| Summary: | Research Questions The purpose of this dissertation is to explore and describe self-stigma characteristics in various treatment phases of breast cancer (BC) and how this impacts patients’ trust in the treating oncologist in the prognosis communication experience, as well as the BC patients' different information seeking behaviors: (i) Self-Stigma Characteristics in BC Treatment Stages and Among Racial Groups (ii) Trust in the Oncologist as Information Source and Self-stigma in Prognosis Communication in Breast Cancer and Patients and Survivors (iii) Types of Information-Seeking Behavior and Self-Stigma in Breast Cancer Patients and Survivors Background After a cancer diagnosis, BC patients are forced to rely on their physicians to help them battle the illness, gain an understanding of the disease, and manage treatment plans. Studies indicate that meeting the informational needs of the patient, through what is referred to as information-seeking behavior, is imperative to effective doctor-patient communication and ultimately successful health outcomes. When a patient believes that their cancer is terminal, they are more likely to experience self-stigma versus when they believe the cancer is curable. Self-stigma is an important factor in patient’s treatment decisions and disease management processes. It can be understood as the reduction of an individual’s self-esteem or self-worth caused by the individual self-labeling herself or himself as someone who is socially unacceptable. Trust in the physician is an intrinsic component to the patient-centered model of care. Trust is connected to health outcomes and quality of care and is one aspect of the medical encounters that is impacted by patients’ psychological side effects (e.g. self-stigmatization). To date, little research has been conducted to understand the stigmatization processes and side effects impacting the BC patients’ experiences. Our study explores these critical questions and seeks to provide a better understanding of how self-stigmatization is experienced in different BC treatment stages. This study also investigates the combination of self-stigmatization with other essential elements of the BC prognosis communication experience, including the patients’ trust of the oncologist’s role as an information provider and the patients’ information-seeking behavior attitudes. Methodology The current methodology was structured and executed in three parts: 1) A systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses to describe the characteristics of self-stigmatization for each treatment stage of BC and to discuss the differences or commonalities of self-stigma experience in various BC treatment stages and racial/ethnic groups. 2) An online survey of 108 BC patients and survivors was conducted to investigate the levels of trust which BC patients and survivors have in their oncologists in the prognosis communication process, as well as to examine the associations between self-stigma components and the level of trust in oncologists on breast cancer prognosis communication. Study data were collected and managed using REDCap electronic data capture tools hosted at University of Illinois at Urbana-Champaign. Measurement scales consisted of CASS (Cancer and Stigma Scale) and TIPS (Trust in Physician Scale). 3) An online survey of 108 BC patients and survivors was conducted to assess: a) self-identification types of information seeking behavior of BC cancer patients and survivors and b) to evaluate the association between self-stigma and information needs seeking behaviors in cancer survivors and BC patients. Study data for this aim were also collected and managed using REDCap electronic data capture tools hosted at University of Illinois at Urbana-Champaign. Measurement scales used were CASS (Cancer and Stigma Scale) and TINQ-BC (Toronto Informational Needs Questionnaire-Breast Cancer). R software was used for statistical analysis. Linear regression was first used to investigate associations between the mean scores from the CASS, TIPS and TINQ-BC scales. For the independent variables, those with a p-value no higher than 0.1 in the univariate analysis were included in the multivariate analyses in order to avoid residual confounding (Maldonado & Greenland, 1993), and were only retained if the p-value reached the conventional level of significance of 0.05. Results Findings reveal that self-stigmatization attributions influence the information-seeking behavior as a fluctuating phenomenon in various BC treatment phases and vary among racial groups of BC patients and survivors along the disease trajectory. Additionally, key socio-demographic factors such as income, education, race/ethnicity influenced how much trust a patient has for his or her doctor. Findings also suggest that socio-demographic factors influenced self-stigma, a less understood psychological side-effect afflicting BC patients and survivors. Lastly, our study highlighted the complexity of factors that impact information-seeking behaviors and informational needs of BC patients and survivors. For example, older patients required more information about the psychological effects of cancer, whereas higher educated and upper-class income BC patients had heightened cancer informational needs overall. Both overweight as well as lower income BC patients and survivors avoided additional information about physical aspects of the disease. Moreover, self-stigma attributions further influenced the informational needs profiles of BC patients and survivors. Given the beneficial role of both trust in the physician and information-seeking in optimizing health outcomes and experiences of BC patients, these two attributes should be better understood, investigated and introduced into the clinical arena in the near future. Limited Author requested closed access (OA after 2yrs) in Vireo ETD system
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