602
Views
1
CrossRef citations to date
0
Altmetric
Articles

A systematic review of self-concept change in multiple sclerosis

ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 1774-1813 | Received 27 Jun 2021, Accepted 11 Jan 2022, Published online: 16 Feb 2022

References

  • Abma, T. A., Oeseburg, B., Widdershoven, G., & Verkerk, M. (2009). The quality of caring relationships. Psychology Research and Behavior Management, 2, 39–45. https://doi.org/10.2147/PRBM.S4617
  • Abma, T. A., Oeseburg, B., Widdershoven, G. A., Goldsteen, M., & Verkerk, M. A. (2005). Two women with multiple sclerosis and their caregivers: Conflicting normative expectations. Nursing Ethics, 12(5), 479–492. https://doi.org/10.1191/0969733005ne816oa
  • Adamson, B. C., Adamson, M. D., Littlefield, M. M., & Motl, R. W. (2018). ‘Move it or lose it’: Perceptions of the impact of physical activity on multiple sclerosis symptoms, relapse and disability identity. Qualitative Research in Sport, Exercise and Health, 10(4), 457–475. https://doi.org/10.1080/2159676X.2017.1415221
  • Anagnostouli, M., Katsavos, S., Artemiadis, A., Zacharis, M., Argyrou, P., Theotoka, I., Christidi, F., Zalonis, I., & Liappas, I. (2016). Determinants of stigma in a cohort of Hellenic patients suffering from multiple sclerosis: A cross-sectional study. BMC Neurology, 16(1), 101. . https://doi.org/10.1186/s12883-016-0621-4
  • Ardestani-Samani, N., Rabiei, M., Ghasemi-Pirbalooti, M., Bayati, A., & Heidari-Soureshjani, S. (2017). Comparative study of self-concept, physical self-concept, and time perspective between the students with multiple sclerosis and healthy students in Shahrekord. World Family Medicine Journal/Middle East Journal of Family Medicine, 15(9), 80–84. https://doi.org/10.5742/MEWFM.2017.93105
  • Babamohamadi, H., Nobahar, M., Saffari, M., Samaei, A., & Mirmohammadkhani, M. (2016). Dimensions of adaptation, general health, and life satisfaction in multiple sclerosis. International Journal of Pharmaceutical Research and Allied Sciences, 5(2), 500–509.
  • Baldwin, M. V. (1952). A clinico-experimental investigation into the psychologic aspects of multiple sclerosis. Journal of Nervous and Mental Disease, 115, 299–342. . https://doi.org/10.1097/00005053-195201000-00026
  • Bandura, A. (1989). Regulation of cognitive processes through perceived self-efficacy. Developmental Psychology, 25(5), 729–735. https://doi.org/10.1037/0012-1649.25.5.729
  • Barak, Y., Lampl, Y., Sarova-Pinchas, I., & Achiron, A. (1999). Self and body esteem perception in multiple sclerosis. Behavioural Neurology, 11(3), 159–161. https://doi.org/10.1155/1999/976453
  • Barker, A. B., das Nair, R., Lincoln, N. B., & Hunt, N. (2014). Social identity in people with multiple sclerosis: A meta-synthesis of qualitative research. Social Care and Neurodisability, 5(4), 256–267. https://doi.org/10.1108/SCN-05-2014-0009
  • Barker, A. B., Lincoln, N. B., Hunt, N., & das Nair, R. (2018). Social identity in people with multiple sclerosis: An examination of family identity and mood. International Journal of MS Care, 20(2), 85–91. https://doi.org/10.7224/1537-2073.2016-074
  • Barker, A. B., Smale, K., Hunt, N., Lincoln, N. B., & das Nair, R. (2019). Experience of identity change in people who reported a diagnosis of multiple sclerosis: A qualitative inquiry. International Journal of MS Care, 21(5), 235–242. https://doi.org/10.7224/1537-2073.2018-069
  • Bassi, M., Cilia, S., Falautano, M., Grobberio, M., Niccolai, C., Pattini, M., Pietrolongo, E., Quartuccio, M. E., Viterbo, R. G., Allegri, B., Amato, M. P., Benin, M., De Luca, G., Gasperini, C., Minacapelli, E., Patti, F., Trojano, M., & Delle Fave, A. (2019). Illness perceptions and psychological adjustment among persons with multiple sclerosis: The mediating role of coping strategies and social support. Disability Rehabilitation, 42(26), 1–13. https://doi.org/10.1080/09638288.2019.1610511
  • Beadle, E. J., Ownsworth, T., Fleming, J., & Shum, D. (2016). The impact of traumatic brain injury on self-identity: A systematic review of the evidence for self-concept changes. Journal of Head Trauma Rehabilitation, 31(2), E12–E25. https://doi.org/10.1097/HTR.0000000000000158
  • Beadle, E. J., Ownsworth, T., Fleming, J., & Shum, D. (2020). The nature of occupational gaps and relationship with mood, psychosocial functioning and self-discrepancy after severe traumatic brain injury. Disability and Rehabilitation, 42(10), 1414–1422. https://doi.org/10.1080/09638288.2018.1527954
  • Blagov, Pavel S, & Singer, Jefferson A.. (2004). Four Dimensions of Self-Defining Memories (Specificity, Meaning, Content, and Affect) and Their Relationships to Self-Restraint, Distress, and Repressive Defensiveness. Journal of Personality, 72(3), 481–511. http://dx.doi.org/10.1111/j.0022-3506.2004.00270.x
  • Blagov, P S, & Singer, J A. (2004). Four dimensions of self-defining memories (specificity, meaning, content, and affect) and their relationships to self-restraint, distress, and repressive defensiveness. Journal of Personality, 72(3), 481–511.
  • Boeije, H. R., Duijnstee, M. S., Grypdonck, M. H., & Pool, A. (2002). Encountering the downward phase: Biographical work in people with multiple sclerosis living at home. Social Science & Medicine, 55(6), 881–893. https://doi.org/10.1016/S0277-9536(01)00238-6
  • Bogart, K. R. (2014). The role of disability self-concept in adaptation to congenital or acquired disability. Rehabilitation Psychology, 59(1), 107–115. https://doi.org/10.1037/a0035800
  • Bogart, K. R. (2015). Disability identity predicts lower anxiety and depression in multiple sclerosis. Rehabilitation Psychology, 60(1), 105–109. https://doi.org/10.1037/rep0000029
  • Borghi, M., Bonino, S., Graziano, F., & Calandri, E. (2018). Exploring change in a group-based psychological intervention for multiple sclerosis patients. Disability and Rehabilitation, 40(14), 1671–1678. https://doi.org/10.1080/09638288.2017.1306588
  • Broersma, F., Oeseburg, B., Dijkstra, J., & Wynia, K. (2018). The impact of self-perceived limitations, stigma and sense of coherence on quality of life in multiple sclerosis patients: Results of a cross-sectional study. Clinical Rehabilitation, 32(4), 536–545. https://doi.org/10.1177/0269215517730670
  • Brooks, N. A., & Matson, R. R. (1982). Social-psychological adjustment to multiple sclerosis. A longitudinal study. Social Science & Medicine, 16(24), 2129–2135. https://doi.org/10.1016/0277-9536(82)90262-3
  • Brownlee, W. J., Hardy, T. A., Fazekas, F., & Miller, D. H. (2017). Diagnosis of multiple sclerosis: Progress and challenges. The Lancet, 389(10076), 1336–1346. https://doi.org/10.1016/S0140-6736(16)30959-X
  • Byrne, L. (2019). Healing in the absence of a cure. Journal of Patient Experience, 6(1), 7–10. https://doi.org/10.1177/2374373518770828
  • Cahill, M., Connolly, D., & Stapleton, T. (2010). Exploring occupational adaptation through the lives of women with multiple sclerosis. British Journal of Occupational Therapy, 73(3), 106–115. https://doi.org/10.4276/030802210X12682330090415
  • Calabresi, P. A. (2004). Diagnosis and management of multiple sclerosis. American Family Physician, 70(10), 1935–1944.
  • Calandri, E., Graziano, F., Borghi, M., & Bonino, S. (2018). Depression, positive and negative affect, optimism and health-related quality of life in recently diagnosed multiple sclerosis patients: The role of identity, sense of coherence, and self-efficacy. Journal of Happiness Studies: An Interdisciplinary Forum on Subjective Well-Being, 19(1), 277–295. https://doi.org/10.1007/s10902-016-9818-x
  • Calandri, E., Graziano, F., Borghi, M., & Bonino, S. (2019). Young adults’ adjustment to a recent diagnosis of multiple sclerosis: The role of identity satisfaction and self-efficacy. Disability and Health Journal, 12(1), 72–78. https://doi.org/10.1016/j.dhjo.2018.07.008
  • Calsius, J., Courtois, I., Feys, P., Van Asch, P., De Bie, J., & D’Hooghe, M. (2015). “How to conquer a mountain with multiple sclerosis.” How a climbing expedition to Machu Picchu affects the way people with multiple sclerosis experience their body and identity: A phenomenological analysis. Disability and Rehabilitation, 37(26), 2393–2399. https://doi.org/10.3109/09638288.2015.1027003
  • Charmaz, K. (1995). The body, identity, and self: Adapting to impairment. Sociological Quarterly, 36(4), 657–680. https://doi.org/10.1111/j.1533-8525.1995.tb00459.x
  • Charmaz, K. (2002). The self as habit: The reconstruction of self in chronic illness. OTJR: Occupation, Participation and Health, 22(1_suppl), 31S–41S. https://doi.org/10.1177/15394492020220S105
  • Coenen, M., Basedow-Rajwich, B., Konig, N., Kesselring, J., & Cieza, A. (2011). Functioning and disability in multiple sclerosis from the patient perspective. Chronic Illness, 7(4), 291–310. https://doi.org/10.1177/1742395311410613
  • Cook, J. E., Salter, A., & Stadler, G. (2017). Identity concealment and chronic illness: A strategic choice. Journal of Social Issues, 73(2), 359–378. https://doi.org/10.1111/josi.12221
  • Cook, L. H., & Shinew, K. J. (2014). Leisure, work, and disability coping: “I mean, you always need that ‘in’ group”. Leisure Sciences, 36(5), 420–438. https://doi.org/10.1080/01490400.2014.912167
  • Coyle, P. K. (2016). Symptom management and lifestyle modifications in multiple sclerosis. CONTINUUM: Lifelong Learning in Neurology, 22(3), 815–836. https://doi.org/10.1212/CON.0000000000000325
  • Crawford, J. D., & McIvor, G. P. (1985). Group psychotherapy: Benefits in multiple sclerosis. Archieves of Physical Medical Rehabilitation, 66(12), 810–813. https://doi.org/10.5555/uri:pii:0003999385902333
  • Crigger, N. J. (1996). Testing an uncertainty model for women with multiple sclerosis. Advances in Nursing Science, 18(3), 37–47. https://doi.org/10.1097/00012272-199603000-00005
  • Crooks, V. A., Dale Stone, S., & Owen, M. (2009). Multiple sclerosis and academic work: Socio-spatial strategies adopted to maintain employment. Journal of Occupational Science, 16(1), 25–31. https://doi.org/10.1080/14427591.2009.9686638
  • Denney, D. R., Sworowski, L. A., & Lynch, S. G. (2005). Cognitive impairment in three subtypes of multiple sclerosis. Archives of Clinical Neuropsychology, 20(8), 967–981. https://doi.org/10.1016/j.acn.2005.04.012
  • Dennison, L., Yardley, L., Devereux, A., & Moss-Morris, R. (2011). Experiences of adjusting to early stage multiple sclerosis. Journal of Health Psychology, 16(3), 478–488. /. https://doi.org/10.1177/1359105310384299
  • Desborough, J., Brunoro, C., Parkinson, A., Chisholm, K., Elisha, M., Drew, J., Fanning, V., Lueck, C., Bruestle, A., & Cook, M. (2020). ‘It struck at the heart of who I thought I was’: A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis. Health Expectations, 23(5), 1007–1027. https://doi.org/10.1111/hex.13093
  • DiLorenzo, T. A., Becker-Feigeles, J., Halper, J., & Picone, M. A. (2008). A qualitative investigation of adaptation in older individuals with multiple sclerosis. Disability and Rehabilitation, 30(15), 1088–1097. https://doi.org/10.1080/09638280701464256
  • Dorstyn, D., Roberts, R., Murphy, G., Kneebone, I., Migliorini, C., Craig, A., Hutchinson, C., & Field, D. (2017). Piloting an email-based resource package for job seekers with multiple sclerosis. Disability and Rehabilitation, 39(9), 867–873. https://doi.org/10.3109/09638288.2016.1161847
  • Driedger, S. M., Crooks, V. A., & Bennett, D. (2004). Engaging in the disablement process over space and time: Narratives of persons with multiple sclerosis in Ottawa, Canada. Canadian Geographer, 48(2), 119–136. https://doi.org/10.1111/j.0008-3658.2004.00051.x
  • Dutta, R., & Trapp, B. D. (2014). Relapsing and progressive forms of multiple sclerosis – insights from pathology. Current Opinion in Neurology, 27(3), 271–278. https://doi.org/10.1097/WCO.0000000000000094
  • Dyck, I., & Jongbloed, L. (2000). Women with multiple sclerosis and employment issues: A focus on social and institutional environments. Canadian Journal of Occupational Therapy, 67(5), 337–346. https://doi.org/10.1177/000841740006700506
  • Esmail, S., Munro, B., & Gibson, N. (2007). Couple’s experience with multiple sclerosis in the context of their sexual relationship. Sexuality and Disability, 25(4), 163–177. https://doi.org/10.1007/s11195-007-9054-8
  • Fastier, R. (2002). The untold stories: Men living with multiple sclerosis. International Journal of Human Caring, 6(1), 50–55. https://doi.org/10.20467/1091-5710.6.1.50
  • Finlay, L. (2003). The intertwining of body, self and world: A phenomenological study of living with recently-diagnosed multiple sclerosis. Journal of Phenomenological Psychology, 34(2), 157–178. https://doi.org/10.1163/156916203322847128
  • Fitzgerald, M. H., & Paterson, K. A. (1995). The hidden disability dilemma for the preservation of self. Journal of Occupational Science, 2(1), 13–21. https://doi.org/10.1080/14427591.1995.9686392
  • Forsyth, G. L., Delaney, K. D., & Gresham, M. L. (1984). Vying for a winning position: Management style of the chronically ill. Research in Nursing & Health, 7(3), 181–188. https://doi.org/10.1002/nur.4770070306
  • Freeman, J., Gorst, T., Gunn, H., & Robens, S. (2019). “A non-person to the rest of the world”: experiences of social isolation amongst severely impaired people with multiple sclerosis. Disability Rehabitation, 42(16), 1–9. https://doi.org/10.1080/09638288.2018.1557267
  • Gagliardi, B. A. (2003). The experience of sexuality for individuals living with multiple sclerosis. Journal of Clinical Nursing, 12(4), 571–578. https://doi.org/10.1046/j.1365-2702.2003.00739.x
  • Gagliardi, B. A., Frederickson, K., & Shanley, D. A. (2002). Living with multiple sclerosis: A Roy adaptation model-based study. Nursing Science Quarterly, 15(3), 230–236. https://doi.org/10.1177/08918402015003009
  • Gamarra, A. H. E., Molski, C. S., Hilbig, A., Valentini, C. K., Striebel, V. L. W., & Rieder, C. R. d. M. (2009). Evaluation of body image and self-concept and their correlation with depressive symptoms in Parkinson’s disease. Arquivos de Neuro-Psiquiatria, 67(3a), 585–590. https://doi.org/10.1590/S0004-282X2009000400002
  • Ghafari, S., Fallahi-Khoshknab, M., Nourozi, K., & Mohammadi, E. (2015). Patients’ experiences of adapting to multiple sclerosis: A qualitative study. Contemporary Nurse, 50(1), 36–49. https://doi.org/10.1080/10376178.2015.1010252
  • Ghasemi, N., Razavi, S., & Nikzad, E. (2017). Multiple sclerosis: Pathogenesis, symptoms, diagnoses and cell-based therapy. Cell Journal (Yakhteh), 19(1), 1. 10.22074/cellj.2016.4867
  • Gil-Gonzalez, I., Martin-Rodriguez, A., Conrad, R., & Perez-San-Gregorio, M. A. (2020). Quality of life in adults with multiple sclerosis: A systematic review. BMJ Open, 10(11), e041249. https://doi.org/10.1136/bmjopen-2020-041249
  • Gordon, P. A., & Feldman, D. (1998). Impact of chronic illness: Differing perspectives of younger and older women. Journal of Loss and Trauma, 3(3), 239–256. https://doi.org/10.1080/10811449808409702
  • Gordon, P. A., Lam, C. S., & Winter, R. (1997). Interaction strain and persons with multiple sclerosis: Effectiveness of a social skills program. Journal of Applied Rehabilitation Counseling, 28(3), 5–12. https://doi.org/10.1891/0047-2220.28.3.5
  • Gore, J. S., & Cross, S. E. (2011). Defining and measuring self-concept change. Psychological Studies, 56(1), 135–141. https://doi.org/10.1007/s12646-011-0067-0
  • Gough, H. G. (1960). The adjective check list as a personality assessment research technique. Psychological Reports, 6(1), 107–122. https://doi.org/10.2466/pr0.1960.6.1.107
  • Graziano, F., Calandri, E., Borghi, M., & Bonino, S. (2014). The effects of a group-based cognitive behavioral therapy on people with multiple sclerosis: A randomized controlled trial. Clinical Rehabilitation, 28(3), 264–274. https://doi.org/10.1177/0269215513501525
  • Graziano, F., Calandri, E., Borghi, M., & Bonino, S. (2020). Adjustment to multiple sclerosis and identity satisfaction among newly diagnosed women: What role does motherhood play? Women & Health, 60(3), 271–283. https://doi.org/10.1080/03630242.2019.1626789
  • Grytten, N., & Maseide, P. (2006). ‘When I am together with them I feel more ill.’ The stigma of multiple sclerosis experienced in social relationships. Chronic Illness, 2(3), 195–208. https://doi.org/10.1177/17423953060020030101
  • Hong, Q. N., Pluye, P., Fàbregues, S., Bartlett, G., Boardman, F., Cargo, M., Dagenais, P., Gagnon, M.-P., Griffiths, F., & Nicolau, B. (2018). Mixed methods appraisal tool (MMAT), version 2018. Registration of copyright, 1148552.
  • Hunt, L., Nikopoulou-Smyrni, P., & Reynolds, F. (2014). “It gave me something big in my life to wonder and think about which took over the space … and not MS”: Managing well-being in multiple sclerosis through art-making. Disability and Rehabilitation, 36(14), 1139–1147. https://doi.org/10.3109/09638288.2013.833303
  • Hutton, L., & Ownsworth, T. (2019). A qualitative investigation of sense of self and continuity in younger adults with stroke. Neuropsychological Rehabilitation, 29(2), 273–288. https://doi.org/10.1080/09602011.2017.1292922
  • Hwang, J. E., Cvitanovich, D. C., Doroski, E. K., & Vajarakitipongse, J. G. (2011). Correlations between quality of life and adaptation factors among people with multiple sclerosis. American Journal of Occupational Therapy, 65(6), 661–669. https://doi.org/10.5014/ajot.2011.001487
  • Irvine, H., Davidson, C., Hoy, K., & Lowe-Strong, A. (2009). Psychosocial adjustment to multiple sclerosis: Exploration of identity redefinition. Disability and Rehabilitation, 31(8), 599–606. https://doi.org/10.1080/09638280802243286
  • Isaksson, A., Gunnarsson, L., & Ahlström, G. (2007). The presence and meaning of chronic sorrow in patients with multiple sclerosis. Journal of Nursing & Healthcare of Chronic Illnesses, 16(3), 315–324. https://doi.org/10.1111/j.1365-2702.2007.01995.x
  • Jordan, J., Leliveld, M. C., & Tenbrunsel, A. E. (2015). The moral self-image scale: Measuring and understanding the malleability of the moral self. Frontiers in Psychology, 6, 1–16. https://doi.org/10.3389/fpsyg.2015.01878
  • Kielhofner, G. (2008). Model of human occupation: Theory and application (4th ed.). Lippicott William & Wilkins.
  • Kirk, S., & Hinton, D. (2019). “I’m not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness. Child: Care, Health and Development, 45(2), 216–226. https://doi.org/10.1111/cch.12638
  • Kiropoulos, L., Ward, N., & Rozenblat, V. (2019). Self-concept, illness acceptance and depressive and anxiety symptoms in people with multiple sclerosis. Journal of Health Psychology, 26(8), 1197–1206. . https://doi.org/10.1177/1359105319871639
  • Koch, T., Kralik, D., & Eastwood, S. (2002). Constructions of sexuality for women living with multiple sclerosis. Journal of Advanced Nursing, 39(2), 137–145. https://doi.org/10.1046/j.1365-2648.2002.02253.x
  • Korwin-Piotrowska, K., Korwin-Piotrowska, T., & Samochowiec, J. (2010). Self perception among patients with multiple sclerosis. Archives of Psychiatry and Psychotherapy, 12(3), 63–68.
  • Kralik, D., Brown, M., & Koch, T. (2001). Women’s experiences of ‘being diagnosed’ with a long-term illness. Journal of Advanced Nursing, 33(5), 594–602. https://doi.org/10.1046/j.1365-2648.2001.01704.x
  • Kralik, D., Koch, T., & Eastwood, S. (2003). The salience of the body: Transition in sexual self-identity for women living with multiple sclerosis. Journal of Advanced Nursing, 42(1), 11–20. https://doi.org/10.1046/j.1365-2648.2003.02505.x
  • LaRocca, N. G., Scheinberg, L. C., & Kaplan, S. R. (1987). Disease characteristics and psychological status in multiple sclerosis. Neurorehabilitation and Neural Repair, 1(4), 171–178. https://doi.org/10.1177/136140968700100404
  • Lenchuk, I., & Swain, M. (2010). Alise’s small stories: Indices of identity construction and of resistance to the discourse of cognitive impairment. Language Policy, 9(1), 9–28. https://doi.org/10.1007/s10993-009-9149-4
  • Lex, H., Weisenbach, S., Sloane, J., Syed, S., Rasky, E., & Freidl, W. (2018). Social-emotional aspects of quality of life in multiple sclerosis. Psychology, Health & Medicine, 23(4), 411–423. https://doi.org/10.1080/13548506.2017.1385818
  • Lexell, E. M., Iwarsson, S., & Lund, M. L. (2011). Occupational adaptation in people with multiple sclerosis. OTJR: Occupation, Participation and Health, 31(3), 127–134. https://doi.org/10.3928/15394492-20101025-01
  • Lexell, E. M., Lund, M. L., & Iwarsson, S. (2009). Constantly changing lives: Experiences of people with multiple sclerosis. American Journal of Occupational Therapy, 63(6), 772–781. https://doi.org/10.5014/ajot.63.6.772
  • Lowden, D., Lee, V., & Ritchie, J. A. (2014). Redefining self: Patients’ decision making about treatment for multiple sclerosis. Journal of Neuroscience Nursing, 46(4), E14–E24. https://doi.org/10.1097/JNN.0000000000000064
  • Magee, W. L., & Davidson, J. W. (2004). Music therapy in multiple sclerosis: Results of a systematic qualitative analysis. Music Therapy Perspectives, 22(1), 39–51. https://doi.org/10.1093/mtp/22.1.39
  • Maghsoodi, S., & Mohammadi, N. (2018). Qualitative analysis of the process of restoring social esteem by the women with multiple sclerosis. Quality & Quantity: International Journal of Methodology, 52(6), 2557–2575. https://doi.org/10.1007/s11135-017-0677-2
  • Marsh, H. W. (1989). Age and sex effects in multiple dimensions of self-concept: Preadolescence to early adulthood. Journal of Educational Psychology, 81(3), 417–430. https://doi.org/10.1037/0022-0663.81.3.417
  • Martin, J. J. (2007). Physical activity and physical self-concept of individuals with disabilities: An exploratory study. Journal of Human Movement Studies, 52(1), 37–48.
  • Matson, R. R., & Brooks, N. A. (1977). Adjusting to multiple sclerosis: An exploratory study. Social Science & Medicine (1967), 11(4), 245–250. https://doi.org/10.1016/0037-7856(77)90071-3
  • Matuska, K. M., & Erickson, B. (2008). Lifestyle balance: How it is described and experienced by women with multiple sclerosis. Journal of Occupational Science, 15(1), 20–26. https://doi.org/10.1080/14427591.2008.9686603
  • McAdams, D. P., & McLean, K. C. (2013). Narrative identity. Current Directions in Psychological Science, 22(3), 233–238. https://doi.org/10.1177/0963721413475622
  • McClurg, D., Beattie, K., Lowe-Strong, A., & Hagen, S. (2012). The elephant in the room: The impact of bowel dysfunction on people with multiple sclerosis. Journal of the Association of Chartered Physiotherapists in Women’s Health, 111, 13–21.
  • McDonald, W. I., Compston, A., Edan, G., Goodkin, D., Hartung, H. P., Lublin, F. D., McFarland, H. F., Paty, D. W., Polman, C. H., & Reingold, S. C. (2001). Recommended diagnostic criteria for multiple sclerosis: Guidelines from the International Panel on the diagnosis of multiple sclerosis. Annals of Neurology: Official Journal of the American Neurological Association and the Child Neurology Society, 50(1), 121–127. https://doi.org/10.1002/ana.1032
  • Meade, M., Reed, K. S., Rumrill, P., Aust, R., & Krause, J. S. (2016). Perceptions of quality of employment outcomes after multiple sclerosis: A qualitative study. Journal of Rehabilitation, 82(2), 31–40.
  • Meide, H. V., Gorp, D. V., van der Hiele, K., & Visser, L. (2018). “Always looking for a new balance”: toward an understanding of what it takes to continue working while being diagnosed with relapsing-remitting multiple sclerosis. Disability and Rehabilitation, 40(21), 2545–2552. https://doi.org/10.1080/09638288.2017.1342278
  • Miles, A. (1979, December). Some psycho-social consequences of multiple sclerosis: Problems of social interaction and group identity. British Journal of Medical Psychology, 52(4), 321–331. https://doi.org/10.1111/j.2044-8341.1979.tb02532.x
  • Milo, R., & Miller, A. (2014). Revised diagnostic criteria of multiple sclerosis. Autoimmunity Reviews, 13(4-5), 518–524. https://doi.org/10.1016/j.autrev.2014.01.012
  • Morea, J. M., Friend, R., & Bennett, R. M. (2008). Conceptualizing and measuring illness self-concept: A comparison with self-esteem and optimism in predicting fibromyalgia adjustment. Research in Nursing & Health, 31(6), 563–575. https://doi.org/10.1002/nur.20294
  • Moreira, S. V., Franca, C. C., Moreira, M. A., & Lana-Peixoto, M. A. (2009). Musical identity of patients with multiple sclerosis. Arquivos de Neuro-Psiquiatria, 67(1), 46–49. https://doi.org/10.1590/S0004-282X2009000100012
  • Moriya, R., & Suzuki, S. (2011). A qualitative study relating to the experiences of people with MS: Differences by disease severity. British Journal of Neuroscience Nursing, 7(4), 593–600. https://doi.org/10.12968/bjnn.2011.7.4.593
  • Morley, A., Tod, A., Cramp, M., & Mawson, S. (2013). The meaning of spasticity to people with multiple sclerosis: What can health professionals learn? Disability and Rehabilitation, 35(15), 1284–1292. https://doi.org/10.3109/09638288.2012.726691
  • Mozo-Dutton, L., Simpson, J., & Boot, J. (2012). MS and me: Exploring the impact of multiple sclerosis on perceptions of self. Disability and Rehabilitation, 34(14), 1208–1217. https://doi.org/10.3109/09638288.2011.638032
  • Nickerson, M., Cofield, S. S., Tyry, T., Salter, A. R., Cutter, G. R., & Marrie, R. A. (2015). Impact of multiple sclerosis relapse: The NARCOMS participant perspective. Multiple Sclerosis and Related Disorders, 4(3), 234–240. https://doi.org/10.1016/j.msard.2015.03.005
  • Nicolson, P., & Anderson, P. (2001). The psychosocial impact of spasticity-related problems for people with multiple sclerosis: A focus group study. Journal of Health Psychology, 6(5), 551–567. https://doi.org/10.1177/135910530100600508
  • Nourkova, V. V., & Vasilenko, D. A. (2018). On the advantage of autobiographical memory pliability: Implantation of positive self-defining memories reduces trait anxiety. Memory (Hove, England), 26(7), 869–881. https://doi.org/10.1080/09658211.2017.1420195
  • Olsson, M., Lexell, J., & Soderberg, S. (2008). The meaning of women’s experiences of living with multiple sclerosis. Health Care for Women International, 29(4), 416–430. https://doi.org/10.1080/07399330701876646
  • Oris, L., Luyckx, K., Rassart, J., Goubert, L., Goossens, E., Apers, S., Arat, S., Vandenberghe, J., Westhovens, R., & Moons, P. (2018). Illness identity in adults with a chronic illness. Journal of Clinical Psychology in Medical Settings, 25(4), 429–440. https://doi.org/10.1007/s10880-018-9552-0
  • Ownsworth, T. (2014). Self-identity after brain injury. Psychology Press.
  • Ownsworth, T., & Haslam, C. (2016). Impact of rehabilitation on self-concept following traumatic brain injury: An exploratory systematic review of intervention methodology and efficacy. Neuropsychological Rehabilitation, 26(1), 1–35. https://doi.org/10.1080/09602011.2014.977924
  • Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., … Moher, D. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372(71), 1–9. https://doi.org/10.1136/bmj.n71
  • Plow, M. A., Mathiowetz, V., & Resnik, L. (2008). Multiple sclerosis: Impact of physical activity on psychosocial constructs. American Journal of Health Behaviour, 32(6), 614–626.
  • Polman, C. H., Reingold, S. C., Banwell, B., Clanet, M., Cohen, J. A., Filippi, M., Fujihara, K., Havrdova, E., Hutchinson, M., Kappos, L., Lublin, F. D., Montalban, X., O’Connor, P., Sandberg-Wollheim, M., Thompson, A. J., Waubant, E., Weinshenker, B., & Wolinsky, J. S. (2011). Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Annals of Neurology, 69(2), 292–302. https://doi.org/10.1002/ana.22366
  • Popay, J., Roberts, H., Sowden, A., Petticrew, M., Arai, L., Rodgers, M., Britten, N., Roen, K., & Duffy, S. (2006). Guidance on the conduct of narrative synthesis in systematic reviews. A product from the ESRC methods programme Version, 1, b92.
  • Preston, J., Ballinger, C., & Gallagher, H. (2014). Understanding the lived experience of people with multiple sclerosis and dysexecutive syndrome. British Journal of Occupational Therapy, 77(10), 484–490. https://doi.org/10.4276/030802214X14122630932313
  • Price, M. J. (1993). Exploration of body listening: Health and physical self-awareness in chronic illness. Advances in Nursing Science, 15(4), 37–52. https://doi.org/10.1097/00012272-199306000-00005
  • Reynolds, F. (2003). Reclaiming a positive identity in chronic illness through artistic occupation. OTJR: Occupation, Participation and Health, 23(3), 118–127. https://doi.org/10.1177/153944920302300305
  • Riessman, C. K. (1990). Strategic uses of narrative in the presentation of self and illness: A research note. Social Science & Medicine, 30(11), 1195–1200. https://doi.org/10.1016/0277-9536(90)90259-U
  • Schwartz, C. E., & Sendor, M. (1999). Helping others helps oneself: Response shift effects in peer support. Social Science & Medicine, 48(11), 1563–1575. https://doi.org/10.1016/S0277-9536(99)00049-0
  • Schweitzer, R. D., Seth-Smith, M., & Callan, V. (1992). The relationship between self-esteem and psychological adjustment in young adolescents. Journal of Adolescence, 15(1), 83–97. https://doi.org/10.1016/0140-1971(92)90067-F
  • Shevil, E., & Finlayson, M. (2006). Perceptions of persons with multiple sclerosis on cognitive changes and their impact on daily life. Disability and Rehabilitation, 28(12), 779–788. https://doi.org/10.1080/09638280500387013
  • Singer, J., & Moffitt, K. (1991). An experimental investigation of generality and specificity in memory narratives. Imagination, Cognition, and Personality, 11(3), 233–257. https://doi.org/10.2190/72A3-8UPY-GDB9-GX9K
  • Skar, A. B., Folkestad, H., Smedal, T., & Grytten, N. (2014). “I refer to them as my colleagues”: The experience of mutual recognition of self, identity and empowerment in multiple sclerosis. Disability and Rehabilitation, 36(8), 672–677. https://doi.org/10.3109/09638288.2013.808273
  • Starks, H., Morris, M. A., Yorkston, K. M., Gray, R. F., & Johnson, K. L. (2010). Being in- or out-of-sync: Couples’ adaptation to change in multiple sclerosis. Disability and Rehabilitation, 32(3), 196–206. https://doi.org/10.3109/09638280903071826
  • Stepleman, L. M., Floyd, R. M., Valvano-Kelley, A., Penwell-Waines, L., Wonn, S., Crethers, D., Rahn, R., & Smith, S. (2017). Developing a measure to assess identity reconstruction in patients with multiple sclerosis. Rehabilitation Psychology, 62(2), 165–177. https://doi.org/10.1037/rep0000126
  • Strickland, K., Worth, A., & Kennedy, C. (2017). The liminal self in people with multiple sclerosis: An interpretative phenomenological exploration of being diagnosed. Journal of Clinical Nursing, 26(11-12), 1714–1724. https://doi.org/10.1111/jocn.13593
  • Tabuteau-Harrison, S. L., Haslam, C., & Mewse, A. J. (2016). Adjusting to living with multiple sclerosis: The role of social groups. Neuropsychological Rehabilitation, 26(1), 36–59. https://doi.org/10.1080/09602011.2014.993403
  • Talebloo, M., & Zakeripour, G. (2017). Effectiveness of positive thinking skills on life expectancy and self-concept in patients with multiple sclerosis. World Family Medicine Journal/Middle East Journal of Family Medicine, 15(10), 17–22. https://doi.org/10.5742/MEWFM.2017.93131
  • Thomas, J., & Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8(45), 1–10. https://doi.org/10.1186/1471-2288-8-45
  • Thompson, A. J., Banwell, B. L., Barkhof, F., Carroll, W. M., Coetzee, T., Comi, G., Correale, J., Fazekas, F., Filippi, M., Freedman, M. S., Fujihara, K., Galetta, S. L., Hartung, H. P., Kappos, L., Lublin, F. D., Marrie, R. A., Miller, A. E., Miller, D. H., Montalban, X., … Cohen, J. A. (2018). Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. The Lancet Neurology, 17(2), 162–173. https://doi.org/10.1016/S1474-4422(17)30470-2
  • Tong, A., Sainsbury, P., & Jonathan, C. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
  • Turpin, M., Kerr, G., Gullo, H., Bennett, S., Asano, M., & Finlayson, M. (2018). Understanding and living with multiple sclerosis fatigue. British Journal of Occupational Therapy, 81(2), 82–89. https://doi.org/10.1177/0308022617728679
  • Vaughan, R., Morrison, L., & Miller, E. (2003). The illness representations of multiple sclerosis and their relations to outcome. British Journal of Health Psychology, 8(3), 287–301. https://doi.org/10.1348/135910703322370860
  • Vickers, M. H. (2014). Disability and dirty workers: Stories of physical, social and moral taint. Disability & Society, 29(9), 1356–1368. https://doi.org/10.1080/09687599.2014.940446
  • Vickers, M. H. (2015). Stories, disability, and “dirty” workers: Creative writing to go beyond too few words. Journal of Management Inquiry, 24(1), 82–89. https://doi.org/10.1177/1056492614546899
  • Voltzenlogel, V., Ernst, A., de Sèze, J., Brassat, D., Manning, L., & Berna, F. (2016). Giving meaning to illness: An investigation of self-defining memories in patients with relapsing-remitting multiple sclerosis patients. Consciousness and Cognition, 45, 200–209. https://doi.org/10.1016/j.concog.2016.09.010
  • Wakefield, J. R., Bickley, S., & Sani, F. (2013, May). The effects of identification with a support group on the mental health of people with multiple sclerosis. Journal of Psychosomatic Research, 74(5), 420–426. https://doi.org/10.1016/j.jpsychores.2013.02.002
  • Weddell, R., & Fisher-Hicks, S. (2021). Correlates of the personality change judgements of individuals who have MS. Brain Injury, 35(3), 345–355. https://doi.org/10.1080/02699052.2020.1865568
  • Whittemore, R., & Dixon, J. (2008). Chronic illness: The process of integration. Journal of Clinical Nursing, 17(7b), 177–187. https://doi.org/10.1111/j.1365-2702.2007.02244.x
  • Willson, C. L., Tetley, J., Lloyd, C., Messmer Uccelli, M., & MacKian, S. (2018). The impact of multiple sclerosis on the identity of mothers in Italy. Disability and Rehabilitation, 40(12), 1456–1467. https://doi.org/10.1080/09638288.2017.1300339
  • Wilski, M., & Tasiemski, T. (2016). Health-related quality of life in multiple sclerosis: Role of cognitive appraisals of self, illness and treatment. Quality of Life Research, 25(7), 1761–1770. https://doi.org/10.1007/s11136-015-1204-3
  • Wilski, M., & Tasiemski, T. (2017). Meaning of self in multiple sclerosis: Implications for treatment and rehabilitation. Advances in Experimental Medicine amd Biology, 958, 43–55. https://doi.org/10.1007/978-3-319-47861-6_4
  • Woods, R. T., Nelis, S. M., Martyr, A., Roberts, J., Whitaker, C. J., Markova, I., Roth, I., Morris, R., & Clare, L. (2014). What contributes to a good quality of life in early dementia? Awareness and the QoL-AD: A cross-sectional study. Health and Quality of Life Outcomes, 12(94), 1–11. . https://doi.org/10.1186/1477-7525-12-94
  • Wright, T. M., & Kiropoulos, L. A. (2017). Intimate relationship quality, self-concept and illness acceptance in those with multiple sclerosis. Psychology, Health & Medicine, 22(2), 212–226. https://doi.org/10.1080/13548506.2016.1238492
  • Yorkston, K. M., McMullan, K. A., Molton, I., & Jensen, M. P. (2010). Pathways of change experienced by people aging with disability: A focus group study. Disability and Rehabilitation, 32(20), 1697–1704. https://doi.org/10.3109/09638281003678317
  • Žiakova, K., Čap, J., Miertová, M., Gurková, E., & Kurucová, R. (2020). An interpretative phenomenological analysis of dignity in people with multiple sclerosis. Nursing Ethics, 27(3), 686–700. https://doi.org/10.1177/0969733019897766

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.