Exploring post-stroke fatigue from the perspective of stroke survivors: what strategies help? A qualitative study

Abstract

Purpose

Post-stroke fatigue is a research priority for stroke survivors and health professionals but there is limited evidence to guide management. We aimed to explore (1) the experience of post-stroke fatigue from the perspective of stroke survivors and their caregivers and (2) fatigue management strategies that are used.

Materials and methods

This was a qualitative study using semi-structured interviews. People with self-reported post-stroke fatigue and caregivers were recruited using maximum variation sampling. Analysis was done via the framework approach.

Results

We recruited 17 stroke survivors, nine male (53%), most under 65 years (n = 12, 76%), and greater than 1-year post-stroke (n = 16, 94%, range 10-months to 22-years). One-third of participants self-reported having aphasia (n = 5, 36%). We also recruited eight caregivers, most of whom were female (n = 7, 88%). We identified four themes: (1) fatigue is unexpected after stroke and symptoms vary; (2) the individual experience of fatigue is complex, influenced by multifactorial and biopsychosocial factors; (3) learning to adapt and accept fatigue; and (4) Strategies to manage fatigue and personal approaches to rest.

Conclusions

Post-stroke fatigue experience varies presenting cognitively, physically, and psychologically according to a complex interplay of biopsychosocial factors and personal triggers. Self-management strategies are individualised and include organisation, medications, lifestyle modifications, and peer support.

Implications for rehabilitation

• Post-stroke fatigue is a complex individual experience involving biopsychosocial factors, and stroke survivors need assistance to identify their triggers and support from family, peers, and the stroke community to live well with fatigue.

• Fatigue is not commonly discussed by health professionals and stroke survivors need simple, practical advice over the long-term to reduce fear and distress.

• There are a range of strategies that may be helpful. Stroke survivors may benefit from adopting problem-solving approaches, trial pacing, lifestyle modifications and planning, and find forms of rest that work for them.

Keywords:

• Post-stroke fatigue
• qualitative
• stroke
• stroke survivors
• caregivers
• fatigue

Introduction

Around half of all stroke survivors experience post-stroke fatigue [1], which is described as an overwhelming feeling of exhaustion or tiredness, a lack of perceived energy that does not typically improve with rest and is distinct from sadness or weakness [2,3]. The biological causes of post-stroke fatigue remain unclear [4]. However, there are some known associated factors such as female sex, age, sleep disturbances [5], low mood, poor quality of life [6], and pre-stroke fatigue [7]. Post-stroke fatigue exists independently of depression [6,7], is not easily identified as the symptoms can mimic those of other conditions, and is unpredictable, with survivors of stroke describing variable onset, severity, and symptoms [8]. Post-stroke fatigue is a major barrier to stroke recovery and participation in daily life [3,5]. Stroke survivors often notice symptoms such as difficulty concentrating, overwhelming lethargy, and a need to rest once home after care in hospital [8]. Persistent, ongoing symptoms prevent return to prior family and social roles, and return to work [8]. Consequently, stroke survivors, their caregivers, and health professionals identify post-stroke fatigue as a key, leading priority for research [5,9,10].

Clinical practice guidelines for post-stroke fatigue are, in many countries, supported by consensus opinion only, which poses challenges for clinicians and the stroke survivor community in successfully addressing post-stroke fatigue [11]. In Australia for example, recommendations include pacing strategies, cognitive behavioural therapy, exercise, and sleep hygiene strategies [12]. Whereas in the UK, updated clinical guidelines recommend goal setting, relaxation and meditation, and changing diet [13]. Systematic reviews provide limited evidence to support the implementation of pharmacological or non-pharmacological interventions, with small sample sizes and poor study designs resulting in low quality evidence [3,14]. Furthermore, there appears to be some disconnect between the interventions tested in clinical trials [15,16] and what some survivors report helps them with post-stroke fatigue (behavioural strategies such as daily routine modifications, scheduled rests, and pacing) [17]. Variations in clinical practice recommendations for post-stroke fatigue between countries may result in different strategies being trialled by survivors of stroke, some of which may provide new insights into potential intervention development. Further exploration of the qualitative experience of post-stroke fatigue that builds on studies exploring the first two years after of stroke onset in Denmark [18], and cross-sectionally in the longer-term in a study in the UK [17] may reveal further strategies to target post-stroke fatigue. Consequently, in collaboration with the senior author from the UK study, we aimed to address the following research questions, from the perspective of Australian stroke survivors and their caregivers:

1. What is the experience of living with post-stroke fatigue?

2. What strategies for managing post-stroke fatigue are stroke survivors and their caregivers aware of, and how did they receive information about fatigue?

3. What strategies are helpful or unhelpful for managing post-stroke fatigue?

Materials and methods

Design

This was a qualitative study using a framework approach. A framework approach captures a person’s experience [19] and provides a pragmatic method of organising, analysing, and interpreting data around focal research questions [20]. With limited knowledge about how stroke survivors manage their fatigue, the framework approach provides an effective method of gaining insight into what strategies stroke survivors find helpful or unhelpful [19]. Ethical approval was obtained from the University of Newcastle Human Research Ethics Committee (H-2021-0405), and informed consent (written and verbal) was obtained from all participants.

Setting and participants

Stroke survivors and caregivers were recruited between February 2022 and November 2022. Recruitment was via: (i) the Stroke Research Register (Hunter) (targeted post or email invitations), (ii) the Hunter Medical Research Institute (HMRI) (via website and social media platforms and via direct invitations to previous research participants who had consented to be contacted for future studies), and (iii) community support organisations for stroke survivors with aphasia. We included stroke survivors who (1) were over 18 years of age, (2) self-reported experience of post-stroke fatigue, (3) lived in the community, and (4) were willing to participate in an interview. Exclusion criteria were stroke survivors who (1) experienced fatigue prior to stroke from another condition, (2) were receiving inpatient care, and (3) people who were not comfortable completing an interview in English. We included caregivers who (1) were over 18 years of age and (2) reported living with or caring for a stroke survivor who experienced post-stroke fatigue.

We used a maximum variation sampling strategy [21] to capture a broad range of experiences by monitoring participants’ demographic characteristics during recruitment. We sought to include participants of varying age, gender, time since stroke and particularly people with aphasia. Aphasia is estimated to affect 30% of stroke survivors, yet this group are often excluded from stroke rehabilitation studies [22,23]. Participants self-reported the presence of aphasia during recruitment and researchers later classified their language as mild or moderate aphasia according to the “activity limitation” section of the Australian Therapy Outcome Measures Scale [24]. Participants were classified as mild with score >4, and moderate if ≤3.

Data collection

Participants completed semi-structured interviews according to their preference via videoconferencing or telephone. Stroke survivors with moderate aphasia living in the Hunter geographical area were offered in-person interviews to allow communication support as needed. An experienced qualitative researcher (DS) conducted all interviews, with rest breaks offered to accommodate fatigue. Participant characteristics were recorded prior to each interview including age, gender, time since stroke and self-reported aphasia severity. A semi-structured interview guide (Table 1) was developed by researchers with experience of working clinically with people with post-stroke fatigue [17]. Semi-structured interviews allow flexibility and discussion and promoting consistency in addressing all research questions [25]. Before commencing data collection, we trialled the interview guide with our stroke survivor research partner (JD) who provided suggestions for greater question clarity. The interview guide focused on the onset and characteristics of the individual’s fatigue, their understanding of fatigue and its daily impact, helpful, and unhelpful strategies, and any advice they have received about post-stroke fatigue. To enhance methodological rigor, we undertook strategies including: reading of relevant literature prior to commencing interviews, actively engaging with a reflective diary following interviews, creating and maintaining audit trails during analysis [26].

Table 1. Semi-structured interview guide.

Questions	Follow up	Prompts
What do you think we mean when we talk about fatigue?	Has that changed over time after your stroke?	Mental or physical fatigue.
How does fatigue affect you day to day?		Activities, sleep, job, socially, relationships, memory, concentration
Have you had any advice about recognising and managing fatigue?	Who advised you and what did they suggest?	Leaflets, web links, GP, others with fatigue
Is there/was there a pattern to your fatigue?		Time of day, related to a particular activity, unpredictable
What have you tried in terms of managing fatigue that has or hasn’t worked?		Afternoon nap, resting, change in diet, exercise
What happens if you don’t manage your fatigue?		Accidents, forgetting things
What are your top tips for others with fatigue?
Is there anything else you would like to add?

Interviews were audio and/or video recorded, transcribed verbatim, and identifying data removed. Participants offered the opportunity to review their interview transcription prior to data analysis to ensure credibility of data [26].

Data analysis

Transcripts were imported into a qualitative management software, NVivo12 (QSR International, Doncaster, Australia). Analysis (by AD and DS) commenced as soon as possible after each interview. There are multiple stages in a framework analysis: familiarization, identifying a framework, indexing, charting and mapping, and interpretation [27]. Each transcript was first read in full to explore and familiarize the researcher with the content. During subsequent transcript readings, we used inductive line by line analysis to generate codes. A collaborative working analytical framework was developed based on initial coding, and we identified categories that subsequent interview data were coded to (indexing). Indexed data were exported into a matrix from which we commenced interpretation. During interpretation, we used joint discussion to determine concepts and initial themes. Regular discussion occurred between members of the research team during data analysis to ensure credibility. Our stroke survivor research partner (JD) was involved in cross-checking the development of the framework findings and participated in the analysis. In the final phase, we interpreted the data set as a whole, which allowed us to finalize themes [27].

Results

Participants

Seventeen stroke survivors and eight caregivers were recruited and completed the interview (Table 2). Most stroke survivors were more than one-year post-stroke (94%) and over half were male (53%). Most participants (76%) were under the age of 65 years and five (36%) reported having aphasia. Of these five participants, three had mild aphasia and two had moderate aphasia. Participants were recruited from five Australian States: 56% from New South Wales, 20% from Victoria, and 8% each from Western Australia, South Australia, and Queensland. One interview was conducted via telephone, and the two participants with moderate aphasia participated in face-to-face interviews to allow in-person supported communication. The remaining 14 interviews were conducted by video-conferencing technology (Zoom). A typical interview lasted for a mean length of 35 min with duration ranging from 21 to 58 min. All interviews were conducted in one session, with no rest breaks required. Of the eight caregiver interviews (88% female and spouse of the stroke survivor with fatigue), five were completed by videoconferencing and three by telephone.

Table 2. Characteristics of stroke participants (n = 17) and caregiver relationships (n = 8) at time of interview.

ID	Pseudonym	Age (years)	Time since stroke (years, y) (months, m)		Aphasia (AusTom level)^a
1	Bill	50	3 y		No
2	John	57	7 y		No
3	Peter	70	3 y		Mild (4)
4	Leanne	47	9 y		No
5	Dianna	41	20 y		No
6	Roy	30	4 y		No
7	Lucas	66	10 m		No
8	Mary	40	9 y		Mild (4)
9	Marie	44	6 y		No
10	Stephanie	61	21 y		Mild (4)
11	Clare	41	5 y		No
12	Samantha	84	2 y		No
13	Anthony	73	5 y		No
14	Matthew	62	7 y		No
15	Judith	42	22 y		Moderate (3)
16	Raymond	43	3 y		No
17	Richard	55	4 y		Moderate (3)
Caregiver participants
	Pseudonym	Relationship to survivor of stroke
18	Fiona	Spouse
19	Alicia	Spouse
20	Helen	Spouse
21	Jackie	Spouse
22	Christopher	Son
23	Jane	Spouse
24	Clare	Spouse
25	Leanne	Spouse

^a AusTom Activity Limitation Level score for Language.

We identified four main themes: (1) fatigue is unexpected after stroke, and symptoms vary; (2) the individual experience of fatigue is complex, influenced by multifactorial and biopsychosocial factors; (3) learning to adapt and accept fatigue; and (4) strategies to manage fatigue and personal approaches to rest. Quotes are presented using study pseudonyms, age (years), and time since stroke (months, years). Additional supporting quotations for each theme are provided in our supplemental material.

Theme 1: fatigue is unexpected after stroke and symptoms vary

Fatigue was an unexpected stroke symptom for stroke survivors and their caregivers, which caused confusion:

Nobody spoke to us about what to look out for. [Christopher, son]

Specific advice from rehabilitation services about fatigue management strategies they could try to implement was noted to be lacking. Many wished they had been aware of post-stroke fatigue earlier. One participant reflected:

I would have really liked to have known about it, like if someone had given me some information … because in those early days I couldn’t understand why I was so tired. [Mary, age 40 years, 9-years post stroke]

Lack of awareness of post-stroke fatigue left most people feeling isolated. Poor understanding by family and friends negatively impacted on family roles and relationships. Stroke survivors felt they were perceived to be self-centred when activities needed to be scheduled around their fatigue.

… it’s amazing how many people aren’t aware of it [post-stroke fatigue]… and then their family accuse them of being lazy because all they want to do is sleep. [Marie, age 44 years, 6-years post stroke]

Recovery expectations were high but were compromised by fatigue. People felt a sense of failure when fatigue affected daily life.

I kept trying to work basically from day three. And I’d hit brick wall, after brick wall, after brick wall. [Leanne, age 47 years, 9-years post stroke]

Symptoms of post-stroke fatigue varied, including cognitive and sensory overload, physical, speech, and visual issues. Onset varied with only two people describing fatigue as constant. Most reported worsening symptoms during the day. Symptoms could be unpredictable and sudden:

And it’s [onset of fatigue] just a complete suddenly turn a switch kind of thing. I just have to stop. I can’t actually continue I just have to stop. [Lucas, age 66 years, 10-months post stroke]

Needing to stop felt disruptive and frustrating but was noted to be important for safety during complex tasks, e.g., driving. Fatigue could persist for days, with one participant describing:

I call it like the fatigue hangover, For the rest of the day, and probably the next day I’ll be lying down. [Mary, age 40 years, 9-years post stroke]

Cognitive tasks led to fatigue and symptoms could manifest as a combination of cognitive, emotional, and/or physical symptoms. Physical fatigue was rarely described as the main post-stroke fatigue symptom, but function (speech, vision, balance, arm use, or walking) could deteriorate with fatigue.

Not only physically was I affected, but I was wiped out emotionally and the fatigue really took hold of my ability to concentrate. [Dianna, age 41 years, 20-years post stroke]

Theme 2: the individual experience of fatigue is complex, influenced by multifactorial and biopsychosocial factors

For participants, fatigue was a very personal experience:

Very, very personal and that’s actually a good thing. In that, instead of it being a given set of rules [to manage it], it helps people to think about who they are and what is particularly exhausting or not exhausting for them as an individual. [Matthew, age 62 years, 7-years post stroke]

Participants described a variety of biopsychosocial factors that influenced their fatigue. Such factors included cognitive load, emotional states and mood, sensory stimuli, and environmental factors. For younger participants, stressors such as managing work, personal relationships, and anxiety could exacerbate symptoms. For some people, fear of fatigue onset itself exacerbated fatigue. As one participant shared:

Fear is pretty significant. Because I hit these wipe-out days… they are misery for me. Like they are low, as low, as low as a day can be for me. [Raymond, age 43 years, 3-years post stroke]

Social settings that provoked anxiety such as crowds, the dentist or meeting new people could be problematic:

… the biggest thing that sort of correlates with that cognitive fatigue is emotional stress from any sort of source. [Roy, age 30 years, 4-years post stroke]

Whereas familiarity with people, activities, and environments that lowered anxiety levels were noted to help ease fatigue. As one participant noted:

The more you become comfortable with something the less anxious you are, and I think that is a good way of helping the fatigue. [John, age 57 years, 7-years post stroke]

Complex environments and social gatherings could lead to fatigue. One caregiver explained:

Social interactions took it out of him. He could only cope with those for about half an hour, 45 minutes and then he either would fall asleep, or you’d start to see him struggling …. [Christopher, son]

Problem solving activities and tasks post-stroke involved a range of potential fatigue challenges. Learning new skills or tasks could be fatiguing. As one participant shared:

I then worked out that if I was learning something new, my brain just goes yeah okay, I need a rest. So it wasn’t just that physical sort of thing. [Leanne, age 47 years, 9-years post stroke]

Theme 3: learning to adapt and accept fatigue

Adapt to and accepting life with post-stroke fatigue was considered key to moving forward:

Our expectations have been far too high…the realisation of "this is how it is", we should be taking things slower. When he needs a rest, he needs a rest. I think we’re trying to be more accepting. [Fiona, spouse]

Adaption required building self-awareness that helped participants gauge their threshold for activities and make decisions about continuing activities, or not.

Listening to your body is really important. If you feel fatigued you need to stop and rest. It’s all well and good to push through, but there are long term consequences I think fatigue builds up and at some point it kicks in. [Matthew, age 62 years, 7-years post stroke]

Recognising fatigue took time and was an important step, as was re-evaluating personal expectations:

I think the biggest one [step] was giving myself permission to just be able to be lazy certain days and not freaking out. [Roy, age 30 years, 4-years post stroke]

Acceptance of the persistent nature of fatigue and changes in ability post-stroke was a pivotal feature in gaining some control over their fatigue and building a new perspective on life.

Acceptance: that’s really important to then begin to move forward. You have to accept where you are now, to then move forward from where you are now. [Matthew, age 62 years, 7-years post stroke]

Theme 4: strategies to manage fatigue and personal approaches to rest

All participants reported that developing their own personal fatigue management strategies was crucial. Strategies were mostly developed through trial and error and learning from peer stroke survivors:

They [stroke survivors] think it’s unique to them until they join a stroke forum or Facebook group that’s invaluable to share information like that. [Marie, age 44 years, 6-years post stroke]

Daily and weekly prioritisation was considered a key strategy. Participants asked themselves “what is essential and what can I drop off?” [Matthew, age 62 years, 7-years post stroke]. Prioritisation helped participants conceptualise how and where they focussed limited energy. Caregivers helped with scheduling, acknowledging that they needed to consider their loved one’s capacity:

I’m trying not to overload our schedule on the weekends…I’m having to really listen more to when he says, “No, let’s not do that,” because I can be a bit gung-ho. I need to remember he’s saying “Actually, I can’t manage it.” [Fiona, spouse]

Almost all participants described exercise as a helpful fatigue management strategy, reporting that it did not make their fatigue worse. Exercise was used to break up cognitive tasks and improve endurance and was felt to benefit fatigue:

I exercise a lot… exercise for me it’s a good thing. I would feel more fatigued if I didn’t do it. [Dianna, age 41 years, 20-years post stroke]

Experiences with prescribed medications for fatigue were mixed and success for some was not achieved for others.

I’m managing with the medication, because I’ve been on the Modafinil for about six years, give or take. And I’m pretty okay with my fatigue. [Clare, age 41 years, 5-years post stroke]

All participants used rest for self-managing fatigue, either when fatigue presented or by scheduling rest regularly into a day or week to prepare for activities. Many forms of rest were discussed: removal of all stimulation, quietly listening to music and meditation. Where day sleeps were used, they were carefully managed:

I don’t let him[husband] sleep too much. I set a time on it and I’ll tell him, “I’ll wake you up at four or three o’clock,” because otherwise, he won’t sleep at night. [Leanne, spouse]

Pacing activities was described as helpful: achieving rest via switching between known fatiguing triggering activities and less challenging activities during the day. People described removing themselves from the fatiguing situation or environment, and switching to a task that has different demands, e.g., switching between cognitive and physical tasks:

A strategy of getting myself out of my environment. I’d get up and I’d go for a change in environment, which would involve a physical activity, rather than a sedentary mental activity. [Anthony, age 73 years, 5-years post stroke]

Discussion

In this qualitative study, we aimed to explore the experience of post-stroke fatigue and strategies that Australian survivors of stroke use to help manage their fatigue. We identified four themes describing the experience and management of post-stroke fatigue from the perspective of stroke survivors and their caregivers: (1) fatigue is unexpected after stroke and symptoms vary; (2) the individual experience of fatigue is complex, influenced by multifactorial and biopsychosocial factors; (3) learning to adapt and accept fatigue; (4) strategies to manage fatigue and personal approaches to rest.

A key finding is that stroke survivors report that fatigue is not discussed during recovery and few health professionals discuss its impact. Consequently, fatigue is unexpected for survivors of stroke, and their families and support networks have little insight into its existence. Lack of discussion about fatigue has been identified previously [17] highlighting potential challenges for health professionals globally in identifying and managing fatigue amongst the other common sequalae of stroke. Fatigue is a multidimensional construct, associated with a range of physical and psychological factors including mood disorders, sleep disorders, and pain [28]. Consequently, it is a challenging phenomenon for any one discipline to manage in clinical practice. Exacerbating the challenge further is psychological support as an unmet need for survivors of stroke [29], suggesting limited access to psychological service provision during recovery. Fatigue as an unexpected symptom can result in stroke survivors having unrealistic expectations of what they can achieve day-to-day leading to feelings of frustration, and a sense of isolation [30,31]. We identified that when learning to live with fatigue, acceptance of the presence of fatigue plays an important role. Achieving acceptance is supported by education [32] and through sharing personal experiences with other people living with fatigue [17,32]. The fact that little to no fatigue education is delivered by health professionals could be due to several factors: lack of time, lack of clear evidence-based recommendations to guide health professionals about fatigue management or a lack of confidence in providing fatigue education [11]. However, it is critical that fatigue is recognised, validated and managed [17]. How to effectively deliver fatigue education remains unclear and further research is needed [12,33]. Peer education was reported to be helpful by stroke survivors in our study and could be an important component of educational approaches [32].

We identified that the individual experience of fatigue is complex, and in contrast to other studies found that fatigue is highly influenced by multifactorial and biopsychosocial factors [17,18]. Such complexity takes time and self-reflection by stroke survivors to learn how to self-manage and risk assess the potential impact of their fatigue. Three main patterns of adaption to post-stroke fatigue have been identified in the first two years after stroke: pushing to improve, settling for less and fluctuating control [18]. Such patterns were less clear in our participants who overall, were longer duration post stroke onset. The complex biopsychosocial factors that influence fatigue may have greater impact in the longer term and reduce clear cut patterns of coping with fatigue. To address biopsychosocial factors, health professionals and caregivers could play an important role in assisting reflection about the types of biopsychosocial factors that negatively and positively influence fatigue. Support for problem solving when developing and implementing strategies to manage fatigue may be needed. Reflection can further involve risk assessment of schedules and daily activities when prioritising competing demands, which has been helpful in other conditions with fatigue [34] and may alleviate some of the fear described by participants in our study. Interestingly, stroke survivors in our study described clear psychosocial factors that exacerbated their fatigue such as family stressors, anxiety, return to work challenges, and lack of support. The biopsychosocial model of care is receiving increased attention in the understanding of conditions, such as chronic fatigue syndrome and diabetes related fatigue [35,36]. While the complex interplay of biopsychosocial factors remains poorly understood in post-stroke fatigue, health professional should consider the wide range of biopsychosocial factors that may influence fatigue and consider referral to other professionals such as psychologists and counsellors accordingly [37].

Stroke survivors independently develop a range of strategies to manage their fatigue, with similarities between survivors of stroke from the UK and Australia [17]. Helpful strategies included organising and scheduling each day or week ahead of time, use of rest, pacing during the day (switching between activities with differing demands), exercise, prioritisation of meaningful activities, and seeking support. Interestingly, survivors of stroke from the UK emphasised the importance of professional support [17], whereas in Australia, greater emphasis was placed on peer support from others living with fatigue. Implementing a range of strategies may be more useful for stroke survivors than a single prevailing strategy [17]. While there is little evidence to support the effectiveness of these strategies in the post-stroke fatigue literature, health professionals could share the range of strategies recommended by stroke survivors as part of fatigue management education and connect them with other people living with post-stroke fatigue. Finding the best form of rest to manage fatigue was personal for participants in our study. However, rest as a strategy can be associated with judgement and stigma, factors that may exacerbate fatigue [32]. Hence, it is critical health professionals advocate for and educate family and carers about the role of rest as an important management strategy. Exercise may be helpful [12] and is commonly prescribed as part of post-stroke fatigue care [11]. Exercise can improve fitness and minimise deconditioning although further research is needed to determine whether exercise can directly influence the mechanisms of post-stroke fatigue [4]. An important finding of this study is that most stroke survivors were exercising regularly and reported that it did not exacerbate their fatigue. Health professionals play a key role in sharing this information with new stroke survivors who may associate exercise with potential increases in fatigue [17]. Health professionals may need to guide stroke survivors during the early stages of recovery to provide reassurance and build confidence for exercise while managing post-stroke fatigue [12]. The role for medications (e.g., modafinil, dexamethasone) in fatigue management remains unclear [14,38] and stroke survivors in this study reported mixed experiences. While useful for fatigue management in other neurological conditions [39,40], long-term medication use comes with a financial burden and potential side-effects for stroke survivors, who want to know that there are proven benefits for the medication use [6].

Strengths and limitations

This study has three main strengths. First, participants were recruited nationally across Australia, allowing us to represent the experience of post-stroke fatigue from people in different regions and health services. Second, one-third of the participants reported having aphasia, a group who at times are less well represented in fatigue or qualitative research. Finally, our sample included a range of ages, a relatively even balance for sex and included caregivers who could add observations about the experience of post-stroke fatigue that may not have been obvious to stroke survivors.

Our study is not without limitations. Most participants were greater than 1 year post stroke and the experience of early post-stroke fatigue may differ, as may the management strategies adopted. With that said, the narrative contributing to our themes that was provided by the community-dwelling participant experiencing post-stroke fatigue for just under 1-year did not differ significantly from that of participants experiencing longer durations of post-stroke fatigue. Only one-third of our participants were older than 65 years of age. This differs from the general stroke population where two-thirds are over the age of 65 years. Younger participants may have differing experiences of post-stroke fatigue due to family roles and responsibilities, need to return to work, recreational choices and lifestyle. However, many of the issues raised people under 65 years were also noted by those in the older age groups. Finally, cognitive dysfunction and mood are associated with greater fatigue after stroke [41], which may require different strategies for management of fatigue. We did not assess cognitive impairment or mood in our study participants so may have missed capturing such strategies in our findings.

Clinical implications

The experience of post-stroke fatigue is complex and influenced by individual psychosocial factors. The quality of education and support provided for people living with post-stroke fatigue is not meeting the needs of stroke survivors and their families. Early awareness and advocacy may play an important role in validating post-stroke fatigue for stroke survivors. Health professionals, carers, and family should assist stroke survivors identify their fatigue triggers, individual patterns of fatigue and best forms of rest. To achieve a high quality of life with fatigue after stroke, it is important that health professionals encourage an individual problem-solving approach that supports stroke survivors to develop long-term management strategies.

Conclusions

Post-stroke fatigue can persist for many years after stroke onset. Survivors of stroke and their caregivers would like to receive early information about post-stroke fatigue, symptoms they may experience and support from health professionals to trial strategies that may help manage the condition more successfully.

Acknowledgements

We would like to acknowledge and thank the Stroke Research Register (Hunter) for their support with participant recruitment, our consumer research partners for their input and expertise, and the participants who shared their lived experience.

Disclosure statement

The authors report there are no competing interests to declare.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.