Uncertainty is a consequential aspect of chronic illness for patients as well as their family and friends, yet little research has focused on how non-ill individuals experience uncertainty about the condition of someone in their social network. Thirty-one individuals with loved ones who had a communication-debilitating illness or injury (CDI) participated in one-on-one interviews about their experiences. We analyzed transcripts for participants' sources of uncertainty and for ways that they managed the uncertainty. Participants' experiences with uncertainty included questions about the condition itself and involved the impaired communication resulting from the CDI. Participants described managing uncertainty through information seeking, changing the ways they communicated with the person with the CDI, and creating schemata to help reduce uncertainty. We discuss the findings in terms of predominant conceptualizations of uncertainty in illness and address the prevalence of communication as both a significant source of uncertainty and an important means of managing uncertainty.
Acton, G.J., & Miller, E.W. (2003). Spirituality in caregivers of family members with dementia. Journal of Holistic Nursing, 21, 117-130.
2.
Allen, K., Linn, R.T., Gutierrez, H., & Willer, B.S. (1994). Family burden following traumatic brain injury . Rehabilitation Psychology, 39, 29-48.
3.
Andreassen, S., Randers, I., Näslund, E., Stockeld, D., & Mattiasson, A.C. (2005). Family members' experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer. European Journal of Cancer Care, 14, 426-434.
4.
Babbie, E. (2001). The practice of social research (9th ed.). Belmont, CA: Wadsworth.
5.
Babrow, A.S. (1992). Communication and problematic integration: Understanding diverging probability and value, ambiguity, ambivalence, and impossibility . Communication Theory, 2, 95-130.
6.
Babrow, A.S. (2001). Uncertainty, value, communication, and problematic integration. Journal of Communication, 51, 553-573.
7.
Babrow, A.S., & Mattson, M. (2003). Theorizing about health communication. In T. Thompson, A. Dorsey, K. Miller, & R. Parrot (Eds.), Handbook of health communication (pp. 35-61). Hillsdale, NJ: Lawrence Erlbaum.
8.
Babrow, A.S., Kasch, C.R., & Ford, L.A. (1998). The many meanings of “uncertainty” in illness: Toward a systematic accounting. Health Communication, 10, 1-24.
9.
Baxter, L.A., Braithwaite, D.O., Golish, T.D., & Olson, L.N. (2002). Contradictions of interaction for wives of elderly husbands with adult dementia. Journal of Applied Communication Research, 30, 1-26.
10.
Beach, W.A., & Good, J.S. (2004). Uncertain family trajectories: Interactional consequences of cancer diagnosis, treatment, and prognosis. Journal of Social and Personal Relationships, 21, 8-32.
11.
Becker, G., & Kaufman, S.R. (1995). Managing an uncertain illness trajectory in old age: Patients' and physicians' views of stroke. Medical Anthropology Quarterly, 9, 165-187.
12.
Bradac, J.J., & Giles, H. (2005). Language and social psychology: Conceptual niceties, complexities, curiosities, monstrosities, and how it all works. In K. L. Fitch & R. E. Sanders (Eds.), Handbook of language and social interaction (pp. 201-230). Mahwah, NJ: Lawrence Erlbaum.
13.
Brashers, D.E. (2001). Communication and uncertainty management. Journal of Communication, 51, 477-497.
14.
Brashers, D.E., Goldsmith, D.J., & Hsieh, E. (2002). Information seeking and avoiding in health contexts . Human Communication Research, 28, 258-271.
15.
Brashers, D.E., Neidig, J.L., Cardillo, L.W., Dobbs, L.K., Russell, J.A., & Haas, S.M. (1999). “In an important way I did die.” Uncertainty and revival among persons living with HIV or AIDS. AIDS Care , 11, 201-219.
16.
Brashers, D.E., Neidig, J.L., & Goldsmith, D.J. (2004). Social support and the management of uncertainty for people living with HIV or AIDS. Health Communication, 16, 305-331.
17.
Brashers, D.E., Neidig, J.L., Haas, S.M., Dobbs, L.K., Cardillo, L.W., & Russell, J.A. (2000). Communication in the management of uncertainty: The case of persons living with HIV or AIDS. Communication Monographs, 67, 63-84.
18.
Brashers, D.E., Neidig, J.L., Russell, J.A., Cardillo, L.W., Haas, S.M., Dobbs, L.K., et al. (2003). The medical, personal, and social causes of uncertainty in HIV illness. Issues in Mental Health Nursing , 24, 497-522.
19.
Brereton, L., & Nolan, M. (2002). “Seeking”: A key activity for new family carers of stroke survivors. Journal of Clinical Nursing , 11, 22-31.
20.
Bute, J.J., Donovan-Kicken, E., & Martins, N. (2007). Effects of communication-debilitating illnesses and injuries on close relationships: A relational maintenance perspective . Health Communication, 21, 235-246.
21.
Canary, D.J., Cody, M.J., & Manusov, V. (2000). Interpersonal communication: A goals-based approach (2nd ed.). New York: St. Martin's.
22.
Close, H., & Procter, S. (1999). Coping strategies used by hospitalized stroke patients: Implications for continuity and management of care. Journal of Advanced Nursing, 29, 138-144.
23.
Cohen, M.H. (1995). The triggers of heightened parental uncertainty in chronic, life-threatening childhood illness. Qualitative Health Research, 5, 63-77.
24.
Gold-Spink, E., Sher, T.G., & Theodos, V. (2000). Uncertainty in illness and optimism in couples with multiple sclerosis. International Journal of Rehabilitation &Health, 5, 157-164.
25.
Hinton, J. (1981). Sharing or withholding awareness of dying between husband and wife. Journal of Psychosomatic Research, 25, 337-343.
26.
Hokenstad, A., Hart, A.Y., Gould, D.A., Halper, D., & Levine, C. (2006). Closing the home care case: Home health aides' perspectives on family caregiving. Home Health Care Management & Practice,18, 306-314.
27.
Jumisko, E. (2005). Being forced to live a different everyday life: The experiences of people with traumatic brain injury and those of their close relatives. Licentiate thesis, Luleå University of Technology , Luleå, Sweden.
28.
Kuyper, M.B., & Wester, F. (1998). In the shadow: The impact of chronic illness on the patient's partner. Qualitative Health Research, 8, 237-253.
29.
Lloyd, V., Gatherer, A., & Kalsy, S. (2006). Conducting qualitative interview research with people with expressive language difficulties. Qualitative Health Research, 16, 1386-1404.
30.
Lyons, R.F., Sullivan, M.J.L., Ritvo, P.G., & Coyne, J.C. (1995). The impact of chronic illness and disability on relationships. In Relationships in chronic illness and disability (pp. 38-61). Thousand Oaks, CA: Sage.
31.
Man, D.W.K. (2002). Family caregiver's reactions and coping for persons with brain injury. Brain Injury, 16, 1025-1037.
32.
Mast, M.E. (1995). Adult uncertainty in illness: A critical review of the research. Scholarly Inquiry for Nursing Practice, 9, 3-29.
33.
May, K.A. (1991). Interview techniques in qualitative research: Concerns and challenges. In J. M. Morse (Ed.), Qualitative nursing research: A contemporary dialogue (pp. 188-201). Newbury Park, CA: Sage.
34.
Michallet, B., LeDorze, G., & Tetreault, S. (2001). The needs of spouses caring for severely aphasic persons. Aphasiology,15, 731-747.
35.
Mishel, M.H. (1988). Uncertainty in illness. Image: Journal of Nursing Scholarship, 20, 225-232.
36.
Mishel, M.H. (1990). Reconceptualization of the uncertainty in illness theory. Image: Journal of Nursing Scholarship, 22, 256-262.
37.
Mishel, M.H. (1993). Living with chronic illness: Living with uncertainty . In S. G. Funk, E. M. Tornquist, M. T. Champaigne , & R. A. Wiese (Eds.), Key aspects of caring for the chronically ill: Hospital and home (pp. 46-58). New York: Springer.
38.
Mishel, M.H. (1997). Uncertainty in acute illness. Annual Review of Nursing Research, 15, 57-80.
39.
Mishel, M.H. (1999). Uncertainty in chronic illness. Annual Review of Nursing Research, 17, 269-294.
40.
Mishel, M.H., & Murdaugh, C.L. (1987). Family adjustment to heart transplant: Redesigning the dream. Nursing Research,36, 332-336.
41.
Mitchell, M.L., Courtney, M., & Coyer, F. (2003). Understanding uncertainty and minimizing families' anxiety at the time of transfer from intensive care. Nursing and Health Sciences, 5, 207-217.
42.
Morse, J.M., Barrett, M., Mayan, M., Olson, K., & Spiers, J. (2002). Verification strategies for establishing reliability and validity in qualitative research. International Journal of Qualitative Methods,1(2), 1-19.
43.
Mullins, L.L., Chaney, J.M., Balderson, B., & Hommel, K.A. (2000). The relationship of illness uncertainty, illness intrusiveness, and asthma severity to depression in young adults with long-standing asthma. International Journal of Rehabilitation &Health , 5, 177-186.
44.
Mullins, L.L., Cote, M.P., Fuemmeler, B.F., Jean, V.M., Beatty, W.W., & Paul, R. (2001). Illness intrusiveness, uncertainty, and distress in individuals with multiple sclerosis. Rehabilitation Psychology , 46, 139-153.
45.
Northouse, L.L., Mood, D., Kershaw, T., Schafenacker, A., Mellon, S., Walker, J., et al. (2002). Quality of life of women with recurrent breast cancer and their family members. Journal ofClinical Oncology, 20, 4050-4064.
46.
O'Connell, B., Baker, L., & Prosser, A. (2003). The educational needs of caregivers of stroke survivors in acute and community settings. Journal of Neuroscience Nursing, 35, 21-28.
47.
Pelletier-Hibbert, M., & Sohi, P. (2001). Sources of uncertainty and coping strategies used by family members of individuals living with end stage renal disease. NephrologyNursing Journal, 28, 411-419.
48.
Pring, T. (1999). Who cares for carers?Aphasiology,13, 914-917.
49.
Pyett, P.M. (2003). Validation of qualitative research in the “real world.” Qualitative Health Research, 13, 1170-1179.
50.
Sammarco, A. (2001). Perceived social support, uncertainty, and quality of life of younger breast cancer survivors. Cancer Nursing , 24(3), 212-219.
51.
Scholte op Reimer, W.J.M., de Haan, R.J., Rijnders, P.T., Limburg, M., & van den Bos, G.A.M. (1998). The burden of caregiving in partners of long-term stroke survivors. Stroke, 29, 1605-1611.
52.
Sexton, D., Calcasola, S.L., Bottomley, S.R., & Funk, J. (1999). Adults' experience with asthma and their reported uncertainty and coping strategies. Clinical Nurse Specialist,13, 8-14.
53.
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
54.
Strauss, A.L., & Glaser, B.G. (1975). Chronic illness and the quality of life. St. Louis, MO: C. V. Mosby.
55.
Sundin, K., Jansson, L., & Norberg, A. (2000). Communicating with people with stroke and aphasia: Understanding through sensation without words. Journal of Clinical Nursing, 9, 481-488.
56.
Sundin, K., Norberg, A., & Jansson, L. (2001). The meaning of skilled care providers' relationships with stroke and aphasia patients. Qualitative Health Research , 11, 308-321.
57.
Thorne, S., Hislop, G.T., Kuo, M., & Armstrong, E. (2006). Hope and probability: Patient perspectives of the meaning of numerical information in cancer communication. Qualitative Health Research, 16, 318-336.
58.
Wallace, M. (2003). Uncertainty and quality of life of older men who undergo watchful waiting for prostate cancer. Oncology Nursing Forum, 30, 303-309.
59.
Wells, A. (1999). Family support systems: Their role in aphasia . Aphasiology,13, 911-914.
60.
Williamson, G.M., & Schulz, R. (1990). Relationship orientation, quality of prior relationship, and distress among caregivers of Alzheimer's patients. Psychology and Aging, 5, 502-509.
