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| author |
Kadeem Zandre Gayle
| | title |
Pain Crisis: Narrative Inquiry on the Lives and Experience of Adults Living with Sickle Cell Disease Pain and Pain Management
| | abstract |
The aim of this study is to provide a narrative description and analysis of the experience of individuals living with SCD pain, pain management, and their relationships with healthcare professionals. A qualitative narrative research design was utilized, using semi-structured interviews with a convenience sample of twenty participants. This study produced a collection of illness narratives through the voices of "sickle-cell warriors"—a common phrase in the SCD community that embodies the strength of overcoming challenges often faced with the phenomenon. The analysis of the research identified five themes: self-awareness, SCD pain, SCD pain management, trustworthiness, and isolation. It is important for adults living with SCD to be self-aware and in control of their disease experience. This study's findings showcase stories of SCD patient self-awareness, which previous scholarship had not captured to date. SCD pain is individualized and difficult to describe since pain can occur anywhere blood flows in the body. In this study, the participants took pride in managing their pain but felt ER pain management was ineffective and did not sufficiently take their experience into account. Participants reported that they had trustworthy relationships with their hematologists. Participants found it was difficult to establish trusting relationships with ER clinicians because, as many reported, these practitioners did not recognize them as partners-in-care, which left them feeling isolated. The narratives also provided insight on healthcare professionals' moral obligations through participants' perspectives. Storytelling is important in understanding the human experience and is essential in establishing communicative physician-patient relationships. Advocacy though storytelling is one of the most important ways to bring awareness and educate not only the sickle cell community but the healthcare community.
| | school |
The Caspersen School of Graduate Studies, Drew University
| | degree |
D.M.H. (2024)
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| advisor |
Catherine Burns Konefal
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| committee |
Rosemary S McGee
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| full text | KGayle.pdf - requires Drew uLogin |
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