“I give it everything for an hour then i sleep for four.” The experience of post-stroke fatigue during outpatient rehabilitation including the perspectives of carers : A qualitative study

Journal article

Bicknell, Erin D., Said, Catherine M., Haines, Kimberley J. and Kuys, Suzanne. (2022). “I give it everything for an hour then i sleep for four.” The experience of post-stroke fatigue during outpatient rehabilitation including the perspectives of carers : A qualitative study. Frontiers in Neurology. 13, p. Article 900198. https://doi.org/10.3389/fneur.2022.900198
AuthorsBicknell, Erin D., Said, Catherine M., Haines, Kimberley J. and Kuys, Suzanne
Abstract

Background: Fatigue is a debilitating post-stroke symptom negatively impacting rehabilitation. Lack of acknowledgment from carers can be additionally distressing. The purpose of this study was to describe the experience of post-stroke fatigue during outpatient rehabilitation, including the perspectives of carers.

Methods: This qualitative study was guided by descriptive phenomenology within a constructivist paradigm. Semi-structured interviews were conducted with stroke survivors experiencing fatigue (Fatigue Assessment Scale >23) and attending outpatient rehabilitation. Carers were also interviewed where identified, providing insight into their own and stroke survivor experiences. Data were analyzed according to Colaizzi's analytic method.

Results: Fourteen stroke survivors (50% culturally and linguistically diverse), and nine carers participated. Six themes were identified: 1. The unpredictable and unprepared uncovering of fatigue; 2. Experience and adjustment are personal 3. Being responsible for self-managing fatigue; 4. The complex juggle of outpatient stroke rehabilitation with fatigue; 5. Learning about fatigue is a self-directed problem-solving experience; 6. Family and carers can support or constrain managing fatigue.

Conclusion: Despite engaging in outpatient rehabilitation, stroke survivors largely learnt to manage fatigue independent of healthcare professionals. Carers often facilitated learning, monitoring rehabilitation, daily routines and fatigue exacerbation. Conversely, family could be dismissive of fatigue and possess unrealistic expectations. Post-stroke fatigue must be considered by clinicians when delivering outpatient rehabilitation to stroke survivors. Clinicians should consistently screen for fatigue, provide flexible session scheduling, and educate about individual indicators and strategies for management. Clinicians should also explicitly engage carers who play a critical role in the management of fatigue.

Keywordsstroke; fatigue; rehabilitation; qualitative; carers
Year2022
JournalFrontiers in Neurology
Journal citation13, p. Article 900198
PublisherFrontiers Media S.A.
ISSN1664-2295
Digital Object Identifier (DOI)https://doi.org/10.3389/fneur.2022.900198
PubMed ID35720087
Scopus EID2-s2.0-85132811184
PubMed Central IDPMC9201517
Open accessPublished as ‘gold’ (paid) open access
Page range1-10
FunderWestern Health
Publisher's version
License
File Access Level
Open
Output statusPublished
Publication dates
Online02 Jun 2022
Publication process dates
Accepted05 May 2022
Deposited27 Jul 2023
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Mackay, Christopher P., Kuys, Suzanne S. and Brauer, Sandra G.. (2017). The effect of aerobic exercise on brain-derived neurotrophic factor in people with neurological disorders: A Systematic Review and Meta-Analysis. Neural Plasticity. 2017, pp. 1 - 9. https://doi.org/10.1155/2017/4716197
Accelerometer and global positioning system measurement of recovery of community ambulation across the first 6 months after stroke : An exploratory prospective study
Mahendran, Niruthikha, Kuys, Suzanne S. and Brauer, Sandra G.. (2016). Accelerometer and global positioning system measurement of recovery of community ambulation across the first 6 months after stroke : An exploratory prospective study. Archives of Physical Medicine and Rehabilitation. 97(9), pp. 1465-1472. https://doi.org/10.1016/j.apmr.2016.04.013
Poor mobility in hospitalized adults of all ages
Mudge, Alison, McRae, Prue, McHugh, Kirstie, Griffin, Lauren, Hitchen, Andrew, Walker, James, Cruickshank, Mark, Morris, Norman R. and Kuys, Suzanne Shanelle. (2016). Poor mobility in hospitalized adults of all ages. Journal of Hospital Medicine. 11(4), pp. 289 - 291. https://doi.org/10.1002/jhm.2536
General versus spinal anaesthesia and postoperative delirium in an orthogeriatric population
Ilango, Sivarajah, Pulle, Ranjeev Chrys, Bell, Jack J. and Kuys, Suzanne Shanelle. (2016). General versus spinal anaesthesia and postoperative delirium in an orthogeriatric population. Australasian Journal on Ageing. 35(1), pp. 42 - 47. https://doi.org/10.1111/ajag.12212
Direct inpatient burden caused by foot-related conditions: A multisite point-prevalence study
Lazzarini, Peter A., Hurn, Sheree E., Kuys, Suzanne Shanelle, Kamp, Maarten C., Ng, Vanessa, Thomas, Courtney, Jen, Scott D., Kinnear, Ewan, d'Emden, Michael C. and Reed, Lloyd. (2016). Direct inpatient burden caused by foot-related conditions: A multisite point-prevalence study. BMJ Open. 6(6), pp. 1 - 15. https://doi.org/10.1136/bmjopen-2015-010811
Balance self-efficacy in older adults following inpatient rehabilitation
Kuys, Suzanne S., Donovan, Jacquelin, Mattin, Sarah and Low Choy, Nancy L.. (2015). Balance self-efficacy in older adults following inpatient rehabilitation. International Journal of Rehabilitation Research. 38(2), pp. 167-172. https://doi.org/10.1097/MRR.0000000000000106
Demographics and discharge outcomes of dysvascular and non-vascular lower limb amputees at a subacute rehabilitation unit : A 7-year series
Batten, Heather, Kuys, Suzanne, McPhail, Steven, Varghese, Paulose and Nitz, Jennifer. (2015). Demographics and discharge outcomes of dysvascular and non-vascular lower limb amputees at a subacute rehabilitation unit : A 7-year series. Australian Health Review. 39(1), pp. 76-84. https://doi.org/10.1071/AH14042
A systematic review of axillary web syndrome (AWS)
Yeung, W. M., McPhail, Steven M. and Kuys, Suzanne Shanelle. (2015). A systematic review of axillary web syndrome (AWS). Journal of Cancer Survivorship. 9(4), pp. 576 - 598. https://doi.org/10.1007/s11764-015-0435-1
Comparison of sit-to-stand strategies used by older adults and people living with dementia
Dolecka, Urszula, Ownsworth, Tamara and Kuys, Suzanne. (2015). Comparison of sit-to-stand strategies used by older adults and people living with dementia. Archives of Gerontology and Geriatrics. 60(3), pp. 528 - 534. https://doi.org/10.1016/j.archger.2014.12.007
Prevalence of foot disease and risk factors in general inpatient populations: A systematic review and meta-analysis
Lazzarini, Peter A., Hurn, Sheree E., Fernando, Malindu E., Jen, Scott D., Kuys, Suzanne S., Kamp, Maarten C. and Reed, Lloyd F.. (2015). Prevalence of foot disease and risk factors in general inpatient populations: A systematic review and meta-analysis. BMJ Open. 5(11), pp. 1 - 15. https://doi.org/10.1136/bmjopen-2015-008544
Clinically important improvements in motor function are achievable during inpatient rehabilitation by stroke patients with severe motor disability : A prospective observational study
Hayward, Kathryn, Kuys, Suzanne, Barker, Ruth and Brauer, Sandra. (2014). Clinically important improvements in motor function are achievable during inpatient rehabilitation by stroke patients with severe motor disability : A prospective observational study. NeuroRehabilitation. 34(4), pp. 773 - 779. https://doi.org/10.3233/NRE-141076
Gait speed in ambulant older people in long term care : A systematic review and meta-analysis
Kuys, Suzanne, Peel, Nancye, Klein, Kerenaftali, Slater, Alexandra and Hubbard, Ruth. (2014). Gait speed in ambulant older people in long term care : A systematic review and meta-analysis. Journal of the American Medical Directors Association (JAMDA) (print). 15(3), pp. 194 - 200. https://doi.org/10.1016/j.jamda.2013.10.015
The Queensland High Risk Foot Form (QHRFF) - Is it a reliable and valid tool for foot disease?
Lazzarini, Peter A., Ng, Vanessa, Kinnear, Ewan M., Kamp, Maarten C., Kuys, Suzanne S., Hurst, Cameron and Reed, Lloyd F.. (2014). The Queensland High Risk Foot Form (QHRFF) - Is it a reliable and valid tool for foot disease? Journal of Foot and Ankle Research. 7(7), pp. 1 - 18. https://doi.org/10.1186/1757-1146-7-7
The Queensland high risk foot form (QHRFF) - is it a reliable and valid clinical research tool for foot disease?
Lazzarini, Peter A., Ng, Vanessa, Kinnear, Ewan, Kamp, Maarten C., Kuys, Suzanne Shanelle, Hurst, Cameron and Reed, Lloyd. (2014). The Queensland high risk foot form (QHRFF) - is it a reliable and valid clinical research tool for foot disease? Journal of Foot and Ankle Research. 7(1), pp. 1 - 18. https://doi.org/10.1186/1757-1146-7-7
Use and validation of the balance outcome measure for elder rehabilitation in acute care
Kuys, Suzanne, Crouch, Tom, Dolecka, Urszula, Steele, Michael and Low Choy, Nancy. (2014). Use and validation of the balance outcome measure for elder rehabilitation in acute care. New Zealand Journal of Physiotherapy. 42(1), pp. 16 - 21.
Factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient stroke rehabilitation
Eng, Xue Wen, Brauer, Sandra, Kuys, Suzanne, Lord, Matthew and Hayward, Kathryn. (2014). Factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient stroke rehabilitation. Stroke Research and Treatment. https://doi.org/10.1155/2014/626538
Factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient stroke rehabilitation
Eng, Xue Wen, Brauer, Sandra, Kuys, Suzanne Shanelle, Lord, Matthew and Hayward, Kathryn. (2014). Factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient stroke rehabilitation. Stroke Research and Treatment. https://doi.org/10.1155/2014/626538
Development and preliminary validation of the Acute Brain Injury Physiotherapy Assessment (ABIPA)
Gesch, Janelle, Low Choy, Nancy, Weeks, Benjamin, Passier, Leanne, Nascimento, Margarida, Haines, Terry and Kuys, Suzanne. (2014). Development and preliminary validation of the Acute Brain Injury Physiotherapy Assessment (ABIPA). Brain Impairment. 15(2), pp. 132 - 145. https://doi.org/10.1017/BrImp.2014.13
Activity limitations experienced by people with stroke who received inpatient rehabiliation: Differences between 2001, 2005, and 2011
Kuys, Suzanne Shanelle, Bew, Paul, Lynch, Mary and Brauer, Sandy. (2014). Activity limitations experienced by people with stroke who received inpatient rehabiliation: Differences between 2001, 2005, and 2011. Archives of Physical Medicine and Rehabilitation. 95(4), pp. 741 - 746. https://doi.org/10.1016/j.apmr.2013.12.008
The health outcomes and costs of people attending an interdisciplinary chronic disease service in regional Australia: protocol for a longitudinal cohort investigation
Tyack, Zephanie, Frakes, Kerrie-Anne, Cornwell, Petrea, Kuys, Suzanne, Barnett, Adrian and McPhail, Steven. (2013). The health outcomes and costs of people attending an interdisciplinary chronic disease service in regional Australia: protocol for a longitudinal cohort investigation. BMC Health Services Research. 13(410), pp. 1 - 7. https://doi.org/10.1186/1472-6963-13-410
Physiotherapy students find guided journals useful to develop reflective thinking and practice during their first clinical placement : A qualitative study
Constantinou, Maria and Kuys, Suzanne. (2013). Physiotherapy students find guided journals useful to develop reflective thinking and practice during their first clinical placement : A qualitative study. Physiotherapy (print). 99(1), pp. 49 - 55. https://doi.org/10.1016/j.physio.2011.12.002
Feasibility of an interdisciplinary early intervention for patients with low levels of responsiveness following an acquired brain injury
Seeto, Treena, Kuys, Suzanne Shanelle, Budden, Cassandra, Griffin, Erin, Kajewski, Haylee and McPhail, Steven. (2013). Feasibility of an interdisciplinary early intervention for patients with low levels of responsiveness following an acquired brain injury. Brain Impairment. 14(2), pp. 213 - 221. https://doi.org/10.1017/BrImp.2013.20
Frequency of urinary incontinence in people with chronic heart failure
Hwang, Rita, Chuan, Francine, Peters, Robyn and Kuys, Suzanne. (2013). Frequency of urinary incontinence in people with chronic heart failure. Heart & Lung: the journal of acute and critical care. 42(1), pp. 26 - 31. https://doi.org/10.1016/j.hrtlng.2012.08.003
Feasibility of an interdisciplinary early intervention for patients with low levels of responsiveness following an acquired brain injury
Seeto, Treena, Kuys, Suzanne, Budden, Cassandra, Griffin, Erin, Kajewski, Haylee and McPhail, Steven. (2013). Feasibility of an interdisciplinary early intervention for patients with low levels of responsiveness following an acquired brain injury. Brain Impairment. 14(2), pp. 213 - 221. https://doi.org/10.1017/BrImp.2013.20
Frequency of urinary incontinence in people with chronic heart failure
Hwang, Rita, Chuan, Francine, Peters, Robyn and Kuys, Suzanne Shanelle. (2013). Frequency of urinary incontinence in people with chronic heart failure. Heart & Lung: the journal of acute and critical care. 42(1), pp. 26 - 31. https://doi.org/10.1016/j.hrtlng.2012.08.003
Feasibility of gaming console exercise and its effect on endurance, gait and balance in people with an acquired brain injury
McClanachan, Nelson, Gesch, Janelle, Wuthapanich, Nampech, Fleming, Jennifer and Kuys, Suzanne Shanelle. (2013). Feasibility of gaming console exercise and its effect on endurance, gait and balance in people with an acquired brain injury. Brain Injury. 27(12), pp. 1402 - 1408. https://doi.org/10.3109/02699052.2013.823654
Feasibility of gaming console exercise and its effect on endurance, gait and balance in people with an acquired brain injury
McClanachan, Nelson, Gesch, Janelle, Wuthapanich, Nampech, Fleming, Jennifer and Kuys, Suzanne. (2013). Feasibility of gaming console exercise and its effect on endurance, gait and balance in people with an acquired brain injury. Brain Injury. 27(12), pp. 1402 - 1408. https://doi.org/10.3109/02699052.2013.823654
What are the key conditions associated with lower limb amputations in a major Australian teaching hospital?
Lazzarini, Peter, O'Rourke, Sharon, Russell, Anthony, Clark, Damien and Kuys, Suzanne Shanelle. (2012). What are the key conditions associated with lower limb amputations in a major Australian teaching hospital? Journal of Foot and Ankle Research. 5(12), pp. 1 - 9. https://doi.org/10.1186/1757-1146-5-12
What are the key conditions associated with lower limb amputations in a major Australian teaching hospital?
Lazzarini, Peter, O'Rourke, Sharon, Russell, Anthony, Clark, Damien and Kuys, Suzanne. (2012). What are the key conditions associated with lower limb amputations in a major Australian teaching hospital? Journal of Foot and Ankle Research. 5(1), pp. 1 - 9. https://doi.org/10.1186/1757-1146-5-12
Activity level of hospital medical inpatients: An observational study
Kuys, Suzanne S., Dolecka, Urszula E. and Guard, Amanda. (2012). Activity level of hospital medical inpatients: An observational study. Archives of Gerontology and Geriatrics. 55(2), pp. 417 - 421. https://doi.org/10.1016/j.archger.2012.02.008
Can Wii work it out?
Cyarto, Elizabeth V., Kuys, Suzanne, Henwood, Tim R. and Blackberry, Irene. (2011). Can Wii work it out? Telecommunications Journal of Australia. 61(3), pp. 37.1 - 37.12.
Higher-intensity treadmill walking during rehabilitation after stroke in feasible and not detrimental to walking pattern or quality: A pilot randomized trial
Kuys, Suzanne S., Brauer, Sandra G. and Ada, Louise. (2011). Higher-intensity treadmill walking during rehabilitation after stroke in feasible and not detrimental to walking pattern or quality: A pilot randomized trial. Clinical Rehabilitation. 25(4), pp. 316 - 326. https://doi.org/10.1177/0269215510382928
Higher-intensity treadmill walking during rehabilitation after stroke in feasible and not detrimental to walking pattern or quality : A pilot randomized trial
Kuys, Suzanne, Brauer, Sandra and Ada, Louise. (2011). Higher-intensity treadmill walking during rehabilitation after stroke in feasible and not detrimental to walking pattern or quality : A pilot randomized trial. Clinical Rehabilitation. 25(4), pp. 316 - 326. https://doi.org/10.1177/0269215510382928
Appropriate seating for medical patients: An audit
Kuys, Suzanne, Dolecka, Urszula and Morrison, Carol. (2011). Appropriate seating for medical patients: An audit. Australian Health Review. 35(3), pp. 316 - 319. https://doi.org/10.1071/AH10943
Changes in falls risk factors for geriatric diagnostic groups across inpatient, outpatient and domiciliary rehabilitation settings
Morrison, Gregory, Lee, Huang-Ling, Kuys, Suzanne, Clarke, Jane, Bew, Paul and Haines, Terry. (2011). Changes in falls risk factors for geriatric diagnostic groups across inpatient, outpatient and domiciliary rehabilitation settings. Disability and Rehabilitation. 33(11), pp. 900 - 907. https://doi.org/10.3109/09638288.2010.514019
Trial of an allied health workload allocation model
Simmons, Nadine and Kuys, Suzanne. (2011). Trial of an allied health workload allocation model. Australian Health Review. 35(2), pp. 168 - 175. https://doi.org/10.1071/AH09860
Test-retest reliability of the GAITRite system in people with stroke undergoing rehabilitation
Kuys, Suzanne, Brauer, Sandra and Ada, Louise. (2011). Test-retest reliability of the GAITRite system in people with stroke undergoing rehabilitation. Disability and Rehabilitation. 33(19-20), pp. 1848 - 1853. https://doi.org/10.3109/09638288.2010.549895
Appropriate seating for medical patients: An audit
Kuys, Suzanne S., Dolecka, Urszula E. and Morrison, Carol A.. (2011). Appropriate seating for medical patients: An audit. Australian Health Review. 35(3), pp. 316 - 319. https://doi.org/10.1071/AH10943
Gaming console exercise and cycle or treadmill exercise provide similar cardiovascular demand in adults with cystic fibrosis : A randomised cross-over trial
Kuys, Suzanne, Hall, Kathleen, Peasey, Maureen, Wood, Michelle, Cobb, Robyn and Bell, Scott. (2011). Gaming console exercise and cycle or treadmill exercise provide similar cardiovascular demand in adults with cystic fibrosis : A randomised cross-over trial. Journal of Physiotherapy. 57(1), pp. 35 - 40. https://doi.org/10.1016/S1836-9553(11)70005-4
Trial of an allied health workload allocation model
Simmons, Nadine and Kuys, Suzanne Shanelle. (2011). Trial of an allied health workload allocation model. Australian Health Review. 35(2), pp. 168 - 175. https://doi.org/10.1071/AH09860
Dose-response relationship between physiotherapy resource provision with function and balance improvements in patients following stroke : A multi-centre observational study
Haines, Terry, Kuys, Suzanne, Clarke, Jane, Morrison, Gregory and Bew, Paul. (2011). Dose-response relationship between physiotherapy resource provision with function and balance improvements in patients following stroke : A multi-centre observational study. Journal of Evaluation in Clinical Practice. 17(1), pp. 136 - 142. https://doi.org/10.1111/j.1365-2753.2010.01380.x
Higher-intensity treadmill walking during rehabilitation after stroke in feasible and not detrimental to walking pattern or quality: A pilot randomized trial
Kuys, Suzanne, Brauer, Sandra and Ada, Louise. (2011). Higher-intensity treadmill walking during rehabilitation after stroke in feasible and not detrimental to walking pattern or quality: A pilot randomized trial. Clinical Rehabilitation. 25(4), pp. 316 - 326. https://doi.org/10.1177/0269215510382928