Illness narratives of people who are homeless

Cecilia Håkanson, Joakim Öhlén, Cecilia Håkanson, Joakim Öhlén

Abstract

Multiple illnesses are common in all homeless populations. While most previous studies have focused on experiences of mental illness, there is a scarcity of studies about experiences of bodily illness among people who are homeless. This study aimed to explore illness narratives of people who are homeless, and how homelessness as a social context shapes the experience of multiple and/or advancing somatic conditions. The design was a qualitative single-case study, using interpretive description. Data were generated through interviews, with nine participants who were homeless rough sleepers in Stockholm, Sweden, recruited while receiving care in a support home for homeless people with complex care needs. The findings revealed experiences of illness embedded in narratives about falling ill, being ill, and the future. The particularity of these illness narratives and the way that they are shaped by homelessness give rise to several observations: the necessity of a capable body for survival; chaos and profound solitude in illness and self-care management; ambiguous feelings about receiving care, transitioning from independence, and "freedom" in the streets to dependency and being institutionalized; and finally, the absence of hope and desire for recovery or a better future. The narratives are discussed from the perspective of Frank's four types of illness stories (restitution, chaos, quest, and testimony). The findings stress that to provide appropriate care and support to people who are homeless and have multiple and/or advancing somatic conditions, health care professionals need to be informed both about the individual's biography and about the circumstances under which illness and self-care takes place in the streets.

Keywords: Illness experience; homeless; interpretive description; narratives; somatic.

Conflict of interest statement

and funding The authors have no conflicts of interest to declare. This study received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

References

    1. Addington-Hall J. Research sensitivities to palliative care patients. European Journal of Cancer Care (Engl) 2002;11:220–224.
    1. Argintaru N, Chambers C, Gogosis E, Farrell S, Palepu A, Klodawsky F, et al. A cross-sectional observational study of unmet health needs among homeless and vulnerably housed adults in three Canadian cities. BMC Public Health. 2013;13:577.
    1. Ashworth P. An approach to phenomenological psychology. The contingencies of the lifeworld. Journal of Phenomenological Psychology. 2003;34:145–156.
    1. Beauchamp T. L, Childress J. F. Principles of biomedical ethics. 6th ed. Oxford, UK: Oxford University Press; 2008.
    1. Boydell K. M, Goering P, Morrell-Bellai T. L. Narratives of identity: Re-presentation of self in people who are homeless. Qualitative Health Research. 2000;10:26–38.
    1. Busch-Geertsema V, Culhane D, Fitzpatrick S. Developing a global framework for conceptualising and measuring homelessness. Habitat International. 2016;55:124–132.
    1. Charmaz K. Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health & Illness. 1983;5:168–195.
    1. Charmaz K. The body, identity, and self. The Sociological Quarterly. 1995;36:657–680.
    1. Corrigan P. W, Miller F. E. Shame, blame, and contamination: A review of the impact of mental illness stigma on family members. Journal of Mental Health. 2004;13:537–548.
    1. Delmar C, Bøje T, Dylmer D, Forup L, Jakobsen C, Møller M, et al. Independence/dependence—A contradictory relationship? Life with a chronic illness. Scandinavian Journal of Caring Sciences. 2006;20:261–268.
    1. Drury L. J. From homeless to housed: Caring for people in transition. Journal of Community Health Nursing. 2008;25:91–105.
    1. Elwell-Sutton T, Fok J, Albanese F, Mathie H, Holland R. Factors associated with access to care and healthcare utilization in the homeless population of England. Journal of Public Health (Oxf) 2016 doi: .
    1. Engel C. A study of a medical support home for severely ill homeleess people. Research department working papers. Stockholm, Sweden: Department of research of the civil society, Ersta Sköndal University College; 2008.
    1. Ensign J, Bell M. Illness experiences of homeless youth. Qualitative Health Research. 2004;14:1239–1254.
    1. Fazel S, Khosla V, Doll H, Geddes J. The prevalence of mental disorders among the homeless in western countries: Systematic review and meta-regression analysis. PLoS Medicine. 2008;5:e225.
    1. Finlay L. The body's disclosure in phenomenological research. Qualitative Research in Psychology. 2006;3:19–30.
    1. Frank A. W. The wounded storyteller. Body, illness and ethics. 1st ed. London, UK: The University of Chicago Press Ltd; 1995.
    1. Geddes J. R, Fazel S. Extreme health inequalities: Mortality in homeless people. The Lancet. 2011;377:2156–2157.
    1. Håkanson C, Sandberg J, Ekstedt M, Kenne-Sarenmalm E, Christensson M, Öhlén J. Providing palliative care in a Swedish support home for people who are homeless. Qualitative Health Research. 2016;26:1252–1262.
    1. Hwang S. W. Homelessness and health. Canadian Medical Association Journal. 2001;164:229–233.
    1. Hwang S. W, O'Connell J. J, Lebow J. M, Bierer M. F, Orav E. J, Brennan T. A. Health care utilization among homeless adults prior to death. Journal of Health Care of the Poor and Underserved. 2001;12:50–58.
    1. Hwang S. W, Chambers C, Chiu S, Katic M, Kiss A, Redelmeier D. A, et al. A comprehensive assessment of health care utilization among homeless adults under a system of universal health insurance. American Journal of Public Health. 2013;103:294–301.
    1. Hydén L. C. Narratives in illness: A methodological note. Qualitative Sociology Review. 2008;4:49–58.
    1. Irestig R, Burstrom K, Wessel M, Lynoe N. How are homeless people treated in the healthcare system and other societal institutions? Study of their experiences and trust. Scandinavian Journal of Public Health. 2010;38:225–231.
    1. Kushel M. B, Vittinghoff E, Haas J. S. Factors associated with the health care utilization of homeless persons. Journal of the American Medical Association. 2001;285:200–206.
    1. Leveälahti H, Tishelman C, Öhlén J. Framing the onset of lung cancer biographically: Narratives of continuity and disruption. Psycho Oncology. 2007;16:466–473.
    1. Martins D. C. Experiences of homeless people in the health care delivery system: A descriptive phenomenological study. Public Health Nursing. 2008;25:420–430.
    1. McCabe S, Macnee C. L, Anderson M. K. Homeless patients’ experience of satisfaction with care. Archives of Psychiatric Nursing. 2001;15:78–85.
    1. McNeil R, Guirguis-Younger M. Illicit drug use as a challenge to the delivery of end-of-life care services to homeless persons: Perceptions of health and social services professionals. Palliative Medicine. 2012;26:350–359.
    1. Öhlén J, Holm A. K. Transforming desolation into consolation: Being a mother with life-threatening breast cancer. Health Care for Women International. 2006;27:18–44.
    1. Pierret J. The illness experience: State of knowledge and perspectives for research. Sociology of Health & Illness. 2003;25:4–22.
    1. Randall F, Downie R. S. The philosophy of palliative care: Critique and reconstruction. Oxford, UK: Oxford University Press; 2006.
    1. Ricoeur P. Oneself as another. 1st ed. Chicago, IL: The University of Chicago Press; 1992.
    1. Sawatzky R, Porterfield P, Lee J, Dixon D, Lounsbury K, Pesut B, et al. Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative Care. 2016;15(1) doi: .
    1. Song J, Bartels D. M, Ratner E. R, Alderton L, Hudson B, Ahluwalia J. S. Dying on the streets: Homeless persons’ concerns and desires about end of life care. Journal of General Internal Medicine. 2007;22:435–441.
    1. Song J, Ratner E. R, Bartels D. M. Dying while homeless: Is it a concern when life itself is such a struggle? Journal of Clinical Ethics. 2005;16:251–261.
    1. Song J, Ratner E. R, Bartels D. M, Alderton L, Hudson B, Ahluwalia J. S. Experiences with and attitudes toward death and dying among homeless persons. Journal of General Internal Medicine. 2007;22:427–434.
    1. Sun S, Irestig R, Burstrom B, Beijer U, Burstrom K. Health-related quality of life (EQ-5D) among homeless persons compared to a general population sample in Stockholm County, 2006. Scandinavian Journal of Public Health. 2012;40:115–125.
    1. Svenaeus F. The body uncanny: Further steps towards a phenomenology of illness. Medicine Health Care and Philosophy. 2000;3:125–137.
    1. Svenaeus F. Illness as unhomelike being-in-the-world: Heidegger and the phenomenology of medicine. Medicine Health Care and Philosophy. 2011;14:333–343.
    1. The Swedish National Board of Health and welfare. Homelessness in Sweden 2011. 2012. Retrieved from .
    1. Thorne S. Interpretive description. New York: Left Coast Press Inc; 2008.
    1. Thorne S, Kirkham S. R, MacDonald-Emes J. Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing and Health. 1997;20:169–177.
    1. Thorne S, Paterson B, Acorn S, Canam C, Joachim G, Jillings C. Chronic illness experience: Insights from a metastudy. Qualitative Health Research. 2002;12:437–452.
    1. Tipple G, Speak S. Definitions of homelessness in developing countries. Habitat International. 2005;29:337–352.
    1. Toombs S. K. Illness and the paradigm of lived body. Theoretical Medicine. 1988;9:201–226.
    1. Tsai J, Bond G. R, Salyers M. P, Godfrey J. L, Davis K. E. Housing preferences and choices among adults with mental illness and substance use disorders: A qualitative study. Community Mental Health Journal. 2010;46:381–388.
    1. Watson S. Homelessness revisited: New reflections on old paradigms. Urban Policy and Research. 2000;18:159–170.
    1. Wendell M. D. Dancing with broken bones. Poverty, race and spirit-filled dying in the inner city. New York: Oxford University Press; 2012.
    1. Wise C, Phillips K. Hearing the silent voices: Narratives of health care and homelessness. Issues in Mental Health Nursing. 2013;34:359–367.
    1. World Medical Association. World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. The Journal of the American Medical Association. 1994;310:2191.

Source: PubMed

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