Bárbara Marisa Franco Nunes da Silva Cardoso
I have been a nurse for over a decade, always in the infectious diseases department, working with people with human immunodeficiency virus (HIV) infection. As I see in my clinical practice and as several authors substantiate, this infection has an impact on the person in all its stages (Tuck et al., 2001). Analyzing my practice and trying to identify the theorist I most identify with isn´t easy. I consider that various theoretical assumptions are interconnected in my day-to-day life in the presence of the population to whom I provide care and for whom I am a reference nurse. Today I´m here to talk about how the diagnosis of HIV infection triggers uncertainty in people lives.
Several times in my professional practice, I have been confronted with feelings of déjà vu when one person after another comes to the nursing appointment after facing the medical diagnosis of HIV. They all relate the reason that brought them to the meeting that day, often with similar stories and singularities that distinguish them. Still, one aspect is common among them: the uncertainty that comes with the diagnosis. Every time I ask myself: what can I do as a nurse to help the person gain that sparkle in their eye, that zest for life when everything seems so obscure and uncertain?
Mishel’s Uncertainty Theory of Illness is a middle-range theory that provides a conceptual framework to explain how uncertainty is generated and affects psychological adaptation to the experience of an illness, in this case, HIV infection. Uncertainty is described as people’s inability to attach meaning or significance to situations related to their health status, failing to predict and manage outcomes (Mishel, 1988).
Mishel says uncertainty can be seen as a danger or as an opportunity. Still, in the case of uncertainty in chronic diseases, such as HIV, uncertainty is a constant, and the person has to self-organize, readapting their health/illness process and attributing a new meaning to uncertainty (Tomey et al., 2004). Thus, self-organized people, by being able to manage uncertainty, develop a greater appreciation for life, with a higher quality of life, greater adherence to health care confidence and courage, a new sense of control, less sensitivity to social pressures, developing new resources and new roles in daily life and society (Eppel-Meichlinger et al., 2022).
Uncertainty may be present at any stage of HIV infection, from diagnosis to the initiation of new treatments, the transition of care, symptomatology, and prognosis associated with the infection, leading people to deal with unknown, complex, and potentially threatening situations (Brashers et al., 1998; Brown et al., 2020). In this context, nurses must step in. Coping with HIV diagnosis is not easy. For people living with HIV infection, the diagnosis equals uncertainty. The impact can be:
- personal (“how my life will be”, “how the infection will manifest itself”, “will it be noticed in my body”, “what I need to change in my routines”);
- social (“no one can know”; “I will not have any more relationships”, “will they discriminate against me”);
- health services (“how will the treatment be and how do I have access to it”, “how will it be at the level of consultations and examinations”; “which team will follow me and how do I will accompany me and how do I get in touch”).
Using this theory, I believe that my intervention involves empowering people with the necessary tools to deal with the unpredictability and lack of control that the diagnosis can create, helping them reorganize and teaching them to face their health/disease process from a new perspective.
Brashers, D. E., Neidig, J. L., Reynolds, N. R., & Haas, S. M. (1998). Uncertainty in illness across the HIV/AIDS trajectory. Journal of the Association of Nurses in AIDS Care, 9(1), 66–77. https://doi.org/10.1016/S1055-3290(98)80078-2
Brown, A., Hayden, S., Klingman, K., & Hussey, L. C. (2020). Managing Uncertainty in Chronic Illness From Patient Perspectives. Journal of Excellence in Nursing & Healthcare Practice, 1–16. CINAHL Complete. https://doi.org/10.5590/JENHP.2020.2.1.01
Eppel-Meichlinger, J., Kobleder, A., & Mayer, H. (2022). Developing a theoretical definition of selforganization: A principle-based concept analysis in the context of uncertainty in chronic illness.
Nursing Forum, 57(5), 954–962. https://doi.org/10.1111/nuf.12767
Mishel, M. H. (1988). Uncertainty in Illness. Journal of Nursing Scholarship, 20(4), 225–232. https://doi.org/10.1111/j.1547-5069.1988.tb00082.x
Tomey, Alligood, & Albuquerque. (2004). Teóricas de enfermagem e a sua obra: Modelos e teorias de enfermagem. Lusociência.
Tuck, I., McCain, N. L., & Elswick Jr., R. K. (2001). Spirituality and psychosocial factors in persons living with HIV. Journal of Advanced Nursing (Wiley-Blackwell), 33(6), 776. CINAHL Complete. https://doi.org/10.1046/j.1365-2648.2001.01711.x
About Bárbara Marisa Franco Nunes da Silva Cardoso
I have been a nurse for almost 14 years in the department of infectious diseases of a university hospital in Lisbon, Portugal, focusing on providing care to people with HIV infection. This post was created in the nursing theories curricular unit from my masters degree in Community Nursing and Public Health, at Health Sciences Institute of Universidade Católica Portuguesa (Lisbon), with the pedagogical supervision of Professor Zaida Charepe (PhD, Associate Professor).