Study Targets Sickle Cell Disease

An Interview with Phyllis Bazen, MSN Doctoral Candidate, University of Rochester School of Nursing

When Phyllis Bazen attended Syracuse City Schools little did she know that decades later she’d be a doctoral candidate at the University of Rochester involved with a study that looks at Sickle Cell Disease (SCD) and quality of life for those adults living with the disease. Bazen attended Seymour elementary, Blodgett and Shea Jr. High, Corcoran Sr. High and graduated from Fowler High in 1977.

The purpose of this study is to explore the common stressors (hassles) that adults with SCD experience in their everyday lives. The investigators are also interested in exploring the effects that these hassles may have upon your mood and your view of the quality of life living with SCD.

The following is a Q & A session between Ken Jackson and Phyllis Bazen:

Q: Tell me a little about your background: schools, elementary school, upward bound etc.

A: I attended Seymour elementary, Blodgett and Shea Jr. High, Corcoran Sr. High and graduated from Fowler High in 1977.

During my 9th grade year at Shea, chosen to go to the Upward Bound program based on grades and a paper that I wrote for my English class. This then dove tailed into my being among one of the ‘urban ultra brites’ that placed me into the advanced classes at Corcoran and Fowler (e.g., chosen to take freshman English courses from SU during my senior year). This is when I chose nursing as a career. Attended my freshman year of college at Morrisville and then transferred to SU and received by BS in Nursing in 1981.

Q:What is your study about?

A: Entitled: Cognitive Appraisal of Pain and ‘Other’ Chronic Stressors in Adults living with Sickle Cell Disease (SCD); Correlates and Predictors of Health Related Quality of Life. (the shorter version is ‘The Sickle Cell Disease Stress Study’)

I am trying to put a face to SCD and highlight the stressors (emotional, social, socio-economic, and health care related) that adults must contend with on a daily basis. Although unpredictable episodes of acute pain and daily chronic pain is the major pervasive stressor that health care providers are most familiar with, we know very little about the ‘everyday life experiences’ of adult patients. There also are very limited resources for adult patients in the form of psychosocial support.

Q: Goal of your project?

A: The ultimate goal of my project is to describe the pain and non-pain related stressors that adults living with SCD must cope with daily and to be able to highlight the ‘everyday lived experience’. this is my dissertation research that will serve as the ground work that will launch my post doctoral training and thus it is the first step on the journey of my career of becoming a clinical nurse researcher.

Q: Why did you choose sickle cell disease as a research topic?

A: I have been employed at University Hospital for the past 20 years. While working as a hematology/oncology nurse there I noticed that although we had a very small population of sickle cell patients, there really was not much be done to support them- actually, there were not any programs, processes or resources for these patients and their families.

I then started independently researching the disease to learn more about it so that I could provide better nursing care. During my search which included attending the national SCD conferences, I was able to network with other clinician and researchers from around the country. Having seen what great strides they were making, I returned home to Syracuse and began to implement these strategies at University Hospital.

It was also during this time, that I shockingly found out that the group of adult patients at my hospital did not even know each other and therefore, felt very isolated and did not have anyone to talk to who could ‘truly understand what it was like to live with SCD’. I also found out, that they themselves knew very little about their disease. This prompted me to start the CNY Sickle Cell Disease Association- a non-profit community organization.

Out of this grew an adult patient support group whose primary aim was to (a) educate adults about their disease (b) and provide support and guidance to the development of programs at University Hospital. We were able to conduct fund raisers and solicit funding from various pharmaceutical companies so that the group was able to travel to 3 national scd conferences. This empowered and enabled them to see what other institutions were doing for scd.

I was also able to raise the level of awareness and education of health care providers at University Hospital by sponsoring annual SCD teaching days, bringing experts from around the country to present Nursing and Medical Grand Rounds for the staff at University Hospital.

Q: What will participants do during this research?

A: They will complete a one-two hour interview with me that consists of their answering questions about the frequency and severity of pain and non-pain stressors that they must cope with daily. They also have the opportunity to tell me in their own words, what it is like to live with scd and what they hope that heatlh care providers would do to and/or stop doing that would enhance their quality of life and decrease their stress and anxiety related to the disease.

Q: How did you find you career in health related services?
A: Long story, but as a junior in high school i wanted a career that would guarantee me a good job so that i could make enough money to ‘move out on my own’. i chose the LPN program at Morrisville initially because it only required a year of study. However, when I arrived for classes my advisor actually convinced me to enroll in the RN program because my SAT scores ‘were too high for the LPN program and he thought that I should give up this slot to someone else and give them the opportunity. This added and additional year to my study. My mom did not like the fact that I was ‘so far away from home’ (45 minutes away actually) and convinced me to transfer to SU- this added an additional 2 years but allowed me to obtain my BS.

I have always had a love for caring for others, giving something back to my community and others and 25 years later it is still my passion. So, I have enjoyed a great career and have worked in various capacities such as intensive care, nursing administration, home care, outpatient care etc. I also love learning so have actively sought opportunities and challenges to further my career. I am currently a Family Nurse Practitioner working in the Departments of Anesthesia and Nursing at University Hospital as a Pain Management Nurse Practitioner.

Note: For additional Information about the Sickle Cell Disease Stress Study call Phyllis Bazen at 315-278-3548