Fatigue in systemic lupus erythematosus:
Research
impact on occupational participation and
reported management strategies
Deirdre Connolly,1 Aine McNally,2 Deirdre Moran,3 and Margaret Ryan 4
Key words:
Systemic lupus
erythematosus,
fatigue management,
occupational participation.
1 Lecturer, Trinity College Dublin, Occupational
Therapy, St James’ Hospital, Dublin, Ireland.
2 Occupational Therapist, St
Dublin, Ireland.
James’ Hospital,
3 Occupational Therapist, Our Lady’s Hospice
and Care Services, Occupational Therapy,
Dublin, Ireland
4 Occupational Therapist, Enable Ireland,
Co. Meath, Ireland.
Corresponding author: Deirdre Connolly,
Lecturer, Discipline of Occupational Therapy,
Trinity Centre for Health Sciences, St James’
Hospital, James’ Street, Dublin 8, Ireland.
Email: deirdre.connolly@tcd.ie
Reference: Connolly D, McNally A, Moran D,
Ryan M (2014) Fatigue in systemic lupus
erythematosus: impact on occupational
participation and reported management
strategies. British Journal of Occupational
Therapy, 77(7), 373–380.
DOI: 10.4276/030802214X14044755581862
© The College of Occupational Therapists Ltd.
Submitted: 13 February 2013.
Accepted: 9 April 2014.
Downloaded from bjo.sagepub.com at KAI NAN UNIV on March 3, 2015
Purpose: Fatigue is reported by approximately 81 per cent of people with systemic
lupus erythematosus, with subsequent lower quality of life. Although standardized
measures have been used to examine the prevalence of fatigue, qualitative research
is needed to explore how people describe and cope with fatigue in their daily lives.
Method: Twelve people completed the Fatigue Impact Scale and were then
interviewed using semi-structured interviews. Data were analysed using descriptive
statistics and qualitative descriptive guidelines.
Findings: Participants were aged 22–62 years with a mean of 14.3 years
(SD 10) since diagnosis. Individual interviews identified an unpredictable pattern
of fatigue for the study participants and an impact on participation in occupations
of productivity and leisure, which resulted in loss of important life roles. Fatigue
management strategies were self-developed, with participants reporting no input
from health professionals.
Conclusion: The unpredictable nature of fatigue makes it difficult to manage.
It appears that development of both cognitive and practical strategies is required
to reduce the impact of fatigue on valued occupations. Early fatigue management
interventions could be beneficial for people with systemic lupus erythematosus in
order to manage this symptom. However, a larger study is required to confirm the
transferability of these findings.
Introduction
Systemic lupus erythematosus (SLE) is a chronic, rheumatic, autoimmune
disease. No single cause has been identified and the clinical presentation
ranges from a chronic debilitating disease to one that is potentially life threat-
ening due to organ dysfunction (D’Cruz 2006). Common symptoms include:
painful joints, fever, skin rash, chest pain, and chronic fatigue (Baker et al 2009,
Scofield et al 2008). No epidemiological data are available on SLE in the Republic
of Ireland (RoI); however, there is a reported incidence rate of 4.71/100,000 of
SLE in the United Kingdom (UK), with a higher rate of 7.62/100,000 in Northern
Ireland (NI) (Somers et al 2007). SLE is more prevalent among women, with
a common age of onset between late teens and early 40s. Acute flare-ups of
SLE are managed with medication and rehabilitation (Brown 2006).
SLE has a relatively low incidence within the general population in com-
parison to other inflammatory rheumatic conditions (Somers et al 2007). A
need for research into specific issues in relation to SLE is required to assist
in planning and delivering suitable interventions for this population (Almehed
et al 2010). Fatigue is identified as a symptom of many chronic conditions which
interferes with occupational participation (Stout and Finlayson 2011). Law
(2002) defined occupational participation as the nature and extent of involve-
ment in activity, and stressed its importance for people with chronic conditions.
This exploratory study was aimed at investigating SLE-related fatigue,
including management strategies and impact on occupational participation.
British Journal of Occupational Therapy July 2014 77(7) 373
Fatigue in systemic lupus erythematosus: impact on occupational participation and reported management strategies
Literature review
A systematic review of quality of life in people with SLE reported
lower quality of life in people with SLE compared to other
chronic conditions (Almehed et al 2010). Pain, fatigue, and
reduced ability to engage in work, social, and family activi-
ties are identified as the factors most strongly associated with
reduced quality of life in SLE (McElhone et al 2006, Thumboo
and Strand 2007). Of these factors, 81% of people with SLE
identified fatigue as the most debilitating symptom of their
disease, which compromised participation in everyday activities
(Sohng 2003).
The impact of fatigue for women with a variety of chronic
conditions was explored by Kralik et al (2005). The women
described physical and psychological manifestations of fatigue.
The authors concluded that, in addition to using quantifi-
able measures of fatigue, it is important to capture subjec-
tive descriptions. Other researchers have also highlighted
problems with fatigue measurement scales, stressing the
need for personal accounts of fatigue (Rasker 2009). This
legitimizes and validates people’s experiences of fatigue and
increases healthcare providers’ understanding of it.
There appears to be a gap in the literature with regard to
studies providing in-depth exploration of fatigue in SLE.
Although Kralik et al’s study (2005) included women with
SLE, it did not specifically investigate issues related to SLE
fatigue. It is unknown whether fatigue presents in a similar
pattern to other chronic conditions and what factors affect
and /or increase fatigue in SLE. Such information is important
when planning and delivering suitable fatigue management
interventions for people with SLE (Neill et al 2006).
This study, therefore, was an exploratory study aimed
at investigating: (1) experiences of and management strategies
for fatigue in SLE, and (2) the impact, if any, of fatigue on
occupational participation.
Methods
Study design
The purpose of this exploratory study was to identify the
nature and patterns of fatigue in SLE in order to inform the
design of suitable fatigue management interventions. The
Medical Research Council (2008) recommended the use of
qualitative methods, in addition to quantitative and experi-
mental methods, in designing and evaluating complex
interventions. Qualitative description (QD), as described by
Sandelowski (2000), is a qualitative research design used to
describe people’s perceptions and experiences of a particular
phenomenon. It is considered an appropriate methodology
for needs assessments and informing planning and delivery
of clinical interventions (Neergard et al 2009). A limitation
of QD, however, is that, as it is not theory driven, and data
analysis is descriptive rather than interpretive, it reduces the
ability to make transferrable conclusions (Milne and Oberle
2005). However, as the impetus for this study was to explore
experiences of fatigue with a view to informing planning and
374 British Journal of Occupational Therapy July 2014 77(7)
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delivery of suitable interventions, this was considered a relevant
research design for this study.
Participant recruitment
Purposive sampling was used to recruit participants with
experience of the phenomenon being studied (Punch 2005).
Capturing and portraying a truly insider perspective of the
research topic enhances authenticity of study findings in QD
(Neergard et al 2009). Study participants were recruited
through a voluntary organization for people with SLE.
Participant information letters were emailed to all members,
inviting those who experience fatigue to participate in the
study. The first 16 people who responded to the email were
contacted to establish their diagnosis of SLE (based on self-
report) and their ability to participate in an interview. Of these
16 people, three had other medical issues in addition to their
SLE and were, therefore, excluded from the study. One other
person was unable to attend for interview due to travel diffi-
culties. The remaining 12 people were recruited into the study.
Signed consent was returned to the researchers by post, along
with participants’ completed Fatigue Impact Scale (FIS, Fisk
et al 1994). Confidentiality was assured in the participant
information letter and the consent form. Ethical approval for
the study was given by the Trinity College Dublin, Faculty of
Health Sciences Research Ethics Committee (17/07/2008).
Data collection methods and process
Two data collection approaches were utilized in this study.
Study participants were initially asked to complete the FIS.
This was done prior to their individual interviews to provide
background information on their fatigue and act as a prompt-
ing tool for the interviews, as self-report questionnaires have
been recommended as a method of focusing discussions
between researchers and research participants (Kielhofner
2008). The FIS is a self-report tool that measures the impact
of fatigue on social, cognitive, and physical activities on a
4-point Likert scale. The total score ranges from 0 to 160, with
higher scores indicating higher impact of fatigue. A score of
75 and above indicates a significant impact of fatigue (Arnett
and Rabinowitz 2010). The FIS has proven reliability and
validity for people who have chronic conditions with fatigue
as a prominent symptom (Frith and Newton 2010).
After reviewing and scoring the completed FIS, semi-
structured interviews were arranged with each participant.
The interview guide asked participants to describe their fatigue
and to identify whether it impacted on their occupational
participation, and if so, how. In QD semi-structured interviews
are used to elicit specific data in relation to the research aims
(Milne and Oberle 2005). Interview duration was 40 to 85 min-
utes (median: 44.5 minutes, interquartile range 12.5 minutes).
Data analysis
In QD, the aim of data analysis is to provide a rich, straight
description of an experience or event (Neergard et al 2009).
QD analytical strategies were applied to the data. All inter-
views were audio-recorded and fully transcribed. Interview
transcripts were then transferred into N6 (NUD*IST 6), a
 Deirdre Connolly, Aine McNally, Deirdre Moran, and Margaret Ryan

Table 1. Description of participants and total FIS scores

Study ID Gender Age (years) Age at diagnosis Time since diagnosis Work status FIS total score
P1 Female 62 54 8 Housewife 95
P2 Female 58 38 20 Volunteer 82
P3 Female 29 14 15 Full-time paid 120
P4 Female 37 25 12 Housewife 80
P5 Female 37 33 4 Self-employed 83
P6 Female 33 20 13 Full-time paid 48
P7 Male 58 32 26 Full-time paid 62
P8 Female 26 19 7 Part-time paid 37
P9 Female 38 35 3 Housewife 86
P10 Female 56 26 30 Housewife 117
P11 Female 22 18 4 Student 95
P12 Female 58 28 30 Resigned 92
Mean (SD) 42.8 (14.5) 14.3 (10) 83.1 (24.7)

software package from QSR International, used for analysis
of qualitative data. Interviews were conducted by under-
graduate final-year occupational therapy students, who had
varying experience of clients with fatigue through their practice
education placements over a 4-year period. The first author
of this research paper (MR), an occupational therapy lecturer
with considerable experience of working with clients with both
inflammatory and non-inflammatory-related fatigue, super-
vised this study.
All researchers coded a single interview independently
and then met to compare codes. Differences in codes were
discussed; where there was disagreement, codes were agreed
on, re-named and /or new codes developed. The remaining
eleven interviews were then allocated among the research
group and all agreed codes were applied to these interviews.
Following this process, researchers met again, and any new
codes identified through individual analysis of the interviews
were discussed, agreed on, and, where appropriate, applied
across all interviews. On completion of the coding process
researchers grouped all codes into categories. These cate-
gories were then named to reflect the codes within each
category. Categories were then grouped into their relevance
to the research objectives from which three themes related to
fatigue in SLE were identified. In QD, identified themes clearly
reflect the aims of the study (Neergard et al 2009). Transcripts
and summaries of individual interviews were returned to
participants to give them the opportunity to remove any infor-
mation they were not willing to include, or to amend sum-
maries of their transcripts if they did not feel it represented
their situation accurately. None of the participants made any
changes to either their transcripts or summaries.
Quantitative data from FIS were entered onto SPSS version
16 and analysed using descriptive statistics to provide an
overview of the extent of the impact of fatigue on study
participants’ daily functioning.
Trustworthiness and rigour
Strategies for enhancing the rigour of QD have been outlined
by Milne and Oberle (2005). In QD, researchers aim for
authenticity and integrity of the research process. Studies
carried out by a team of researchers, rather than individuals,
facilitates authenticity and integrity (Punch 2005).
Neergard et al (2009) state that criticality is an important
element of authenticity. This was achieved through critical
analysis and continuous review of decisions made by members
of the research team. All decisions were documented, thereby
providing an audit trail of the research process. This enables
replication of the study methodology, which contributes to
authenticity (Miles and Huberman 1994).
In QD, integrity is important in reducing researcher bias
during data collection and data analysis (Sandelowski 2000).
Methods to achieve integrity included using evidence-based
literature to inform the research process, returning transcribed
interviews to study participants for member-checking, researcher
triangulation during data analysis, and seeking participants’
validation of researchers’ summary of their data.
Findings
Twelve people (11 female) participated in this study. All
participants were Caucasian, with ages ranging from 22 to
62 years and a mean of 14.3 years since diagnosis of SLE
(SD 10 years). Table 1 provides demographic details on the
participants and their total FIS score.
As can be seen from the FIS scores, the majority of partici-
pants reported considerable fatigue with a mean FIS score
of 83 (SD 24.7). The highest FIS scoring participant was P3,
with a score of 120. Although this person works full-time,
which is likely a significant contributing factor in her total
FIS score, it is also interesting that she was the youngest person
in the group at time of diagnosis. This raises a potentially inter-
esting area for further research, which is whether there is a
relationship between age of onset of SLE and levels of fatigue.
The total social, cognitive, and physical category scores
of the FIS are presented in Table 2. As there are 20 questions
in the social category and ten questions in each of the other
two categories, a ratio of 2:1 must be considered when com-
paring category scores. Therefore, for this group, the greatest
impact of fatigue was on physical functioning.

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Fatigue in systemic lupus erythematosus: impact on occupational participation and reported management strategies
Table 2. Mean scores of FIS categories
Category (score range) Mean score (SD)
Social (0–80) 41.99 (3.32)
Cognitive (0–40) 17.41 (5.45)
Physical (0–40) 23.55 (6.7)
Total FIS (0–160) 83.1 (24.7)
Qualitative data analysis identified three themes: (1) the
nature of fatigue in SLE; (2) the impact of fatigue on occu-
pational participation and associated roles; and (3) fatigue
management strategies.
Nature of fatigue in SLE
This study purposefully recruited people who experienced
fatigue as a result of SLE; therefore, all participants reported
experiencing fatigue to varying levels and identified it as their
worst symptom:
Fatigue is the one symptom that affects my life the most. It’s
the symptom that stops me doing things I want to do and it is
the hardest to cope with (P11).
You’re so tired that you have nothing left to give. It means you
have no energy left to give anything back. What I say is if you
put me in a coffin and closed the lid I’d have said thank you
very much, I’m very happy, I’m that tired (P10).
Participants reported a wide variety to the pattern of their
fatigue. Ten participants discussed its unpredictability:
Fatigue can arrive out of the blue. It’s a tiredness that comes
over you and you have to go to bed. I could have it very bad
for a week or two and then for the past month I haven’t been
as tired at all (P1).
… it can be very bad for a day or two and then all of a sudden
it goes away (P2).
For some participants fatigue is always present, even
after rest periods. P8 described waking in the morning as
‘looking for the track marks as if something ran over me’.
In other chronic diseases, such as multiple sclerosis,
fatigue is reported as a constant symptom (Smith and Hale
2007). However, some of the participants reported long
periods both with and without fatigue:
It can vary so much from day to day. I could go weeks and I
am fine. Then I have weeks where I am very tired. I have never
even noticed a pattern to it to be honest (P4).
The three most common factors that increased participants’
fatigue were stress, physical activity, and joint pain, with
stress being the most commonly discussed. P12 explained that
‘Stress really makes the fatigue worse’ and P1 that ‘Stress
takes twice as much out of me’, while P11 described stress
and fatigue as ‘a vicious circle’. P10 explained ‘you cannot
reduce the fatigue until you relieve the stress’. This analogy
of a vicious circle was also applied to pain and fatigue, as
described by P8:
When I’m having joint pain, I’m more fatigued, and if I’m more
fatigued, I’m going to have joint pain (P8).
376 British Journal of Occupational Therapy July 2014 77(7)
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Occupational participation and associated roles
As it was an aim of the study to explore the impact of fatigue
on occupational participation, this was an area much discussed
in all interviews. All participants identified a range of occu-
pations compromised due to their fatigue. As a result of restric-
tions on their occupations, the majority of participants also
discussed the impact of this on roles normally associated
with certain occupations.
Occupational participation
Daily occupations are categorized as: self-care, work-related,
or leisure (Law 2002). Of these three categories, self-care was
the least affected for all participants:
I’m fine with all that now but when I was first diagnosed I
found that a lot harder (P12).
Well to be honest, it was never a problem (P4).
Work-related and leisure occupations presented difficulties
for all participants. All 12 participants were below the generally
recognized retirement age, in the UK, of sixty-five. Five partici-
pants worked outside the home in either full- or part-time
employment. Of the remaining seven, one was in full-time
education and the other six worked inside the home. All par-
ticipants discussed the impact of fatigue on paid and unpaid
work-related activities. For those in paid employment, flexi-
bility and a supportive employer were critical factors in main-
taining employment:
I have an excellent boss who’s very approachable and under-
standing. My career is organized so I only ever have to work
22 hours-a-week (P8).
Participants discussed ways in which they modified work
activities in order to remain in employment. Such modifi-
cations included working part time, looking for work closer
to home, and using time in work constructively in order to
avoid taking work home in the evenings or weekends. One
participant chose her current studies based on the potential
future demands of her work:
… the environment that I will end up working in, for example
in an office, will be better for me. At least I can sit down all day
(P11).
Household chores also caused difficulty for the majority
of participants, with tasks such as preparing meals, cleaning,
shopping, laundry, and gardening identified as problematic:
For instance, cleaning the house, I had to get cleaners in (P5).
Take for example the garden — I would have been in full
control before but now I need help from others emptying the
grass, trimming the hedges, that sort of thing. I used to be able
to do all that myself, but not anymore (P7).
On discussing leisure activities, eleven of the participants
identified changes they had made, such as stopping certain
activities, taking up less physically demanding leisure pur-
suits, or altering them to accommodate fatigue. P9, who does
not drive, said ‘by the time I walk to the gym I don’t have the
energy levels to do anything’, while others commented:

I was big into cycling, swimming, and camogie but I’ve had
to give them all up (P11).
I played badminton but I gave that up for fatigue reasons and
joint pain (P8).
Some participants described how they have developed
new leisure interests that are not as fatiguing. P9 identified
walking as a leisure activity she now enjoys:
We live right beside the beach and I find that very relaxing.
It’s easy on the joints (P9).
P11 explained how yoga and Pilates helps in reducing
her fatigue:
… you benefit from the rest and the relaxation (P11).
Impact of occupational restrictions on roles
As a result of reduced ability to participate in valued occu-
pations, participants discussed the impact this had on what
they considered important life roles. These role-adjustments
were as a result of changes made to paid work and leisure
activities, and included changes to the role of mother, daughter,
child-minder and volunteer.
One participant identified the impact of fatigue on her
relationship with her son:
When it was really bad I wasn’t able to do anything and my
husband kind of took over. So, when he was here he did every-
thing with my son and as a result of that my son wanted to
be with him all the time and that was really hard (P5).
Another explained how she could no longer look after
her grandsons:
I would love to be able to look after the two lads. Grannies
are supposed to look after their grandkids but I wouldn’t be
able to do that (P1).
Being unable to participate in certain sport activities has
changed how P11 and her father spend their time together:
With my dad, he is really sporty and loves the outdoors. It was
always me and my dad that did things together. He used to come
to all my camogie games, we would go cycling every Sunday
and we climbed together. I mean, we are still as close but it has
changed what I do with him.
Fatigue management strategies
Participants discussed a variety of strategies for managing
their fatigue in order to enable them to participate in valued
occupations. These strategies were developed over time as
participants learned to accommodate their SLE and become
familiar with the patterns of their fatigue. Reported strategies
are grouped into intrapersonal strategies and external supports.
Intrapersonal strategies
Intrapersonal management strategies involved periods of
cognitive adjustments where participants discussed ‘accepting’
their limitations followed by a shift of focus from limitations
to abilities:
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Deirdre Connolly, Aine McNally, Deirdre Moran, and Margaret Ryan
I’ve learned to live with it and become more positive. That is
one of the major things I have to work with on a daily basis is
positive thinking (P4).
I have become a more mellow person and so now I try to let
things wash over me because if I get worried or stressed it
doesn’t do me any favours (P12).
You can’t get as involved as you might like to. The old me would
have been stuck in the middle of it all. The new me is more
reserved (P9).
Participants also spoke of changing their attitudes in
relation to what they considered important in their lives.
For example, due to limited energy levels, P12 made choices
between spending time with family or friends:
It was a case of if I wanted to be okay during the day for the
children and my husband, then going out in the evenings
was not an option. I couldn’t have both so I chose what was
more important to me (P12).
Another cognitive adjustment identified was how partici-
pants altered their expectations of themselves:
I used to think ‘I must have the house clean, I must have this
done, I must have that done, I must be the perfect person’.
But now I say ‘you can do that tomorrow’. But it took years
for me to realize that (P10).
Becoming more adaptable involved participants learning
to do things differently and be more flexible
I’ve learned through experience to pace myself, take it easier,
and rest a little bit if I want to do something. If I want to go
to a function, I go to bed for an hour or two before (P7).
External supports
External supports for managing and reducing fatigue involved
taking up activities generally recognized as stress-relieving
and relaxing, and getting help and support from family and
friends. None of the participants discussed input from health
professionals on managing their fatigue.
A range of complimentary therapies including yoga, Pilates,
meditation, acupuncture, and massage were employed by
seven participants. These participants identified how this
helped them to relax, thereby reducing their fatigue. However,
one participant (P8) who had tried a number of complimen-
tary approaches reported that pacing her activities was the
most effective for her.
Family, friends, neighbours, and members of support
groups were identified as providing invaluable support and
practical help. This support ranged from hands-on help with
housework and childcare to emotional support:
My partner is brilliant. He works full time. He comes home
and cooks the dinner every day. I’m so lucky he understands
my illness, and doesn’t get annoyed or irritated with me being
tired all the time (P8).
My sisters are great. They understand my mood swings and the
whole lupus thing. I know some people think that I am lazy
but my family understands what I am going through (P4).
British Journal of Occupational Therapy July 2014 77(7) 377
Fatigue in systemic lupus erythematosus: impact on occupational participation and reported management strategies
In summary, fatigue was described as an unpredictable
and constant feature of SLE. Many factors were identified as
increasing fatigue, with stress being most frequently discussed.
Fatigue affected a wide range of occupations, with work and
leisure most frequently identified. Continued participation in
employment required modifications to work routines and work
environments. Participants discussed needing to be organized
but at the same time flexible in order to manage their fatigue.
None of the participants reported having received interven-
tions for fatigue management from health professionals.
Discussion
An episodic and unpredictable pattern of fatigue was
described by study participants, highlighting that this might
be a common feature of fatigue in SLE. However, this needs
further research to establish whether others with SLE report
similar patterns to their fatigue. The episodic and inter-
mittent nature of fatigue reported by the study participants
appears to be different from the more predictable pattern of
other chronic conditions such as multiple sclerosis (MS) (Smith
and Hale 2007). This, therefore, makes it more difficult for
the study participants to plan activities ahead of time or to
apply pre-established strategies for managing their fatigue.
If this finding is validated through a larger study, it could
be important information to include in fatigue management
education so that others are prepared for potential episodes of
sudden onset fatigue and learn to not be self-critical if planned
activities have to be altered or cancelled. Participants also
discussed long periods without fatigue followed by a sudden
onset of fatigue, indicating a need for ongoing education on
effective fatigue management for the study participants.
In the interviews, stress, joint pain, and physical activities
were all factors identified as increasing fatigue. Participants
discussed the importance of managing stress in order to
reduce fatigue. This was also a finding in the social category
of the FIS, with high scores from participants on the item
‘I avoid situations that are stressful for me’. Strategies for
managing stress are often included in fatigue management
programmes (Connolly et al 2013). Increasing awareness
of other factors that increase fatigue, such as joint pain and
physical activity, may also need to be highlighted in fatigue
management education for people with SLE.
With respect to occupational participation, participants
identified most difficulties with work and leisure occupations.
In this study, five of the 12 participants were involved in
some degree of paid employment. It has been estimated that
only half of people with SLE remain in employment, resulting
in the majority of the economic costs associated with SLE
(Almehed et al 2010). A greater tendency towards sedentary
work was reported by Almehed et al (2010) for people with
SLE compared to the general population. In this study, two
participants changed from nursing to office-based careers,
which better suited their fatigue levels. This finding aligns
with high scores on the item ‘ability to sustain physical
activity’ on the FIS physical functioning category. Participants
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who were working also identified the importance of support
from their employers; however, not all received the same
level of support. This indicates the importance of educating
employers on the impact of fatigue on productivity levels and
on strategies that can be used in the workplace to manage
fatigue. These can include making changes to work environ-
ments to reduce the energy output for employees with SLE or
other fatigue-related diseases. The need for direct interventions
to reduce work-related disabilities has also been recognized
in Canadian research (Somers et al 2007). This could include
work-specific fatigue management programmes, which
identify strategies for managing fatigue in the workplace.
In the interviews, home-based occupations were also
identified as increasing fatigue, with many seeking assistance
from family members. This was also evident in high scores
on an item of the FIS social category ‘I have to rely on others
to help or do things for me’. Energy conservation strategies
for people with fatigue-related chronic conditions, as out-
lined by Stout and Finlayson (2011), such as delegating or
altering methods for completing activities, may, therefore,
be helpful. Additionally, those with SLE may need guidance
in prioritizing valued occupations and accepting help for
low priority activities. Making these decisions appears to be
an important element of the attitudinal changes, identified
in this study, which are required to manage fatigue.
Self-care and work-related occupations are often priori-
tized over leisure occupations by people with chronic con-
ditions (Cahill et al 2010). However, the importance of
engaging in leisure activities for physical and mental well-
being has been clearly documented (Paganini-Hill et al 2011).
In this study, the majority of participants continued to under-
take some form of leisure activities although they identified
having changed their leisure interests from physical-based to
more sedentary activities. This supports the value attached
to leisure participation and, consequently, the importance of
occupational therapists addressing this area early post-diagnosis
so that assistance can be given in maintaining involvement
in leisure activities.
Fatigue management strategies
Fatigue management strategies varied among study partici-
pants. All discussed internal and external strategies to manage
fatigue. External strategies are similar to those used by people
with other chronic diseases such as MS and arthritis-based
diseases (Harrison 2007, Kralik et al 2005). What came out
frequently, however, was the range of cognitive strategies
and attitudinal adjustments that the study participants made
to accommodate their fatigue.
The participants discussed how, over time, they changed
how they viewed their disease. They described accepting
limitations imposed by the disease process and accepting
help from others. They also identified the importance of
changing from complaining about their disease to taking a
positive attitude and being flexible in relation to what they
achieve over the course of their day. This flexibility appears
to be important in managing the unpredictability of SLE-related
fatigue, which participants identified when describing the

nature of their fatigue. This change in attitude could be viewed
as ‘giving in’ to occupational limitations caused by fatigue.
However, perhaps a more positive way of considering this
is as an empowering approach to managing fatigue, of
taking control of the disease rather than the disease taking
control of the person. Strategies for making these attitudinal
changes could be included in fatigue management pro-
grammes for people with SLE. Cognitive behavioural
strategies facilitate changes in a person’s thinking patterns
to impact positively on their behaviours (Early 2000). Using
such an approach in fatigue management education, occupa-
tional therapists could facilitate attitudinal changes to fatigue
in order to increase participation in valued occupations.
Participants also discussed shifting priorities within
their personal lives as another way of managing fatigue.
When energy levels are low or limited, choices have to be
made about how to use energy efficiently. Literature in
relation to energy management discusses setting priorities
in relation to occupational participation, and making
choices regarding when and how occupations are performed
(Smith and Hale 2007). However, the participants in the
current study also discussed making priorities in relation
to with whom they choose to spend time. They spoke of
choosing family members over friends or engaging in
social activities. These attitudinal and emotional decisions
appear to be an important element of managing fatigue in
SLE. It is interesting to note that none of the participants in
this study received any input from healthcare professionals
in recognizing the need to make these cognitive adjustments.
Perhaps such input would help in making what can be diffi-
cult decisions earlier in the disease trajectory, thereby avoid-
ing having to withdraw completely from work and valued
leisure activities.
Many study participants discussed difficulty accessing
fatigue-specific information when diagnosed with SLE. As
a result, the majority of their fatigue management strategies
were acquired through trial and error and talking with others
with SLE on an ad hoc basis. This is similar to the Australian
study whose participants also spoke of lack of education and
guidance immediately post-diagnosis (Kralik et al 2005).
These findings support early and timely interventions from
health professionals on the nature of fatigue in SLE and
appropriate fatigue management strategies.
Conclusion
This study provides personal accounts of how fatigue in SLE
affects occupational participation. However, a limitation of
the study is that, as it was not a clinical-based sample, medical
confirmation was not available with respect to participants’
fulfilment of SLE diagnostic criteria or pathology of their
lupus. Therefore, their fatigue may be related to a different
health issue. Despite this, however, the findings indicate that
fatigue is problematic for these participants and impacts
on many facets of their lives. SLE is not a widely prevalent
disease, particularly when compared to other inflammatory
Downloaded from bjo.sagepub.com at KAI NAN UNIV on March 3, 2015
Deirdre Connolly, Aine McNally, Deirdre Moran, and Margaret Ryan
arthritic diseases. Therefore, perhaps it lacks prioritization
among health professionals. Further research is required to
explore this possibility.
It is hoped that this study contributes to an increased
understanding of fatigue in SLE. The findings suggest that,
unlike other chronic diseases, fatigue in SLE does not present
with a consistent pattern. It is, perhaps, this unpredictability
that makes it a particularly difficult symptom to manage.
However, further research is needed to confirm this finding.
This study has also highlighted the role of cognitive and atti-
tudinal strategies in managing fatigue, in addition to practical
approaches. These are, therefore, important components to
include in fatigue management education and interventions
for people with SLE.
Key findings
■ For the participants of this study, fatigue in SLE was reported as
unpredictable and impacting mainly on productivity and leisure.
■ A combination of intrapersonal and external strategies was used by
study participants to manage their fatigue.
What the study has added
This study contributes towards an increased understanding of fatigue in
SLE and has indicated a need for early fatigue management interventions
for people with SLE.
Conflict of interest: None declared.
Funding: This research received no specific grant support from any funding
agency in the public, commercial, or not-for-profit sectors.
Research ethics: Ethical approval for the study was given by the Health
Sciences Research Ethics Committee, Trinity College, Dublin (REF NUMBER
TO COME).
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Jackie Pool
Call for papers
Special Issue — Dimensions of dementia: the unique contribution of occupational therapy
The Editorial Board of the British Journal of Occupational Therapy
will publish a special issue in 2016 on the topic of ‘Dimensions
of dementia: the unique contribution of occupational therapy’.
This special issue will provide an international forum for
research papers, critical reviews, practice analysis, and opinion
pieces relevant to theory, practice, research, education, and
management related to occupational therapy’s contribution to
dementia care. We are specifically looking for articles that
explore the unique skill mix of occupational therapy as assessed
by empirical research, and articles that address the different
dimensions of the experience of dementia.
The special issue will be guest edited by Jackie Pool,
CEO of Jackie Pool Associates Ltd, and Dr Lesley Collier,
Senior Lecturer in Occupational Therapy at the University
of Southampton and a member of the British Journal of
Occupational Therapy’s Editorial Board.
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Dr Lesley Collier
Manuscript submissions are welcome within any of the
article categories listed in the Author’s Guide. Priority will
be given to manuscripts that will have a direct impact on
practice or policy. For further information see http://
www.cot.co.uk/contribute-and-submit-bjot/submit-bjot-
articles-online.
Manuscripts should be submitted in the normal manner
via http://mc.manuscriptcentral.com/bjot and will undergo
peer review. Authors should indicate clearly in their cover-
ing letter and at the end of the abstract that they wish their
submission to be considered for inclusion in the ‘Dimensions
of dementia’ special issue.
The deadline for submissions is 24 November 2014.
Please send any enquiries in the first instance to: Dr
Katharine Norman, Editor, email: katharine.noman@cot.co.uk,
Tel: +44 (0)20 7450 2338.