Uncertainty In Illness Theory Research Articles

Uncertainty and depressive symptoms as mediators of quality of life in patients with heart failure.

Uncertainty in illness is regarded as a source of stress in many chronic diseases and is negatively related to health-related quality of life (HRQoL). However, studies on the relationship between uncertainty and HRQoL in patients with heart failure are limited. This study used Mishel’s theory of uncertainty in illness to investigate the mediating role of uncertainty in illness and depressive symptoms between symptom distress and HRQoL in patients with heart failure. This study used a cross-sectional correlation design. Participants were recruited by convenience sampling from outpatient services and medical wards of cardiology departments of a medical center in northern Taiwan. Data were collected for uncertainty, depressive symptoms, symptoms distress of heart failure, and HRQoL using self-report questionnaires. Demographics and clinical characteristics were analyzed with descriptive statistics. The mutual effects of disease characteristics, symptom distress, uncertainty in illness, depressive symptoms and HRQoL, as well as the overall model fitness, were analyzed by with structural equation modeling. We collected 147 qualified questionnaires. The mean score for the Mishel Uncertainty in Illness Scale for patients with heart failure was 73.5 (SD = 18.55); 65.3% of participants had a score of ≧13 on the Beck Depressive Inventory-II, indicating mild depression. Uncertainty, depressive symptoms, and HRQoL were directly related to symptom distress. Symptom distress and depressive symptoms were both mediators between uncertainty and depressive symptoms. Depressive symptoms also mediated emotional support and HRQoL. Uncertainty and depressive symptoms were important factors in the pathway between symptom distress and HRQoL for heart failure patients. We suggest providing heart failure patients with tailored interventions for effective self-management of symptoms based on Mishel’s theory of uncertainty in illness, which could help control disease symptoms, alleviate uncertainty and depression as well as improve HRQoL.

Towards the validation of a new, blended theoretical model of fear of cancer recurrence.

Fear of cancer recurrence (FCR) is defined as "fear, worry, or concern about cancer returning or progressing". To date, only the seminal model proposed by Lee-Jones and colleagues has been partially validated, so additional model testing is critical to inform intervention efforts. The purpose of this study is to examine the validity of a blended model of FCR that integrates Leventhal's Common Sense Model, Mishel's Uncertainty in Illness Theory, and cognitive theories of worry. Participants (n=106) were women diagnosed with stage I to III breast or gynecological cancer who were enrolled in a Randomized Controlled Trial of a group cognitive-existential intervention for FCR. We report data from standardized questionnaires (Fear of Cancer Recurrence Inventory-Severity and Triggers subscales; Illness Uncertainty Scale; perceived risk of recurrence; Intolerance of Uncertainty Scale; Why do people Worry about Health questionnaire; Reassurance-seeking Behaviors subscale of the Health Anxiety Questionnaire, and the Reassurance Questionnaire) that participants completed before randomization. Path analyses were used to test the model. Following the addition of four paths, the model showed an excellent fit (χ2=13.39, P=0.20; comparative fit index=0.99; root mean square error of approximation=0.06). Triggers, perceived risk of recurrence, and illness uncertainty predicted FCR. FCR was associated with maladaptive coping. Positive beliefs about worrying and intolerance of uncertainty did not predict FCR but led to more maladaptive coping. These results provide support for a blended FCR model.

Experiences of liver health related uncertainty and self-reported stress among people who inject drugs living with hepatitis C virus: a qualitative study

BackgroundPeople who inject drugs (PWID) are most at risk of hepatitis C virus infection in Australia. The introduction of transient elastography (TE) (measuring hepatitis fibrosis) and direct acting antiviral medications will likely alter the experience of living with hepatitis C. We aimed to explore positive and negative influences on wellbeing and stress among PWID with hepatitis C.MethodsThe Treatment and Prevention (TAP) study examines the feasibility of treating hepatitis C mono-infected PWID in community settings. Semi-structured interviews were conducted with 16 purposively recruited TAP participants. Participants were aware of their hepatitis C seropositive status and had received fibrosis assessment (measured by TE) prior to interview. Questions were open-ended, focusing on the impact of health status on wellbeing and self-reported stress. Interviews were voice recorded, transcribed verbatim and thematically analysed, guided by Mishel’s (1988) theory of Uncertainty in Illness.ResultsIn line with Mishel’s theory of Uncertainty in Illness all participants reported hepatitis C-related uncertainty, particularly mis-information or a lack of knowledge surrounding liver health and the meaning of TE results. Those with greater fibrosis experienced an extra layer of prognostic uncertainty. Experiences of uncertainty were a key motivation to seek treatment, which was seen as a way to regain some stability in life. Treatment completion alleviated hepatitis C-related stress, and promoted feelings of empowerment and confidence in addressing other life challenges.ConclusionTE scores seemingly provide some certainty. However, when paired with limited knowledge, particularly among people with severe fibrosis, TE may be a source of uncertainty and increased personal stress. This suggests the need for simple education programs and resources on liver health to minimise stress.

Uncertainty in Illness: Theory Review, Application, and Extension

Mishel's uncertainty in illness theory provides a conceptual framework to explain how uncertainty is generated and how it affects psychological adjustment to the cancer experience. Since 1981, when it was created, researchers have used the theory to develop and test uncertainty management interventions in multiple populations of patients with cancer. This article reviews the theory's concepts and propositions, summarizes supporting evidence, and discusses extension of the theory, clinical implications, and future directions for research.

Lynch Syndrome Limbo: Patient Understanding of Variants of Uncertain Significance

Providers and patients encounter challenges related to the management of Variants of Unknown Significance (VUS). A VUS introduces new counseling dilemmas for the understanding and psychosocial impact of uncertain genetic test results. This descriptive study uses Mishel's theory of uncertainty in illness to explore the experience of individuals who have received a VUS as part of the genetic testing process. Semi-structured interviews were conducted with 27 adult individuals who received a VUS for Lynch syndrome mismatch repair genes between 2002 and 2013. The interviews were transcribed and analyzed. Most individuals recalled their result and perceived various types of uncertainty associated with their VUS. Half of the participants appraised their variant as a danger and implemented coping strategies to reduce the threat of developing cancer. Mobilizing strategies to reduce their risk included vigilant cancer surveillance, information seeking and notifying relatives. The majority of participants were unaware of the possibility of a VUS before receiving their result and expected reclassification over time. These results provide insight into the ways healthcare providers can support patients who receive VUS for Lynch syndrome. Findings also provide direction for future work that can further explicate the impact of receiving a VUS.

Spirituality, Illness Unpredictability, and Math Anxiety Effects on Negative Affect and Affect-Management Coping for Individuals Diagnosed with Alpha-1 Antitrypsin Deficiency

ABSTRACTA growing number of genetic tests are included in diagnostic protocols associated with many common conditions. A positive diagnosis associated with the presence of some gene versions in many instances predicts a range of possible outcomes, and the uncertainty linked to such results contributes to the need to understand varied responses and plan strategic communication. Uncertainty in illness theory (UIT; Mishel, 1988, 1990) guided the investigation of efforts to feel in control and hopeful regarding genetic testing and diagnosis for alpha-1 antitrypsin deficiency (AATD). Participants included 137 individuals with AATD recruited from the Alpha-1 Research Registry who were surveyed about their subjective numeracy, anxiety about math, spirituality, perceptions of illness unpredictability, negative affect regarding genetic testing, and coping strategies about a diagnosis. Results revealed that experiencing more fear and worry contributed both directly and indirectly to affect-management coping strategies, operating through individual perceptions of illness unpredictability. The inability to predict the symptoms and course of events related to a genetic illness and anxiety regarding math heightened fear and worry. Spirituality lessened both illness unpredictability and negative affective responses to a diagnosis. Results affirm the importance of clinician and counselor efforts to incorporate attention to patient spirituality. They also illustrate the complexity associated with strategic efforts to plan communication about the different versions of a gene’s effects on well-being, when some versions align with mild health effects and others with severe effects.

233 - Uncertainties in Caregivers of Patients Implanted With Left Ventricular Assist Device: A Systematic Review

Introduction: Individuals living with a left ventricular assist device (LVAD) require complex, multidisciplinary team management and a dedicated caregiver throughout treatment. The purpose of this systematic literature review is to examine the current state of the science on caregiver care for those caring for end stage heart failure patients that have been implanted with a LVAD utilizing Uncertainty in Illness Theory (UIT). Methods: Five major databases were searched to identify relevant studies published in English between 1999 and September 2015. Each study was abstracted and confirmed by two authors and was identified and theoretically categorized. Analyses across studies were also performed. Results: Twenty-two eligible papers were included in this review. The majority of included studies were qualitative in nature with only four attempting to quantify caregiver experiences. Caregiver experiences were organized into factors leading to uncertainty, appraisal of uncertainty, coping processes and long-term outcomes. Anxiety, depression, post-traumatic stress syndrome, distress, fears, and sexual concerns are negative psychosocial factors experienced from uncertainty, while caregivers also experience hope and optimism. Adaptation occurs when the caregivers have accepted their role a caregiver. Conclusions: This is the first comprehensive theory based review in LVAD caregiver literature. Our analysis provides evidence for a rapidly developing science that is based largely on observational and qualitative research. However, few studies examine the caregiver and LVAD patient as a dyad. Longitudinal and quantitative research studies are needed with sufficiently large sample sizes to examine the variables in caregiving experience and how it impacts patient outcomes to inform future interventions.

Fear of cancer recurrence: a theoretical review and its relevance for clinical presentation and management.

There is increasing recognition of the unique physical and psychosocial concerns of the growing population of cancer survivors. An emerging literature demonstrates that fear of cancer recurrence (FCR) is a problematic long-term and late effect for cancer survivors. In fact, FCR is a top concern, and this article provides a necessary synthesis of the extant research evidence and theory. Literature searches were conducted using databases including MEDLINE and PsychINFO using specified search terms including 'fear of recurrence' and 'worry about recurrence'. A comprehensive narrative review summarizes early empirical findings on FCR including current definitions, assessment tools, clinical presentations, quality of life impact, prevalence, trajectory and risk factors. This paper also critically reviews the relevant theoretical frameworks to best understand these findings and considers multiple psychosocial treatment models that may have relevance for addressing FCR in the clinical setting. There is evidence of substantial prevalence and quality of life impact of FCR. Several theories (e.g. self-regulation model of illness, a family-based model, uncertainty in illness theory, social-cognitive processing theory, terror management theory) directly or indirectly help conceptualize FCR and inform potential treatment options for those with clinically significant distress or impairment resulting from FCR. Further investigation into FCR is warranted to promote evidence-based care for this significant cancer survivorship concern.

Uncertainty and the Treatment Experience of Individuals With Chronic Hepatitis C

It is estimated that 75% of those individuals infected with hepatitis C are not aware of their infection. Uncertainty surrounding illness events has been described as the ultimate psychological stressor. The aim of this research study was to examine the correlation, both direction and strength, between uncertainty and the antecedents of Mishel’s uncertainty in illness theory. Convenience samples of 134 individuals diagnosed with hepatitis C were recruited. Findings indicate that those unique resources available to the individual in the form of their social network and health care authority figure have the greatest influence on their perception of uncertainty surrounding illness events.

Factors Affecting Maternal Coping in Korean Mothers of Children with Cancer

Background: The childhood cancer is increasing throughout the world. The incidence of children and adolescent (1 - 19 years old) mortality by cancer was 4.49 by 2006 (Korea Statistics, 2014). Mothers of children experienced a difficult situation in coping when their children were diagnosed with cancer. Based on Mishel’s Uncertainty in Illness Theory, maternal uncertainty and perceived social support are important factors that may have an impact on maternal coping in mothers of children with cancer. Therefore, it was worth to investigate this phenomenon in the context of Korea where no such study was conducted. Objective: To identify the factors affecting maternal coping in mothers of children with cancer. Methods: The study was conducted by using a descriptive design. This study was approved by the Institutional Review Board, Yonsei Health System, Severance Hospital, Seoul, Korea and informed consent forms were obtained from the participants. Fifty-nine mothers completed three questionnaires: 1) Parent’s Perception of Uncertainty Scale, 2) Multidimensional Scale of Perceived Social Support, and 3) Coping Health Inventory for Parents. The internal consistency of these instruments was satisfactory, all with alpha coefficients over 0.86. Results: Hierarchical multiple regression analysis revealed that perceived social support and maternal uncertainty together explained 35% of the variance in the maternal coping in mothers of children with cancer (R2 = 0.353, F = 15.255, p = 0.000). Perceived social support and maternal uncertainty had an impact on maternal coping. Conclusions: The findings provided information that could be used in a further intervention study to increase maternal coping in mothers of children with cancer.

Uncertainty and the Duration of Disease in Adults with Type 1 Diabetes

Objective : The purpose of this study was to investigate the relationship between type 1 diabetes duration and uncertainty. According to the Reconceptualized Uncertainty in Illness Theory, it was hypothesized that longer duration would be associated with less uncertainty. Research Design and Method : A sample of 379 people with type 1 diabetes recruited from the T1D Exchange completed an online survey. The online survey measured disease duration, uncertainty, and demographic characteristics. Multiple variable linear regression was calculated to test for an association between diabetes duration (in years) and uncertainty in diabetes self-management. Post hoc one-way analysis of variance with Tukey’s HSD test was calculated to investigate uncertainty at five and ten-year disease duration intervals. Results : With adjustment for age, gender, and education, diabetes duration was negatively associated with uncertainty (b = -0.15, p= .03; 95% CI = -0.28, -0.01). Uncertainty was lowest among the 64 participants with a duration equal to or greater than 40 years (M=63.53, SD=15.04). In Tukey’s HSD post hoc test, the mean difference on the uncertainty scores for 5 to < 10 years diabetes duration (n=38, M=72.66, SD=14.51) and 40 or more years diabetes duration was significant (p = 0.02, 95% CI = 0.81, 17.44). Conclusions : Individuals with longer disease duration reported less uncertainty related to self-management, and uncertainty varied by duration interval. These findings provide preliminary information about where to place behavioral interventions designed to reduce uncertainty among individuals with type 1 diabetes.

Understanding Uncertainty Among Critically Ill Patients in the Intensive Care Unit Using Mishel's Theory of Uncertainty of Illness.

The concept uncertainty has been explored in critical care but only among patients with myocardial infarction and post-cardiac catheterization using the Uncertainty in Illness Theory. Uncertainty is also a finding of numerous studies conducted in intensive care units (ICUs) that included only family members as participants of the research. The purpose of this article is to explore, describe, and understand the concept of uncertainty among patients and family members during critical illness in the ICU from the perspective of a phenomenological study with support from other studies published in the literature using Mishel's Theory of Uncertainty in Illness. The concept "uncertainty" as the topic for this article is one of the specific themes illuminated from a qualitative phenomenological study conducted in the ICU in 2010. Five from each category of patients, family members, and nurses were interviewed until data saturation was achieved. The data were analyzed using van Manen's wholistic, selective, and detailed line-by-line approach until themes were illuminated. Uncertainty is a patient-specific theme illuminated in this qualitative phenomenological study not noted among the family members. The patients perceived that they "do not know what is going to happen," "if they are progressing or not," or "if they will make it or not." Uncertainty among patients related to critical illness should be further explored. Patients with different critical care diagnosis should be included as participants.

Uncertainty in pediatric bone marrow transplantation: A qualitative analysis about parents’ perspective

Background: The uncertainty is innate in parents of children under bone marrow trasplantation. The parents’ view of uncertainty during their children’s bone marrow transplantation (TCSE) hasn’t yet been explored. There is evidence that uncertainty experienced as a reaction to disease is linked to a lower quality of life. The purpose of this study was to explore the parents’ experience of uncertainty during their children’s TCSE. Methods: This study applied qualitative approach using phenomenology method. To perform this qualitative study, semi-structured interviews were performed. Basing on this analysis, we will evaluate if Mishel’s Uncertainty in Illness Theory can explain this experience and specify the connection between uncertainty experienced by family and nursing care during TCSE. A convenience sample of 26 parents were recruited from TCSE unit in Padua Hospital. Each interview was audio recorded, transcribed, and coded for major theme using a content analysis approach. The extracted interviews were analyzed through Colaizzi method. Interview topics were: uncertainty aspects during bone marrow transplantation, means of uncertainty, life aspects influenced by uncertainty, how dealt with uncertainty. Results: From the analysis of the interviews four macro categories were defined: multiple uncertainty’s meanings, multiple side of uncertainty, uncertainty side effects, management of uncertainty. The parents will live the consequences of such uncertainty for all their life and they will never find a boundary which lay the end. The bone marrow transplantation doesn’t remove uncertainty, but it causes uncertainty. Parents report need for contact with expert nurses to discuss the meaning of their uncertainty, in order to reduce it. Conclusions: The parents’ experience of uncertainty can be described following Mishel’s Uncertainty in Illness Theory. The lives of the parents are dominated by uncertainty. Nurses need to be educated to be able to encourage parents to communicate their existential questions and the impact of the illness on their life. Enhanced awareness and increased understanding about parents’ uncertainty can be important factors in improving nursing work environment and the quality of care presented to pediatric patients and their family.

Dementia and Caregiver Stress: An Application of the Reconceptualized Uncertainty in Illness Theory

The Reconceptualized Uncertainty in Illness Theory (RUIT) was used to investigate antecedents to, appraisals of, and ways of coping with stressful caregiving. Four focus groups with caregivers (8 males and 16 females) of relatives with dementia were conducted; 15 cared for their parents and the remainder cared for their spouses. They were recruited from an adult care center and other community settings in a metropolitan area in New England. The discussions were audiotaped and transcribed verbatim. Two researchers independently coded the transcripts. Thematic analysis was structured according to the RUIT. The study is unique in its application to caregivers as opposed to patients and to all of the elements of the RUIT. Caregivers experience uncertainty in similar ways to patients with life-altering illness. Symptom severity—lack of personal boundaries, repetitive and aggressive behaviors, and the need for constant care—was the most frequent source of stress. The appraisals were mostly negative and included feelings of resentment, a lack of support from family members, financial strains, and loss of freedom. Self-improvement and self-care were important aspects of coping. Spirituality and humor were other coping skills that respondents used. Not all respondents said they were coping and some also reported that support from health care providers was not always helpful. Nurses can help improve coping by explaining the factors that contribute to caregiver strain and uncertainty, and by assisting caregivers to anticipate the effects of the caregiving role.

Survivor in the cancer context: a concept analysis

The aim of this analysis was to define survivor in the cancer context. Cancer survivor has been used in the cancer lexicon, but may not represent the individuals it defines. This concept analysis was completed according to Walker and Avant's method. PubMed, PsychInfo, CINAHL, JSTOR, Google and medical and public health websites. Thirty sources from multiple disciplines, published between 1987-2013, were analysed for recurrent themes and conceptual meaning. Critical attributes, antecedents and consequences were extrapolated. Model, related and contrary cases were developed based on an amalgamation of clinical observations. Illegitimate, borderline and invented cases were excluded for this reason. Survivor in the cancer context is an individual with a history of malignancy, who has lived through a personalized challenge and has ongoing positive and negative consequences. Not all cancer survivors would identify themselves using the term survivor. This contributes to the paradigm shift of cancer as a chronic disease as it establishes the unique nature of the cancer experience while highlighting the long-term concerns related to this set of diseases. The Theory of Uncertainty in Illness provides a framework to understand the individualized nature of being a cancer survivor. Nursing research and practice should address the personal experiences of cancer survivors while still focusing on general survivorship needs.

The health change trajectory model: an integrated model of health change.

Health and illness fluctuate across a person's life span, and various theories have been developed to address the unique perceptions and situations that accompany these fluctuations. An innovative model of health change resulted from a synthesis of the major concepts from 2 such theories: Mishel's uncertainty in illness theory and the Corbin and Strauss chronic illness trajectory framework. The proposed integrated model, the Health Change Trajectory Model, provides original conceptual definitions that operationalize trajectory framework in the context of changes in health. The use of a health trajectory perspective extends applications of the model to a wide range of health changes that result in uncertainty and ambiguity.

Exploring mHealth as a new route to bridging the nursing theory-practice gap.

The purpose of this article is to evaluate mHealth as a tool for research and development of nursing theories. Mobile health (mHealth) is one of the most promising new advances in health care technology. mHealth is defined as the use of mobile technology in the provision of health care delivery or health promotion (Qiang, Yamamichi, Hausman, & Altman, 2011). The need for innovative and effective interventions for the prevention and management of chronic illness is evident. The use of mHealth interventions in the treatment and monitoring of chronic illness is still young but shows great promise. Currently, the public health and psychological sciences are using their theories to guide interventional studies by operationalizing concepts through mHealth's multifaceted capabilities for patient interaction. Outcomes measures from chronic illness-mHealth studies are thematically evaluated by using theoretical nursing outcome-related concepts of Meleis's transitions theory and Mishel's uncertainty in illness theory. Despite a small sample of articles, there are strong themes of activation and engagement within this literature review. The application of nursing theory in mHealth offers a new method to operationalize theoretical concepts, test theory-based interventions, and gain new contextual insight into the health-illness patient experience.

The correlation between perceived social support and illness uncertainty in people with human immunodeficiency virus/acquired immune deficiency syndrome in iran.

Background:Illness uncertainty is a source of a chronic and pervasive psychological stress for people living with human immunodeficiency virus (HIV)/acquired immune deficiency syndrome (AIDS) (PLWH), and largely affects their quality of life and the ability to cope with the disease. Based on the uncertainty in illness theory, the social support is one of the illness uncertainty antecedents, and influences the level of uncertainty perceived by patients.Aim:To examine uncertainty in PLWH and its correlation with social support in Iran.Materials and Methods:This cross-sectional correlational study was conducted with 80 PLWH presenting to AIDS Research Center, Tehran, Iran in 2013. The data collected using illness uncertainty and social support inventories were analyzed through Pearson's correlation coefficient, Spearman's correlation coefficient, and regression analysis.Results:The results showed a high level of illness uncertainty in PLWH and a negative significant correlation between perceived social support and illness uncertainty (P = 0.01, r = -0.29).Conclusion:Uncertainty is a serious aspect of illness experience in Iranian PLWH. Providing adequate, structured information to patients as well as opportunities to discuss their concerns with other PLWH and receive emotional support from their health care providers may be worthwhile.

An experience nursing an uncertain patient with complications after bariatric surgery

This article describes a nursing care case in which a 33-year-old housewife received laparoscopic bariatric surgery and developed complications requiring multiple subsequent hospital admissions. Throughout the course of treatment from June to September 2010, the patient repeatedly experienced anxiety, helplessness, and depression due to recurrent complications that resulted in her loss of confidence in the treatment provided by the surgical team. During her fourth hospitalization, the Mishel Uncertainty in Illness Theory (MUIT) was applied to assess and establish the cause of her feelings of uncertainty toward her illness. Through a combination of reinforced emotional support, encouragement, disease consultation, individualized care measures, and improved doctor-patient communication, the patient's ability to care for herself improved and she regained confidence in control of her own physical condition. In addition, the active involvement of the patient's family throughout the course of treatment enabled her to persevere through the uncertain treatment period and successfully return to a normal life.

Evaluating the reasons underlying treatment nonadherence in VLU patients: Mishel's theory of uncertainty. Part 2 of 2

Part one of this review discussed how self-efficacy is an appropriate health behaviour change model to encourage patients with healed venous leg ulceration (VLU) to undertake self-care activities which may help reduce the incidence of recurrence. However, it has been highlighted within the literature that some patients demonstrate little understanding about the aetiology of their leg ulcer, despite having received explanations from health care professionals. This knowledge deficit is a potential barrier to changing health behaviours. In the second part of this two-part review, the literature on this knowledge deficit will be reviewed together with a discussion on the potential implications this may have for healthcare professionals (HCPs) in attempting health behaviour change in this patient group. In order to offer a possible explanation for this knowledge deficit, an overview of Mishels' Theory of Uncertainty in Illness will be given and its potential relevance to VLU patients will be discussed.