilities, better services, more answers or further

spontaneous recovery. They frequently supported

this optimistic and open ended approach by citing

their own or others experience of progress many

years after stroke.

Even years later things are still changing as long as you

haven’t accepted this is all over.

Participants highlighted the reality of striving for

recovery amidst adjusting to the stroke event and

stroke consequences, navigating rehabilitation

services while getting back on with their life

again as the consequences of stroke endure.

Efforts were directed at not only ‘keeping the

door open’ but also preventing it from closing

against the pressure of others, such as doctors

who may insist there is no hope, or from within

themselves, such as a sense of hopelessness.

While this sometimes required the stroke survi-

vor to be a ‘maverick’, at other times or in

other cases, a gentler approach was needed

whereby keeping an open mind and a flexible

arm allowed future recovery to remain a

possibility.

Overall, the processes used by stroke survivors in

‘keeping the door open’ are described as ‘hanging in

there’, ‘drawing on support’, ‘getting going and

keeping going with exercise’ and ‘finding out how to

keep moving ahead’. As the four conceptual cate-

gories which emerged from the data, these processes

are interrelated and frequently occur simultaneously

(Figure 1).


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Hanging in there

The expression ‘hanging in there’ was used by

participants to accentuate the personal commitment

required to persist and not give up. The importance

of keeping hope alive and maintaining a strong

reason to recover was highlighted.

. . .It’s what comes from inside. What you bring out of

yourself.

. . .You have to take responsibility for yourself, you have

got to work at it. Don’t ever give up.

The constant reminder of the losses and the

frustration of repeated failure overwhelmed those

with severe paresis. Not knowing what to do or

how to get help eroded the will to continue.

Feeling scared of doing harm especially where pain

was present led to a loss of confidence to ‘have a

go’. Depression commonly overcame them, allow-

ing hope for recovery to fade. Negative or

dismissive attitudes from others created or con-

founded the desire to ‘give up’. Alternatively, this

fired the motivation of others who used such an

attitude as a driving force to recover, just to prove

them wrong.

Because that doctor knocked me so far down with what she

said I fought her, not me.

Maintaining hope and a sense of humour and being

surrounded by others who were positive and

encouraging helped to overcome obstacles. Many

advocated setting small goals to ensure small

successes could be celebrated along the way.

. . . you can’t look from nothing to everything you have to

take it step by step. As each piece comes back you practise

until you have encouragement to try something else.

Figure 1. Processes used by stroke survivors to maximise upper limb recovery.


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One stroke group routinely reported successes

during their meetings so that individuals were

acknowledged for their achievement, others were

encouraged and the whole group celebrated.

Hanging in there through the highs and the lows,

often with support from others, provided the stability

necessary for getting going and keeping going with

exercise and the impetus for finding out how to keep

moving ahead.

Drawing on support from others

Participants believed they could not hang in there

and achieve a good recovery of their arm without

support from others. This included their spouse,

family, friends and community, other stroke survi-

vors and health professionals who together provided

physical, emotional and social support.

Support has been the biggest thing for me. I come to the stroke

group, I don’t have to try to explain what happened .. they

have been there and done that. If I have a problem I can talk

to anyone of these carers and they know where I am coming

from and even if they can’t help me at least I know they

understand.

A number of participants were unable to imagine

how recovery was possible for those who did not have

a spouse. In contrast, some who were on their own

felt they were forced to do more for themselves and

fared better than those whose spouse was fearful and

did too much or pushed too much. As with all

participants, they looked to the stroke group for

support, appreciating the camaraderie, humour and

information that was shared, as well as the benefits of

both giving and receiving support. However, indivi-

duals who would not help themselves could be seen

as a burden to the group.

Participants also looked to health professionals for

support, believing they had the knowledge, authority

and responsibility for promoting recovery of their

arm. The ‘therapy’, the training, guidance and the

encouragement provided were frequently credited

with the positive outcomes made.

. . ..The rehab is critical. If you haven’t got it to start with

you don’t know where you are going. Those are the people

who sort of set you up and get you going.

. . ..The courage the physiotherapist gave me is what I

needed. That he had faith in me.

Conversely, many resented the attitude of health

professionals and the power of their predictions.

Being told they would never use their arm again

shattered hopes and often limited or precluded them

from therapy, leaving them feeling disadvantaged or

abandoned. Rather than accepting negative predic-

tions, many strongly advised not to listen to health

professionals because ‘they are not always right’.

Working hard was seen as a way of making it easier

and worthwhile for therapists to be supportive. Being

proactive in seeking support was advocated including

‘knocking on doors’ or seeking complementary

health medicines once traditional avenues were

exhausted.

Stroke survivors drew on the support of others so

that they were able to hang in there, gain help with

getting going and keeping going with exercise and as

a source of information on how to keep moving

ahead.

Getting going and keeping going with exercise

Exercising was seen as the means to physical

recovery. Emphasis was placed on starting soon after

stroke onset, practicing regularly, intensively, appro-

priately and continually and using the arm in

everyday tasks. To not exercise was to do nothing

and without exercise recovery would not occur.

If you sit in a chair and do nothing you definitely won’t

improve. There is no might about it you definitely won’t. At

least doing something you’ve got a sporting change of it

having an effect.

However many participants did not exercise in the

manner advocated. Although most persisted with

some form of stretching, they felt they did not know

how to exercise or how to progress, a fact they

attributed to insufficient attention to the arm during

rehabilitation. Many also believed they did not have

enough movement to work with and therefore had

nothing they could do to practise.

. . ..I have got no use so I can’t improve what I’ve got if I

haven’t got anything.

A question repeatedly posed was whether the arm

would have recovered as well as the leg, had it been

‘worked on’ in the same manner as the leg. Many felt

that in the beginning they had no movement in either

their leg or arm, but that extreme effort was used to

get the leg going and to start walking. This was not

the case with the arm. Consistent with this reasoning,

the final interview participant believed her arm was

better than her leg because it had been ‘worked on

from the start’ while she was immediately assigned to

a wheelchair on what proved to be a faulty assump-

tion that she would never walk again.

While a few participants found some therapists

‘useless’, all believed access to suitably skilled

therapy services could help them to get going with

exercise. However, keeping going with exercise was


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also recognized as an issue that needed to be

addressed. Therapists teaching stroke survivors how

to exercise independently and how to progress was

seen as a priority. Yet even with the best knowledge,

maintaining the motivation to exercise over a long

period of time was highlighted as a problem.

. . .Its difficult to remain positive and willing to do the

exercises everyday. It really takes a lot of dedication and

determination. . .. because other things come into play.

Participants agreed that attendance at therapy, one to

one or in classes, helped maintain the motivation to

keep going. While some incorporated practice into

everyday tasks, it was recognized as a strategy not

available to those with severe paresis.

. . .Once I got home all the exercises they had been showing

me were so damn boring I tried incorporating the exercises

into the daily things I did so that . . .they became extensions of

the exercises. So they were happening whether I wanted them

to happen or not.

Participants were in no doubt that ‘getting going and

keeping going with exercise’ was the physical means

to keeping the door open for recovery. Achieving this

was dependent on their ability to persist, on support

from others for encouragement, as well as therapy

and advice on how to get started and how to

progress.

Finding out how to keep moving ahead

This involved pursuing information and guidance,

with emphasis on demonstration and feedback.

Participants believed that professionals working

within rehabilitation services were the most qualified

to provide this. However in practice, other stroke

survivors and the stroke support groups had played

this role. Participants who felt confident in moving

ahead attributed it to their sense of responsibility and

the teaching and encouragement of therapists at

some point along the way. Equally important was the

knowledge that the ‘door was open’ for them to

return to a rehabilitation service for feedback and

further guidance when they needed it.

They give you feedback. And that’s what you need. You need

that feedback. I myself I am striving to get better and better

all the time but you need their help.

In contrast, most participants felt ill equipped to

continue moving ahead. It was common to have

difficulty understanding and remembering informa-

tion given in the early stages, to find little relevance

in the information they were given and to experience

frustration over failed attempts to acquire help when

they needed it. Not being able to access services

beyond a prescribed period or over a certain quota

was a barrier. Those from a rural area felt the lack of

services with any expertise in stroke recovery was a

major disadvantage. Written material in the book-

shop, library or via the internet was found to be

sparse and inadequate for their needs.

Participants recommended upper limb training

based on a self-help principle with spouses or carers

involved at least until the stroke survivor could

absorb the information they needed. Traditional one

to one therapy was valued, as were group-training

sessions particularly if held within their stroke group

environment. Other resources such as stroke survivor

friendly pamphlets, books, videos and websites were

considered necessary to consolidate and broaden

their understanding. Rather than receiving all ser-

vices in the earlier stages of recovery, participants

believed a more staggered arrangement would allow

them to access information and guidance when they

were ready and as it became relevant to them in their

life. An annual review by a visiting team of stroke

experts was requested for the stroke survivor and

carer from a rural area.

By finding out how to keep moving ahead stroke

survivors were able to continue working for recovery.

This involved drawing on the support of others to

gain the necessary information and guidance that

would help to build the confidence to hang in there

and keep going with exercise. In this way, partici-

pants reinforced that together, these processes

enabled the stroke survivor to keep the door open

for recovery.

Discussion

This study explores stroke survivors’ perspective on

upper limb recovery and the strategies believed to

maximize recovery. It provides a retrospective view

of stroke survivors with 3 months to 13 years

experience living with stroke. The findings portray

an optimistic open ended approach to upper limb

recovery that presumes the value of the stroke

survivor’s contribution to their own recovery and

explores the potential for more meaningful interac-

tion with stroke recovery services to enhance upper

limb recovery.

The outcomes of this study offer new and valuable

insight into upper limb recovery after stroke that has

implications for stroke recovery services. However

methodological limitations need to be considered to

place the findings within proper perspective. Firstly,

as all study participants volunteered to attend and

were members of stroke support groups, the findings

may reflect the views of those for whom upper limb

recovery is a priority, the views that result from

attendance at a stroke group or the views of the type


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of person who chooses to attend a stroke group.

Stroke survivors who can not or did not choose to

attend a stroke support group or for whom upper

limb recovery is not a priority may have had different

views. Not to be forgotten however, is that as

members of stroke support groups with experience

of a variety of rehabilitation services across both

metropolitan and rural areas, participants’ contribu-

tion will have been influenced by not only their own

recovery, but also the recovery of a large number of

other stroke survivors with whom they have inter-

acted. In addition, a follow-up study has been

conducted with a larger and more representative

sample of stroke survivors.

Secondly, the interpretation will have been influ-

enced by the background and perspective of both the

researchers and stroke survivors who volunteered to

participate. The researchers had witnessed stroke

survivors who had made unexpected recoveries,

regardless of the services received, leading to the

belief that personal factors have a role in recovery.

Collaboration on this study came about because of a

shared belief that stroke survivors had much to

contribute and that the potential for upper limb

recovery had not yet been exploited. The researchers

believe that this led to a positive outlook within each

interview, rigorous questioning by the researchers

and open, honest and forthright opinions from

participants.

As with previous studies, the stroke survivors in

this sample defined recovery according to ‘what

matters to them’ and that frequently this was not

what mattered to health professionals [19 – 21].

Similarly, the stressors and challenges involved in

pursuing recovery were mediated by the process of

adjusting to life with stroke and the persistence of the

consequences of stroke into future life [22]. In this

study, stroke survivors attempted to maximise upper

limb recovery by ‘keeping the door open’ a process

that allowed them to continue in life hoping for and

working towards improvement while remaining open

to future possibilities. This involved ‘hanging in

there’, ‘drawing on support of others’, ‘getting going

and keeping going with exercise’ and ‘finding out

how to keep moving ahead’. It is important to note

that these practices existed on a continuum with

some people engaging in them more consistently

than others, an important consideration given the

heterogeneous nature of stroke, stroke survivors and

their experience of upper limb recovery.

This view of recovery differs from previous studies

which have looked at stroke recovery in general,

within the first two years after stroke. Some studies

have described a recovery path with an endpoint

where personal goals were achieved [23] or con-

versely when nothing more could be done [21].

Others reported a long term view of recovery,

identifying a recovery path [24] or trajectory [19]

that did not have an endpoint. While the findings of

this study are similar to this latter view, emphasis is

placed on recovery as part of life’s path, whereby

recovery is incorporated into stroke survivors lives,

rather than a distinct recovery path. As participants

were members of stroke groups with up to 13 years

experience, this may represent a view of recovery that

has evolved over time and become part of a stroke

group ethos that is embraced by newcomers. It may

also reflect the unique experience of upper limb

recovery where priority is often only given after some

adjustment to stroke and resumption of life has

occurred.

Clearly, the processes used to keep the door open

for recovery echo a self-management and self-

improvement approach, specifically tailored to pro-

gression. Based on the goals and aspirations of stroke

survivors, attention is given to the psychological,

social, emotional, physical and educational require-

ments to achieve these goals. While this perspective

represents those who chose to attend a stroke

support group or self help group, it highlights the

value of stroke support groups as a positive mechan-

ism for promoting recovery, through which existing

services could work.

What is most striking about the findings of this and

previous studies [19,21,25] is the mismatch between

stroke survivors’ view and their experience of stroke

recovery services. Rather than a long-term view with

no time limit placed on recovery, the services they

received reflect an historical viewpoint that recovery

occurs within a finite period. Emphasis on mobility

seemed to represent rehabilitation priorities devel-

oped prior to the advent of motorized wheelchairs,

mechanical hoists and disabled access that have

enabled greater inclusion in the community. Even

though intensive and repetitive task related practice

is known to promote upper limb recovery, incon-

sistent attention was given to the upper limb during

rehabilitation. The inequity in intensity of exercise

for the upper limb compared with the lower limb

appeared to leave stroke survivors with the sense that

their potential for upper limb recovery had not really

been explored. The difficulties participants experi-

enced in ‘finding out how to keep moving ahead’ is

likely to also reflect the belief that recovery occurs

within a finite period as well as the inability of shorter

term services to address changing needs and goals as

recovery progresses.

Clinical implications for upper limb training

This perspective of upper limb recovery provides

some insight into the experience of upper limb

recovery and an appreciation of the processes used

by stroke survivors to maximize recovery. In an effort


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to support stroke survivors in their endeavour, the

outcomes of this study highlight the need to match

services to the individual aspirations of stroke

survivors and to assist them to continue working

for recovery amidst adjusting to life with stroke.

Keeping the door open for recovery implies

removing time limits placed on recovery by health

professionals and stroke rehabilitation services [26]

as well as providing services to promote recovery

from stroke onset until life ends, as previously

suggested [19,23,27]. Accommodating the obvious

budgetary limitations will no doubt demand

creative solutions such as an annual quota of services

that can be accessed by stroke survivors when

difficulties are encountered or further direction

required. A variety of services could address not

only the varying stages of recovery but also the needs

of individuals. In particular, the provision of an

annual review by an expert stroke recovery team is

indicated.

Ideally service delivery would benefit from a self-

management and self improvement approach that

would prepare and guide stroke survivors through

the psychological, social, physical and educational

demands for recovery. Staged self-management

training programmes and user friendly information

resources that interface with mainstream rehabilita-

tion services could reinforce and extend the lessons

learnt.

In an effort to thoroughly explore the potential for

upper limb recovery, therapy services need to

consistently implement upper limb training in a

manner shown to promote recovery and of similar

intensity as applied to the lower limb. In the face of

severe upper limb paresis and the difficulties

associated with compliance to exercise in the long

term, new and innovative interventions and services

may be required.

Finally, the benefits of stroke support groups need

to be explored and perhaps formally incorporated

into stroke recovery services. These findings suggest

they offer a tangible resource for support of more

recent stroke survivors as well as a discreet group that

existing services could work with to help maximize

recovery in the long term.

Conclusion

This stroke survivors’ perspective on upper limb

recovery highlights a long-term view of recovery

described as ‘keeping the door open’. To achieve

this, stroke survivors are involved in ‘hanging in

there’ while ‘drawing on support from others’,

‘getting going and keeping going with exercise’ and

‘finding out how to keep moving ahead’. In order to

support stroke survivors in this endeavour, the

findings of this study can be used to guide the

development and delivery of upper limb training

programmes.

Acknowledgements

We would like to acknowledge support given to this

project by the members and friends of the Lockyer

Valley Stroke Support Group and the Acacia Ridge

Young Stroke Group who participated in the focus

group and in-depth interviews and provided feed-

back on the analysis as it proceeded. Not to be

forgotten is Miriam Trevis, the group scribe and

observer who provided her valuable skills during data

collection and transcription of tapes. We are grateful

for the financial support provided by the Toowoom-

ba Hospital Foundation with the award of the 2001

Infront Outback Research Grant and to the War

Widows Guild Queensland Inc., for the award of the

Jessie Mary Vasey Scholarship. Thanks also go to Dr

Alun Williams for assistance in project planning, Dr

Samantha Bursnall, Dr Glenys Carlson and Scott

Kenny for their assistance and advice during data

analysis and Dr Pim Kuipers, Liz Logan and Toby

Gill for helpful comments and editing in the final

stages.

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