RESEARCH PAPER

The impact of fatigue on communication in multiple sclerosis.The insider’s perspective

B. E. BLANEY1 & A. LOWE-STRONG2

1School of Health Sciences and 2Health and Rehabilitation Sciences Research Institute, University of Ulster, Belfast, UK

Accepted December 2007

AbstractPurpose. The aim of this study was to investigate the relationship between fatigue and communication in people with MS.Method. A phenomenological approach was used in in-depth interviews with 10 people with MS to gain insight into thelived experience of the interaction between MS fatigue and communication. Themes were derived from inductive analysis ofverbatim transcripts of the interviews.Results. Participants framed their observations around three major themes. In the first ‘revealing communication changes’an increase in the severity of communication symptoms and the onset of new communications symptoms when experiencingfatigue were reported. In the second ‘concealing and coping’ a range of covert and overt strategies employed to managefatigue and communication changes were described. Finally the complex interplay between symptoms of fatigue andcommunication, strategies employed to manage these symptoms and societal attitudes was reported in ‘barriers toparticipation’.Conclusions. Fatigue impacts on communication impairment, activity and participation. Self reports have an important roleto play in clinical assessment of fatigue and communication in MS. Multidisciplinary team input is vital for the effectivemanagement of clients with MS fatigue and communication change. Further research into the impact of fatigue on differentaspects of communication is required.

Keywords: Multiple sclerosis, fatigue, communication

Introduction

Multiple sclerosis (MS) is a demyelinating disease of

the central nervous system; between 52,000 and

62,000 people in total are estimated to live with MS

in England and Wales [1]. There is currently no cure

for MS and the life expectancy for the majority of

people with MS is not affected by this diagnosis [1].

Thus people with MS live with and manage their

symptoms for life.

Although speech disorder was included in the

original triad of symptoms identified by Charcot in

1877 [2], the communication impairments asso-

ciated with MS have only in more recent years

received detailed research attention. Dysarthria (a

motor speech impairment) is the most commonly

reported communication disorder affecting people

with MS [3], with reported prevalence varying

between 40% and 55% [3 – 6]. Reports vary regard-

ing the presence or absence of language disturbances

in MS. This may relate in part to the sensitivity of the

assessment batteries used to assess language dis-

turbance in MS [7]. Research has shown that with

sensitive assessment batteries some individuals with

MS do exhibit language difficulties such as naming

or providing definitions of words as well as difficul-

ties with cognitive communication tasks such as

problem solving or abstract reasoning [7 – 10].

In 1984, Freal et al. [11] published a seminal

article which drew attention to fatigue in MS,

indicating that 78% of their subjects reported

experiencing this symptom. Fatigue in MS differs

qualitatively and quantitatively from fatigue experi-

enced by healthy people. MS fatigue is usually

experienced daily, lasts up to six hours and worsens

in the afternoon [11]. It is a complex and subjective

symptom, described differently by individuals with

MS. This complexity is reflected in the plethora of

Correspondence: Dr Bronagh E. Blaney, School of Health Sciences, University of Ulster, Shore Road, Newtownabbey, Belfast BT37 OQB, UK.

E-mail: be.blaney@ulster.ac.uk

ISSN 0963-8288 print/ISSN 1464-5165 online ª 2009 Informa Healthcare USA, Inc.

DOI: 10.1080/09638280701869629

Disability and Rehabilitation, 2009; 31(3): 170–180

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attempts to define it. The MS Council for Clinical

Practice Guidelines [12] define fatigue as ‘a sub-

jective lack of physical and/or mental energy that is

perceived by the individual or caregiver to interfere

with usual and desired activities’.

However, such general definitions have been

criticized, as people with MS tend to use the term

fatigue to refer to different types of symptoms.

Schwid et al. [13] advocate assessment of fatigue

by breaking it down into its component parts.

They detail means of quantitatively assessing

motor and cognitive fatigue, as well as the use of

visual analogue scales to report lassitude (defined

as ‘a subjective sense of reduced energy’).

However objective assessments of cognitive fatigue

or exercise-induced fatigue have not been found to

correlate with patients’ self reports of fatigue severity

[14,15].

It is acknowledged that MS fatigue is ‘one of the

most difficult symptoms to treat and understand’

[16]. Extensive attempts have been made to develop

a definitive description of fatigue, to understand the

pathophysiological cause of fatigue and to measure

the phenomena, but despite such work, it is widely

acknowledged that people with MS are living with

the consequences of fatigue which are far reaching

and pervade every part of their lives. Fatigue is

reported as the worst (14%) or one of the worst

(55%) symptoms of MS [17]. Fisk et al. [17] suggest

that ‘fatigue appears to be a distinct impairment

factor which, together with neurologic impairment,

plays a large role in determining the physical,

psychological and social handicaps that the MS

patient faces’. They found that 60% of their sample

reported worsening of cognitive, psychosocial and

physical symptoms when fatigued, and therefore

suggested that an assessment of fatigue is vital in

order to understand a patient’s presentation in

clinical assessment.

Referral of people with MS to Speech and

Language Therapy services is not always routine

[18] therefore communication impairments asso-

ciated with MS and the impact of fatigue on

communication impairments have not always re-

ceived focused clinical intervention or the compre-

hensive research required to underpin evidence

based practice. In addition the World Heath

Organization’s (WHO) International Classification

of Functioning, Disability and Health (ICF) [19]

urges clinicians to look beyond issues of impairment

to consider the impact of health conditions such as

MS on an individual at the levels of activity

(execution of tasks) and participation (involvement

in life situations). While such frameworks have been

used to discuss and report communication change

and interventions in a range of client groups [20,21]

little is know about communication activity or

participation in MS or the impact of fatigue on

levels of communication activity or participation.

Yorkston et al. [22] used interviews to report on

the insider’s experience of living with MS and

associated communication change. Whilst fatigue

was not the focus of this research, schema was

developed to summarize the various factors which

participants reported to impact on communicative

participation. These included impairment level

factors such as cognition, vision and notably fatigue.

The results emphasize the need for all clinicians to

explicitly recognize the influence of fatigue on a

range of impairment factors, and highlight the need

for Speech and Language Therapists (SLTs) to be

aware of the interplay between a range of impairment

factors, including fatigue, on any communication

activity.

The Multiple Sclerosis National Clinical Guide-

lines, (MSNCG) [1] suggests that ‘Each professional

in contact with a person with MS should consider

whether fatigue is a significant problem or a

contributing factor to their current clinical state’.

However the specific impact of fatigue on commu-

nication has not been comprehensively investigated.

Some studies have examined the impact of fatigue on

the speech production system in normal populations

[23 – 26]. Others have reported the muscles of

speech production to be subject to the impact of

fatigue in MS [27], or provided general reference to

the exacerbation of speech symptoms in MS with the

onset of fatigue [28]. However, few studies compre-

hensively report on the impact of fatigue on

communication in people with MS, or look beyond

its impact at the level of impairment to its impact on

communication activity or participation.

Hartelius et al. [29] reported on the relationship

between fatigue and communication in participants

with MS. They used the Fatigue Impact Scale (FIS),

a self-report questionnaire that attempts to measure

the impact of fatigue on activities of daily living.

However, the FIS does not address the impact of

fatigue on communication. Therefore they devised

an addition to the FIS, the Communication Scale

(CS), which consisted of 20 statements concerning

the impact of fatigue on communication. MS

participants reported significantly greater commu-

nication problems caused by fatigue than controls.

Interestingly in this study clinical assessment of

communication using standard language and

speech assessment batteries was not found to be

sensitive to the communication problems reported

by participants.

The importance of the insider’s experiences of MS

is now firmly established in the literature. The

outcomes of such research have been used to develop

an understanding of MS and to evaluate MS

clinical practices [22,30,31,32]. The results of such

The impact of fatigue on communication in MS 171

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qualitative studies have implications for interpreting

and understanding the experiences of people with the

condition and have the potential to influence clinical

management of symptoms. The expert, the person

with MS, has a role to play in the education of

clinicians and researchers. They can provide for us

valid and valuable insights into the lived experience

of fatigue and communication, which have the

potential to direct clinical assessment and interven-

tion and further research.

The purpose of this study was to explore and

understand the insider’s perspective of the impact of

fatigue on communication in MS; to highlight

relevant issues for clinical intervention and finally

to provide a focus for further research in fatigue and

communication in MS.

Method

This research was approved by the Office for

Research Ethics Committees in Northern Ireland.

Ten participants with a diagnosis of MS were

recruited in response to advertisements placed with

MS support organizations in N. Ireland. The

advertisement indicated that potential participants

should experience fatigue and communication

change which they associated with their diagnosis

of MS. They were invited to contact the researchers

by post, telephone or email. Participants were

required to be over 18 years old with, a confirmed

diagnosis of MS, capacity to provide informed

consent and ability to convey their opinions at

interview (e.g., use of speech, writing, or use of an

augmentative communication device), and as indi-

cated above, to report communication changes and

fatigue which they associated with their diagnosis of

MS. Potential participants were excluded if they had

any other neurological condition, serious illness or

significant hearing loss.

For participant details see Table I.

A phenomenological approach was used in

this study to discover the lived experiences of

individuals from their own unique perspective.

Such an approach was considered particularly useful

for deriving insights into symptoms such as fatigue

and communication, which are subjective in nature

and inseparable from the context in which they occur.

Interview One

Written consent was obtained for participation in the

research and audio-recording of the interview. Each

participant met with the first author twice. During

the first meeting fatigue was measured with admin-

istration of the Modified Fatigue Impact Scale

(MFIS). This is a 21-item self-report questionnaire

developed by the United States National Multiple

Sclerosis Society [33], which addresses the impact of

fatigue on physical, cognitive and psychosocial

functioning, (but has no specific reference to com-

munication). All items are scored so that higher

scores indicate a greater impact of fatigue on a

person’s activity; scores can range form 0 – 84.

Participants also described their major communica-

tion symptom(s) (see Table I), before being inter-

viewed regarding the impact of fatigue on

communication. Participants were reminded that

they could withdraw from the research at any time.

Nine of the ten participants chose to be interviewed in

their homes. At his request the tenth participant (CU)

was interviewed in a private office in his work place.

Interviews were used to facilitate the participants

to describe, without constraint, their unique experi-

ence and perspective. Interviews started with a

statement that the participant was viewed as the

expert in their unique condition. This was followed

with a review of the purpose of the interview. The

interview opened with the question: ‘Tell me in

detail about your experiences of communicating

when fatigued’. Questions and probes used during

the interview were open, neutral, and were used to

elicit in-depth descriptions of the participants’

experiences, and to clarify unclear points. For

example when a participant referred to a broad term

such as ‘being tired’ they were asked for clarification,

such as ‘tell me what you mean by ‘‘being tired’’’, or

‘tell me about a time when you were tired’, or ‘if I

was with you when you were tired what would I

notice?’. Thus participants were encouraged to give

examples to illustrate their experiences and feelings.

Questions were also used to guide the participant

back to the focus of the interview when they strayed

from the topic.

Data analysis

Interviews were transcribed, verbatim. Accuracy of the

transcripts was verified by random sampling of three

interviews. Each transcript was then read multiple

times in order to establish a sense of the whole

interview. This initial step was completed separately by

both authors. Next, key experiences referred to by the

participants were identified for example, ‘I knew what

I wanted to say but I just could not find the words’.

These were labelled meaning units. Code words were

attached to each meaning unit. The code words used

were concrete and descriptive of the ideas expressed in

the text, so for the example above, the code words

attached were ‘Word Retrieval Difficulty’. This second

level of analysis was completed separately by each of

the authors.

The next stage was completed collaboratively by

both authors and involved comparison and debate of

the meaning units. As these were debated and

172 B. E. Blaney & A. Lowe-Strong

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discussed the meaning units were also clustered into

common categories or themes. Again in the example

above the theme which evolved was ‘revealing

communication change’.

Next, a summary of each participant’s transcript

was prepared. All meaning units relating to each

thematic heading were colour coded within the text

and then listed for each participant, thus establishing

an audit trail.

Further joint discussion then took place regarding

the themes. This involved returning to the original

transcripts, agreeing themes, and debating potential

blind spots of each of the researchers. Themes were

then updated to ensure that the essence of the

transcripts had been captured.

Interview Two

At interview two each individual participant’s origi-

nal written transcript was presented. Each high-

lighted meaning unit and its interpretation with

reference to the key themes was discussed. Partici-

pants had the opportunity to review how their words

had been interpreted ensuring that understanding

between the researcher and participant had occurred

[34]. Where interpretation of a meaning unit was

disputed participants were invited to elaborate. Their

elaboration or interpretation was recorded directly

onto the written transcript. For example at interview

one a participant discussed using written notes, at

interview two she clarified that this was a covert

strategy not widely know to people in her environ-

ment. Thus it was linked to the covert strategies

thematic heading. After interview two, any altera-

tions to the links between meaning units and

thematic headings were updated on the summary of

each participant’s transcript.

Results

Participants framed their observations regarding

communication and fatigue around three major

themes, revealing communication changes, conceal-

ing and coping and finally barriers to participation.

Revealing communication changes

The first theme described variability in communica-

tion symptoms, which participants attributed to the

impact of fatigue. Fatigue was reported to exacerbate

communication symptoms and also to result in new

communication symptoms becoming apparent. De-

scriptions reflected an acute awareness of the specific

communication impairments impacted by fatigue.

The impact of fatigue was to unmask communication

symptoms and so reveal communication impairment

to listeners.

Fatigue increases the frequency and severity

of communication symptoms

Participants reported increases in the frequency or

severity of cognitive communication symptoms,

language-processing deficits and/or motor speech

symptoms (see Table I for details) with the onset of

fatigue.

MO described the differences in her cognitive and

language skills with and without fatigue:

My memory’s much better first thing in the morning

before the fatigue really hits me and I’d say my speech is

much better . . . . Saying the wrong word, but I do that at

the best of times. Yeah, but the more fatigued I get, the

worse, the worse I would get. Yes, definitely, I would

still . . . I might be going to say car and I could say door.

But it would be worse when I am fatigued.

EN noted that her speech became more slurred with

fatigue:

If I was really tired, I would be really slurred . . . you

would nearly think I was drunk.

US also noted that her speech was the symptom of

her condition most sensitive to fatigue:

Sometimes I can slur words, you know. I have noticed

that and maybe sort of four o’clock to six or seven

o’clock say, I’ll slur words, you know. I’ll sound like I’ve

had a few to drink and I haven’t! But I talk like this

[referencing her mild dysarthria at the time of interview]

most of the time, but just . . . sometimes . . . when I must

be tired or something, my speech starts to go down,

yeah. Yeah. And that would be the one thing that you

would . . . one symptom you would notice, or I would

notice, you know? My speech would be sort of laboured

at that time.

New communication symptoms become apparent

Half of the participants reported the onset of new

communication symptoms which they were aware of

only when experiencing fatigue, these included both

language processing difficulties and dysarthria.

Common to all five was the onset of dysarthria (see

Table I).

MO reported an increase in the severity of her

cognitive and language impairments with the onset of

fatigue (above) but also reported the onset of a new

symptom, dysarthria, which she experienced only

when fatigued:

But slurring is a different thing. When I’m tired . . . when

I’m really tired . . . my speech gets really slurred. And

later on in the day, if I don’t get my rest, the worse I get.

174 B. E. Blaney & A. Lowe-Strong

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Listeners become more aware of communication

symptoms

Participants described how the interplay between

fatigue and communication led to communication

symptoms becoming more apparent to listeners. They

reported that the resulting communication did not

reflect how they would like to represent themselves.

CU (who reported experiencing communication

symptoms only when fatigued) described how fatigue

impacted on communication skills at work making it

difficult for him to present his true meaning and

feelings:

It can be quite an effort. At times I feel like, I’d rather go

away and sit down or read a book or just sleep, but

getting through it . . . because you can’t get the word you

want and you use simple words, it reduces the impact of

what you’re saying and when you can’t use the word you

want and you use baby words for it, you’re not getting

your true meaning or feeling across.

Common to all participants was some reference

to listeners’ perceptions of them as drunk or lazy

or the need to protect themselves from such an

interpretation. NC described the frustration around

trying to communicate with her daughter during a

period of fatigue.

. . . is it like a drunken slur you get when you’re tired? I

remember one night, I was really quite angry . . . and she

was only joking, and she said, ‘Have you been on the

bottle?’ and, I mean, she was only having a laugh with

me but I thought, if you only knew! – I really was slurred

that evening. I really was very, very tired that evening

and I could feel, as you were talking, you could feel that

one word was slipping into the next word.

TW described how she felt her speech betrayed her

attempt to present herself as able and competent:

Well, how your speech sounds. I mean, to look, you

wouldn’t think there’s much wrong with you, because

people always say, ‘And you look so well!’ but it’s not

that, it’s when you open your mouth and try to talk.

Communication is a sensitive gauge of level of fatigue

Participants also reported that familiar listeners used

the participants’ voice and communication as a

gauge of their level of fatigue.

GG reported that his speech was noted by friends

and family to be susceptible to fatigue:

. . . anyone that knows me says, ‘Your speech is a wee bit

(down) there, it’s slow or slightly slurred’. They’ll just

say, ‘you sound very tired’.

MO and EN similarly reported how listeners use

communication as a sensitive indicator of levels of

fatigue.

Well, people have told me, maybe when I’m speaking on

the phone . . . they’ve said my speech gets very slurred

when I’m tired . . . they would say . . . they would know I

was tired because my speech would have got very slurred. I

might not even have been aware of it. It was a friend of

mine was on the phone one day and she said, ‘You must

be tired, your speech has got very slurred’. (MO)

My eldest daughter, if she phoned, you know, she would

say, ‘You’re exhausted, I know by your voice’. (EN)

Concealing and coping

In the second theme concealing and coping strategies

were reported to operate on two levels. Firstly covert

strategies were employed behind the scenes, and

operated to keep interactions looking as normal as

possible on the surface, without the need to openly

acknowledge any underlying impairment. Partici-

pants themselves took responsibility and ownership

of such strategies. On a second level overt strategies

were used in collaboration with interlocutors to

achieve successful outcomes in communication

activities.

Working behind the scenes/covert strategies

Common to all participants was the enormous effort

and pre-planning that remains hidden from commu-

nication partners. Planning behind the scenes included

consideration of problems such as word finding and

memory difficulties. However, in common these plans

and strategies were covert or hidden from partners and

were concerned with keeping interactions operating as

normally as possible on the surface.

The two participants in employment (CU and

MC) noted that they used a range of behind-the-

scenes strategies in the work context to prevent their

communication symptoms becoming apparent. MC

described how she had developed a crib sheet of

potential phrases for standard letters to compensate

for her word retrieval problems at work:

. . . because I’m maybe writing to a mortgage company

and you have to phrase it in a certain way, and I would

maybe be sitting at my desk and I just can’t think . . . you

know, it’s ‘an agreement in principle’, you know, and it

just won’t come to me, and you know, but because I’ve

got now a big list on the computer. No, nobody would

know, but I always sort of think, ‘what is that word?’,

you know, ‘what is that phrase I’m meant to use?’ and I

go to my list and I sort of go down it until I get the

one . . . and it clicks, you know, once I see it, I know what

it is.

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MC emphasized the fact that no one at work was

aware of the strategies she was employing:

I mean, my boss wouldn’t even know that I have it

there . . . nobody would know even know that I was

doing that.

Similarly in preparation for teaching CU noted

that he put material on overhead slides so that he had

a prompt or cue for recalling words, and also noted

that his meticulous planning meant that he had not

had to explicitly acknowledge his communication

symptoms at work.

By the way [laughs], there’s nobody over at my college, I

don’t think, that has twigged on to this yet.

Behind-the-scenes preparations were not re-

stricted to the workplace, but were consistently

employed across contexts and participants. MO

described a similar circumstance involving pre-

planning for a visit to her physician:

I would have to write it down to make sure that I would

remember what I was going to say, you know? Because I

might not ask the right questions . . . or give the right

answers.

Again MO referred to the fact that this effort

remains hidden from potential listeners:

There’s a lot of planning going on there that nobody is

aware of. Even the people living with you don’t realize it.

Preplanning of communication activities related

not only to what might be considered purely

communication symptoms. Participants described

considerable effort put into preparing a setting

conducive to communication, attempting to control

as many variables as possible in order to reduce

distractions or complications. CU referred to having

to think first about practicalities so that he could

make himself available for communication:

One strategy is, if you know you’re going somewhere and

you know you’re going to be there about an hour, go to

the toilet! You’ve got to make sure you’re not called away

when you’re there, if I’m going anywhere, I sort of work

out what I’ve got to do so that I don’t get embarrassed.

Overt coping strategies

Participants reported on a wide range of overt coping

strategies employed to manage their fatigue and

communication changes and so promote success-

ful communication activity. In contrast to covert

strategies, they were openly acknowledged and often

required collaboration in order to be successful.

Energy efficiency

The onset of fatigue was reported in the first theme

(revealing communication changes) to increase the

range and severity of communication symptoms

experienced. In this context energy efficiency strate-

gies were described by all participants as a means of

managing fatigue and the associated communication

changes.

Reduce activity. Participants reported that one coping

strategy was reduction in their overall activity level.

CU reported that he had reduced his working hours

in order to cope with his fatigue and communication

changes:

One of the things; I don’t work past 1 o’clock in this place.

Others reported on the importance of targeted

activity TW:

Well, I would be inclined to be a lot quieter and would

only talk when I needed to.

Schedule activity. Participants reported schedul-

ing activity over the course of the day or week in

order to successfully engage in or complete activities.

MO said:

Well, I try not to be doing anything in the evening time

because I’m too tired. It would either have to be in the

morning or early afternoon.

All participants referred to the importance of rest

periods built into the daily routine. CU said:

. . .but when I get home, I’d be going home about one

o’clock today probably . . . when I make it home, there’ll

be nobody in the house so I can sit. What I will

do . . . what I do is I lie down and sleep for maybe an

hour or so, get some energy going.

Humour

Humour was reported as a positive coping strategy

and was frequently employed when communication

impairment was apparent. It was used as a means of

acknowledging the communication symptom while

allowing conversation and activity to move on while

preventing discord with the listener.

Now, I was in the Post Office on Monday . . . I meant to

say to the girl, ‘Thanks very much’ but it came

out . . . and I can’t remember what way it came out . . .

but it came out all jumbled, and I just smiled and she

smiled back! [laughs]. . . So if I make a blunder on the

phone, you know, I laugh it off, you know, whoever I’m

talking to. (EN)

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Similarly NC and TW reported how humour was

used within the family to allow communication

impairments to be acknowledged in a non-threaten-

ing way.

My youngest daughter, she would laugh with me, you

know, she would come in and say ‘oh, are we talking like

this today?’. (TW)

Similarly NC described how her family used

charade actions in a joke to negotiate meaning when

her speech was slurred:

and it used to be the joke with my husband and my son

and daughter, and they’d be saying [mimes charades]

doing this sort of thing.

Explain, acknowledge, educate

The group fell into two camps regarding the value of

explicitly acknowledging and explaining their MS

symptoms. Some participants felt that openly

acknowledging their symptoms was important and

that they had an important role to play in the

education of the public. TW said:

I would explain that I have MS and my speech is

affected.

Similarly, GG said:

It’s just a matter of letting them know that . . . not to be

afraid, that in the majority of cases that they’ll be dealing

with are not contagious [laughs] and, as usual, the main

point to get across is that people with a disability have a

right to expect the same rights and dignity and treatment

as anybody else, you know.

But on the other hand, some participants while

they wanted to protect themselves from the potential

misperceptions of the listeners also felt that they did

not owe the listeners any explanation.

I don’t let it bother me, you know . . . if . . . if . . . if the

other person looks at me funny, I’ll go to myself well,

that’s your problem . . . . I’m not going to stand and

explain what’s wrong with me. Well that’s their problem

if they think I’m not right in the head. (EN)

Notes for communication and memory

Written notes were described above as a covert

strategy, used to manage communication and mem-

ory difficulties. They were used behind the scenes, to

pre-plan and so in some instances, to prevent

communication symptoms coming to the fore.

However, notes were also employed explicitly by

eight of the ten participants to aid communication

and memory in an explicit way. In this context notes

were viewed as an extension of normal note taking

and written recording was carried out openly. The

two participants who did not refer to this strategy did

not have sufficient hand control for writing.

KT said:

What I do actually, at the kitchen table where I sit a lot, I

keep a pencil and paper in front of me and write things

down or else I just forget them.

Similarly NC said:

I keep a pad beside my bed and I write down things that

I wanted to say or maybe I was talking on the phone –

just somebody’s name or whatever.

Barriers to participation

In the final theme participants described barriers to

communication participation. While participants

reported barriers to be, in part, related to the

symptoms and strategies reported in the first two

themes, barriers were not perceived to directly result

from any single MS impairment such as fatigue or

communication. Barriers were the outcome of a

complex interplay between the range of impairments

experienced by an individual, the coping strategies

employed and people’s attitudes.

CU described how casual opportunities to socia-

lize could not be capitalized on due to the interplay

between impairments:

When I was coming along here, down the corridor,

another lecturer came along that I hadn’t seen in ages

and he started walking with me, and the thing is that

walking and talking is difficult. If I’m going anywhere

walking, I prefer to be on my own, so that I’m not

speaking to anybody. So really, every step I take, I’m

thinking about it but when I’m trying to speak at the

same time . . . I’m more than likely to trip.

All participants reported how their social circle had

become depleted since their diagnosis, and so the

opportunities for communication had become redu-

ced. Participants related this depletion in their social

opportunities due, in part, to the barriers created by

the attitudes and anxieties of those around them relat-

ing to confronting or dealing with MS and disability.

TW said:

It would be strangers or outsiders; they would be

inclined to talk to whoever is with you.

TW also discussed how family members’ embarrass-

ment acts as a barrier to participating in social

outings:

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Well, my mother’s aspect of it would be . . . I had actually

two weddings to go to. I had one in June and one if

August and my mother would say, ‘Oh well, I hope your

speech comes back’, you know? In other words, you

don’t want to be going and talking like that and then I

just say, ‘Well, whether it comes or whether it doesn’t,

I’m still going’, you know?

Discussion

In the first theme, revealing communication changes,

participants provided detailed and cogent descriptions

of communication change and the interplay between

fatigue and communication. They reported an in-

crease in the frequency/severity of communication

symptoms with the onset of fatigue, and the onset of

new communication symptoms which were only

apparent during periods of fatigue. Participants

described a differential sensitivity to fatigue across

cognitive, language and motor domains of commu-

nication. Dysarthria was common to all participants

who reported the onset of new communication

symptoms when experiencing fatigue.

The detailed descriptions provided by participants

are arguably more useful than communication

assessment batteries which have been shown to lack

sensitivity to the subtle impairments associated with

MS [7,32] and which fail to consider the interplay

between fatigue and communication, and than

fatigue assessment tools which make no specific

reference to communication.

The differential in communication presentation

related to fatigue means that communication assess-

ment at times of fatigue versus assessment at times of

no or low fatigue, potentially results in different

clinical presentation, different clinical diagnosis of

communication symptoms and different severity

ratings of communication symptoms. Such fatigue

induced variability in communication may along

with, reliance on insensitive assessment tools, con-

tribute to the varied reports of incidence and

prevalence of communication impairments in MS.

Further research is required to examine the impact of

fatigue across communication domains. The results

of such research have the potential to provide

insights into the pathophysiological cause of MS

fatigue.

Self reports in this study described in detail the

individual’s experience of communication change

which covered issues of impairment, activity and

participation. Thus, self reports provide a more

comprehensive picture of communication than any

single clinical assessment battery currently delivers.

The MSNCG [1] suggest that professionals need to

improve their ‘acknowledgement that people with

MS have expertise and have views that should be

taken into account’. In the context of MS fatigue,

clinicians may comply with this guidance by giving

self reports of communication symptoms a more

prominent role in clinical assessment.

While clinicians are experienced in probing the

impact of factors such as relapse or remission or

neurological involvement on variability in presenta-

tion of symptoms, probing the impact of fatigue in

clinical assessment needs to become routine. There-

fore a clinical assessment tool to guide clinicians

through an assessment of the impact of fatigue on

communication would be a valuable resource.

However, in the absence of a comprehensive tool

Table II poses probe questions relating to the themes

which emerged from the participants’ transcripts.

These probes could be used as a starting point in

order to elicit self reports on pertinent fatigue and

communication issues. This may be of particular

value where the client experiences communication

and or fatigue problems but, as reported in the

second theme, works strenuously to keep those

symptoms hidden from friends, family and profes-

sionals. Since it has been reported that clients with

MS are not always routinely referred to SLT services

[18] such guide questions may be useful for a range

of rehabilitation professionals. Those who are reg-

ularly in contact with these clients or who deliver

regular reviews could use the response to such

questions to facilitate appropriate referral for symp-

toms which may remain covert during routine

clinical examination.

In other client groups presenting with commu-

nication problems, such as aphasia, it has been

reported that compensatory strategies developed by

patients themselves not those ‘trained’ by the SLT,

tend to be employed most frequently [35]. In the

second theme participants reported on a range of

strategies which they had developed to deal with the

impact of fatigue and communication changes.

These strategies included the use of energy efficiency

strategies and humour. However, recent reviews of

impairment and interaction strategies to deal with

motor speech and language processing symptoms

associated with MS [36,37] do not focus on such

strategies. Instead the strategies recommended by

SLTs typically focus on language processing, repair-

ing communication breakdown, the interlocutor

skills or the communicative environment. In view

of the impact of fatigue on severity and onset of

communication symptoms reported in this study,

clinicians can learn from the experts with MS, who

suggest that focusing on fatigue and how it impacts

on communication is an effective strategy to impact

on every day communication.

At present no medicines have been identified that

are recommended to specifically target fatigue in

MS [1]. However, fatigue management programmes

are gaining increased popularity as a means of

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addressing fatigue with this client group. Such

programmes tend to be based on energy conserva-

tion principles and are frequently run by MS

specialist nurses and Occupational Therapists

[28,38,39,40]. While participants in the current

study reported on the impact of energy conservation

strategies on communication, reports in the litera-

ture of the outcomes of such programmes rarely

make specific reference to their impact on commu-

nication. Further research is required to determine

the specific impact of fatigue management pro-

grammes on communication and in particular their

impact on communication symptoms that come to

the fore only at times of fatigue. Given the

complexity of the communication impairments

associated with MS and the lack of sensitivity of

standard communication assessment tools to com-

munication problems associated with MS, the SLT

would be a key member of the team to involve in

such evaluations.

The World Health Organization [19] urges

healthcare professionals to intervene at levels

beyond impairment, to examine the context of

activities and to promote participation. Participants

in this study were asked to focus on fatigue and

communication but through their interviews urged

us to look beyond impairment issues drawing our

attention in the third theme to the need to focus on

barriers to communication participation. Barriers

related to complex interactions between impair-

ments, coping strategies and attitudes to disability

prevalent in society which when combined lead to

reduced opportunities for communication participa-

tion. Thus, reported barriers to communication

participation often included a range of factors such

as fatigue, mobility, and family attitudes which at

first glance are not the traditional domain of the

SLT or indeed of any single rehabilitation profes-

sional. Crayton et al. [41,42] refer to a cycle of

interrelated symptoms, where untreated symptoms

lead to increases in other symptoms. They suggest

that a ‘comprehensive integrated therapy model

offers the greatest opportunity for success in

addressing quality of life issues for patients with

MS’ [42]. Such an approach emphasizes the

importance of multidisciplinary management of

people with MS. The MSNCG [1] include the

SLT as a key member of the specialist team

required to address the needs of MS patients.

However, while clinical practice often sees the SLT

contributing to specialists teams, frequently they do

not have the opportunity to work as a full time

integrated member of the team where complex

issues and interplays between symptoms such as

those reported by the participants in this study can

be effectively addressed.

Acknowledgements

Preparation of this research was supported by a grant

from the Royal College of Speech and Language

Therapists.

Table II. Emergent themes and probe questions.

Theme Sub theme Probe questions

Revealing communication

changes

Fatigue increases the frequency/severity of

communication symptoms.

Describe your communication when you are

fatigued.

New communication symptoms become

apparent.

Does the severity of your communication

symptoms change when you are experiencing

fatigue?

Listeners become more aware of communication

symptoms.

Are there any communication symptoms which

occur only when you are fatigued?

Communication is a sensitive gauge of level

of fatigue.

Would some one who knows you well notice any

change in your communication when you are

experiencing fatigue?

Concealing and coping Working behind the scenes/covert strategies. What strategies do you use to cope with your

communication changes?

Do you try to hide your communication

difficulties from family/friends/professionals?

Overt coping strategies Are your family or friends aware of the effort

you put into managing your communication

symptoms?

Do your family or friends do anything which

you find helpful when you experience

communication difficulties?

Barriers to participation Symptoms, strategies and attitudes. Have your opportunities for communication

changed?

What factors do you think contribute to this

change?

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References

1. Multiple Sclerosis National Clinical Guideline for diagnosis

and management in primary and secondary care. The

National Collaborating Centre for Chronic Conditions.

London: Royal College of Physicians; 2004.

2. Charcot J-M. Lectures on the diseases of the nervous system.

London: New Sydenham Society; 1877.

3. Beukelman DR, Kraft G, Freal J. Expressive communication

disorders in persons with multiple sclerosis. A survey. Arch

Phys Med Rehabil 1985;66:675 – 677.

4. Hartelius L, Svensson P. Speech and swallowing symptoms

associated with Parkinson’s disease and multiple sclerosis: A

survey. Folia Phoniatrica 1994;46:9 – 17.

5. Enderby P, Phillipp R. Speech and language handicap:

Towards knowing the size of the problem. Br J Disorders

Communic 1986;21:151 – 165.

6. Darley FL, Brown JR, Goldstein NP. Dysarthria in Multiple

Sclerosis. J Speech Hearing Res 1972;15:229 – 245.

7. Murdoch BE, Lethlean JB. Language disorder in multiple

sclerosis. In: Murdoch BE, Theodoros D, editors. Speech and

language disorders in Multiple Sclerosis. London: Whurr;

2000. pp 109 – 130.

8. Lethlean JB, Murdoch BE. Language problems in Multiple

Sclerosis. J Med Speech-Lang Pathol 1993;1:47 – 59.

9. Lethlean JB, Murdoch BE. Naming errors in multiple

sclerosis: Support for a combined semantic/perceptual deficit.

J Neurolinguististics 1994;8:207 – 223.

10. Lethlean JB, Murdoch BE. Performance of subjects with

multiple sclerosis on tests of high level language. Aphasiology

1997;11:39 – 57.

11. Freal JE, Kraft GH, Coryell JK. Symptomatic fatigue in

multiple sclerosis. Arch Phys Med Rehabil 1984;65:135 –

138.

12. Multiple Sclerosis Council for Clinical Practice Guidelines.

Fatigue and multiple sclerosis: Evidence based management

strategies for fatigue and multiple sclerosis. Washington DC:

Paralyzed Veterans of America; 1998.

13. Schwid SR, Covington M, Segal BM, Goodman AD. Fatigue

in multiple sclerosis: Current understanding and future

directions. J Rehabil Res Develop 2002;39:211 – 224.

14. Chipchase SY, Lincoln NB, Radford KA. Measuring fatigue

in people with Multiple Sclerosis. Disabil Rehabil 2003;

25:778 – 784.

15. Krupp LB. Fatigue in Multiple Sclerosis. Definition, patho-

physiology and treatment. CNS Drugs 2003;17:225 – 234.

16. Schwartz CE, Coulthard-Morris L, Zeng Q. Psychosocial

correlates of fatigue in multiple sclerosis. Arch Phys Med

Rehabil 1996;77:165 – 170.

17. Fisk JD, Pontefract A, Ritvo PG, Archibald CJ, Murray TJ.

The impact of fatigue on patients with Multiple Sclerosis. Can

J Neurological Sci 1994;21:9 – 14.

18. Klugman TM, Ross E. Perceptions of the impact of speech

language swallowing and hearing difficulties on quality of life

of a group of South African persons with multiple sclerosis.

Folia Phoniatrica et Logopaedica 2002;54:201 – 221.

19. World Health Organization (WHO). International Classifica-

tion of Functioning Disability and Health 2001. [Internet]

Accessed 2 February 2007 from the website: http://

www.who.int/classifications/icf/site/intros

20. McLeod S. Speech pathologists’ application of the ICF to

children with speech impairment. Adv Speech-Lang Pathol

2004;6:75 – 82.

21. Le Dorze G, Brassard C. A description of the consequences of

aphasia on aphasia persons and their relatives and friends,

based on WHO model of chronic diseases. Aphasiology

1995;9:239 – 255.

22. Yorkston KM, Klasner ER, Swanson KM. Communication in

context: A qualitative study of the experiences of individuals

with multiple sclerosis. Am J Speech-Lang Pathol 2001;

10:126 – 137.

23. Kuehn DP, Moon JB. Induced fatigue effects on velopharyngeal

closure force. J Speech, Lang Hearing Res 2004;3: 486 – 500.

24. Solomon NP, Di Mattia MS. Effects of a vocally fatiguing task

and systemic hydration on phonation threshold pressure.

J Voice 2000;14:341 – 362.

25. Solomon NP. Changes in normal speech after fatiguing the

tongue. J Speech Lang Hearing Res 2000;43:1416 – 1428.

26. Han Y, Wang J, Fischman DA, Biller HF, Sanders I. Slow

tonic muscle fibers in the thyroarytenoid muscles of human

vocal folds: A possible specialization for speech. The

Anatomical Record 1999;256:146 – 157.

27. Murdoch BE, Theodoros DG, Ward EC. Articulatory and

velopharyngeal dysfunction in multiple sclerosis. In: Murdoch

BE, Theodoros D, editors. Speech and language disorders in

Multiple Sclerosis. London: Whurr; 2000. pp 47 – 63.

28. Ward N, Winters S. Results of a fatigue management

programme in multiple sclerosis. Br J Nursing 2003;12:

1075 – 1080.

29. Hartelius L, Burge A, Johannsson A, Ljungsfors A, Mattsson

A, Winkworth A, Anderson O. How does fatigue affect

communication? Int J MS Care 2004;6:39 – 51.

30. Olsson M, Lexell J, Soderberg S. The meaning of fatigue for

women with multiple sclerosis. J Adv Nursing 2005;49:7 – 15.

31. Miller C, Jezewski M. A phenomenologic assessment of

relapsing MS patients’ experiences during treatment with

Interferon Beta-1a. J Neurosci Nursing 2001;33:240 – 244.

32. Murphy-Miller C. The lived experience of relapsing multiple

sclerosis: A phenomenological study. J Neurosci 1997;29:

294 – 304.

33. United States National Multiple Sclerosis Society.

Accessed 30 October 2007 from the website: http://www.

nationalmssociety.org/site/PageServer?pagename¼HOM_RES_

mucs_fatigue

34. Benner P. Interpretative phenomenology. Thousand Oak,

CA: Sage; 1994.

35. Simmons-Mackie N, Damico JS. Reformulating the definition

of compensatory strategies in aphasia. Aphasiology 1997;

11:761 – 781.

36. Theodoros DG, Ward EC. Treatment of motor speech

disorders in multiple sclerosis. In: Murdoch BE, Theodoros

D, editors. Speech and language disorders in Multiple

Sclerosis. London: Whurr; 2000. pp 80 – 108.

37. Hinchliffe FJ, Murdoch BE, Theodoros DG. Treatment of

language disorders in multiple sclerosis. In: Murdoch BE,

Theodoros D, editors. Speech and language disorders in

Multiple Sclerosis. London: Whurr; 2000. pp 195 – 225.

38. Schapiro RT. Multiple Sclerosis – a rehabilitation approach to

management. New York: Desmos; 1991.

39. Welham L. Occupational therapy for fatigue in multiple

sclerosis. Br J Occupat Ther 1995;58:507 – 509.

40. Bowcher H, May M. Occupational therapy for the manage-

ment of fatigue in multiple sclerosis. Br J Occupat Ther

1998;16:488 – 492.

41. Crayton HJ, Rossman HS. Managing the symptoms of

Multiple Sclerosis: A multimodal approach. Clin Therapeu-

tics 2006;28:445 – 460.

42. Crayton H, Heyman RA, Rossman HS. A multimodal

approach to managing the symptoms of multiple sclerosis.

Neurology 2004;63:12 – 18.

180 B. E. Blaney & A. Lowe-Strong

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abil

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nloa

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rmah

ealth

care

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vers

ity o

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olum

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/14

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onal

use

onl

y.