Incertidumbre ante la enfermedad crónica. Revisión integrativa


Este estudio tiene como objetivo integrar la evidencia acerca de la incertidumbre ante la enfermedad en el paciente con enfermedad crónica y su cuidador familiar, guiados por la teoría de la incertidumbre ante la enfermedad. Para esto se realizó una síntesis integrativa de la literatura durante los años 2007 a 2017. Se usaron las bases de datos Medline, Science Direct, Ovid Nursing, Scielo, Scopus, CINAHL y Psycinfo en los idiomas inglés y español. Para realizar la síntesis integrativa se incluyeron 46 publicaciones, con 21 estudios de tipo cualitativo, 19 cuantitativo, 2 mixtos y 4 revisiones. Los estudios se realizaron en su mayoría en pacientes con cáncer, enfermedades neurodegenerativas, fallos orgánicos, falla cardiaca, EPOC y en cuidados paliativos de distintas enfermedades. Dentro de las principales conclusiones del estudio se plantea que la persona con enfermedad crónica y su cuidador familiar desarrollan incertidumbre ante la enfermedad crónica debido a falencias en la educación acerca de la enfermedad y el cuidado, así como el soporte social que reciben del equipo de salud y de sus redes de apoyo.

Biografía del autor/a

Edier Mauricio Arias Rojas, Universidad de Antioquia

Doctorando en Enfermería. Becario Colciencias convocatoria 727. Enfermero. Profesor asistente, Facultad de Enfermería, Universidad de Antioquia. Medellín, Colombia.

Sonia Patricia Carreño Moreno, Universidad Nacional de Colombia

Doctora en Enfermería. Enfermera. Profesora asistente, Facultad de Enfermería, Universidad Nacional de Colombia. Bogotá, Colombia.

Oliva Lorena Chaparro Díaz, Universidad Nacional de Colombia

Doctora en Enfermería. Enfermera. Profesora asociada, Facultad de Enfermería, Universidad Nacional de Colombia. Bogotá, Colombia.


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Biografía del autor/a

Edier Mauricio Arias Rojas, Universidad de Antioquia

Doctorando en Enfermería. Becario Colciencias convocatoria 727. Enfermero. Profesor asistente, Facultad de Enfermería, Universidad de Antioquia. Medellín, Colombia.

Sonia Patricia Carreño Moreno, Universidad Nacional de Colombia

Doctora en Enfermería. Enfermera. Profesora asistente, Facultad de Enfermería, Universidad Nacional de Colombia. Bogotá, Colombia.

Oliva Lorena Chaparro Díaz, Universidad Nacional de Colombia

Doctora en Enfermería. Enfermera. Profesora asociada, Facultad de Enfermería, Universidad Nacional de Colombia. Bogotá, Colombia.


Ang, K., Umapathi, T., Tong, J., Ng, J., Tseng, L.J. y Woo, I.M. (2015). Healthcare Needs of Patients with Amyotrophic Lateral Sclerosis (ALS) in Singapore: A patient-centred qualitative study from multiple perspectives. J Palliat Care, 31(3),150–7.

Aoun, S.M., Deas, K., Howting, D. y Lee, G. (2015) Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups. PLoS One, 10(12), e0145106.

Bailey, D.E., Barroso, J., Muir, A.J., Sloane, R., Richmond, J., McHutchison, J., et al. (2010). Patients with chronic hepatitis C undergoing watchful waiting: Exploring trajectories of illness uncertainty and fatigue. Res Nurs Health, 33(5), 465–73.

Bajwah, S., Koffman, J., Higginson, I.J., Ross, J.R., Wells, A.U., Birring, S.S., et al. (2013). “I wish I knew more ...” the end-of-life planning and information needs for end-stage fibrotic interstitial lung disease: views of patients, carers and health professionals. BMJ Support Palliat Care, 3(1), 84–90.

Ballew, S.H., Hannum, S.M., Gaines, J.M., Marx, K.A., Parrish, J.M. (2012). The role of spiritual experiences and activities in the relationship between chronic illness and psychological well-being. J Relig Health, 51(4), 1386–96.

Borneman, T., Sun, V., Williams, A.C., Fujinami, R., Del Ferraro, C., Burhenn, P.S., et al. (2015). Support for Patients and Family Caregivers in Lung Cancer: Educational Components of an Interdisciplinary Palliative Care Intervention. J Hosp Palliat Nurs, 17(4), 309–18.

Bristowe, K., Carey, I., Hopper, A., Shouls, S., Prentice, W., Caulkin, R., et al. (2015). Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle. Palliat Med, 29(9), 797–807.

Chaney, J.M., Gamwell, K.L., Baraldi, A.N., Ramsey, R.R., Cushing, C.C., Mullins, A.J., et al. (2016). Parent Perceptions of Illness Uncertainty and Child Depressive Symptoms in Juvenile Rheumatic Diseases: Examining Caregiver Demand and Parent Distress as Mediators. J Pediatr Psychol, 41(9), 941–51.

Chaparro Díaz, L. (2009). Trascender en un “vínculo especial” de cuidado: el paso de lo evidente a lo intangible. [Tesis Doctoral]. Facultad de Enfermería Universidad Nacional de Colombia; Bogotá, Colombia.

Chiou, C.P. y Chung, Y.C. (2012). Effectiveness of multimedia interactive patient education on knowledge, uncertainty and decision-making in patients with end-stage renal disease. J Clin Nurs, 21(9–10), 1223–31.

Church, D., Feinstein, D., Palmer Hoffman, J., Stein, P.K., Tranguch, A. (2014). Empirically supported psychological treatments: the challenge of evaluating clinical innovations. J Nerv Ment Dis, 202(10), 699–709.

Collier, A., Breaden, K., Phillips, J.L., Agar, M., Litster, C., Currow, D.C. (2017). Caregivers’ perspectives on the use of long term oxygen therapy for the treatment of refractory breathlessness: a qualitative study. J Pain Symptom Manage, 53(1), 33-39.

Daneault, S., Lussier, V., Mongeau, S., Yelle, L., Cote, A., Sicotte, C., et al. (2016). Ultimate journey of the terminally ill: Ways and pathways of hope. Can Fam Physician, 62(8), 648–56.

Dixon-Woods, M., Agarwal, S., Jones, D., Young, B. y Sutton, A. (2005). Synthesising qualitative and quantitative evidence: A review of possible methods. J Health Serv Res Policy, 10(1), 45–53.

Dudas, K., Olsson, L.E., Wolf, A., Swedberg, K., Taft, C., Schaufelberger, M., et al. (2013). Uncertainty in illness among patients with chronic heart failure is less in person-centred care than in usual care. Eur J Cardiovasc Nurs,12(6), 521–8.

Ek, K., Andershed, B., Sahlberg-Blom, E. y Ternestedt, B.M. (2015). “The unpredictable death”-The last year of life for patients with advanced COPD: Relatives’ stories. Palliat Support Care, 13(5), 1213–22.

Fishbain, D.A., Bruns, D., Disorbio, J.M., Lewis, J.E. y Gao, J. (2010). Exploration of the illness uncertainty concept in acute and chronic pain patients vs community patients. Pain Med, 11(5), 658–69.

Grimmer, K.A., Moss, J.R. y Gill, T.K. (2000). Discharge planning quality from the carer perspective. Qual Life Res. Centre for Allied Health Research, University of South Australia.; 2000;9(9):1005–13.

Grove, S.K., Burns, N. y Gray, J.R. (2013). The practice of nursing research appraisal, synthesis and generation of evidence. 7th ed. St. Louis, EEUU: Elsevier Inc.

Haisfield-Wolfe, M.E., McGuire, D.B., Soeken, K., Geiger-Brown, J., De Forge, B. y Suntharalingam, M. (2012). Prevalence and correlates of symptoms and uncertainty in illness among head and neck cancer patients receiving definitive radiation with or without chemotherapy. Support care cancer Off J Multinatl Assoc Support Care Cancer, 20(8), 1885–93.

Hansen, B.S., Rortveit, K., Leiknes, I., Morken, I., Testad, I., Joa, I., et al. (2012). Patient experiences of uncertainty - a synthesis to guide nursing practice and research. J Nurs Manag, 20(2), 266–77.

Hasson, F., Kernohan, W.G., McLaughlin, M., Waldron, M., McLaughlin, D., Chambers, H., et al. (2010). An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med, 24(7), 731–6. Available from:

Hayle, C., Coventry, P.A., Gomm, S. y Caress, A.L. (2013). Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: A qualitative study. Palliat Med, 27(9), 861–8. Available from:

Henson, L.A., Higginson, I.J., Daveson, B.A., Ellis-Smith, C., Koffman, J., Morgan, M., et al. (2016). “I’ll be in a safe place”: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care. BMJ Open, 6(11), e012134.

Holley, A.P., Gorawara-Bhat, R., Dale, W., Hemmerich, J. y Cox-Hayley, D. (2009). Palliative Access Through Care at Home: Experiences with an Urban, Geriatric Home Palliative Care Program. J Am Geriatr Soc, 57(10), 1925–31. Available from:

Hoth, K.F., Wamboldt, F.S., Ford, D.W., Sandhaus, R.A., Strange, C., Bekelman, D.B., et al. (2015). The social environment and illness uncertainty in chronic obstructive pulmonary disease. Int J Behav Med, 22(2), 223–32.

Kimbell, B., Boyd, K., Kendall, M., Iredale, J. y Murray, S.A. (2015). Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study. BMJ Open, 5(11), e009241.

Kulkarni, P., Kulkarni, P., Ghooi, R., Bhatwadekar, M., Thatte, N. y Anavkar, V. (2014). Stress among Care Givers: The Impact of Nursing a Relative with Cancer. Indian J Palliat Care, 20(1), 31–9.

Kurita, G.P., Benthien, K.S., Sjogren, P., Kaasa, S. y Hjermstad, M.J. (2017). Identification of the predictors of cognitive impairment in patients with cancer in palliative care: a prospective longitudinal analysis. Support care cancer, 25(3), 941-949.

Lerum, S.V., Solbraekke, K.N., Holmoy, T. y Frich, J.C. (2015). Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease. Sociol Health Illn, 37(1), 81–96.

Lillrank, A. (2003). Back pain and the resolution of diagnostic uncertainty in illness narratives. Soc Sci Med, 57(6),1045–54.

McIlfatrick, S. (2007). Assessing palliative care needs: views of patients, informal carers and healthcare professionals. J Adv Nurs, 57(1), 77–86. Available from:

McMillan, S.C., Small, B.J., Weitzner, M., Schonwetter, R., Tittle, M., Moody, L., et al. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer, 106(1), 214–22.

Mishel, M. (1988). Uncertainty in illness. Image J Nurs Sch, 20, 225–32.

Mishel, M., Germino, B., Belyea, M., Stewart, J.L., Bailey, D.E., Mohler, J., et al. (2003). Moderators of an uncertainty management intervention: for men with localized prostate cancer. Nurs Res, 52(2), 89–97.

Mishel, M., Padilla, G., Grant, M. y Sorenson, D.S. (1991). Uncertainty in Illness Theory. Nurs Res, 40(4), 236-240.

Mishel, M. (1990). Reconceptionalization of the uncertainty in illness theory. J Nurs Scholarsh, 22(4), 256–62. Available from:

Moore, G., Collins, A., Brand, C., Gold, M., Lethborg, C., Murphy, M., et al. (2013). Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature. Patient Educ Couns, 91(2), 141–53.

Murray, S.A., Boyd, K., Kendall, M., Worth, A., Benton, T.F. y Clausen, H. (2002). Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their careers in the community. BMJ Br Med J, 325(7370), 929–32. Available from:,url&db=asx&AN=7703660&lang=es&site=eds-live

Mushtaq, F., Bland, A.R. y Schaefer, A. (2011). Uncertainty and Cognitive Control. Front Psychol, 2, 249-54. Available from:

Neville, K. (1998). The relationships among uncertainty, social support, and psychological distress in adolescents recently diagnosed with cancer. J Pediatr Oncol Nurs, 15(1), 37–46.

OMS. (2014). Noncommunicable Diseases country profiles 2014. Ginebra.

OMS. (2015). Noncommunicable Diseases Progress Monitor 2015 [Internet]. WHO. Ginebra: World Health Organization. Available from:

Rabow, M.W., Hauser, J.M. y Adams, J. (2004). Perspectives on care at the close of life. Supporting family caregivers at the end of life: “they don’t know what they don’t know.” JAMA J Am Med Assoc, 291(4), 483–91.

Sammarco, A. y Konecny, L.M. (2010). Quality of life, social support, and uncertainty among Latina and Caucasian breast cancer survivors: a comparative study. Oncol Nurs Forum. United States, 37(1), 93–9.

Sammarco, A. (2001). Perceived social support, uncertainty, and quality of life of younger breast cancer survivors. Cancer Nurs, 24(3), 212–9.

Sautter, J.M., Tulsky, J.A., Johnson, K.S., Olsen, M.K., Burton-Chase, A.M., Lindquist, J.H., et al. (2014). Caregiver experience during advanced chronic illness and last year of life. J Am Geriatr Soc, 62(6), 1082–90.

Scott, A.M., Martin, S.C., Stone, A.M. y Brashers, D.E. (2011). Managing multiple goals in supportive interactions: Using a normative theoretical approach to explain social support as uncertainty management for organ transplant patients. Health Commun, 26(5), 393–403. Available from:

Sodowsky, K. (2012). Spousal Caregiver Narratives and Credible Authority: Uncertainty in Illness of Spousal Caregivers. Qual Rep, 17(18), 1-24. Available from:

Somjaivong, B., Thanasilp, S., Preechawong, S. y Sloan, R. (2011). The influence of symptoms, social support, uncertainty, and coping on health-related quality of life among cholangiocarcinoma patients in northeast Thailand. Cancer Nurs, 34(6), 434–42.

Sparla, A., Flach-Vorgang, S., Villalobos, M., Krug, K., Kamradt, M., Coulibaly, K., et al. (2016). Individual difficulties and resources - a qualitative analysis in patients with advanced lung cancer and their relatives. Patient Prefer Adherence, 10, 2021–9.

Tallman, K., Greenwald, R., Reidenouer, A. y Pantel, L. (2012). Living with advanced illness: longitudinal study of patient, family, and caregiver needs. Perm J, 16(3), 28–35.

Vahidi, M., Mahdavi, N., Asghari, E., Ebrahimi, H., Eivazi Ziaei, J., Hosseinzadeh, M., et al. (2016). Other Side of Breast Cancer: Factors Associated with Caregiver Burden. Asian Nurs Res, 10(3), 201–6. Available from:

Van den Heuvel, L.A., Spruit, M.A., Schols, J.M., Hoving, C., Wouters, E.F. y Janssen, D.J. (2016). Barriers and facilitators to end-of-life communication in advanced chronic organ failure. Int J Palliat Nurs, 22(5), 222–9.

Venning, A., Eliott, J., Wilson, A. y Kettler, L. (2008). Understanding young peoples’ experience of chronic illness: a systematic review. Int J Evid Based Healthc, 6(3), 321–36.

Wennman-Larsen, A. y Tishelman, C. (2002). Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers. Scand J Caring Sci, 16(3), 240–7. Available from:

Wolfe-Christensen, C., Isenberg, J.C., Mullins, L.L., Carpentier, M.Y. y Almstrom, C. (2008). Objective Versus Subjective Ratings of Asthma Severity: Differential Predictors of Illness Uncertainty and Psychological Distress in College Students With Asthma. Child Heal Care, 37(3), 183–95. Available from:

Wordingham, S.E., McIlvennan, C.K., Dionne-Odom, J.N. y Swetz, K.M. (2016). Complex Care Options for Patients With Advanced Heart Failure Approaching End of Life. Curr Heart Fail Rep, 13(1), 20–9.

Zhou, M., Holden, L., Bedard, G., Zeng, L., Lam, H., Chu, D., et al. (2012). The utilization of telephone follow-up in the advanced cancer population: a review of the literature. J Comp Eff Res, 1(6), 509–17.

Cómo citar
Arias Rojas, E. M., Carreño Moreno, S. P., & Chaparro Díaz, O. L. (2018). Incertidumbre ante la enfermedad crónica. Revisión integrativa. Revista Latinoamericana De Bioética, 19(36-1), 91-104.