The Social Environment and Illness Uncertainty in Chronic Obstructive Pulmonary Disease
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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.
KeywordsUncertainty 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.
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