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Exploring the experience of sleep and fatigue in male and female adults over the 2 years following traumatic brain injury: a qualitative descriptive study
  1. Alice Theadom1,2,
  2. Vickie Rowland1,2,
  3. William Levack3,
  4. Nicola Starkey4,
  5. Laura Wilkinson-Meyers5,
  6. Kathryn McPherson1,6
  7. on behalf of the TBI Experiences Group
    1. 1Person Centred Research Centre, Auckland University of Technology, Auckland, New Zealand
    2. 2National Institute for Stroke and Applied Neuroscience, Auckland University of Technology, Auckland, New Zealand
    3. 3Rehabilitation Teaching and Research Unit, University of Otago, Wellington, New Zealand
    4. 4School of Psychology, University of Waikato, Hamilton, New Zealand
    5. 5School of Population Health, University of Auckland, Auckland, New Zealand
    6. 6The Health Research Council of New Zealand, Auckland, New Zealand
    1. Correspondence to Alice Theadom; alice.theadom{at}aut.ac.nz

    Abstract

    Objectives To explore the experience of fatigue and sleep difficulties over the first 2 years after traumatic brain injury (TBI).

    Design Longitudinal qualitative descriptive analysis of interviews completed as part of a larger longitudinal study of recovery following TBI. Data relating to the experience of fatigue and/or sleep were extracted and coded by two independent researchers.

    Setting Community-based study in the Hamilton and Auckland regions of New Zealand.

    Participants 30 adult participants who had experienced mild, moderate or severe brain injury within the past 6 months (>16 years of age). 15 participants also nominated significant others to take part. Interviews were completed at 6, 12 and 24 months postinjury.

    Results Participants described feeling unprepared for the intensity, impact and persistent nature of fatigue and sleep difficulties after injury. They struggled to learn how to manage their difficulties by themselves and to adapt strategies in response to changing circumstances over time. Four themes were identified: (1) Making sense of fatigue and sleep after TBI; (2) accepting the need for rest; (3) learning how to rest and; (4) need for rest impacts on ability to engage in life.

    Conclusions Targeted support to understand, accept and manage the sleep and fatigue difficulties experienced may be crucial to improve recovery and facilitate engagement in everyday life. Advice needs to be timely and revised for relevance over the course of recovery.

    • Fatigue
    • Brain Injury
    • QUALITATIVE RESEARCH
    • Longitudinal

    This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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    Strengths and limitations of this study

    • The use of qualitative methods facilitated an in-depth exploration of the experience of fatigue and sleep after brain injury.

    • The longitudinal design enabled exploration of changes over time and influence within the wider recovery journey.

    • Since participants were sampled from a larger qualitative study on what helps or hinders recovery following traumatic brain injury, data were participant led rather than being a response to direct questioning about sleep and fatigue.

    • The study did not measure or explore the cause of sleep or fatigue difficulties and it remains unclear as to the extent to which difficulties were directly related to the injury.

    • While diversity in experience was captured through the sampling approach, findings may not be generalisable to TBI populations in other communities.

    Introduction

    Sleep difficulties and fatigue have been found to be highly prevalent following traumatic brain injury (TBI), with a meta-analysis revealing that 49% of people experience clinically significant sleep difficulties1 and over 70% experience fatigue.2 Sleep difficulties can include an increased sleep need,3 reduced ability to sleep,1 and waking during the night.4 Most improvement in fatigue and sleep difficulties occurs in the first 6 months following injury, and while many difficulties do resolve spontaneously, problems with sleep and fatigue can persist over the longer term.5 Sleep difficulties and fatigue have been linked to: longer stays in rehabilitation;6 increased frequency and severity of symptoms; lower mood; poorer community integration;5 increased cognitive impairments;5 ,6 and reduced ability to undertake employment.7 Understanding the difficulties people experience, how they adapt, and areas where intervention is needed is fundamental to inform the development of responsive treatment.

    Sleep difficulties may arise directly as a result of injury (due to biochemical changes or neurotransmitter dysfunction) or as a secondary response to other effects of the injury including pain, lower mood, changes in lifestyle, side effects of medication and post-traumatic stress.8 ,9 Fatigue may result from diffuse neuronal injury making it harder for the brain to complete previously simple neurological functions.10 Pre-existing sleep difficulties are also likely to negatively impact on recovery, reducing the body's ability to rest and recuperate. While sleep and fatigue are concepts which often overlap and should be studied concurrently, problems with sleep and fatigue do not always co-occur.11

    Quantitative data have provided important information on the prevalence and nature of fatigue and sleep difficulties after brain injury. However, the nuances of how these difficulties impact on the person, their recovery and life after brain injury remain poorly understood.12 The experience of fatigue and sleep difficulties on significant others also remains unexplored. To the best of our knowledge, no longitudinal qualitative investigation has specifically explored the experience of fatigue or sleep difficulties after TBI to provide a more detailed understanding of their nature and impact. Findings from qualitative studies involving people after stroke have suggested that fatigue can be a major barrier to returning to a normal life, and that individuals with stroke can struggle to manage both their own and other people's expectations of what they are capable of due to their fatigue.13 ,14 However, the study did not explore sleep difficulties experienced, differences in pathophysiology, and patterns of impairment as well as the demographic features of the population affected, meaning that it is difficult to generalise findings from stroke populations to TBI.

    Many people experience fluctuations in their symptoms in response to new events and as they begin to increasingly challenge themselves to return to everyday life.15 Longitudinal qualitative research allows exploration of these changes over time, to identify key periods in recovery when different types of services might have the greatest impact. During analysis of a longitudinal study of people's experiences of recovery over 2 years following TBI, it became evident that sleep and fatigue formed a key part of the recovery process. Therefore, this paper aimed to conduct a focused analysis of people's experiences of fatigue and sleep difficulties over a 2-year period following TBI, using a longitudinal qualitative descriptive approach.

    Method

    Research question

    This research aimed to explore how people experienced poor sleep and fatigue over the 2 years following a TBI and identify any factors that increased or decreased fatigue and sleep difficulties over time.

    Participant recruitment

    Participants were recruited from three sources: (1) an epidemiological study of TBI,16 ,17 (2) community-based patient support organisations and (3) TBI service providers in two New Zealand cities (Auckland and Hamilton). To be included, participants needed to: have experienced a TBI within the past 6 months, be aged over 16 years, be able to provide informed consent, and report experiencing persistent difficulties. Severity of injury was not a reason for exclusion from this study. Eligible participants were telephoned by a member of the research team to briefly explain that the study was looking to explore people's experiences of recovering from a brain injury and to ask if they would like to receive further information in the post.

    Injuries were verified from medical records or information from treating clinicians accessed with participants' permission. TBI severity was categorised as mild, moderate or severe based on the worst recorded Glasgow Coma Score (GCS)18 and/or Westmead post-traumatic amnesia (PTA) scale within 2 weeks, which are routinely recorded in NZ for a suspected brain injury.19 Mild TBI was defined as a GCS score of 13–15 and/or PTA<24 h; moderate TBI as a GCS score of 9–12 and/or PTA 1–6 days; and severe TBI as a GCS score of 8 or less and/or PTA 7 or more days. If GCS and PTA severities differed, the more severe category was assigned. All participants who met the study's inclusion criteria but who did not have a recorded GCS or PTA score were classified as mild in severity.

    Data collection

    Semistructured interviews with participants and significant others were conducted individually or as a dyad depending on participant preference. Interviews were conducted in the person's home, at the university or other private place such as a room in a general practitioners clinic. Written informed consent was obtained prior to starting the interview with participants. Interviews were completed 6, 12 and 24 months after injury and lasted between 30 and 75 min. The interview questions were intended to be open to ensure that a range of experiences and issues of importance to participants could be identified. Questions focused on how the person felt they were recovering, the key things that were important to the participant at that time point, any things that they found helpful or that they felt were hindering their recovery. Key points raised in the 6-month interviews were discussed with participants at the subsequent time points to help people recall what had changed or remained the same since the previous interview. Participants were not directly questioned about sleep and fatigue but when these issues were raised, the participants were prompted to talk about their experience and the impact on their recovery.

    Interviews were conducted by a team of male and female research assistants, each of whom had several years' experience in conducting qualitative interviews. Interviews were audio-recorded and transcribed verbatim. Participants were allocated a unique study number and all identifying information was removed from the transcripts to ensure anonymity and confidentiality. Data were also collected on patient demographic characteristics including age, sex, ethnicity, mechanism and severity of injury. To enable the participation of people who were experiencing cognitive impairment, participants were able to have a support person with them during the interview. Interviewers also reflected back people's experiences to them to ensure understanding. Since the aim of this specific analysis was to explore how people experience sleep and fatigue after TBI over time, only data from participants who completed all three interviews were included.

    Definition of terms

    For the purposes of this study, sleep difficulties were defined as problems with initiating and/or maintaining nocturnal sleep. Fatigue was defined as the feeling of extreme tiredness, which may manifest as diminished energy, physical weakness or reduced mental capacity.

    Fatigue overlaps with sleep difficulties as when people experience fatigue, they are likely to experience an increased desire to sleep. Sleeping during the day as a result of fatigue may impact on nocturnal sleep as the body experiences a reduced sleep need. Information relating to either or both of these distinct but interrelated constructs, including strategies for managing them such as daytime napping and resting, was coded as part of the analysis.

    Analytic approach

    Given that a person's experience after injury results from an interaction of a number of factors (including the person's sense of self, the nature of the injury, social relationships and place in society), social constructivism20 was selected as the most appropriate theoretical framework to underpin the study. According to Crotty,20 people develop varied subjective interpretations of their experiences that are influenced by the wider context of the person, including other people around them. Prior to this research, it was assumed that participants would have developed interpretations of the changes in their sleep patterns and energy levels since experiencing a brain injury. The research design consequently aimed to provide an opportunity for participants to freely share their own personal interpretations through questioning of their overall recovery experience, rather than direct questioning about sleep and fatigue.

    Key themes influencing the experience of sleep and fatigue after TBI were identified using a qualitative descriptive approach.21 This approach encourages researchers to remain close to the data and to extract descriptions that convey events in the correct sequence and the meanings participants attribute to them.21 Transcripts were read in full to increase familiarity with the data and to observe the participants’ overarching story and key issues identified for them. Extracts relating to issues with sleep and fatigue were independently coded using paper and pen by two researchers (AT and VR). There were no predetermined codes used to guide the data analysis. Both coders had a background in health psychology and experience in working with people following a brain injury. Any differences in interpretation or where there was uncertainty around coding were discussed with the wider research team until a consensus decision was achieved. For example, the initial proposed code of ‘managing fatigue with rest’ was taken for discussion with the wider research team as data coded here seemed to reflect a more complex process than was reflected by the initial code name. After reviewing extracts from this code, ‘knowing how to rest’ was agreed on as a more accurate code name to reflect the underlying process of trial and error that participants went through in understanding how to rest in a way that worked for them, their family and their lifestyle.

    Interviewer notes were also used to guide interpretation of the data. Codes were initially developed on the basis of the 6 to 9-month interview transcripts. Codes were then combined where applicable and the code names refined to reflect the data. Constant comparison was used to ensure that each interview was compared with other interviews and not just considered in isolation to elicit variation and conflicting experiences. Negative cases that challenged the emerging analysis resulted in changes to the coding, such that the final analysis presented in this paper incorporates any negative cases. To capture changes over time, the three interview transcripts for each participant were then reread, and the 12–15 and 24-month transcripts coded on the basis of what had changed or remained the same for the person since their last interview. New issues emerging at the later time points were assigned new codes if there was no fit with existing codes. Alternatively, code names were refined to reflect changes within the data over time. Overarching themes relating to sleep and fatigue were identified from the final code list (see coding tree in online supplementary appendix1). Few changes were required to the code list for the last proportion of interviews reflecting that data saturation was reached. To provide context for each quote while protecting anonymity, extracts from the interviews are presented with information on the participants' sex, age and TBI severity. To reflect how the themes presented over time, data extracts within each theme are presented in chronological order. The time point specific for each extract was presented at the end of each quote.

    Results

    In total, of those who were able to be contacted about the study (N=92) and who met the eligibility criteria (N=71), 53 (75%) participants and/or their significant others consented to participate in the main study and completed at least one interview and 18 participants declined. Thirty of these participants (58%) completed interviews at all three time points (6–9, 12–15 and 24 months). Half of these participants (N=15) completed at least one interview with a significant other. A description of the 30 participants included in this analysis is provided in table 1. Participants were aged between 16 and 85 years of age, with a mean age of 43.5 years. Significant others included spouses (wife N=8, husband N=1), partners (N=2), ex-partners (N=1) and daughters (N=3). Ten of the 15 significant others (66.7%) completed all three interviews alongside the participant, with 3 (20%) taking part in two interviews and two (13.3%) taking part in just one interview. There were no differences observed in age, sex, TBI severity or ethnicity between participants in the main study and current analysis.

    Table 1

    Participant characteristics

    Fatigue and sleep difficulties were described as being problematic for the majority of participants over the 2 years following injury. Only two participants (both with mild TBI) did not refer to fatigue or sleep difficulties at any time point. The main issues experienced were feeling tired more easily than usual, needing to sleep a lot both day and night and having interrupted sleep at night. Four participants reported that their difficulties were resolved within 24 months. One participant had investigations for a sleep disorder (sleep apnoea) during the study, but this was ruled out at 12 months, and no further investigations appeared to be undertaken.

    Overall, participants reported that their recovery pathway had been a challenging, stressful process of self-learning and discovery. Four themes were identified that captured the participants' changing experiences of fatigue and sleep difficulties over the first 2 years postinjury: (1) making sense of fatigue and sleep after TBI; (2) accepting the need for rest; (3) learning how to rest; and (4) need for rest impacts on ability to engage in life. These themes reflected an ongoing and variable experience. This occurred particularly during times when people tried to challenge themselves such as by increasing time at work or physical activity. Changes to the participants' routines appeared to trigger a re-evaluation of their limits, priorities and what they needed to do to enable them to manage change in their symptoms.

    Theme 1: Making sense of fatigue and sleep after TBI

    Data from interviews at 6 months indicated that participants were only just coming to terms with the reality that their fatigue and sleep difficulties were going to be long-term problems resulting from their injuries. This meant that they were no longer able to do what they used to do. Most participants reported not being prepared for the intensity and persistent nature of fatigue and daytime sleepiness. There was considerable uncertainty as to how long these difficulties would persist.Like the fatigue, which is kind of bugging me a little bit, especially as there is a big question mark over the long-term prognosis, I've been doing some research online and there's not actually a lot of information. (Male, 27 years, severe TBI, 6 months)

    At this stage, those who received advice from others described benefiting most from encouragement to monitor their activities, sleep patterns and rest periods in order to understand what changes had occurred.Oh, it was really good… because she [occupational therapist] made me write in my rest periods and that sort of thing, so you'd look at the day before and think mmm, only had half an hour of rest yesterday and I'm pretty tired today now I should have a longer rest and that sort of thing so that was really, really good. (Male, 50 years, moderate TBI, 6 months)

    At 12 months, some participants seemed to be more aware of factors that made their fatigue or sleep worse, including stress. At this point in their recovery, they reflected that at this time point additional advice would be useful in how to manage these triggers most effectively:There is definitely some things I'm finding a bit harder, that I wouldn't have felt in term four last year… a full teaching load again and it's been quite stressful you know? I find my fatigue level is getting a little bit…I'm getting very, very tired towards the end of this term…I probably need more support from [the insurance provider] around this timeframe than any other time really. (Male, 29 years, mild TBI, 12 months)

    At 24 months, those experiencing difficulties were still struggling to make sense of the changes in their energy levels,I just get tired sometimes, I don't know why. Well like I know why but I don't know what really starts it too much, just doing stuff. (Male, 17 years, moderate TBI, 24 months)

    Theme 2: Accepting the need for rest

    Participants needed time to learn to accept the need for rest. The time frame for this process differed across participants. At 6 months, many participants described pushing themselves too hard and reaching a breaking point before they accepted the need for rest. This was particularly observed by significant others. At this point, increases in fatigue and sleep difficulties occurred alongside an increase in other symptoms.That was really what broke the camel's back, at the end of last term when he was quite sick and just really got too fatigued, that's just how it was, and… the nausea and headaches and that stuff all came back again. (Significant other of male, 17 years, moderate TBI, 6 months)

    Participants described feeling like they needed permission to rest in the early stages of recovery and felt guilty about not completing everyday tasks in order to do so.Just having people there that are saying that it's ok to be able to cut your day out whenever you start feeling tired and have a sleep… You have half an hour and then you're up again and then you're away. It's because people are there on your side. It does make a difference. (Male, 51 years, mild TBI, 6 months)

    A number of participants needed others to prompt them to take a rest or a nap when they started showing symptoms of tiredness until they became able to recognise for themselves that they needed a break.One of the guys came to me afterwards and said um do you…is fatigue an issue for you during the day, you know you are wearing yourself out during the day and crashing and burning? He said because I have noticed later in the day your color changes… and I said not that I'm aware of, I said everybody gets tired as the day goes on but I don't, haven't noticed any significant change in that, but that gave me the opportunity to ask him and a few more people what their perceptions of me were. (Male, 43 years, moderate TBI, 6 months)

    Over time, invariably life events occurred which meant participants sometimes needed to push themselves more than they would have liked. Participants described learning to manage this by allocating time to recover afterwards. This helped to prevent the negative trajectory of tiredness many experienced early in their recovery process.If I work myself too hard I've really got to go and have a sleep. Like on the weekend you know, I slept most of Sunday, that's because I worked a Saturday and I haven't worked a Saturday for a long time. (Male, 36 years, mild TBI, 12 months)

    Even at 24 months, participants reported having to actively monitor their energy levels and activities to enable them to function most effectively. They also expressed concern or worry that if they failed to monitor their fatigue, overdoing it would lead to lasting or permanent problems.If I push too hard the body pushes back. The problem is I've got to be consciously aware if the body pushes back it might be pushing back permanently, or hard. So you got to sort of take notice then go for a lie down. (Male, 50 years, severe TBI, 24 months)

    Theme 3: Learning how to rest

    This theme first emerged at the 12-month time point after participants became aware of the need to allow themselves to rest. Participants reported learning over time ways they could make their rest time more effective such as planning nap times, resting before becoming overtired and reducing distractions (light and noise). This typically followed a process of trial and error, reflection and self-discovery.I'll give you an example, I had my sisters here on Wednesday, I give them lunch on a Wednesday, and I sometimes go and have a rest after I cook for them and feed them and that…but I didn't do it on Wednesday, and then I felt, I was really tired after I had had dinner, I was tired. I tried to go to bed, I said to [my spouse] I think I've got to go to bed, and I went to bed early but then I had to get up again, you know, I sort of dozed and listened to music and that, and dozed and then I was awake again. At half past six I went off to bed, that's how tired I was and I got up at half past nine and then I had to wait till 3am I think it was before I could actually get off to sleep. So I think it is related to um, you know getting overtired. (Female, 72 years, mild TBI, 12 months)

    However, despite learning about resting, participants remained unsure about whether daytime naps specifically were a good thing for their recovery and well-being. Many were concerned that napping did not fit with their self-concept, that napping would become a bad habit, and were worried about the potential effect daytime napping would have on their night-time sleep. Despite this, the majority of participants described taking a nap if they became too tired or without planning to. There was uncertainty about when to nap, for how long and about how to best regulate nap times.Sit down, have a cup of tea and ah have a lie down or snooze, except trouble is that sometimes a snooze turns into a two or three hours sleep or partial sleep, not proper sleep, but then that's probably not good because you end up waking up half way during the middle of the night. (Male, 54 years, mild TBI, 12 months)

    Over time, people described learning how long they needed to nap to achieve greatest benefit and to gradually extend the periods of activity before resting.I take longer lunch break. I usually have a lay down for 20 minutes. And that helps me a lot and then I know that I can work every day full time, that's all…but when I do big days like today, yeah I can feel it. And it takes a while to recover from it, but, sometimes you just have to. (Female, 32 years, mild TBI, 12 months)

    By 24 months, participants perceived napping as increasingly beneficial and a necessary strategy to restore their energy levels. It became challenging to take a nap when they were outside of the home, although some participants described findings ways of adapting.So it was just being aware of where you were at the time and not to push it out or go flat out, and it was ok to slow down and have a bit of a nap in the afternoon, not a long one but if you had half an hour you felt real good. There was lots of times I'd be down town or something like that and I would think “gosh I can't handle this.” So you go back to the car and maybe drive down under the tree by the river or something and just have a nap for half an hour and the whole afternoon would change. It would be so much easier. (Male, 51 years, mild TBI, 24 months)

    Theme 4: Need for rest impacts on ability to engage in life

    In most cases, participants had not fully reintegrated back into normal life in the first few months after injury and there was little perceived impact of needing to nap or rest. However, in the longer term, participants described needing to re-evaluate their priorities and develop strategies to manage their own and others' expectations regarding their need for rest.You quickly realize that, that's not the way I would have reacted usually and so [health professional] told me a lot about letting go, let other people do things for you, it's important letting go very quickly. When people are around and you start to feel tired you just say ‘well that's me, you can stay here if you're happy but I am going to bed’, whereas before I would never have done something like that I would have thought ‘how rude’. (Female, 32 years, mild TBI, 6 months)

    At 12 months, participants talked more about how the need to rest impacted on their ability to re-engage in everyday activities. The need to nap could become stressful, particularly if visitors arrived unexpectedly or other activities overran. The need to rest a lot also restricted how much people could do in the day. Significant others were often shocked at how long people needed to rest so long after injury.He'll sleep for between like 12 hours at night, between 9 and 9 at night, and he'll sleep during 1 and 5 in the afternoon, all day every day. I mean every day's the same, so that a lot, so he's actually only up between 9 and 1 and 5 and 9, yeah so that in itself limits… limits his activity time. (Significant other of male, 65 years, severe TBI, 12 months)

    Many participants talked about becoming isolated and losing social connections as they had not been able to invest the time or find ways to maintain relationships alongside managing their need for rest.Interviewer: So it's also had an impact on relationships with friends then?Participant: Yeah well I can't really do anything cause of my fatigue. I'd go to school and come home and be smashed. (Male, 17 years, moderate TBI, 24 months)

    The impact of fatigue and sleep difficulties grew worse over time, even if the difficulties themselves were gradually improving or remaining stable. For example, the negative impact of needing to nap became most pronounced when participants tried to re-engage more with normal life activities such as getting back to employment. Participants described struggling to find ways of having a rest at work or saw it as a major barrier to seeking new employment.I believe that's what holds me down from being employable. Because I've got to stop and have a little nap. Even if it's only for 5 minutes, I have to sit back and just relax. (Female, 51 years, mild TBI, 24 months)

    Across the time points, there was no evidence of sex differences or differences in experience by TBI severity. The experience of sleep and fatigue was more a factor of the person, what they brought to the injury and their context.

    Discussion

    This paper presents an analysis of how people post-TBI spontaneously described experiences of sleep and fatigue difficulties over the first 2 years post injury. While many participants received services in the acute stage of recovery, analysis revealed that they felt unprepared for the intensity and persistence of difficulties that they encountered in the longer term. Participants described struggling to understand, accept and manage their fatigue and sleep difficulties even many months or years after their injury. Initially, participants reported pushing themselves too hard and reaching a breaking point before realising the importance of needing to rest and pace themselves. Participants used trial and error to find ways of managing fatigue and sleep difficulties that worked for them. As their recovery progressed, participants found it increasingly difficult to balance the need for rest with the competing demands of everyday life, particularly when returning to work. The findings highlight that a different approach is needed by practitioners to prevent setbacks and help people to better prepare for and manage sleep and fatigue over time.

    Previous quantitative findings have proposed that people who have experienced a mild TBI have more difficulties initiating or maintaining sleep (insomnia) and that those with moderate to severe injuries are more likely to experience hypersomnia.22 The findings from this study highlight that given the wide variation in experience within TBI severity categories observed, it is important that each case is individually assessed. The extracts from participants highlight that preinjury factors (such as prior sleep quality), how they understand and manage their difficulties after injury and the contextual demands placed on them (such as work and family commitments) all influence their experience of sleep and fatigue and need to be considered and addressed within treatment.

    This study confirms previous quantitative findings that fatigue and sleep difficulties are a common occurrence after TBI and have a substantial impact on recovery and community reintegration after TBI.1 ,2 ,5 ,7 The findings also complement previous qualitative research on fatigue after stroke, highlighting the need for support to help people to understand the difficulties they are experiencing.13 Indeed, those supported with early information appeared to experience less of a struggle with accepting the need for rest compared to people who received no professional input. This study has also revealed specific ways support can be provided more effectively through facilitating acceptance of difficulties and emphasising the need to allow people to rest early to prevent setbacks. Our analysis suggests that advice must be individually tailored to fit with the person, their life and circumstances. A summary of recommendations arising from the results of this study are outlined in table 2. It should be noted that this advice should not be considered in isolation from other research evidence on the management of sleep disorders/insomnia and that further research is needed to test the effectiveness of these recommendations.

    Table 2

    How people can be supported to manage sleep and fatigue after TBI

    Concerns were raised by participants specifically about daytime napping, despite its widespread use. Participants described napping for between 20 min and several hours. For the healthy population, naps of up to 40 min have been found to be most beneficial in terms of improving alertness, performance and learning, whereas longer nap times appear to be detrimental and linked to low mood and morbidity.23 It remains unclear how much sleep is required after brain injury, and while this is likely to vary considerably between individuals, our findings suggest that proactive monitoring of activity, fatigue, sleep and rest may help to identify the optimum rest times for individuals. Participants expressed concern about daytime naps not reflecting their true identity, making them lazy and becoming habit forming. These issues should be explored with people after TBI when discussing strategies for managing fatigue and sleep difficulties. Ideally, these strategies would focus on how to gradually increase activity and reduce rest periods, giving people a greater sense of control and reducing some concerns about their long-term dependency on napping. Further research is needed to explore optimum naptimes for people after brain injury, and to explore the notion of whether excessive rest can result in harm.

    This study did not set out to specifically explore the cause of the sleep and fatigue difficulties, and yet the extent and similarity of difficulties are noteworthy. While some participants compared their sleep quality after TBI to how they were before their injury, the study did not explore the extent to which their difficulties were directly related to the injury. Only one participant described receiving investigations for a sleep disorder, sleep apnoea. Therefore, some participants may have been experiencing a specific sleep disorder that had not been identified.24 Approximately two-thirds of participants had received services in the acute phase of their injury. In many cases, fatigue was discussed and pacing and planning strategies discussed. However, no participants reported discussing their sleep and daytime napping patterns with rehabilitation practitioners. This suggests that sleep and napping need to be routinely screened for and addressed as part of service provision to assist in the recovery process. Despite the open interview approach having some limitations, the study has enhanced our understanding that whatever the cause, sleep difficulties and fatigue disrupt recovery from TBI and reintegration back into the community and need to be identified and addressed as a core part of rehabilitation.

    Acknowledgments

    The authors thank the study participants for sharing their stories and organisations who facilitated recruitment including THINK, ABI Rehabilitation, Headway and the Waikato District Heath Board.

    References

    View Abstract

    Footnotes

    • Collaborators TBI Experiences Group Members—Alice Theadom, Kathryn McPherson, Joanna Fadyl, William Levack, Nicola Starkey, Laura Wilkinson-Meyers, Alexis Channon, Matire Harwood, Nicola Kayes, Valery Feigin.

    • Contributors AT was a named investigator on the parent study. She led and conducted the design and analysis of the current study and drafted the manuscript. VR supported the data extraction and analysis on the current study and contributed to the writing of the manuscript. WL was a named investigator on the parent study. He supported the design and data analysis of the current study and contributed to the writing of the manuscript. LW-M was a named investigator on the parent study. She supported the design and data analysis of the current study and contributed to the writing of the manuscript. NS was a named investigator on the parent study. She supported the design and data analysis of the current study and contributed to the writing of the manuscript. KM was a principal investigator on the parent study. She contributed both to the design and analysis of the findings as well as to the writing of the manuscript.

    • Funding The parent study informing this work was supported by the Health Research Council of New Zealand, grant number 10/471.

    • Competing interests Subsequent to this research funding being awarded, Kath McPherson has taken up the position of Chief Executive at the Health Research Council of NZ, but was not involved in the decision-making process of grant funding.

    • Ethics approval Ethics approval was obtained from the National Health and Disability Ethics Committee (Ref: NTY/10/08/061) and the Auckland University of Technology ethics committee (Ref: 10/280).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement No additional data are available.

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