International Journal of Behavioral Medicine

, Volume 22, Issue 2, pp 223–232 | Cite as

The Social Environment and Illness Uncertainty in Chronic Obstructive Pulmonary Disease

  • Karin F. HothEmail author
  • Frederick S. Wamboldt
  • Dee W. Ford
  • Robert A. Sandhaus
  • Charlie Strange
  • David B. Bekelman
  • Kristen E. Holm



Illness uncertainty is associated with worse outcomes in patients with chronic health conditions. Research on social factors associated with uncertainty has focused on the beneficial role of social support. The goal of this study was to develop a more nuanced understanding of the social factors that are associated with uncertainty.


Four hundred sixty-two individuals with alpha-1 antitrypsin deficiency (AATD)-associated chronic obstructive pulmonary disease (COPD) completed a mailed questionnaire. Measures of the social environment included general family functioning, perceived criticism from family members, whether the participant had family members with AATD or COPD, and participation in support groups. Uncertainty was measured using the Mishel Uncertainty in Illness Scale including subscales for ambiguity (uncertainty about physical cues and symptoms) and complexity (uncertainty about treatment and the medical system). Hierarchical regression was used to identify social correlates of ambiguity and complexity while adjusting for demographic and medical characteristics and psychological distress.


Perceived criticism was associated with more complexity (b = 0.21, SE = 0.09, p = 0.015) and ambiguity (b = 0.40, SE = 0.12, p = 0.001). Having a family member with AATD or COPD was associated with more ambiguity (b = 3.28, SE = 1.00, p = 0.001). Participation in support groups was associated with less ambiguity. Individuals who attended three or more support groups in the prior year reported less ambiguity than individuals who had not attended any (b = −3.31, SE = 1.29, p = 0.010).


The social environment is complex and encompasses more than social support. Multiple aspects of the social environment are associated with uncertainty, including perceived criticism, having a family member with a similar illness, and participation in support groups.


Uncertainty Chronic obstructive pulmonary disease (COPD) Alpha-1 antitrypsin deficiency (AATD) Perceived criticism Social support 



All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. The study was approved by the Institutional Review Boards at National Jewish Health and the Medical University of South Carolina, and the study was granted a waiver of documentation of informed consent. We thank Rebecca McClure, MLIS, and Laura Schwarz for their help in recruiting participants for this study.

Conflict of Interest

This work was supported by a Postdoctoral Research Fellowship Grant from the Alpha-1 Foundation (K.E.H.). Research reported in this publication was also supported by the National Institutes of Health (NIH) grants F32 HL083687 (K.E.H.), K23 HL091049 (K.E.H.), and K23 HL095658 (K.F.H.) and the NIH/NCATS Colorado CTSI Grant Number UL1 TR001082. Contents are the authors’ sole responsibility and do not necessarily represent official NIH views. Dr. Bekelman receives grant funding from the NIH (R01 NR014322) and the Department of Veterans Affairs (CDA 08-022, CDP 09-386). Dr. Sandhaus declares that he is the medical director for two not-for-profit organizations that support research and provide health management for the Alpha-1 Antitrypsin Deficiency community. Dr. Strange declares that he has research grants, consultancies, and speakers’ bureau disclosures related to COPD, Alpha-1 Antitrypsin Deficiency, and other pulmonary diseases that do not influence the content of this manuscript. Dr. Hoth, Dr. Wamboldt, Dr. Ford, Dr. Bekelman, and Dr. Holm declare that they have no conflicts of interest.


  1. 1.
    Mishel MH. Uncertainty in illness. Image J Nurs Sch. 1988;20(4):225–32.CrossRefPubMedGoogle Scholar
  2. 2.
    Mishel MH. Reconceptualization of the uncertainty in illness theory. Image J Nurs Sch. 1990;22:256–62.CrossRefPubMedGoogle Scholar
  3. 3.
    Mishel M. Uncertainty in Illness Scales Manual. Chapel Hill, NC1997.Google Scholar
  4. 4.
    Bailey Jr DE, Landerman L, Barroso J, et al. Uncertainty, symptoms, and quality of life in persons with chronic hepatitis C. Psychosomatics. 2009;50(2):138–46.CrossRefPubMedCentralPubMedGoogle Scholar
  5. 5.
    Stewart JL, Mishel MH, Lynn MR, Terhorst L. Test of a conceptual model of uncertainty in children and adolescents with cancer. Res Nurs Health. 2010;33:179–91.PubMedCentralPubMedGoogle Scholar
  6. 6.
    Hoth KF, Wamboldt FS, Strand M, et al. Prostpective impact of illness uncertainty on outcomes in chronic lung disease. Health Psychol. 2013;32(11):1170–4.CrossRefPubMedCentralPubMedGoogle Scholar
  7. 7.
    Keiko K, Garon EB, Stanton AL, Meyerowitz BE. Uncertainty and psychological adjustment in pateints with lung cancer. Psychooncology. 2012;22(6):1396–401.Google Scholar
  8. 8.
    Mishel MH. Perceived uncertainty and stress in illness. Res Nurs Health. 1984;7(3):163–71.CrossRefPubMedGoogle Scholar
  9. 9.
    Mishel MH. Uncertainty in chronic illness. Annual Review of Nursing Research 1999;17:269–94Google Scholar
  10. 10.
    Kim SH, Lee R, Lee KS. Symptoms and uncertainty in breast cancer survivors in Korea: differences by treatment trajectory. J Clin Nurs. 2011;21(7–8):1014–23.PubMedGoogle Scholar
  11. 11.
    Mishel MH, Braden CJ. Uncertainty. A mediator between social support and adjustment. West J Nurs Res. 1987;9(1):43–57.CrossRefPubMedGoogle Scholar
  12. 12.
    Mishel MH, Braden CJ. Finding meaning: antecedents of uncertainty in illness. Nurs Res. 1988;37(2):98–103.CrossRefPubMedGoogle Scholar
  13. 13.
    Sammarco A. Perceived social support, uncertainty, and quality of life of younger breast cancer survivors. Cancer Nurs. 2001;24(3):212–9.CrossRefPubMedGoogle Scholar
  14. 14.
    Bennett SJ. Relationships among selected antecedent variables and coping effectiveness in postmyocardial infarction patients. Res Nurs Health. 1993;16:131–9.CrossRefPubMedGoogle Scholar
  15. 15.
    Kang Y, Daly BJ, Kim SH. Uncertainty and its antecedents in patients with atrial fibrillation. West J Nurs Res. 2004;26(7):770–83.CrossRefPubMedGoogle Scholar
  16. 16.
    White RE, Frasure-Smith N. Uncertainty and psychologic stress after coronary angioplasty and coronary bypass surgery. Heart Lung. 1995;24(1):19–27.CrossRefPubMedGoogle Scholar
  17. 17.
    Wineman NM. Adaptation to multiple sclerosis: the role of social support, functional disability, and perceived uncertainty. Nurs Res. 1990;39(5):294–9.CrossRefPubMedGoogle Scholar
  18. 18.
    Global initiative for obstructive lung disease. Global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease (updated 2014). 2014.
  19. 19.
    World Health Organization. World Health Report. Available from URL: 2000.
  20. 20.
    Bals R. Alpha-1 antitrypsin deficiency. Best Pract Res Clin Gastroenterol. 2010;24:629–33.CrossRefPubMedGoogle Scholar
  21. 21.
    Sandhaus RA. Alpha-1 antitrypsin deficiency: whom to test, whom to treat? Sem Respir Crit Care Med. 2010;31(3):343–7.CrossRefGoogle Scholar
  22. 22.
    Holm KE, Wamboldt FS, Ford DW, et al. The prospective association of perceived criticism with dyspnea in chronic lung disease. J Psychosom Res. 2013;74(5):450–3.CrossRefPubMedCentralPubMedGoogle Scholar
  23. 23.
    Holm KE, Bowler RP, Make BJ, Wamboldt FS. Family relatinoship quality is associated with psychological distress, dyspnea, and quality of life in COPD. COPD. 2009;6(5):359–68.CrossRefPubMedCentralPubMedGoogle Scholar
  24. 24.
    Holm KE, LaChance HR, Bowler RP, Make BJ, Wamboldt FS. Family factors are associated wtih psychological distress and smoking status in chronic obstructive pulmonary disease. Gen Hosp Psychiatry. 2010;32(5):492–8.CrossRefPubMedCentralPubMedGoogle Scholar
  25. 25.
    Thoits PA. Mechanisms linking social ties and support to physical and mental health. J Health Soc Behav. 2011;52(2):145–61.CrossRefPubMedGoogle Scholar
  26. 26.
    Alpha-1 Research Program. 2012.
  27. 27.
    Bishop DS, Epstein NB, Keitner GI, Miller IW, Srinivasan SV. Stroke: morale, family functioning, health status, and functional capacity. Arch Phys Med Rehabil. 1986;67:84–7.CrossRefPubMedGoogle Scholar
  28. 28.
    Evans RL, Bishop DS, Haselkorn JK. Factors predicting satisfactory home care after stroke. Arch Phys Med Rehabil. 1991;72:144–7.PubMedGoogle Scholar
  29. 29.
    Evans RL, Bishop DS, Matlock AL, Stranahan S, Smith GG, Halar EM. Family interaction and treatment adherence after stroke. Arch Phys Med Rehabil. 1987;68:513–7.PubMedGoogle Scholar
  30. 30.
    Evans RL, Bishop DS, Matlock AL, Stranahan S, Halar EM, Noonan WC. Prestroke family interaction as a predictor of stroke outcome. Arch Phys Med Rehabil. 1987;68:508–12.PubMedGoogle Scholar
  31. 31.
    Shields CG, Franks P, Harp JJ, Campbell TL, McDaniel SH. Family emotional involvement and criticism scale (FEICS): II. Reliability and validity studies. Fam Syst Med. 1994;12:361–77.CrossRefGoogle Scholar
  32. 32.
    Shields CG, Franks P, Harp JJ, McDaniel SH, Campbell TL. Development of the Family Emotional Involvement and Criticism Scale (FEICS): a self-report scale to measure expressed emotion. J Marital Fam Ther. 1992;18:395–407.CrossRefGoogle Scholar
  33. 33.
    Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–70.CrossRefPubMedGoogle Scholar
  34. 34.
    Small SP, Graydon JE. Perceived uncertainty, physical symptoms, and negative mood in hospitalized patients with chronic obstructive pulmonary disease. Heart Lung. 1992;21(6):568–74.PubMedGoogle Scholar
  35. 35.
    Holt-Lunstad J, Smith TB, Layton JB. Social relationships and mortality risk: a meta-analytic review. Plos Med. 2010;7(7):e1000316.CrossRefPubMedCentralPubMedGoogle Scholar
  36. 36.
    Hawkley LC, Cacioppo JT. Loneliness matters: a theoretical and empirical review of consequences and mechanisms. Ann Behav Med. 2010;40:218–27.CrossRefPubMedGoogle Scholar
  37. 37.
    Hawkley LC, Thisted RA, Cacioppo JT. Loneliness predicts reduced physical activity: cross-sectional and longitudinal analyses. Health Psychol. 2009;28(3):354–63.CrossRefPubMedCentralPubMedGoogle Scholar
  38. 38.
    Luo Y, Hawkley LC, Waite LJ, Cacioppo JT. Loneliness, health, and mortality in old age: a national longitudinal study. Soc Sci Med. 2012;74:907–14.CrossRefPubMedCentralPubMedGoogle Scholar
  39. 39.
    Mishel MH, Belyea M, Germino BB, et al. Helping patients with localized prostate carcinoma manage uncertainty and treatment side effects: nurse-delivered psychoeducational intervention over the telephone. Cancer. 2002;94(6):1854–66.CrossRefPubMedGoogle Scholar
  40. 40.
    Jiang X, He G. Effects of an uncertainty management intervention on uncertainty, anxiety, depression, and quality of life of chronic obstructive pulmonary disease outpatients. Res Nurs Health. 2012;35(4):409–18.CrossRefPubMedGoogle Scholar
  41. 41.
    Bailey Jr DE, Mishel MH, Belyea M, Stewart JL, Mohler J. Uncertainty intervention for watchful waiting in prostate cancer. Cancer Nurs. 2004;27(5):339–46.CrossRefPubMedGoogle Scholar

Copyright information

© International Society of Behavioral Medicine 2014

Authors and Affiliations

  • Karin F. Hoth
    • 1
    • 2
    • 3
    Email author
  • Frederick S. Wamboldt
    • 2
    • 3
  • Dee W. Ford
    • 4
  • Robert A. Sandhaus
    • 2
    • 5
  • Charlie Strange
    • 4
  • David B. Bekelman
    • 2
    • 6
    • 7
  • Kristen E. Holm
    • 2
    • 8
  1. 1.Department of PsychiatryUniversity of Iowa Carver College of MedicineIowa CityUSA
  2. 2.Department of MedicineNational Jewish HealthDenverUSA
  3. 3.Department of PsychiatryUniversity of Colorado School of Medicine at the Anschutz Medical CampusAuroraUSA
  4. 4.Division of Pulmonary and Critical Care MedicineMedical University of South CarolinaCharlestonUSA
  5. 5.Alpha-1 FoundationMiamiUSA
  6. 6.Department of Veterans AffairsEastern Colorado Health Care SystemDenverUSA
  7. 7.Department of MedicineUniversity of Colorado School of Medicine at the Anschutz Medical CampusAuroraUSA
  8. 8.Department of Community and Behavioral HealthColorado School of Public HealthAuroraUSA

Personalised recommendations