The lived experience of sleep disturbance in people with Parkinson’s disease

ORIGINAL ARTICLE doi: 10.1111/j.1752-9824.2010.01070.x

The lived experience of sleep disturbance in people with Parkinson’s

disease

Kitty M Suddick BSc, MSc, PG Cert

Senior Lecturer, School of Health Professions, University of Brighton, Eastbourne, East Sussex

Simon Chambers BSc, MSc

Physiotherapist, Whittington Hospital NHS Trust, Archway, North London, UK

Submitted for publication: 11 June 2010

Accepted for publication: 26 September 2010

Correspondence:

Kitty M Suddick

School of Health Professions

University of Brighton

Robert Dodd Building

49 Darley Road

Eastbourne

East Sussex

BN20 7UR

Telephone: 01273643516

E-mail: [email protected]

SUDDICK KM & CHAMBERS S (2010)SUDDICK KM & CHAMBERS S (2010) Journal of Nursing and Healthcare of

Chronic Illness 2, 292–301

The lived experience of sleep disturbance in people with Parkinson’s disease

Aims and objectives. This paper reports on an exploratory study of the lived

experience of sleep disturbance in a group of men with Parkinson’s disease (PD).

Background. Research into sleep disturbance in PD has focused on determining

prevalence, causative factors, and relationships between the signs and symptoms.

Sleep disturbance has not been previously explored from the perspective of the

person experiencing it.

Design. An interpretive phenomenological approach, aligned with Heideggerian

hermeneutics was used.

Method. A convenience sample of five people from the UK with PD participated in

interviews in 2007–2008. Interviews were transcribed and data thematically anal-

ysed.

Results. The themes that emerged regarding sleep disturbance in PD were: ‘good

and bad’ sleep, a worsening journey, the experience of uncertainty, and the expe-

rience of loss.

Conclusions. Sleep disturbance and ‘good and bad’ sleep, had significant implica-

tions for the person with PD and their carer. People with PD may accept or fight

their sleep disruption, use, restrict, or avoid activity, and give up hobbies and

sharing the marital bed. Sleep disturbance meant being part of a worsening journey,

and experiencing loss and uncertainty. These may be inseparable essences of living

with a progressive neurological condition.

Relevance to clinical practice. Sleep disturbance needs more recognition and

improved management. Health professionals may need to better consider issues

around uncertainty and loss, and coping with the worsening journey. Services that

develop coping styles, self efficacy, and self management, and introduce structured

ways of providing education, advice, and ongoing support are needed. This supports

the nurse specialist role in PD.

Key words: lived experience, nursing, Parkinson’s disease, Parkinson’s disease nurse

specialist, phenomenology, sleep disturbance

292 � 2010 Blackwell Publishing Ltd

Introduction

Parkinson’s disease (PD) is the second most prevalent

neurodegenerative disorder (Caap-Ahlgren & Dehlin 2001).

The condition affects the dopamine producing neurons of the

basal ganglia (Booij et al. 1999), and leads to motor and non-

motor symptoms which significantly impact on quality of life

(QOL) (Ziemssen & Reichmann 2007).

Sleep related problems in PD were first reported in James

Parkinson’s original monograph about the disease: ‘His

attendants observed, that of late the trembling would

sometimes begin in his sleep, and increase until it awakened

him: when he always was in a state of agitation and alarm’

(Parkinson, 1817, cited by Mitra & Chaudhuri 2009). Since

then research has supported the occurrence of sleep problems

in 60–90% of people with PD (Mitra & Chaudhuri 2009).

This can include problems with sleep initiation and mainte-

nance, sleep timing dysfunction, parasomnias (Schmidt-

Nowara 2003), reduced total sleep time, sleep efficiency, an

increased number of sleep arousals and fragmentations of

sleep (Dhawan et al. 2006), restless legs syndrome, excessive

day-time sleepiness (EDS), rapid eye movement (REM) and

sleep behaviour disorder (Chaudhuri et al. 2006). Despite

this, people with PD can experience a positive consequence of

sleep: sleep benefit (SB) (Garcia-Borreguero et al. 2003).

However, evidence as to who benefits most has been

contradictory (Comella et al. 1995, Currie et al. 1997).

Causes of sleep disturbance in people with PD are

extensive, varied, multi-factorial and interdependent. They

can relate to motor and non-motor symptoms associated

with the condition, medications (Ziemssen & Reichmann

2007), depression, dementia and anxiety (Borek et al.

2006), sleep apnoea (Chaudhuri et al. 2006) and pain

and ache (Caap-Ahlgren & Dehlin 2001). Literature has

produced contradictory results about which causative fac-

tors are most important for sleep disturbance (Pal et al.

2004), with research varying in size and nature of

populations studied, tools used, and their reliability and

validity for people with Parkinson’s. This paper will present

a summary of the research literature in this area, and the

research study into the experiences of sleep disturbance in

people with PD. The study findings will be discussed in

light of the current evidence base. The clinical relevance of

the findings and recommendations from this study will then

be presented.

Background

Parkinson’s disease has significant implications for healthcare

associated costs (Dodel et al. 2001). The direct and indirect

burden of PD to the individual, their carer, society and

healthcare services are therefore significant, and have been

researched in a number of countries (Cordato et al. 2006,

Noyes et al. 2006, Pohar & Jones 2009).

Sleep disturbance can compromise QOL (Caap-Ahlgren &

Dehlin 2001), lead to impaired functioning in daily activities

(Mitra & Chaudhuri 2009) and contribute to EDS and

fatigue (Dhawan et al. 2006). The effects of sleep disturbance

are widely discussed, but not explored from the individuals’

perspective. Little recognition has been given to partners,

carers or family members who may also be affected.

Research into PD and sleep problems has been quantitative

in nature. It has focused on prevalence and linking symptoms

of PD with sleep disturbance. Only a small number of studies

have been qualitative. These were carried out in different

countries, and all used questionnaires as the data collection

method (Gotham et al. 1986, Lou et al. 2001, Ondo et al.

2001, Kumar et al. 2002). Research has not investigated how

sleep disturbance is managed across different countries or

established the differences and similarities that might exist.

Interviews have been used to collect survey data to investigate

the relationship between insomnia, depression and health

related QOL in PD (Caap-Ahlgren & Dehlin 2001), not to

explore the experience in any depth.

Other studies have explored the experiences of people with

chronic conditions but not PD, and have focused on fatigue

only. Women with fibromyalgia who experienced fatigue and

tiredness saw their body as an absent presence, an interfering

obstacle and a burden (Soderberg et al. 2002). MS related

fatigue was experienced as time consuming and all absorbing.

It influenced perceptions of the body and produced negative

emotions such as sorrow, despair and sadness (Flensner et al.

2003). Participants reported planning, structuring, prioritis-

ing and assistance as a necessary part of their bodily presence.

Some talked about activating a fighting spirit. Being realistic,

accepting and living within ones’ limits and abilities helped

them, as did knowledge about the condition and situations

when fatigue normally occurred (Flensner et al. 2003).

Acceptance and downward comparison were also reported

as successful coping strategies in patients with rheumatoid

arthritis (Repping-Wuts et al. 2008). Fatigue was variable

and individual, it influenced relationships, the everyday

things they could do, and the things they had to give up

(Repping-Wuts et al. 2008). In half those interviewed fatigue

was considered more bothersome than pain, and a few of the

participants, although it was unclear how many, explained

they slept less and had reduced sleep quality (Repping-Wuts

et al. 2008). Whether similar themes would emerge relating

to sleep disturbance, and in people with PD has yet to be

established.

Original article Experiences of sleep disturbance in Parkinson’s disease

� 2010 Blackwell Publishing Ltd 293

The evidence base for the treatment of sleep disturbances

in people with PD is poor (Dhawan et al. 2006, Pandya

et al. 2008). In a comprehensive review of the literature,

Dhawan et al. (2006) identified a lack of robust trials that

specifically investigate the treatment of sleep dysfunction in

PD. The evidence supporting the treatment of EDS,

nocturnal akinesia, and REM behaviour disorder has only

been partly addressed with limitations in the population

sizes and methodological designs (Dhawan et al. 2006,

Muzerengi et al. 2007). Intervention studies have focused

on medication and surgical management and have produced

contradictory results (Pandya et al. 2008). The clinical

guideline for PD developed in the UK discussed the limited

evidence in relation to these interventions – reporting all

recommendations as the lowest grade of evidence base

(National Institute for Health and Clinical Excellence,

2006). A protocol has been submitted to the Cochrane

Collaboration to undertake a review into the therapeutic

interventions for sleep disorders in PD, but this has yet to

be published.

Improved understanding of the experience of sleep distur-

bance is necessary to assist health professionals in ensuring

that they address the needs of people with PD. Improved

knowledge and understanding would guide further research

into this area. It would ensure that nurses are assessing

holistically, supporting, referring and intervening appropri-

ately and effectively, thereby improving patient care and

QOL for those with PD and their carers (Crabb 2001).

Aim

The aim of this study was to explore the experience of sleep

disturbance for people with PD.

Methods

This study used a phenomenological research paradigm

which was aligned to the interpretive approach of Heideg-

gerian hermeneutics (Smythe et al. 2008).

Participants

A convenience sample of five people with PD was recruited.

The sample size was small, but appropriate for phenomeno-

logical research (Nicholls 2009) that aims to generate

understanding about the phenomenon, not generalise findings

(Mapp 2008).

Information sheets were distributed to members of a

support group and people who were interested in taking part

were asked to contact the researcher. Inclusion criteria to

take part required a diagnosis of PD and having experience of

one or more of the following associated with their condition:

• Waking during the night and having difficulty getting

back to sleep.

• A disturbed sleep pattern, causing the individual to take

naps during the day.

• Falling asleep during the day in periods of inactivity.

• A reduced quality of sleep since being diagnosed with PD.

This criterion was developed in line with the research

question, background literature, and was sufficiently broad to

address all the sleep related problems that have been

highlighted as occurring in PD.

Data collection

Data was collected through semi-structured interviews that

were carried out in a private, comfortable room at the

University, except for two, which were telephone interviews.

This was for the convenience of the participants, and

managing the telephone interview and building a relationship

with the participants was given special consideration by the

researcher. Interviews were recorded and transcribed verba-

tim. After each, the researcher undertook a reflective account.

Due to a technical issue, the interview with participant four

did not record. In this instance the researcher documented the

conversation in detail from memory immediately after the

interview had finished.

Analysis

The data was thematically analysed (Lindseth & Norberg

2004). This included naıve reading, and structured thematic

analysis. Interview transcripts were read repeatedly in order

for the researcher to become immersed in the data. Notes

were made on themes that emerged. Transcripts were read

again and key themes were noted. Meaning units of the text

were separated from the whole and organised into groups.

These groups were checked for repetition and alongside the

preliminary naıve reading. Further reading and checking of

the transcripts; the parts, and the whole, was undertaken.

The researcher continuously reflected on their preunderstand-

ing, and used discourse with others and with the text to

deepen their understanding of the experience.

To ensure rigour the process of data analysis was

described in detail and a clear data trail provided. Reflexivity

was used to add credibility and to monitor the journey from

preunderstanding to understanding. The researcher read

through the transcripts multiple times to confirm the

‘goodness’ of the thematic analysis undertaken. All emergent

themes were supported with verbatim quotes. As such, the

KM Suddick and S Chambers


thematic analysis was grounded within the data collected

and lived experience of the participants (Tobin & Begley

2004).

Ethical considerations

Approval was obtained from the University ethics committee.

Permission was obtained from the PD support group to

attend and access its’ members. Written informed consent

was obtained from all participants. They were all provided

with a detailed information sheet before they volunteered. All

individuals were reminded that participation was entirely

voluntary, and that they could withdraw from the study at

any time. They were assured about the confidential nature of

their participation.

Results

All the participants were male. They ranged in age from

57–76 years (SD 7Æ2) and from 2–11 years (SD 5Æ3) since

diagnosis.

Four main themes emerged regarding sleep disturbance:

‘good and bad’ sleep, a worsening journey, the experience of

uncertainty and the experience of loss. There was some

overlap across these themes. The experience of sleep distur-

bance was at times inseparable from the lived experience of

having PD.

‘Good and bad’ sleep

Sleep disturbance in people with PD involved the experience

of ‘good and bad’ sleep. This experience was varied and

individual, and related to the characteristics of good and bad

sleep, the causes, consequences, and the ways people man-

aged and coped.

All participants’ expressed experiences of night time

awakenings as a characteristic of bad sleep, with only one

participant describing his inability to initiate sleep. In mostly

cases this occurred as a result of vivid dreams and night-

mares. Participant 1’s previous experience of injuring his wife

during his sleep had made him fearful; ‘[it] really frightened

me, I’ve told her not to go near me if I get nightmares’. There

were also causes of ‘bad sleep’ that were unique to each

individual: their tremor, a need to cough due to a buildup of

saliva, or to use the toilet.

The amount of sleep participants thought they were getting

and what was considered of good quality varied. One

participant felt that he slept for 3–4 hours but that he needed

8 hours for a proper night’s sleep. Another was getting

4–5 hours sleep a night with 2 hours being of good quality.

Participant 2 would sleep on average for 6 hours a night with

half that amount being what he considered good sleep.

Experiencing the benefit of a good sleep meant that partic-

ipants felt more positive and could get a lot more done in the

day; ‘I’m a spring chicken! [laughs] I think I can run and jump

about’ (Participant 1).

Participant 3 and 4 expressed a benefit of sleep but only in

the form of daytime naps. Participant 2 did not mention any

specific benefits of a good night’s sleep but instead described

the consequences of a bad night:

A bad night’s sleep is when I just can’t get out of bed. Turnover and

lay there and just won’t get up because it’s a strain. Physically it’s a

strain.

The participants recounted varied experiences of tiredness.

These were either linked to their ‘bad sleep’ or the condition

itself:

But as far as Parkinson’s concerned, I’m tired all the time. Mostly.

(Participant 3)

Coping with sleep disturbance and the consequences of bad

sleep was linked to the participants’ experience of having and

managing their PD. Participants 1, 2 and 5 reported that

contact with health care professionals (HCPs) [Parkinson’s

disease nurse specialist (PDNS), speech and language thera-

pist and doctor] as beneficial in managing their medication,

swallowing problems and sleep disturbance. Despite this, two

participants felt they needed more input and more frequent

reviews:

Oh, two and a half years. Two and a half years I haven’t seen a

consultant, I haven’t seen the nurse for two years. Yeah, it would be

about eighteen months, two years…’ ‘…obviously you like to keep up

to date on how your medicine’s behaving and your treatment’.

(Participant 3)

Participants discussed having an active/fighting strategy

(Participant 1, 2) to the condition and/or their sleep distur-

bance.

I think you’ve got to have a good attitude of mind to fight it. I won’t

give in to nothing. I look at it as a personal challenge now. I’ve got it

in my mind, I’ve got Parkinson’s, but Parkinson’s hasn’t got me…

(Participant 1)

Others had a more accepting approach (Participant 3, 4, 5).

This was associated with how they used activity. Participant

1 used activity as a way to pass the time when his sleep was

disturbed, to tire himself out, to keep going, to combat his

daytime tiredness and to help him sleep better at night. This

was similar to Participant 2 who felt he was more active in

the summer months:



... so I expect it to improve when I can do things physically, like get

out and about, go out in the garden, things like that and tire the body

out more than anything and probably sleep better.

Although participant 1 explained that his active/fighting

approach was part of his nature and personality before he

was diagnosed with PD he also felt this contributed to his

‘bad sleep’ – particularly his inability to initiate sleep and

‘switch off.

Conversely, participants 3 and 4 avoided or restricted their

activity to cope with the consequences of their ‘bad sleep’ –

thereby managing their daytime tiredness, energy levels, or

the effects of overexertion on their tremor, rigidity and pain.

When discussing his sleep, participant 3 appeared to mini-

mise how bad it was:

‘I feel if I sleep for two or three hours in the night and then I get up

and I have a… possibly another nap, five or ten minutes some of the

time, and then have a… this sleep in the afternoon, this nap until

three o’clock’, … ‘I’m not too bad. I’m not too bad, I’m not tired…

I’m a bit tired, but not really’.

Participant 5 used downward comparison explaining that his

sleep was not as bad as it would be for someone whose PD

was more longstanding.

A worsening journey

Living with sleep disturbance meant being part of a worsen-

ing journey. Worsening had already been experienced by

these participants, and worsening was certain to occur in the

future.

Participant 1 stated that since the onset of his PD he was

getting increasingly tired during the day, he had to stop full

time work, settle for doing part time or voluntary work, and

stop some of his hobbies. Participant 2 expressed a

temporary worsening of his sleep he thought was related

to the time of year (winter) and his subsequent activity

levels.

Despite participant 1’s fight for control he was aware that

he could not keep his disease in abeyance. Participant 5 dealt

with his current situation on his own, but he also looked to

the future and was aware that this would change:

It’s gone slightly worse’...‘I get the tremors and other things. It’s

advancing slowly’...‘I mean I’m not at the stage where I need a carer

or anything like that’. (Participant 5)

The experience of uncertainty

Living with sleep disturbance meant experiencing uncer-

tainty. This related to the causative factors of their sleep

disturbance, medical management (whether it needed to be

changed or updated), reasons they woke in the night, and

their vivid dreams:

Well you don’t know, because I mean, I’m sorry to be so woolly but

you don’t know whether it’s due to the Parkinson’s or just because

we’re getting ancient. I do get tired sometimes during the day.

(Participant 5)

Participant 1 did not know what was happening during his

vivid dreams or why:

Yeah, I get tangled up in the old quilt, I can’t get out the quilt

sometimes at night and I panic. I suppose that’s because I’ve got

disturbed sleep. Even though I may be asleep, I’m probably jumping

around in my sleep.

He also expressed frustration with HCPs for being unable to

explain or provide reasons why his sleep was affected, leading

him to form his own uncertain conclusions:

I’ve said to the doctors that I fall asleep or the specialist nurse,

Parkinson’s nurse and she said most of them do. She said it’s

something with all the Parkinson’s people do for some reason, but

they can’t make it… I said how do you tell when it’s day or night and

why do I sleep in the afternoons, why am I sleeping in the evenings? I

can’t keep awake in the afternoons. It don’t seem to matter. Whether

it’s something to do with Parkinson’s itself or whether it’s to do with

the drugs side effects.

The experience of loss

All participants expressed the feeling of loss. This included

loss of control over their sleep, sleeping in the same bed as

their wives, and loss of choice, hobbies and work. As a result

of vivid dreams and nightmares Participant 2 and his wife

had chosen to sleep in separate beds. His experience was not

lived or discussed through his eyes only:

Well I miss my cuddle, but apart from that, it’s beneficial both for her

and for me’….. ‘and so she gets some sleep, and I can go to bed later

without having to disturb her.

Participant 4’s vivid dreams also disturbed his wife. As a

result of his restricted mobility this meant his wife had to get

out of bed and go downstairs.

Other losses were not chosen. For the youngest participant:

this had been particularly traumatic:

When I was first diagnosed I was trying to get a job and I got taken

aside and they told me no-one will employ you, you can only do part

time or voluntary, that… and you tell a bloke of forty-four years of

age that he’s washed up, it didn’t go down too well so I took

antidepressants for about six months. (Participant 1)



These participants lost control over their sleep. They expe-

rienced sudden onset sleep:

… I’ve had times when I’ve been in the kitchen talking to my wife

with a cup of tea in my hand, and she’s turned away and I’ve fell

asleep in seconds with a cup of tea in my hand standing up.

(Participant 1)

They were unable to control their night time awakenings.

To manage their sleep disturbance they found themselves

forced into a nightly routine. Participant 4 demonstrated

what appeared to be an unwanted but necessary familiarity

with his night time awakenings. He relied on and increased

his medication, kept a urine bottle by his bed, and had

become accustomed to waking up at the same time every

night. He described going to sleep from 11 PMPM until 2 AMAM,

when he would be woken by his tremor, take more tablets,

then return to bed only to wake at 4 AMAM to use the toilet.

Although sleep was sometimes governed and dictated by

the timing of their medication (Participant 3, 4):

I always get back into bed and I fall off to sleep again, till the

morning when I have some tablets. At six o’clock in the morning I

have an alarm clock that wakes me up at six o’clock and then I go

back to sleep again till seven o’clock when I have some more tablets.

(Participant 3)

It also helped them regain control and keep going. Their

medication was beneficial and a necessity:

Well the tablets keep me going. Without them I can’t function.

(Participant 1)

Discussion

The aim of this study was to explore the experiences of sleep

disturbance for people with PD. Each experience was

individual, unique and variable. The findings suggested that

good sleep may relate to the amount, pattern and quality of

sleep. All participants experienced some form of daytime

sleepiness which was varied, but similar to descriptions given

elsewhere (Dhawan et al. 2006). Research has supported that

EDS is more related to age, rather than having PD (Van

Hilten et al. 1993). Two participants in this study felt their

age contributed to their sleep problems, but did not explicitly

link this to their EDS. Other research has demonstrated no

relationship between age, severity, duration of treatment, or

PD with sleep disturbance (Pal et al. 2004). The findings of

this study concurred that sleep fragmentation and mainte-

nance was the most common sleep disruption (Friedman &

Chou 2004), with only one participant talking about a sleep

initiation problem.

Fatigue was commonly reported in this study but not

explicitly by all. Experiences of fatigue were mostly physical,

with only one participant describing components of both

mental and physical fatigue. Lou et al. (2001) found a

significant relationship between mental fatigue and reduced

motivation which may have been a factor in this participant.

In most instances, the experience of fatigue was not all

consuming. It was not significantly linked to their bodily

presence and the severe negative emotions, as reported in

people with MS (Flesner et al. 2003). Fatigue alongside sleep

disturbance in Parkinson’s may be experienced differently

from MS related fatigue. Fatigue may be a separate entity to

sleep disruption, may precede the PD (Friedman & Chou

2004), and be a precursor to the motor symptoms and the

subsequent diagnosis. The cause, course and treatment

remain predominantly unknown and unanswered (Friedman

& Chou 2004). ‘Good and bad’ sleep did have a positive and

negative influence on the study participants. Bad sleep

interfered and meant the loss and giving up of things.

Rheumatoid arthritis patients have reported similar effects

from fatigue (Repping-Wuts et al. 2008). As part of the lived

experience for these individuals with PD, their sleep distur-

bance meant they did not share their marital bed and lost

intimacy with their wives, were uncertain and fearful about

what happened in their sleep, struggled to start the day, gave

up hobbies and avoided activities.

In this study, physical reasons for sleep disturbance were

reported as age, nocturia, swallowing problems, tremor,

restlessness and vivid dreams. As nocturia can cause night

time awakenings (Dhawan et al. 2006, Pandya et al. 2008),

improved management could reduce sleep disruption. Despite

insufficient evidence to support the effectiveness of specific

targeted interventions a number of authors have proposed

that improved management of the causative factors of sleep

related problems, including nocturia, should result in

improved sleep (Garcia-Borreguero et al. 2003, Dhawan

et al. 2006). Further research is needed to substantiate these

claims. HCPs may need to be more pro-active when discuss-

ing and addressing the possible causative problems. This

suggests a clear role for PDNSs in the UK (Crabb 2001) and

specialist support workers in other countries.

Parkinson’s disease nurse specialists were first introduced

over 20 years ago in the UK to address an unmet need for

direct access, ongoing advice, education, support, assessment,

co-ordination and provision of services for people with PD

(Osborne 2009). Their role is extensive from advising on

specific management issues, providing emotional and social

support, coordinating case management, care and referrals,

and increasing awareness about the condition (Reynolds

et al. 2000).



Although evidence to support the role of the PDNS in a UK

community setting has demonstrated limited change in

clinical measures it has shown benefits for subjective health

and well being (Hurwitz et al. 2005). Despite this, more than

one in four people in the UK have never spoken to a PDNS

(All Party Parliamentary Group for Parkinson’s Disease,

2009). Increased recognition and provision of PDNSs for the

management and support of people with PD may need to be

considered.

Only one participant mentioned depression, which was not

specifically linked to their sleep disturbance. This was in

sharp contrast to the high prevalence, and strong relation-

ships found elsewhere (Pal et al. 2004, Suzuki et al. 2009).

This small exploratory study cannot provide evidence for

causal relationships. As the participants were all males,

married and members of a local support group, they would

have had access to more support and information. They may

also have been reluctant to disclose information regarding

depression and anxiety. Research has shown that emotional

disclosure is less likely amongst individuals with higher

symptoms of depression and anxiety (Kahn & Garrison

2009). Until more interview based research is carried out on a

broader sample over time, we will not be fully aware of the

meaning of sleep disturbance and its’ related/coexisting

symptoms such as EDS and fatigue for people living with

them on a day to day basis.

Vivid dreams have been recognised as a common form of

sleep disturbance in people with PD (Garcia-Borreguero et al.

2003). This was experienced by the majority of participants,

had a significant effect on their wives, and at times, elicited

strong feelings of anxiety and fear for those experiencing

them. Pal et al. (2004) have demonstrated a correlation

between the sleep disturbance of spouses and their partners

with PD. Sleep disturbance was present in 40% of caregivers

(Pal et al. 2004), and it may be even greater for those living

with people with severe cognitive and emotional deficits.

More aggressive and earlier management is needed (Pal et al.

2004). Educational programmes may play an important role

in the management of PD and sleep disturbance. Research

into a patient education programme that focused on knowl-

edge and skills for self monitoring, health promotion, stress

management, depression, anxiety, and social competence and

support (Macht et al. 2007) demonstrated improved mood

and psychosocial outcome across the European countries

involved. Further exploratory research would improve

understanding and assist in more effective education, reas-

surance and management for people with PD and their family

members at various stages of living with the condition.

This study demonstrated that some people appeared to

actively attempt to change their situation or ‘fight’ the

problem, others accepted it, some used downward compar-

ison, distraction, and aspects of minimisation, as ways of

coping. This corresponds in part with previous research into

fatigue in other patient populations (Flensner et al. 2003,

Repping-Wuts et al. 2008). However, why these ways of

coping were adopted was not clear. It may have been linked

to personality, severity of their condition, or to other factors,

which may be extensive. There may be differences between

genders (McCabe et al. 2009) and as the disease progresses.

Coping is a complex organisational construct involving a

myriad of actions that individuals use to deal with stressful

situations (Skinner et al. 2003). Research is needed to

identify specific coping styles used to manage sleep distur-

bance in PD, how they are used, and which are most effective.

It is entirely likely that people use transactional coping: a

number of strategies dependent upon the situation, circum-

stances and their own experiences, history, culture and beliefs

(Folkman & Lazarus 1980).

Altered dream experiences have been linked with drug

management (Garcia-Borreguero et al. 2003). The findings

supported a perceived link between medication and sleep

disruption, but not vivid and altered dreams. Medication was

being used concurrently to manage sleep disturbance. Some

of the participants were satisfied with how their medication

was working and how often they were reviewed. This was not

always the case and did not correspond with the 6 month–

1 year review period advocated by the UK National Guide-

lines (National Institute for Health and Clinical Excellence,

2006). How services and health professionals approach the

interaction between themselves and people with PD may also

need more consideration. Uncertainty and loss is experienced

by people with other neurological conditions (Burton 2000,

Hunt & Smith 2004, Isaksson & Ahlstrom 2008), those

receiving intermediate care (Burton 2000, Benten & Spalding

2008) and their carers (Hunt & Smith 2004, Backstrom &

Sundin 2007, Ray & Street 2007). These may be significant

integral aspects of living with a neurological condition. How

people with PD experience and cope with the worsening

journey may also need particular consideration. What

remains unknown and unanswered in the field of neurology

is vast. As such, dealing with uncertainty is a challenge for

health professionals. We may need to improve our ability to

listen, to understand, and to better discuss possibilities,

otherwise we may appear disinterested in peoples’ concerns,

unhelpful in answering their questions, and supporting their

individual, unique needs. Greater use of methods to increase

feelings of control when living with PD may be needed. This

might be provided through better education, involvement in

decision making, and may include methods to encourage

medium level optimism (De Ridder et al. 2000), and promote



self efficacy (Doyle Lyons 2003) – something that has become

increasing valued in services for people after stroke (Jones

et al. 2009) and in relation to sleep in coronary heart disease

(Johansson et al. 2007).

Activity was used differently by people to manage their

sleep disturbance and daytime sleepiness. Physical fatigue has

been shown to relate to reduced activity (p < 0Æ001) (Lou

et al. 2001), and people with PD may be more prone to

becoming less active (Hirsch 2009). Energy conservation

courses have been effective in addressing fatigue in people

with MS (Mathiowetz et al. 2001, 2005). In people with

early PD, physical activity was considered a way to slow and

gain control over their disease progression, but they needed

support and improved advice and information to achieve this

(Ravenek & Schneider 2009). Research that explores the

efficacy of education provision and these types of interven-

tions for people with PD is warranted. Understanding the role

of activity would equip HCPs in providing information,

advice and education. The findings from this study suggested

that for some, there may be a seasonal influence. Services may

need to consider methods that would promote and support

more regular activity such as indoor group exercise pro-

grammes in the winter.

Relevance to clinical practice

Health care professionals may need to evaluate their practice,

ensuring that they address, and discuss the causative factors

and management options for sleep disturbance with people

with PD. Services should promote self efficacy, address issues

of loss, worsening, uncertainty, and the role of activity,

education and fatigue management. Nurse specialists should

have a key role in providing education, advice, ongoing

support, reviewing medication, and encouraging autonomy,

self efficacy and coping.

Strengths and limitations

Although phenomenological research acknowledges the need

for small sample sizes, this limits the generalisation of the

findings. The study participants were all male, married and

recruited from one local support group within the UK. Other

people in different circumstances, locations and countries

may have different experiences. Although every effort was

made to maintain rigour within the research procedure and

the alignment of the methodology and methods, there were

limitations. One interview did not record and two interviews

were carried out by telephone. In the first instance, important

information could have been omitted. The telephone inter-

views may have limited the development of the relationship

between the interviewer and interviewee, and the observation

of non-verbal aspects of communication. This could have

impacted on the experiences reported and level and depth of

sharing that participants felt comfortable with. Managing the

telephone interviews effectively was given special consider-

ation by the researcher. The transcripts and the reflective

accounts indicated that these interviews flowed and provided

a similar depth and breadth of data compared to the face to

face interviews. Carrying out the interviews over the phone

had been at the request of the participants. This may have

meant that they felt more in control and relaxed during the

conversation.

This study was aligned with interpretative phenomenology.

As such, findings are an offering of thinking and interpreta-

tion by the researcher. It is a snapshot in time – both at the

time of data collection, and time of writing (Smythe et al.

2008). Returning to and re-interviewing the participants

would have enhanced confirmability (Fleming et al. 2003)

and the richness of the data. This study can generate a

preliminary understanding and offer suggestions that will

require further exploration and investigation.

Conclusion

This study was exploratory and interpretive in nature. It can

therefore only provide a starting point from which further

research into sleep disturbance from the perspective of the

person with PD can develop. Improved awareness and

consideration of sleep disturbance is needed both within the

management of the condition, and the services provided.

Research to explore the experiences of people with sleep

disturbance and their carers is needed. Organised programmes

that aim to address sleep disturbance, fatigue, and their related

and coexisting signs and symptoms are required. Services may

need to address issues around uncertainty, loss, coping, self

efficacy and the role of activity. They may need to provide

improved support, advice and education to help people cope

with the worsening journey. They should be developed in

line with patients and carers needs, and be evaluated to

develop the evidence base in this under researched area.

Contributions

Study design: KMS, SC; data collection and analysis: SC and

manuscript preparation: KMS.

Funding

This research received no specific grant from any funding

agency in the public, commercial, or not-for-profit sectors.



Conflict of interest

No conflict of interest has been declared by the authors.

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The lived experience of sleep disturbance in people with Parkinson’s disease