The lived experience of sleep disturbance in people with Parkinson’s disease
Kitty M Suddick
School of Health Professions
University of Brighton
Robert Dodd Building
49 Darley Road
suddick km & chambers s (2010) Journal of Nursing and Healthcare of Chronic Illness2, 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 analysed.
Results. The themes that emerged regarding sleep disturbance in PD were: ‘good and bad’ sleep, a worsening journey, the experience of uncertainty, and the experience of loss.
Conclusions. Sleep disturbance and ‘good and bad’ sleep, had significant implications 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.
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 maintenance, 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 factors 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.
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 (Söderberg 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, prioritising 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.
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 disturbance 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 appropriately and effectively, thereby improving patient care and QOL for those with PD and their carers (Crabb 2001).
The aim of this study was to explore the experience of sleep disturbance for people with PD.
This study used a phenomenological research paradigm which was aligned to the interpretive approach of Heideggerian hermeneutics (Smythe et al. 2008).
A convenience sample of five people with PD was recruited. The sample size was small, but appropriate for phenomenological 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 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 verbatim. 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.
The data was thematically analysed (Lindseth & Norberg 2004). This included naïve 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 naïve reading. Further reading and checking of the transcripts; the parts, and the whole, was undertaken. The researcher continuously reflected on their preunderstanding, 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 thematic analysis was grounded within the data collected and lived experience of the participants (Tobin & Begley 2004).
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.
All the participants were male. They ranged in age from 57–76 years (SD 7·2) and from 2–11 years (SD 5·3) 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 disturbance 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 managed 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 nightmares. 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 participants 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 therapist 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 disturbance.
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 minimise 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 worsening 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 uncertainty. 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 experienced 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 pm until 2 am, when he would be woken by his tremor, take more tablets, then return to bed only to wake at 4 am 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)
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 maintenance 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 disturbance 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 discussing 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 relationships 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 knowledge 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, reassurance 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 comparison, 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 disturbance 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, circumstances 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 Guidelines (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 & Ahlström 2008), those receiving intermediate care (Burton 2000, Benten & Spalding 2008) and their carers (Hunt & Smith 2004, Bäckström & 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 < 0·001) (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 interventions 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 programmes 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 interviews 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 consideration 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 interpretation 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.
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.
Study design: KMS, SC; data collection and analysis: SC and manuscript preparation: KMS.
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.