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Research Article

Construction of identity in individuals with inflammatory bowel disease across the lifespan

, &
Received 25 Jul 2023, Accepted 20 Dec 2023, Published online: 03 Jan 2024

References

  • Bauer, J. J., King, L. A., & Steger, M. F. (2019). Meaning making, self-determination theory, and the question of wisdom in personality. Journal of Personality, 87(1), 82–101. https://doi.org/10.1111/jopy.12381
  • Bauer, J. J., & McAdams, D. P. (2004). Personal growth in adults’ stories of life transitions. Journal of Personality, 72(3), 573–602. https://doi.org/10.1111/j.0022-3506.2004.00273.x
  • Beese, S. E., Harris, I. M., Moore, D., & Dretzke, J. (2018). Body image dissatisfaction in patients with inflammatory bowel disease: A systematic review protocol. Systematic Reviews, 7(1), 1–6. https://doi.org/10.1186/s13643-018-0844-0
  • Berger, R. (2013). Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2), 219–234. https://doi.org/10.1177/1468794112468475
  • Berkman, L. F. (1995). The role of social relations in health promotion. Psychosomatic Medicine, 57(3), 245–254. https://doi.org/10.1097/00006842-199505000-00006
  • Bonanno, G. A. (2005). Resilience in the face of potential trauma. Current Directions in Psychological Science, 14(3), 135–138. https://doi.org/10.1111/j.0963-7214.2005.00347.x
  • Borrell-Carrio, F. (2004). The biopsychosocial model 25 years later: Principles, practice, and scientific inquiry. The Annals of Family Medicine, 2(6), 576–582. https://doi.org/10.1370/afm.245
  • Byrne, E. A. (2022). Grief in chronic illness: A case study of CFS/ME. Journal of Consciousness Studies, 29(9), 175–200. https://doi.org/10.53765/20512201.29.9.175
  • Carver, C. S. (1998). Resilience and thriving: Issues, models, and linkages. Journal of Social Issues, 54(2), 245–266. https://doi.org/10.1111/j.1540-4560.1998.tb01217.x
  • Casati, J., Toner, B. B., de Rooy, E. C., Drossman, D. A., & Maunder, R. G. (2000). Concerns of patients with inflammatory bowel disease: A review of emerging themes. Digestive Diseases and Sciences, 45(1), 26–31. https://doi.org/10.1023/a:1005492806777
  • Charmaz, K. (1995). The body, identity, and self: Adapting to impairment. The Sociological Quarterly, 36(4), 657–680. https://doi.org/10.1111/j.1533-8525.1995.tb00459.x
  • Chase, S. E. (2005). Narrative inquiry: Multiple lenses, approaches, voices. In N. K. Denzin & Y. S. Lincoln (Eds.), The SAGE handbook of qualitative research. SAGE Publications.
  • Connelly, L. (2016). Trustworthiness in qualitative research. Medsurg Nursing, 25(6), 435–436. Retrieved November 28, 2020 from https://link.gale.com/apps/doc/A476729520/AONE?u=wind05901&sid=AONE&xid=b37e1008
  • Cope, D. G. (2013). Methods and meanings: Credibility and trustworthiness of qualitative research. Oncology Nursing Forum, 41(1), 89–91. https://doi.org/10.1188/14.ONF.89-91
  • Dent, E., Davinson, N., & Wilkie, S. (2021). The impact of gastrointestinal conditions on psychosocial factors associated with the biopsychosocial model of health: A scoping review. Applied Psychology. Health and Well-Being, 14(2), 626–644. https://doi.org/10.1111/aphw.12323
  • Devlin, J., Beusterien, K., Yen, L., Ahmed, A., Cheifetz, A. S., & Moss, A. C. (2014). The burden of inflammatory bowel disease: A patient-reported qualitative analysis and development of a conceptual model. Inflammatory Bowel Diseases, 20(3), 545–552. https://doi.org/10.1097/01.mib.0000440983.86659.81
  • Drossman, D. A. (1998). Gastrointestinal illness and the biopsychosocial model. Psychosomatic Medicine, 60(3), 258–267. https://doi.org/10.1097/00006842-199805000-00007
  • Drossman, D. A. (2016). Functional gastrointestinal disorders: History, pathophysiology, clinical features, and Rome IV. Gastroenterology, 150(6), 1262–1279.e2. https://doi.org/10.1053/j.gastro.2016.02.032
  • Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science (New York, N.Y.), 196(4286), 129–136. https://doi.org/10.1126/science.847460
  • Erikson, E. H. (1959). Identity and the life cycle: Selected papers. Psychological Issues. 1, 1–171. http://psycnet.apa.org/psycinfo/1960-02756-001
  • Erikson, E. H. (1968). Identity, youth, and crisis. Norton.
  • Fredrickson, B. L., Tugade, M. M., Waugh, C. E., & Larkin, G. R. (2003). What good are positive emotions in crisis? A prospective study of resilience and emotions following the terrorist attacks on the United States on September 11th, 2001. Journal of Personality and Social Psychology, 84(2), 365–376. https://doi.org/10.1037/0022-3514.84.2.365
  • Fuller-Thomson, E., Lateef, R., & Sulman, J. (2015). Robust association between inflammatory bowel disease and generalized anxiety disorder. Inflammatory Bowel Diseases, 21(10), 2341–2348. https://doi.org/10.1097/mib.0000000000000518
  • Fuller-Thomson, E., & Sulman, J. (2006). Depression and inflammatory bowel disease: Findings from two nationally representative Canadian surveys. Inflammatory Bowel Diseases, 12(8), 697–707. https://doi.org/10.1097/00054725-200608000-00005
  • Gilbert, P. (1998). What is shame? Some core issues and controversies. In P. Gilbert & B. Andrews (Eds.), Shame: Interpersonal behavior, psychopathology, and culture (pp. 3–38). Oxford University Press.
  • Guo, L., Rohde, J. A., & Farraye, F. A. (2019). Stigma and disclosure in patients with inflammatory bowel disease. Inflammatory Bowel Diseases, 26(7), 1010–1016. https://doi.org/10.1093/ibd/izz260
  • Hall, N., Rubin, G., Dougall, A., Hungin, A. P. S., & Neely, J. (2005). The fight for ‘health-related normality’: A qualitative study of the experiences of Individuals living with established inflammatory bowel disease (IBD). Journal of Health Psychology, 10(3), 443–455. https://doi.org/10.1177/1359105305051433
  • House, J. S., Landis, K. R., & Umberson, D. (1988). Social relationships and health. Science (New York, N.Y.), 241(4865), 540–545. https://doi.org/10.1126/science.3399889
  • Hottensen, D. (2010). Anticipatory grief in patients with cancer. Clinical Journal of Oncology Nursing, 14(1), 106–107. https://doi.org/10.1188/10.cjon.106-107
  • Howitt, D. (2016). Introduction to qualitative research methods in psychology (3rd ed.). Pearson Education.
  • Ironside, P. M., Scheckel, M., Wessels, C., Bailey, M., Powers, S. F., & Seeley, D. K. (2003). Experiencing chronic illness: Cocreating new understandings. Qualitative Health Research, 13(2), 171–183. https://doi.org/10.1177/1049732302239597
  • Josselson, R., & Hammack, P. L. (2021). Essentials of narrative analysis (Essentials of Qualitative Methods) (1st ed.). American Psychological Association.
  • Kaplan, G. G., Bernstein, C. N., Coward, S., Bitton, A., Murthy, S. K., Nguyen, G. C., Lee, K., Cooke-Lauder, J., & Benchimol, E. I. (2018). The impact of inflammatory bowel disease in Canada 2018: Epidemiology. Journal of the Canadian Association of Gastroenterology, 2(Suppl 1), S6–S16. https://doi.org/10.1093/jcag/gwy054
  • Keefer, L., Bedell, A., Norton, C., & Hart, A. (2022). How should pain, fatigue, and emotional wellness be incorporated into treatment goals for optimal management of inflammatory bowel disease? Gastroenterology, 162(5), 1439–1451. https://doi.org/10.1053/j.gastro.2021.08.060
  • Kelleher, D. (1988). Coming to terms with diabetes: Coping strategies and non-compliance. In R. Anderson & M. Bury (Eds.), Living with chronic illness: The experience of patients and their families (pp. 137–155). Unwin Hyman.
  • King, L. A. (2001). The hard road to the good life: The happy, mature person. Journal of Humanistic Psychology, 41(1), 51–72. https://doi.org/10.1177/0022167801411005
  • King, L. A., & Hicks, J. A. (2009). Detecting and constructing meaning in life events. The Journal of Positive Psychology, 4(5), 317–330. https://doi.org/10.1080/17439760902992316
  • King, L. A., Scollon, C. K., Ramsey, C., & Williams, T. (2000). Stories of life transition: Subjective well-being and ego development in parents of children with down syndrome. Journal of Research in Personality, 34(4), 509–536. https://doi.org/10.1006/jrpe.2000.2285
  • Kralik, D., Van Loon, A., & Visentin, K. (2006). Resilience in the chronic illness experience. Educational Action Research, 14(2), 187–201. https://doi.org/10.1080/09650790600718035
  • Kurina, L. M., Goldacre, M. J., Yeates, D., & Gill, L. E. (2001). Depression and anxiety in people with inflammatory bowel disease. Journal of Epidemiology and Community Health, 55(10), 716–720. https://doi.org/10.1136/jech.55.10.716
  • Langenberg, D. R., Yelland, G. W., Robinson, S. R., & Gibson, P. R. (2017). Cognitive impairment in Crohn’s disease is associated with systemic inflammation, symptom burden and sleep disturbance. United European Gastroenterology Journal, 5(4), 579–587. https://doi.org/10.1177/2050640616663397
  • Lee, A. M., & Poole, G. (2005). An application of the transactional model to the analysis of chronic illness narratives. Qualitative Health Research, 15(3), 346–364. https://doi.org/10.1177/1049732304272914
  • Leventhal, H., Idler, E. L., & Leventhal, E. A. (1999). The impact of chronic illness on the self-system. In R. J. Contrada & R. D. Ashmore (Eds.), Self, social identity, and physical health: Interdisciplinary explorations (pp. 185–208). Oxford University Press.
  • Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. SAGE Publications.
  • Lores, T., Goess, C., Mikocka-Walus, A., Collins, K., Burke, A. E., Chur-Hansen, A., Delfabbro, P., & Andrews, J. M. (2019). Integrated psychological care is needed, welcomed and effective in ambulatory inflammatory bowel disease management: Evaluation of a new initiative. Journal of Crohn’s & Colitis, 13(7), 819–827. https://doi.org/10.1093/ecco-jcc/jjz026
  • Ludvigsson, J. F., Olén, O., Larsson, H., Halfvarson, J., Almqvist, C., Lichtenstein, P., & Butwicka, A. (2021). Association between inflammatory bowel disease and psychiatric Morbidity and Suicide: A Swedish nationwide population-based cohort study with sibling comparisons. Journal of Crohn’s & Colitis, 15(11), 1824–1836. https://doi.org/10.1093/ecco-jcc/jjab039
  • McAdams, D. P. (2001). The psychology of life stories. Review of General Psychology, 5(2), 100–122. https://doi.org/10.1037/1089-2680.5.2.100
  • McAdams, D. P. (2006). The redemptive self: Generativity and the stories americans live by. Research in Human Development, 3(2), 81–100. https://doi.org/10.1080/15427609.2006.9683363
  • McAdams, D. P., & De St Aubin, E. (1992). A theory of generativity and its assessment through self-report, behavioral acts, and narrative themes in autobiography. Journal of Personality and Social Psychology, 62(6), 1003–1015. https://doi.org/10.1037/0022-3514.62.6.1003
  • Mikocka-Walus, A., & Andrews, J. M. (2016). Experience with and attitudes toward psychotherapy and antidepressants among patients with inflammatory bowel disease and functional gastrointestinal disorders. Gastroenterology Nursing: The Official Journal of the Society of Gastroenterology Nurses and Associates, 39(4), 278–286. https://doi.org/10.1097/sga.0000000000000182
  • 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
  • Oris, L., Rassart, J., Prikken, S., Verschueren, M., Goubert, L., Moons, P., Berg, C. A., Weets, I., & Luyckx, K. (2016). Illness identity in adolescents and emerging adults with type 1 diabetes: Introducing the illness identity questionnaire. Diabetes Care, 39(5), 757–763. https://doi.org/10.2337/dc15-2559
  • Pals, J. L. (2006). Narrative identity processing of difficult life experiences: Pathways of personality development and positive self-transformation in adulthood. Journal of Personality, 74(4), 1079–1109. https://doi.org/10.1111/j.1467-6494.2006.00403.x
  • Parkes, C. M. (1988). Bereavement as a psychosocial transition: Processes of adaptation to change. Journal of Social Issues, 44(3), 53–65. https://doi.org/10.1111/j.1540-4560.1988.tb02076.x
  • Paulides, E., Boukema, I. C., Van Der Woude, C. J., & De Boer, N. K. H. (2020). The effect of psychotherapy on quality of life in IBD patients: A systematic review. Inflammatory Bowel Diseases, 27(5), 711–724. https://doi.org/10.1093/ibd/izaa144
  • Pillai-Friedman, S., & Ashline, J. (2014). Women, breast cancer survivorship, sexual losses, and disenfranchised grief – A treatment model for clinicians. Sexual and Relationship Therapy, 29(4), 436–453. https://doi.org/10.1080/14681994.2014.934340
  • Polit, D. F., & Beck, C. T. (2009). Essentials of nursing research: Appraising evidence for nursing practice. Lippincott Williams & Wilkins.
  • Rassart, J., Van Wanseele, C., Debrun, L., Matthijs, K., Moons, P., Van Bulck, L., Arat, S., Van Oudenhove, L., & Luyckx, K. (2022). Illness identity in inflammatory bowel disease. International Journal of Behavioral Medicine, 30(1), 77–88. https://doi.org/10.1007/s12529-022-10072-y
  • Sammut, J., Scerri, J., & Xuereb, R. B. (2015). The lived experience of adults with ulcerative colitis. Journal of Clinical Nursing, 24(17-18), 2659–2667. https://doi.org/10.1111/jocn.12892
  • Saunders, B. (2014). Stigma, deviance and morality in young adults’ accounts of inflammatory bowel disease. Sociology of Health & Illness, 36(7), 1020–1036. https://doi.org/10.1111/1467-9566.12148
  • Sewitch, M. J., Abrahamowicz, M., Bitton, A., Daly, D., Wild, G. E., Cohen, A., Katz, S., Szego, P. L., & Dobkin, P. L. (2001). Psychological distress, social support, and disease activity in patients with inflammatory bowel disease. The American Journal of Gastroenterology, 96(5), 1470–1479. https://doi.org/10.1111/j.1572-0241.2001.03800.x
  • Sirois, F. M., Davis, C. G., & Morgan, M. S. (2006). “Learning to live with what you can’t rise above”: Control beliefs, symptom control, and adjustment to tinnitus. Health Psychology, 25(1), 119–123. https://doi.org/10.1037/0278-6133.25.1.119
  • Sirois, F. M., & Hirsch, J. K. (2017). A longitudinal study of the profiles of psychological thriving, resilience, and loss in people with inflammatory bowel disease. British Journal of Health Psychology, 22(4), 920–939. https://doi.org/10.1111/bjhp.12262
  • Taft, T. H., Quinton, S., Jedel, S., Simons, M., Mutlu, E. A., & Hanauer, S. B. (2021). Posttraumatic stress in patients with inflammatory bowel disease: Prevalence and relationships to patient-reported outcomes. Inflammatory Bowel Diseases, 28(5), 710–719. https://doi.org/10.1093/ibd/izab152
  • Taylor, S., Sirois, F., & Molnar, D. (2020). Health psychology (5th ed.). McGraw Hill Ryerson.
  • Tilden, B., Charman, D., Sharples, J., & Fosbury, J. (2005). Identity and adherence in a diabetes patient: Transformations in psychotherapy. Qualitative Health Research, 15(3), 312–324. https://doi.org/10.1177/1049732304272965
  • Trindade, I. A., Ferreira, C., & Pinto-Gouveia, J. (2020). Shame and emotion regulation in inflammatory bowel disease: Effects on psychosocial functioning. Journal of Health Psychology, 25(4), 511–521. https://doi.org/10.1177/1359105317718925
  • Van Bulck, L., Goossens, E., Apers, S., Moons, P., & Luyckx, K. (2021). Illness identity in adults with congenital heart disease: Longitudinal trajectories and associations with patient-reported outcomes and healthcare use. Journal of Advanced Nursing, 77(12), 4743–4754. https://doi.org/10.1111/jan.14949
  • Van Bulck, L., Goossens, E., Luyckx, K., Oris, L., Apers, S., & Moons, P. (2018a). Illness Identity: A novel predictor for healthcare use in adults with congenital heart disease. Journal of the American Heart Association, 7(11), 1–12. https://doi.org/10.1161/jaha.118.008723
  • Van Bulck, L., Luyckx, K., Goossens, E., Oris, L., & Moons, P. (2018b). Illness identity: Capturing the influence of illness on the person’s sense of self. European Journal of Cardiovascular Nursing, 18(1), 4–6. https://doi.org/10.1177/1474515118811960
  • Wolfe, B. J., & Sirois, F. M. (2008). Beyond standard quality of life measures: The subjective experiences of living with inflammatory bowel disease. Quality of Life Research, 17(6), 877–886. https://doi.org/10.1007/s11136-008-9362-1
  • Zeligman, M., Varney, M., Grad, R. I., & Huffstead, M. (2018). Posttraumatic growth in individuals with chronic illness: The role of social support and meaning making. Journal of Counseling & Development, 96(1), 53–63. https://doi.org/10.1002/jcad.12177

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