Exploring the perspectives on medication self-management among persons with spinal cord injury/dysfunction and providers
Abstract
Rationale Spinal cord injury/dysfunction (SCI/D) is an exemplar condition with a high prevalence of secondary complications, chronic conditions and use of multiple medications (polypharmacy). Optimizing medication self-management is important for persons with SCI/D to improve outcomes; however, there is a lack of research on how healthcare/service providers and persons with SCI/D experience medication self-management.Objective To explore attitudes and experiences of medication self-management from the perspectives of persons with SCI/D and providers, and to explore the extent to which the Taxonomy of Everyday Self-management Strategies (TEDSS) framework captured participants' experiences with medication self-management.Methods In-depth, semi-structured interviews were conducted by telephone until data saturation was reached. Interviews were transcribed verbatim and analyzed using constant comparative approaches. The TEDSS framework was adapted and applied deductively.Results Fifty-one individuals participated in this study, 32 providers and 19 persons with SCI/D. Disease controlling strategies was the domain discussed in most detail by all participants. In this domain, participants discussed managing medications and treatments, monitoring/managing side effects, and controlling complications. Process strategies (problem-solving, decision-making) and resource strategies (seeking support) were the next most frequently discussed domains. Among all participant groups, there was a lack of detailed discussion of social interactions, health behaviour, and internal strategies. Medication self-management support was not extensively discussed by any group.Conclusion This study highlighted the complex nature of medication self-management. While persons with SCI/D and providers discussed similar components of the TEDSS framework, providers had minimal reflections on the impact of medication self-management on everyday life. This study identified the need for explicit discussions between providers and persons with SCI/D, involving all components of self-management and self-management support in order to improve medication self-management.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
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 7 TEDSS domains have been used to successfully identify and describe content in self-management interventions, including in scoping reviews.
“The 7 distinctive TEDSS domains (Textbox 2) have been used to successfully identify and describe content in self-management interventions [32,33], including in scoping reviews [11,34].”
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 [32]
Cites
Tong, A., Sainsbury, P., & Craig, J. (2007) · International Journal for Quality in Health Care · doi:10.1093/intqhc/mzm042 · Cited by 42,509 · see citing works
(1990) · Cited by 24,217 · see citing works
Qualitative Data Analysis: A Methods Sourcebook
Miles, M. B., Huberman, A. M., & Saldaña, J. (1988) · Cited by 20,701 · see citing works
Qualitative evaluation and research methods
Ellis, D. J. (1990) · International Journal of Information Management · doi:10.1016/0268-4012(90)90041-p · Cited by 17,942 · see citing works
Closing the gap in a generation: health equity through action on the social determinants of health
Marmot, M. G., Friel, S., Bell, R., Houweling, T. A. J., & Taylor, S. A. J. (2008) · The Lancet · doi:10.1016/s0140-6736(08)61690-6 · Cited by 8,238 · see citing works
Self-management approaches for people with chronic conditions: a review
Barlow, J., Wright, C., Sheasby, J., Turner, A., & Hainsworth, J. (2002) · Patient Education and Counseling · doi:10.1016/s0738-3991(02)00032-0 · Cited by 2,800 · see citing works
Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge
Thorne, S. E., Kirkham, S. R., & MacDonald‐Emes, J. (1997) · Research in Nursing & Health · doi:10.1002/(sici)1098-240x(199704)20:2 · Cited by 1,730 · see citing works
A Systematic Review of Prevalence Studies on Multimorbidity: Toward a More Uniform Methodology
Fortin, M., Stewart, M., Poitras, M.-È., Almirall, J., & Maddocks, H. L. (2012) · The Annals of Family Medicine · doi:10.1370/afm.1337 · Cited by 1,131 · see citing works
QUAGOL: A guide for qualitative data analysis
de Casterlé, B. D., Gastmans, C., Bryon, E., & Denier, Y. (2011) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2011.09.012 · Cited by 801 · see citing works
Health Outcomes Associated with Polypharmacy in Community‐Dwelling Older Adults: A Systematic Review
Fried, T. R., O’Leary, J. R., Towle, V. R., Goldstein, M. K., Trentalange, M. J., & Martin, D. K. (2014) · Journal of the American Geriatrics Society · doi:10.1111/jgs.13153 · Cited by 727 · 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
Processes of Self‐Management in Chronic Illness
Schulman‐Green, D., Jaser, S., Martin, F., Alonzo, A., Grey, M., McCorkle, R., Redeker, N. S., Reynolds, N., & Whittemore, R. (2012) · Journal of Nursing Scholarship · doi:10.1111/j.1547-5069.2012.01444.x · Cited by 657 · see citing works
Hunt, M. R. (2009) · Qualitative Health Research · doi:10.1177/1049732309344612 · Cited by 538 · see citing works
Dinh, T. T. H., Bonner, A., Clark, R. A., Ramsbotham, J., & Hines, S. J. (2016) · The JBI Database of Systematic Reviews and Implementation Reports · doi:10.11124/jbisrir-2016-2296 · Cited by 497 · see citing works
Burns, A. L. (2008) · Journal of the American Pharmacists Association · doi:10.1331/japha.2008.08514 · Cited by 477 · see citing works
Glasgow, R. E., Funnell, M. M., Bonomi, A. E., Davis, C., Beckham, V., & Wagner, E. H. (2002) · Annals of Behavioral Medicine · doi:10.1207/s15324796abm2402_04 · Cited by 376 · see citing works
Warren, C. A. B. (2001) · Sage eBooks · doi:10.4135/9781412973588.n7 · Cited by 318 · see citing works
Prevalence and patterns of chronic disease multimorbidity and associated determinants in Canada
Roberts, K. C., Rao, D. P., Bennett, T.-L., Loukine, L., & Jayaraman, G. (2015) · Health Promotion and Chronic Disease Prevention in Canada · doi:10.24095/hpcdp.35.6.01 · Cited by 308 · see citing works
White, M., Garbez, R., Carroll, M., Brinker, E., & Howie‐Esquivel, J. (2013) · The Journal of Cardiovascular Nursing · doi:10.1097/jcn.0b013e31824987bd · Cited by 236 · see citing works
A conceptual framework to study medication adherence in older adults
MURRAY, M. (2004) · The American Journal of Geriatric Pharmacotherapy · doi:10.1016/s1543-5946(04)90005-0 · Cited by 222 · see citing works
Adriaansen, J. J. E., Ruijs, L. S., van Koppenhagen, C. F., van Asbeck, F. W., Snoek, G. J., van Kuppevelt, D., Visser‐Meily, J. M. A., & Post, M. W. M. (2016) · Journal of Rehabilitation Medicine · doi:10.2340/16501977-2166 · Cited by 204 · see citing works
DeJong, G., Tian, W., Hsieh, C. J., Junn, C., Karam, C. S., Ballard, P. H., Smout, R. J., Horn, S. D., Zanca, J. M., Heinemann, A. W., et al. (2013) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2012.10.037 · Cited by 195 · see citing works
Individualized asthma self-management improves medication adherence and markers of asthma control
Janson, S. L., McGrath, K. W., Covington, J. K., Cheng, S., & Boushey, H. A. (2009) · Journal of Allergy and Clinical Immunology · doi:10.1016/j.jaci.2009.01.053 · Cited by 195 · see citing works
Townsend, A. F., Wyke, S., & Hunt, K. (2006) · Chronic Illness · doi:10.1177/17423953060020031301 · Cited by 194 · see citing works
Using Action Plans to Help Primary Care Patients Adopt Healthy Behaviors: A Descriptive Study
Handley, M., MacGregor, K., Schillinger, D., Sharifi, C., Wong, S., & Bodenheimer, T. (2006) · The Journal of the American Board of Family Medicine · doi:10.3122/jabfm.19.3.224 · Cited by 159 · see citing works
Griffey, R. T., Shin, N., Jones, S., Aginam, N., Gross, M., Kinsella, Y., Williams, J. A. S., Carpenter, C. R., Goodman, M. S., & Kaphingst, K. A. (2015) · Journal of Communications In Healthcare · doi:10.1179/1753807615y.0000000001 · Cited by 149 · see citing works
Rivers, C. S., Fallah, N., Noonan, V. K., Whitehurst, D. G. T., Schwartz, C. E., Finkelstein, J. A., Craven, B. C., Ethans, K. D., O’Connell, C. M., Truchon, B. C., et al. (2017) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2017.06.012 · Cited by 134 · see citing works
Houlihan, B. V., Brody, M., Skeels, S. E., Pernigotti, D., Burnett, S., Zazula, J., Green, C., Hasiotis, S., Belliveau, T., Seetharama, S., et al. (2017) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2017.02.005 · Cited by 105 · see citing works
Cani, C. G., Lopes, L. D. S. G., Queiroz, M. S., & Nery, M. (2015) · Clinics · doi:10.6061/clinics/2015(02)06 · Cited by 86 · see citing works
Wishah, R. A., Al-Khawaldeh, O. A., & Albsoul-Younes, A. M. (2014) · Diabetes & Metabolic Syndrome Clinical Research & Reviews · doi:10.1016/j.dsx.2014.09.001 · Cited by 86 · see citing works
The risks of polypharmacy following spinal cord injury
Kitzman, P. H., Cecil, D., & Kolpek, J. H. (2014) · Journal of Spinal Cord Medicine · doi:10.1179/2045772314y.0000000235 · Cited by 84 · see citing works
Ellis, J., Boger, E. J., Latter, S. M., Kennedy, A. P., Jones, F., Foster, C. L., & Demain, S. H. (2017) · Social Science & Medicine · doi:10.1016/j.socscimed.2017.01.018 · Cited by 84 · see citing works
Rintala, D. H., Garber, S. L., Friedman, J. D., & Holmes, S. A. (2008) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2008.01.015 · Cited by 77 · see citing works
Slater, B. A., Huang, Y., & Dalawari, P. (2017) · Journal of Emergency Medicine · doi:10.1016/j.jemermed.2017.06.032 · Cited by 67 · see citing works
Sweet, S. N., Noreau, L., Leblond, J., & Ginis, K. A. M. (2015) · Disability and Rehabilitation · doi:10.3109/09638288.2015.1049376 · Cited by 66 · 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-citationGuilcher, S. J. T., Hogan, M., Calzavara, A. J., Hitzig, S. L., Patel, T., Packer, T. L., & Lofters, A. (2018) · Spinal Cord · doi:10.1038/s41393-018-0174-z · Cited by 56 · see citing works
Self-citationMedication-related problems in individuals with spinal cord injury in a primary care-based clinic
Patel, T., Milligan, J., & Lee, J. (2015) · Journal of Spinal Cord Medicine · doi:10.1179/2045772315y.0000000055 · Cited by 44 · see citing works
Self-citationEmpowering Adults With Chronic Spinal Cord Injury to Prevent Secondary Conditions
Houlihan, B. V., Skeels, S. E., Gutnick, D. N., Pernigotti, D., Zazula, J., Brody, M., Burnett, S., Mercier, H. W., Hasiotis, S., Green, C., et al. (2016) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2016.04.005 · Cited by 38 · see citing works
Patient-centered care for better patient adherence.
Lowes, R. (1998) · PubMed · Cited by 35 · see citing works
Self-management of pain and depression in adults with spinal cord injury: A scoping review
Cadel, L., DeLuca, C., Hitzig, S. L., Packer, T. L., Lofters, A., Patel, T., & Guilcher, S. J. T. (2018) · Journal of Spinal Cord Medicine · doi:10.1080/10790268.2018.1523776 · Cited by 30 · see citing works
Self-citationHand, B. N., Krause, J. S., & Simpson, K. N. (2018) · Spinal Cord · doi:10.1038/s41393-017-0050-2 · Cited by 29 · see citing works
Magharei, M., Jaafari, S., Mansouri, P., Safarpour, A. R., & Taghavi, S. A. (2019) · Europe PMC (PubMed Central) · doi:10.30476/ijcbnm.2019.40844 · Cited by 29 · see citing works
Spinal cord injury and polypharmacy: a scoping review
Cadel, L., Everall, A. C., Hitzig, S. L., Packer, T. L., Patel, T., Lofters, A., & Guilcher, S. J. T. (2019) · Disability and Rehabilitation · doi:10.1080/09638288.2019.1610085 · Cited by 27 · see citing works
Self-citationMedication profile and polypharmacy in adults with pediatric-onset spinal cord injury
Hwang, M., Zebracki, K., & Vogel, L. C. (2015) · Spinal Cord · doi:10.1038/sc.2015.62 · Cited by 26 · see citing works
Best Practices Identified for Peer Support Programs
Money, N. N., Moore, M., Brown, D. J., Kasper, K., Roeder, J., Bartone, P. T., & Bates, M. (2011) · PsycEXTRA Dataset · doi:10.1037/e534162013-001 · Cited by 26 · see citing works
Medication before and after a spinal cord lesion
Jensen, E., & Biering‐Sørensen, F. (2014) · Spinal Cord · doi:10.1038/sc.2014.20 · Cited by 20 · see citing works
The Action Plan Project: Discussing Behavior Change in the Primary Care Visit
MacGregor, K. (2005) · The Annals of Family Medicine · doi:10.1370/afm.353 · Cited by 13 · see citing works
The effect of a holistic self-management plan on asthma control
Grammatopoulou, E. P., Skordilis, E. K., Haniotou, A., John, Z., & Athanasopoulos, S. I. (2017) · Physiotherapy Theory and Practice · doi:10.1080/09593985.2017.1331479 · Cited by 13 · see citing works
Eikenhorst, L. V., Taxis, K., Rademakers, J., Zullig, L., de Gier, H. D., & van Dijk, L. (2020) · Research in Social and Administrative Pharmacy · doi:10.1016/j.sapharm.2019.08.004 · Cited by 9 · see citing works
Msn, A.-A., Acnp, & Ama (2019) · Cited by 2 · see citing works
(2011) · SpringerReference · doi:10.1007/springerreference_61488 · Cited by 2 · see citing works
Flagged first, then by citations
2 of the 54 references couldn’t be matched to a known paper.
Cited by
Sorted by citations
Conti, A., Clari, M., Kangasniemi, M. K., Martin, B. S., Borraccino, A., & Campagna, S. (2020) · Disability and Rehabilitation · doi:10.1080/09638288.2020.1783703 · Cited by 34 · see citing works
Jin, R., Liu, C., Chen, J., Cui, M., Xu, B., Yuan, P., & Chen, L. (2024) · Frontiers in Pharmacology · doi:10.3389/fphar.2024.1426777 · Cited by 15 · see citing works
Prescribing patterns for treating common complications of spinal cord injury
Gupta, S., McColl, M. A., Smith, K., & McColl, A. (2021) · Journal of Spinal Cord Medicine · doi:10.1080/10790268.2021.1920786 · Cited by 14 · see citing works
Patsakos, E., Bayley, M. T., Kua, A., Cheng, C. L., Eng, J. J., Ho, C., Noonan, V. K., Querée, M., Craven, B. C., & Panel, T. C.-S. G. E. (2021) · Journal of Spinal Cord Medicine · doi:10.1080/10790268.2021.1953312 · Cited by 14 · see citing works
Chowdhary, K., Yu, D. X., Pramana, G., Mesoros, M., Fairman, A. D., Dicianno, B. E., & Parmanto, B. (2021) · JMIR Human Factors · doi:10.2196/23794 · Cited by 10 · see citing works
Dietz, N. E., Alkin, V., Agarwal, N., Bjurström, M. F., Ugiliweneza, B., Wang, D., Sharma, M., Drazin, D. G., & Boakye, M. (2024) · Journal of Spinal Cord Medicine · doi:10.1080/10790268.2024.2375892 · Cited by 11 · see citing works
Begum, S., Alve, Y. A., & Bontje, P. (2022) · Occupational Therapy International · doi:10.1155/2022/2705104 · Cited by 9 · see citing works
Cadel, 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-citationQama, E., Diviani, N., Häfliger, C., Jordan, X., Scheel‐Sailer, A., Zanini, C., & Rubinelli, S. (2025) · Patient Education and Counseling · doi:10.1016/j.pec.2025.108763 · Cited by 7 · see citing works
Ban, Y., & Cui, C. (2020) · Medical Science Monitor · doi:10.12659/msm.923914 · Cited by 7 · 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 7 distinctive TEDSS domains (Textbox 2) have been used to successfully identify and describe content in self-management interventions [32,33], including in scoping reviews [11,34].”
Self-citationGuilcher, S. J. T., Cadel, L., Everall, A. C., Kaiser, A., Cimino, S. R., El-Kotob, R., McCarthy, L. M., O’Connell, C. M., MacKay, C., Milligan, J., et al. (2025) · PLoS ONE · doi:10.1371/journal.pone.0323877 · Cited by 2 · see citing works
Self-citationSyversen, M. O., Glatkauskas, M., Mathiesen, L., Lea, M., Denstad, B. G., & Svensberg, K. (2025) · Exploratory Research in Clinical and Social Pharmacy · doi:10.1016/j.rcsop.2025.100598 · Cited by 1 · see citing works
Qama, E., Rubinelli, S., & Diviani, N. (2025) · medRxiv · doi:10.1101/2025.01.06.25320049
Qama, E., Rubinelli, S., & Diviani, N. (2025) · Journal of Spinal Cord Medicine · doi:10.1080/10790268.2025.2593699
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-citationNavigating medication management in dementia care: caregiver experiences and resource needs
Irons, S., Kessler, D., Ghahari, S., & Fakolade, A. O. (2026) · Disability and Rehabilitation · doi:10.1080/09638288.2026.2747161
Yazhi, Z., & 厉春林 (2026) · Geriatric Nursing Asia · doi:10.1016/j.ymgna.2026.100022
- Authors
- Cadel, L., Everall, A. C., Packer, T. L., Hitzig, S. L., Patel, T., Lofters, A. K., & Guilcher, S. J. T.
- Affiliations
- University of Toronto (CA)
- Dalhousie University (CA)
- Sunnybrook Health Science Centre (CA)
- University of Waterloo (CA)
- Corresponding author
- Guilcher, Sara J.T.
- ORCID
- Venue
- Research in Social and Administrative Pharmacy
- Publisher
- Elsevier BV
- Published
- 2020-12
- Volume
- 16
- Issue
- 12
- Pages
- 1775-1784
- ISSN
- 1551-7411 (ISSN-L)
- OpenAlex
- W3004182665
- Cited by
- 18
- References
- 54
- Citations by year
- 2026: 3 · 2025: 6 · 2024: 2 · 2023: 1 · 2022: 1 · 2021: 3 · 2020: 2
- FWCI
- 1.15
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Research in Social and Administrative Pharmacy (publishedVersion)
- PubMed (publishedVersion)
- Funders
- University of Toronto
- Pfizer
- Craig H. Neilsen Foundation (441259)
- Canadian Institutes of Health Research
- Topics
- Health Sciences › Medicine › Pathology and Forensic Medicine › Spinal Cord Injury Research
- Life Sciences › Pharmacology, Toxicology and Pharmaceutics › Pharmacology › Pharmacy and Medical Practices
- Health Sciences › Medicine › Geriatrics and Gerontology › Pharmaceutical Practices and Patient Outcomes
- Keywords
- medication self-management, spinal cord injury, spinal cord dysfunction, polypharmacy, self-management support, patient and provider perspectives, secondary complications, patient experience
- MeSH terms
- Self-Management, Chronic Disease, Humans, Spinal Cord Injuries, Health Behavior, Polypharmacy
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