Date of Award

2013

Document Type

Dissertation

Degree Name

Doctor of Philosophy

School

School of Education

Program

Leadership PhD

First Advisor

Duane M. Covrig

Second Advisor

Isadore Newman

Third Advisor

Shirley Freed

Abstract

Problem. Women have a one-in-eight chance of being diagnosed with breast cancer in their lifetime. In the past decade, there has only been a decrease of less than 1% in breast cancer morbidity and mortality rates. Breast cancer continues to be a feared disease that ravages even its survivors, and grips many with fear. Furthermore, breast cancer remains the highest cost of care among cancers. In 1990 the overall cost of care for breast cancer was $4.2 billion. In 2010, the total cost of breast cancer care rose to almost $17 billion, and by 2020 the cost trends show an increase of up to 27%. Breast cancer continues to be a crisis for women and a significant concern to health-care providers. A crucial factor in the fight to decrease breast cancer and its effects has been to increase knowledge of breast cancer risk and preventive factors and women’s use of that knowledge. This knowledge is important for women to have so they can practice intentional preventive self-care. Ambiguous knowledge may lead to apathetic or disengaged self-care. The purpose of this study was to develop a model that would predict women who were most likely to lack breast cancer self-care knowledge and effective practice, and identify those women who need to make changes in lifestyle choices. This study was guided by Dorothea Orem’s inter-related theories of self-care and self-care deficit. Orem’s theory is useful for connecting the disease process (breast cancer) to limitations in women’s health care (resources, education, awareness, prevention).

Research Design. This quantitative, ex post facto study measured women’s knowledge of breast cancer risk and preventive factors then correlated with their personal characteristics. A web-based survey was developed with experts to collect data on the independent variables: demographics, physical and emotional health, health practices, and fear. A modified snowball technique was used via email distribution to 20 potential participants. Each survey participant was asked to take the survey and forward the email link to women they knew over 18 years of age, including self-disclosure. Anonymity and confidentiality were enhanced by the use of the web-based survey. Due to the distribution technique utilized, the representativeness was undeterminable. Two hundred and ninety-one women responded to demographic questions, statements about unchangeable risk factor knowledge, statements about changeable lifestyle-related risk factors knowledge, and statements about ways to decrease the risk of breast cancer. A scoring rubric was developed to quantify these responses using a procedural testing methodology, a new term applied to the process of refining the rubrics. This process consisted of mock surveys being distributed, scored, analyzed, revised, and redistributed until the rubrics were reworked to decrease bias or prejudice. A trained panel reached 100% agreement for the finalization of the rubrics. Research from the American Cancer Society and the National Cancer Institute was used to develop the rubrics. The focus for the rubrics was on the three breast cancer risk and preventive factors survey questions: list breast cancer risk factors that cannot be changed; list lifestyle-related breast cancer risk factors that one has control over; and list health recommendations likely to decrease the risk of breast cancer. The rubrics have four main categories: elements which are the breast cancer risk or preventive factors, an ordinal score that measures the detail of knowledge, the detail narrative describing the specificity as it relates to the element, and the scoring detail that determines to which classification category (best, good, fair, or poor) the score belongs.

Findings. The results were alarming given the fact that no matter the variable (age, race, education, professional status, household income, or other demographic independent variables), there was a deficit of breast cancer knowledge. As for personal risk, many felt they were not at risk for developing breast cancer yet had anywhere from one to nine risk factors. These overall knowledge deficits were not just for the lay population of women, but for women health-care providers as well. Over 99% of the women participants scored Fair to Poor as they were unable to report more than minimal detail relating to the three survey questions relating to breast cancer risk and prevention. The limited knowledge and preventive practice related to breast cancer were sobering, especially given that a majority of women, over 95%, had health insurance. It is likely many of these women had health plans that would offer breast cancer risk education and support in preventive self-care practices. Interestingly, 65.8% of these respondents feared being diagnosed with breast cancer and 77% feared treatment for breast cancer. Given the limited variability in women’s responses to breast cancer risk and preventive factors (dependent variables), this study was not able to produce a model that could predict women’s breast cancer risk and prevention awareness. The absence of significant variability in awareness made the internal consistency reliability estimates difficult to obtain. Survey participants also were not reporting engagement of intentional self-care related to breast cancer, suggesting a serious crisis of knowledge and practice in this sample. As important were the overall study conclusions.

Conclusions and Recommendations. Survey findings led to three major conclusions: 1. Women in the study did not know breast cancer risk and preventive factors. 2. Women in the study were gravely unaware of their own personal risk of breast cancer. 3. No model was developed that could significantly predict women likely not to have knowledge of breast cancer risk factors as nearly all women in the study were unable to give adequate responses. These conclusions support the call for a new approach to how breast cancer information is communicated to women as well as defining roles for health-care providers, business leaders, and researchers in helping to raise knowledge that supports health self-care. Several recommendations can be made. First, women need to be reminded of the need to take ownership of learning about breast cancer risk factors. Second, direct health- care providers, including advanced nurse practitioners, need to communicate a clear, concise, and consistent breast cancer risk and prevention message. Finally, researchers need to do more to uncover the reasons for women’s lack of knowledge. First they could replicate this study to see if this lack of knowledge is prevalent among other populations, given that this population had higher education and greater access to health care. My findings may have been more liberal than a more representative sample of those of the general population. For future studies, a qualitative approach with adding mental and emotional health questions and more specific questions on fear may ascertain enough detail about women’s knowledge of breast cancer risk and preventive factors and why the results in this study are so alarming.

Subject Area

Breast--Cancer, Breast--Cancer--Prevention, Breast--Diseases--Diagnosis, Women--Health and hygiene.

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