Managing everyday life: Self-management strategies people use to live well with neurological conditions
Open accessAbstract
OBJECTIVE: This paper uses the Taxonomy of Everyday Self-management Strategies (TEDSS) to provide insight and understanding into the complex and interdependent self-management strategies people with neurological conditions use to manage everyday life. METHODS: As part of a national Canadian study, structured telephone interviews were conducted monthly for eleven months, with 117 people living with one or more neurological conditions. Answers to five open-ended questions were analyzed using qualitative content analysis. A total of 7236 statements were analyzed. RESULTS: Findings are presented in two overarching patterns: 1) self-management pervades all aspects of life, and 2) self-management is a chain of decisions and behaviours. Participants emphasized management of daily activities and social relationships as important to maintaining meaning in their lives. CONCLUSION: Managing everyday life with a neurological condition includes a wide range of diverse strategies that often interact and complement each other. Some people need to intentionally manage every aspect of everyday life. PRACTICE IMPLICATIONS: For people living with neurological conditions, there is a need for health providers and systems to go beyond standard advice for self-management. Self-management support is best tailored to each individual, their life context and the realities of their illness trajectory.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The TEDSS framework was derived from the literature and interviews with 117 individuals living with chronic neurological conditions.
“The TEDSS framework, derived from the literature and interviews with 117 individuals living with chronic neurological conditions, was chosen for its robust and comprehensive categorization of strategies commonly used and considered important by people living with chronic conditions [19,30,31].”
From Features of Structured, One-to-One Videoconference Interventions That Actively Engage People in the Management of Their Chronic Conditions: Scoping Review (2025) · cites this paper as [31]
The Design and setting section says TEDSS emerged from the LINC study, and the Discussion says interviews with 117 participants supplied data also used to validate and refine TEDSS. Our copy does not say the framework was derived from the literature, so that part of the attributed claim is unsupported. (LLM, conf=0.84)
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
The qualitative content analysis process
Elo, S., & Kyngäs, H. (2008) · Journal of Advanced Nursing · doi:10.1111/j.1365-2648.2007.04569.x · Cited by 22,617 · see citing works
Managing chronic illness at home: Three lines of work
Corbin, J., & Strauss, A. (1985) · Qualitative Sociology · doi:10.1007/bf00989485 · Cited by 710 · see citing works
The effects of respite care on informal carers' well-being: a systematic review
McNally, S., BEN-SHLOMOOE, Y., & Newman, S. P. (1999) · Disability and Rehabilitation · doi:10.1080/096382899298043 · Cited by 156 · see citing works
Salsman, J. M., Victorson, D. E., Choi, S. W., Peterman, A. H., Heinemann, A. W., Nowinski, C. J., & Cella, D. F. (2013) · Quality of Life Research · doi:10.1007/s11136-013-0382-0 · Cited by 141 · see citing works
Medication management: The perspectives of people with dementia and family carers
While, C., Duane, F. M., Beanland, C., & Koch, S. H. (2012) · Dementia · doi:10.1177/1471301212444056 · Cited by 77 · see citing works
The Voice of the Parkinson Customer
Vlaanderen, F. P., Rompen, L., Munneke, M., Stoffer, M., Bloem, B. R., & Faber, M. J. (2018) · Journal of Parkinson s Disease · doi:10.3233/jpd-181431 · Cited by 67 · see citing works
Audulv, Å., Ghahari, S., Kephart, G., Warner, G., & Packer, T. L. (2019) · Patient Education and Counseling · doi:10.1016/j.pec.2018.08.034 · Cited by 66 · see citing works
Self-citationBoger, E. J., Demain, S. H., & Latter, S. M. (2014) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2014.05.006 · Cited by 64 · see citing works
The Path to Self-Management: A Qualitative Study Involving Older People with Multiple Sclerosis
Ploughman, M., Austin, M. W., Murdoch, M., Kearney, A., Godwin, M. S., & Stefanelli, M. (2011) · Physiotherapy Canada · doi:10.3138/ptc.2010-42 · Cited by 60 · see citing works
Packer, T. L., Fracini, A., Audulv, Å., Alizadeh, N., van Gaal, B. G. I., Warner, G., & Kephart, G. (2018) · Patient Education and Counseling · doi:10.1016/j.pec.2017.10.014 · Cited by 54 · see citing works
Self-citationThe Patient Activation Measure: a validation study in a neurological population
Packer, T. L., Kephart, G. C., Ghahari, S., Audulv, Å., Versnel, J., & Warner, G. (2015) · Quality of Life Research · doi:10.1007/s11136-014-0908-0 · Cited by 53 · see citing works
Self-citationDevelopment of a Chronic Care Model for Neurological Conditions (CCM-NC)
Jaglal, S. B., Guilcher, S. J. T., Bereket, T., Kwan, M., Munce, S., Conklin, J., Versnel, J., Packer, T. L., Verrier, M. C., Marras, C., et al. (2014) · BMC Health Services Research · doi:10.1186/1472-6963-14-409 · Cited by 44 · see citing works
Self-citationPatients' perception of epilepsy and threat to self-identity: A qualitative approach
Hosseini, N., Sharif, F., Ahmadi, F., & Zare, M. (2013) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2013.06.003 · Cited by 39 · see citing works
Sajatovic, M., Tatsuoka, C. M., Welter, E., Colón-Zimmermann, K., Blixen, C. E., Perzynski, A. T., Amato, S., Cage, J. L., Sams, J., Moore, S. M., et al. (2017) · American Journal of Health Promotion · doi:10.1177/0890117117695218 · Cited by 39 · see citing works
Warner, G., Packer, T. L., Kervin, E., Sibbald, K., & Audulv, Å. (2019) · Patient Education and Counseling · doi:10.1016/j.pec.2019.07.002 · Cited by 38 · see citing works
Self-citationKlepo, I., Jokić, C. S., & Tršinski, D. (2020) · Disability and Rehabilitation · doi:10.1080/09638288.2020.1858351 · Cited by 38 · see citing works
Ridsdale, L., Wojewodka, G., Robinson, E. J., Noble, A. J., Morgan, M., Taylor, S. J., McCrone, P., Richardson, M. P., Baker, G. A., Landau, S., et al. (2018) · Epilepsia · doi:10.1111/epi.14073 · Cited by 28 · see citing works
Miller, W. R., Bakas, T., & Buelow, J. M. (2013) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2013.11.011 · Cited by 25 · see citing works
Frost, J., Grose, J., & Britten, N. (2016) · Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine · doi:10.1177/1363459316674787 · Cited by 20 · see citing works
Versnel, J., Packer, T. L., Weeks, L. E., Brown, J., Godwin, M. S., Hutchinson, S. R., Kephart, G. C., MacKenzie, D. E., Roger, K. S., Stadnyk, R. L., et al. (2013) · BMC Neurology · doi:10.1186/1471-2377-13-30 · Cited by 19 · see citing works
Self-citationKulnik, S. T., Hollinshead, L., & Jones, F. (2018) · Disability and Rehabilitation · doi:10.1080/09638288.2018.1424953 · Cited by 19 · see citing works
Gunn, H., Endacott, R., Haas, B. M., Marsden, J. F., & Freeman, J. A. (2017) · Disability and Rehabilitation · doi:10.1080/09638288.2017.1362041 · Cited by 18 · see citing works
Kaddumukasa, M., Nakibuuka, J., Mugenyi, L., Namusoke, O., Birungi, D., Kabaala, B., Blixen, C. E., Katabira, E. T., Furlan, A. J., & Sajatovic, M. (2018) · Journal of the Neurological Sciences · doi:10.1016/j.jns.2017.12.032 · Cited by 15 · see citing works
Harrison, A. M., Bogosian, A., Silber, E., McCracken, L. M., & Moss-Morris, R. E. (2014) · Multiple Sclerosis Journal · doi:10.1177/1352458514544538 · Cited by 12 · see citing works
Determining the disease management process for epileptic patients: A qualitative study
Sharif, F., Hosseini, N., Ahmadi, F., & Zare, M. (2016) · Iranian Journal of Nursing and Midwifery Research · doi:10.4103/1735-9066.174748 · Cited by 11 · see citing works
Finding meaning and purpose: a framework for the self-management of neurological conditions
Kılınç, S., Erdem, H., Healey, R., & Cole, J. (2020) · Disability and Rehabilitation · doi:10.1080/09638288.2020.1764115 · Cited by 10 · see citing works
Leavy, B., Berntsson, J., Franzén, E., & Roaldsen, K. S. (2017) · Disability and Rehabilitation · doi:10.1080/09638288.2017.1417498 · Cited by 9 · see citing works
Keddy, A. C., Packer, T. L., Audulv, Å., Sutherland, L., Sampalli, T., Edwards, L., & Kephart, G. C. (2020) · Healthcare Management Forum · doi:10.1177/0840470420942262 · Cited by 7 · see citing works
Self-citationExploring the self-Management strategies in people with multiple sclerosis
Tahajjodi, R., Parvaneh, S., Ghahari, S., & Negarandeh, R. (2016) · DOAJ (DOAJ: Directory of Open Access Journals) · Cited by 5 · see citing works
Flagged first, then by citations
Research works printed but not linked: 1
- T.L. Packer, T. Sampalli, A.C. Keddy, G. Kephart, Å. Audulv, S. Ryan-Carson, L. Sutherland, M. Burton, M. Mooney, K. Bartholomew-Pushie, K. MacLean, I. d'Entremont, Using the Taxonomy of Everyday Self-Management Strategies (TEDSS) framework to guide quality improvement in chronic disease management in Nova Scotia, Canadian Association for Health Services and Policy Research Conference, Halifax, Canada, 2019.
Cited by
Sorted by citations
Climate change and disorders of the nervous system
Sisodiya, S. M., Gulcebi, M. I., Fortunato, F., Mills, J. D., Haynes, E., Bramon, E., Chadwick, P., Ciccarelli, O., David, A. S., De Meyer, K., et al. (2024) · The Lancet Neurology · doi:10.1016/s1474-4422(24)00087-5 · Cited by 105 · see citing works
O’Callaghan, G., Fahy, M. P., Murphy, P., Langhorne, P., Galvin, R., & Horgan, F. (2022) · BMC Health Services Research · doi:10.1186/s12913-022-08473-6 · Cited by 48 · see citing works
Chae, S., Song, J., Ojo, M., Bowles, K. H., McDonald, M. V., Barrón, Y., Hobensack, M., Kennedy, E. E., Sridharan, S., Evans, L., et al. (2022) · Heart & Lung · doi:10.1016/j.hrtlng.2022.05.004 · Cited by 17 · see citing works
Self-management from the perspective of people with stroke – An interview study
Klockar, E., Kylén, M., Gustavsson, C., Finch, T. L., Jones, F., & Elf, M. (2023) · Patient Education and Counseling · doi:10.1016/j.pec.2023.107740 · Cited by 14 · see citing works
Osako, M., Yamaoka, Y., Takeuchi, C., Fujiwara, T., & Mochizuki, Y. (2023) · Neurology Clinical Practice · doi:10.1212/cpj.0000000000200130 · Cited by 12 · see citing works
Self-management of falls in people with multiple sclerosis: A scoping review
Johnson, S. T., Flink, M., Peterson, E. W., Gottberg, K., Elf, M., Johansson, S., Kierkegaard, M., & Ytterberg, C. (2022) · Clinical Rehabilitation · doi:10.1177/02692155221128723 · Cited by 11 · see citing works
Kephart, G. C., Packer, T. L., Audulv, Å., Chen, Y.-T., Robinson, A., Olsson, I., & Warner, G. (2022) · Quality of Life Research · doi:10.1007/s11136-022-03165-4 · Cited by 9 · see citing works
Self-citationCadel, L., Cimino, S. R., Bradley-Ridout, G., Hitzig, S. L., Packer, T. L., McCarthy, L. M., Patel, T., Lofters, A., Hahn‐Goldberg, S., Ho, C., et al. (2023) · PLoS ONE · doi:10.1371/journal.pone.0284199 · Cited by 9 · see citing works
Self-citationMoreels, T., Cruyt, E., Baets, S. D., Andries, L., Arts-Tielemans, M., Rodríguez‐Bailón, M., Bergström, A., Boete, K., Bormans, I., Costa, U. M., et al. (2023) · BMJ Open · doi:10.1136/bmjopen-2023-075676 · Cited by 6 · see citing works
Johnson, S. T., Ytterberg, C., Peterson, E. W., Johansson, S., Kierkegaard, M., Gottberg, K., & Flink, M. (2024) · Health Expectations · doi:10.1111/hex.14154 · Cited by 5 · see citing works
Pryde, S. J., Williams, O., O’Hare, M. P., Murdock, C., & Pedlow, K. (2024) · Disability and Rehabilitation · doi:10.1080/09638288.2024.2338198 · Cited by 4 · see citing works
Health care transition for cerebral palsy with intellectual disabilities: A systematic review
Osako, M., Yamaoka, Y., Takeuchi, C., Mochizuki, Y., & Fujiwara, T. (2023) · Revue Neurologique · doi:10.1016/j.neurol.2022.11.013 · Cited by 4 · see citing works
Ekici, G., Temizkan, E., & PEKŞEN, E. (2021) · Ergoterapi ve Rehabilitasyon Dergisi · doi:10.30720/ered.930289 · Cited by 3 · see citing works
Larsson-Lund, M., Barchéus, I.-M., Ranner, M., Vikman, I., Jacobsson, L., & Lexell, E. M. (2025) · BMC Health Services Research · doi:10.1186/s12913-025-12456-8 · Cited by 3 · see citing works
Olsson, I., Kephart, G. C., Packer, T. L., Björk, S., Isaksson, U., Chen, Y.-T., Nordström, A., & Audulv, Å. (2025) · Journal of Patient-Reported Outcomes · doi:10.1186/s41687-025-00892-3 · Cited by 3 · see citing works
Self-citationPatrick, S. E., Knox, K. B., Evans, C. D., Levin, M. C., Linassi, G. A., Poliakov, I., Rajput, A. H., & Donkers, S. J. (2024) · Frontiers in Neurology · doi:10.3389/fneur.2024.1332859 · Cited by 3 · see citing works
Chen, Y.-T., Lehman, M., Van Denend, T., Kish, J., Wu, Y., Preissner, K., Plow, M., & Packer, T. L. (2025) · Journal of Medical Internet Research · doi:10.2196/58543 · Cited by 3 · see citing works
“The TEDSS framework, derived from the literature and interviews with 117 individuals living with chronic neurological conditions, was chosen for its robust and comprehensive categorization of strategies commonly used and considered important by people living with chronic conditions [19,30,31].”
Self-citationSupported transitional care applied to stroke survivors: A meta-analysis
Liang, S., Xie, H., Ye, L., Huang, C., Yuan, F., & Tang, Y. (2024) · Advances in Clinical and Experimental Medicine · doi:10.17219/acem/186957 · Cited by 2 · see citing works
Effects of a Self-Management Program on Adults with Stroke: A Quasi-Experimental Study
Pereira, C. M., Branco, D., Salvador, D., Dias, T. L., Carvalho, D., Matos, M., Rodrigues, S., Calheiros, J. M., Marques, A. M., & Jones, F. (2025) · Healthcare · doi:10.3390/healthcare13050495 · Cited by 2 · see citing works
Braake, E. T., Schriemer, R., Grünloh, C., Ahoud, S., Asselberghs, T., Bodelier, V., Hansen, D., Ophuis, C. M. C. O., & Wolkorte, R. (2025) · Rheumatology International · doi:10.1007/s00296-025-05842-2 · Cited by 2 · see citing works
Gravesteijn, A. S., Ouwerkerk, M., Eijssen, I. C. J. M., Beckerman, H., & de Groot, V. (2024) · Journal of Rehabilitation Medicine · doi:10.2340/jrm.v56.40838 · Cited by 1 · see citing works
Tenison, E., Ben‐Shlomo, Y., & Henderson, E. J. (2026) · European Geriatric Medicine · doi:10.1007/s41999-026-01417-x · Cited by 1 · see citing works
Joseph, C., Balogun, O. J., Kasser, S. L., & Escorpizo, R. S. (2026) · Disability and Rehabilitation · doi:10.1080/09638288.2026.2694102 · Cited by 1 · see citing works
Olsson, I., Björk, S., Isaksson, U., Packer, T. L., Kephart, G. C., Nordström, A., & Audulv, Å. (2025) · Scandinavian Journal of Primary Health Care · doi:10.1080/02813432.2025.2511070 · Cited by 1 · see citing works
Self-citationMøller, L. A., Martinsen, B., Werlauff, U., & Dreyer, P. (2021) · Journal of Clinical Nursing · doi:10.1111/jocn.16065 · Cited by 1 · see citing works
Engaging patients in the management of orthostatic intolerance
Idiaquez, J. F., Casar, J. C., Idiaquez, J. F., & Biaggioni, I. (2023) · Clinical Autonomic Research · doi:10.1007/s10286-023-00990-6
Sandström, C., Mårtensson, E., & Hellman, T. (2024) · Scandinavian Journal of Occupational Therapy · doi:10.1080/11038128.2024.2304189
Supporting self-management in adults after stroke - synthesis of qualitative studies
Bečvářová, R., & Gurková, E. (2024) · Central European Journal of Nursing and Midwifery · doi:10.15452/cejnm.2024.15.0026
Prioritise education and empower individuals
Lyttle, D. (2024) · British Journal of Neuroscience Nursing · doi:10.12968/bjnn.2024.0082
Crozier, O., Cimino, S. R., Alvarez, L., Johnson, A. M., & Holmes, J. D. (2025) · Disability and Rehabilitation · doi:10.1080/09638288.2025.2496784
Larsson-Lund, M., Sundbaum, J. K., Lexell, E. M., & Spinord, L. (2025) · BMJ Open · doi:10.1136/bmjopen-2025-102026
Necessidades de autogestão após AVC: perspetivas de pessoas com AVC e cuidadores informais
de Carvalho, D. R., Matos, M., Calheiros, J. M., & Pereira, C. M. (2025) · Revista Portuguesa de Investigação Comportamental e Social · doi:10.31211/rpics.2025.11.2.365
Taylor, S. C., Zelinsky, M., Lioi, A. B., Petschek, I., Aguiar, M., Kundu, S., Darling, S., Arrotta, K., Gallagher, L. M., Supan, A., et al. (2025) · Telemedicine Journal and e-Health · doi:10.1177/15305627251401524
O’Callaghan, G., Fahy, M., Murphy, P., Langhorne, P., Galvin, R., & Horgan, F. (2022) · Figshare · doi:10.6084/m9.figshare.20705354
Olsson, I., Kephart, G. C., Packer, T. L., Björk, S., Isaksson, U., Nordström, A., & Audulv, Å. (2026) · Quality of Life Research · doi:10.1007/s11136-025-04124-5
Self-citationKolić, P. V., Hearn, J. H., Jacques, M. F., Ramdharry, G. M., & Morse, C. I. (2026) · Journal of Health Psychology · doi:10.1177/13591053261417031 · Cited by 1 · see citing works
Yamaguchi, S., & Yatsushiro, R. (2026) · PLoS neglected tropical diseases · doi:10.1371/journal.pntd.0014055
A nursing process for self-management support in home healthcare: A qualitative study
Audulv, Å., Wiklund, N., Lönneborg, L., & Gerdin, A. L. (2026) · International Journal of Nursing Studies Advances · doi:10.1016/j.ijnsa.2026.100551
Self-citationHaug, S., Weber, K., & Currle, E. (2026) · Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz · doi:10.1007/s00103-026-04295-7
Li, X., Liu, Y., & Wang, Y. (2026) · Multimodal Technologies and Interaction · doi:10.3390/mti10090094
- Authors
- Audulv, Å., Hutchinson, S., Warner, G., Kephart, G., Versnel, J., & Packer, T. L.
- Affiliations
- Mid Sweden University (SE)
- Dalhousie University (CA)
- Corresponding author
- Audulv, Åsa
- Venue
- Patient Education and Counseling
- Publisher
- Elsevier BV
- Published
- 2021-02
- Volume
- 104
- Issue
- 2
- Pages
- 413-421
- ISSN
- 0738-3991 (ISSN-L)
- OpenAlex
- W3046687596
- Cited by
- 41
- References
- 29
- Citations by year
- 2026: 9 · 2025: 10 · 2024: 9 · 2023: 6 · 2022: 5 · 2021: 2
- FWCI
- 5.00
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Patient Education and Counseling (publishedVersion, cc-by)
- PubMed (publishedVersion)
- KTH Publication Database DiVA (KTH Royal Institute of Technology) (submittedVersion, other-oa)
- Radboud Repository (Radboud University) (submittedVersion)
- Radboud Repository (Radboud University) (submittedVersion, other-oa)
- Funders
- Neuroförbundet
- Canadian Institutes of Health Research
- Nova Scotia Health Research Foundation
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Health Professions › Occupational Therapy › Occupational Therapy Practice and Research
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Education
- Keywords
- self-management strategies, neurological disorders, daily life management, daily activities, interpersonal relationships, meaning in life, self-management support, illness trajectory
- MeSH terms
- Self-Management, Canada, Humans, Interpersonal Relations, Qualitative Research
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
