Masters of Nursing, Advanced Practice Leadership student
By Emma Hannah
When Donna Zukowski started her Masters of Nursing in Advanced Practice Leadership, she already had her research question in mind. Having worked as the manager of the Hepatitis Clinic at the Kelowna General Hospital since 2006, she was aware of how little research about the lived experiences of women with Hepatitis C existed. Despite a small amount of Australian literature that reflected women’s voices, Zukowski believed that biographical stories — highlighting the challenges of being diagnosed with Hepatitis C as well as the ways in which Hep C positive women are unfairly stigmatized — was relatively unchartered territory.
When Zukowski and her supervisor Bernie Pauly sent out roughly 100 letters of inquiry seeking research participants to women in four British Columbian communities, they received a tremendous response. “I was hoping for eight [participants],” Zukowski says. Zukowski received twenty responses — all from
women with Hepatitis C who were eager to share their experiences.
The overwhelming response led Pauly to encourage Zukowski to consider undertaking a thesis rather than the project option she had selected to pursue for the completion of her degree. The idea was, “a little scarier,” Zukowski says.
Zukowski was unsure about what a thesis using such sensitive information would look like. Her background as a nurse ingrained in her to keep patient information confidential; the idea of writing about such personal issues — even from women who had signed consents and were willing to share their
experiences — required a shift in mindset. Zukowski credits her supervisor Pauly with giving her the confidence and support she needed to proceed, “Marginalized populations are Bernie’s expertise, and that gave me confidence”. Pauly stressed that the women’s voices needed to be heard and Zukowski notes that by the end of her research she felt like she had shared in a valuable experience.
To Zukowski, her thesis research became emblematic of how research and practice should inform one another. The women in her study shared powerful stories in which there was a common thread — the feeling of being silenced and a fear of being stigmatized. Existing Hepatitis C research is heavily focused on quantitative data and emphasises the physical implications of living with the disease; Zukowski’s research was a departure from this more common approach.
Zukowski explained that much of the knowledge generated from research using a quantitative approach addressed the physical aspects of the disease, providing women dealing with a Hep C diagnosis little in terms of support or resources. The women vocalized that they felt lost when it came to questions about the spiritual or emotional aspects of the disease. Questions like “How do I talk to my family?” and fears about contagion were not addressed.
The societal stigma associated with having Hepatitis C led many women to internalize these feelings. “It was interesting to learn that even though these women may have felt physically well, the impacts of the disease internally were huge.” Zukowski remembers a woman who shared an experience of having a test done and the technician did not want to help the woman take off her sweater, despite the fact that she was having difficulty. The experiences of these women and the
stories that they shared pushed Zukowski to think about her own approach to patient care and motivated her desire to communicate a broader perspective of Hepatitis C patients’ experiences.
After defending her thesis in April and convocating in June, Zukowski’s research has already contributed to her practice community through a presentation of her findings that she did in collaboration with a fourth year nursing undergraduate student. “It was nice to share my learning experience at the graduate level with another student,” noted Zukowski. The student was interested in hearing about Zukowski’s experiences and to learn about the research process. Most importantly for Zukowski, sharing her experiences with, and perhaps inspiring another student, continued her own learning process even after the completion of her degree.
Zukowski is currently working to publish sections of her thesis and has recently been invited to speak about Hepatitis C patient’s lived experiences by the medical director of the Kelowna General Hospital.
From 2011 Summer Communiqué
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