Life Roles After a Spinal Cord Injury - Qualitative Phenomenological Research
DOI:
https://doi.org/10.55707/jhs.v11i2.157Keywords:
occupational therapy, paraplegia, experiencing changes, occupational identityAbstract
A spinal cord injury damages the nerve cells responsible for transmitting signals between the brain and the rest of the body, potentially resulting in permanent impairment of bodily functions below the injury site and significantly impacting an individual's daily life. Occupational therapists are integral to the process of coping with the unexpected changes. This study aimed to explore how people with spinal cord injury experience changes in their life roles. A qualitative study was conducted with a sample of six individuals with paraplegia using in-depth interviews. Thematic analysis identified four main themes and nine subthemes. The findings reveal that participation in life roles is crucial for people with spinal cord injury as they strive to remain equal members of society. This process of accepting change takes time and social support is of great importance, while the most common obstacle is an inaccessible built environment. Various adaptations to the physical and occupational environment enable people with spinal cord injury to maintain their role and identity, achieve personal goals, and lead a fulfilling life. Understanding life roles can help occupational therapists design client-centered therapy, empowering individuals and facilitating their reintegration into their home environment.
References
American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process – Fourth edition. The American Journal of Occupational Therapy, 74(2), 1–87. https://doi.org/10.5014/ajot.2020.74S2001
Aujoulat, I., Marcolongo, R., Bonadiman, L. in Deccache, A. (2008). Reconsidering patient empowerment in chronic illness: A critique of models of self-efficacy and bodily control. Social Science in Medicine, 66(5), 1228–1239. https://doi.org/10.1016/j.socscimed.2007.11.034
Beauchamp, M. R., Scarlett, L. J., Ruissen, G. R. Scarlett, L. J., Ruissen, Connelly, C. E., McBride, C. B., Casemore, S. in Ginis, K. A. M. (2016). Peer mentoring of adults with spinal cord injury: a transformational leadership perspective. Disability and Rehabilitation, 38(19), 1884–1892. https://doi.org./10.3109/09638288.2015.1107773
Braun, V. in Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org./10.1191/1478088706qp063oa
Buchtler, K., Carrard, V., Jochum, H., Ledermann, K., Lude, P. in Scheel-Sailer, A. (2021). Body experience during post-acute rehabilitation in individuals after a traumatic spinal cord injury: a qualitative interview-based pilot study. Spinal Cord Series and Cases, 7, 14. https://doi.org/10.1038/s41394-020-00375-1
Charlifue, S. in Holicky, R. (1999). Ageing and spinal cord injury: The impact of spousal support. Disability and Rehabilitation: An International, Multidisciplinary Journal, 21(5–6), 250–257. https://doi.org/10.1080/096382899297675
Charlifue, S., Botticello, A., Kolakowsky-Hayner, S. A., Richards, J. S. in Tulsky, D. S. (2016). Family caregivers of individuals with spinal cord injury: exploring the stresses and benefits. Spinal Cord, 54, 732–736. https://doi.org/10.1038/sc.2016.25
Craig, A., Nicholson Perry, K., Gost, R., Tran, Y. in Middleton, J. (2015). Adjustment following chronic spinal cord injury: Determining factors that contribute to social participation. British Journal of Health Psychology, 20(4), 807–823. https://doi.org/10.1111/bjhp.12143
Dickson, A., Ward, R., O’Brien, G., Allan, D. in Ronan O’Carroll, R. (2011). Difficulties adjusting to post-discharge life following a spinal cord injury: An interpretative phenomenological analysis. Psychology, Health in Medicine, 16(4), 463–474. https://doi.org./10.1080/13548506.2011.555769
Divanoglou, A. in Georgiou, M. (2017). Perceived effectiveness and mechanisms of community peer-based programmes for Spinal Cord Injuries—a systematic review of qualitative findings. Spinal Cord, 55, 225–234. https://doi.org/10.1038/sc.2016.147
Engblom-Deglmann, M. L. in Hamilton, J. (2020). The Impact of Spinal Cord Injury on the Couple Relationship: A Grounded Theory Exploration of the Adjustment Process. Journal of Couple in Relationship Therapy, 19(3), 250–275. https://doi.org./10.1080/15332691.2020.1746459
Gassaway, J., Jones, M. L., Sweatman, W. M., Hong, M. B. S., Anziano, P. in DeVault, K. (2017). Effects of Peer Mentoring on Self-Efficacy and Hospital Readmission After Inpatient Rehabilitation of Individuals With Spinal Cord Injury: A Randomized Controlled Trial. Archives of Physical Medicine and Rehabilitation, 98(8), 1526–1534. https://doi.org/10.1016/j.apmr.2017.02.018
Hammel, J., Magasi, S., Heinemann, A., Gray, D. B., Susan Stark, S., Kisala , P., Carlozzi, N. E., Tulsky, D., Garcia, S. F. in Hahn, E. A. (2015). Environmental Barriers and Supports to Everyday Participation: A Qualitative Insider Perspective From People With Disabilities. Archives of Physical Medicine and Rehabilitation, 96(4), 578–588. https://doi.org./10.1016/j.apmr.2014.12.008
Jeyathevan, G., Cameron, J. I., Craven, B. C., Munce, S. E. P. in Jagla, S. B. (2019). Re-building relationships after a spinal cord injury: experiences of family caregivers and care recipients. BioMedCentral Neurology, 19(1), 117. https://doi.org/10.1186/s12883-019-1347-x
Jug, M. (2019). Acute traumatic spinal cord injury – Pathophysiology and modern treatment concepts. Zdravstveni Vestnik, 88(9–10), 444–457. https://doi.org/10.6016/ZdravVestn.2911
Kardatos, A., Evangelopoulos, M. E. in Vlamis, J. (2021). The use of occupational therapy in the rehabilitation of patiens with spinal cord injuries. Acta Orthopaedica Et Traumatologica Hellenica, 72(2), 196–206. https://www.eexot-journal.com/index.php/aoet/article/view/204
Kielhofner, G. (1985). Model of Human Occupation: Theory and application. WillamsinWilkins.
Kielhofner, G., Mallinson, T., Crawford, C., Nowak, M., Rigby, M., Henry, A. in Walens, D. (1998). The occupational performance history interview: OPHI-II: version 2: a user’s manual. University of Illinois College of Applied Health Sciences.
Kielhofner, G. (2002). Model of Human Occupation: theory and application (third). Lippincott Williams in Wilkins.
Kielhofner, G. (2008). Model of Human Occupation: theory and application (fourth). Lippincott Williams in Wilkins.
Klebine, P. (2022). Understanding spinal cord injury: Part 1 - The body before and after injury. Model Systems Knowledge Translation Center. https://msktc.org/sci/factsheets/Understanding_SCI_Part_1
Liddle, J., Phillips, J., Gustafsson, L. in Silburn, P. (2018). Understanding the lived experiences of Parkinson’s disease and deep brain stimulation (DBS) through occupational changes. Australian Occupational Therapy Journal, 65(1), 45–53. https://doi.org/10.1111/1440-1630.12437
Mandelc, N. in Lebar, C. (2022). Rokomet na invalidskih vozičkih kot okupacija pri osebah s poškodbo hrbtenjače. Revija za Zdravstvene Vede, 9(1), 3–16. https://doi.org/10.55707/jhs.v9i1.125
National Institute of Neurological Disorders and Stroke. (25. 7. 2022). Spinal Cord Injury. https://www.ninds.nih.gov/health-information/disorders/spinal-cord-injury
Nayar, S. in Stanley, M. (ur.). (2015). Qualitative Research Methodologies for Occupational Science and Therapy, Routledge. https://doi.org/10.4324/9780203383216
Noreau, L. in Boschen, K. (2010). Intersection of Participation and Environmental Factors: A Complex Interactive Process. Archives of Physical Medicine and Rehabilitation, 91(9), 44–53. https://doi.org./10.1016/j.apmr.2009.10.037
Oakley, F., Kielhofner, G. in Barris, R. (1985). An occupational therapy approach to assessing psychiatric patients’ adaptive functioning. American Journal of Occupational Therapy, 39(3), 147–154. https://doi.org/10.5014/ajot.39.3.147
Puzić, N. (2016). Ocenjevanje bolnikov po okvari hrbtenjače od poškodbe do popolne reintegracije. Rehabilitacija, 15(1), 121–127. https://ibmi.mf.uni-lj.si/rehabilitacija/vsebina/Rehabilitacija_2016_S1_p121-127.pdf
Quigley, C. M. (1995). Impact of Spinal Cord Injury on the Life Roles of Women. The American Journal of Occupational Therapy, 49(8), 780–786. https://doi.org/10.5014/ajot.49.8.780
Scott, P., McKinney, K., Perron, J., Ruff, E. in Smiley, J. (2017). Measurement of Participation: The Role Checklist Version 3: Satisfaction and Performance. https://doi.org/10.5772/intechopen.69101
Taylor, R. R. in Kielhofner, G. (2017). Kielhofner’s model of human occupation: theory and application (fifth). Wolters Kluwer.
Turner, E., Wehman, P., Wallace, J. F. idr. (1997). Overcoming obstacles to community reentry for persons with spinal cord injury: assistive technology, Americans with Disabilities Act and selfadvocacy. Journal of Vocational Rehabilitation, 9(2), 171–186. https://doi.org/10.1016/S1052-2263(97)00039-1
Umeasiegbu, V. I. in Bishop, M. L. (2017). Rehabilitation Services, Self-Advocacy and Psychosocial Adaptation as Determinants of Employment among Persons with Spinal Cord Injury. Journal of Physical Medicine Rehabilitation and Disabilities, 3(2), 1–7. https://doi.org/10.24966/PMRD-8670/100020
Vogrinc, J. (2008). Kvalitativno raziskovanje na pedagoškem področju. Univerza v Ljubljani, Pedagoška fakulteta. https://core.ac.uk/download/pdf/35123064.pdf
World Health Organization. (16. 4. 2024). Spinal Cord Injury. https://www.who.int/news-room/fact-sheets/detail/spinal-cord-injury
Zbornica delovnih terapevtov Slovenije. (2018). Kodeks etike delovnih terapevtov Slovenije in Standardi prakse v delovni terapiji. Zbornica delovnih terapevtov Slovenije. https://www.zdts.si/index.php/dokumenti/send/2-splosni-dokumenti/2-kodeks-etike-delovnih-terapevtov-slovenije
Zveza paraplegikov Slovenije. (n. d.) Odstranimo ovire. https://www.zveza-paraplegikov.si/odstranimo-ovire
Žorga, S. (1999). Pojmovanje razvoja. Socialna pedagogika, 3(3), 207–214.
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