Nursing Research and the Transformative Value of Art

In their essay, Nursing Research and the Transformative Value of Art, nursing researchers Vangie Bergum and Dianne Godkin trace a history of the tension between the art of nursing and an overarching emphasis on science, suggesting that those fixed boundaries in nursing research are disappearing—a proposition, they note, that was also being traced by other nursing researchers. Their essay proposes that “the transformative value of art within our research environment is found in the intermediate space (Behar, 1996), or relational space , tat exists between the researcher and the researched, between the question that is asked and the answer that evolves, between the research done by the researcher and the public for whose benefit the research is carried out”.

As a point of intersection between nursing, the visual, and the performing arts, this intermediate (or liminal) space is precisely the space we can inhabit through multiple forms of practice, whether performative or visual.

We recently launched an artist-in-residence program between the Colleges of Nursing and Arts and Architecture at Penn State University.

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The residency centers on the art of caring for people in the midst of some of life’s most difficult experiences so that we might create a forceful interface at the nexus of the science and art of nursing. Our aim is the purposeful infusion of artistic representation into the science of nursing to establish new ways of understanding the complexities of living through altered states of health. For the purpose of collaboration, we combined the backgrounds of nurse researchers with that of a performing and visual artist who makes work about death and dying, as well as about anxiety and depression.

We discussed an initial collaboration using Story Circles as a methodology to investigate the potential for enhancing research aimed at improving illness representation, communication (art as data), and potentially art as intervention.

The art of nursing includes fostering an understanding of patient and family experience to inform care. With this in mind, artistic expression holds important implications for enhancing nursing education, practice, research, and even how nurses come to cope with the stress and emotional burden that caregiving may bring. Story Circles maximize our ways of looking at peoples’ health experiences, moving beyond traditional paradigms of representation, thereby increasing potential for broader interpretation and action. Story Circles are both reflective and dialogic, offering the chance to observe body language, tone of voice, and follow-up reflection for clarity. They bring people together to answer questions using stories drawn from their own lives. We are testing the feasibility and utility of Story Circles as a methodology to enhance understanding in three main areas of focus: 1) everyday experiences of older adults who report cognitive problems; 2) illness perceptions of persons living with advanced heart failure; and 3) home health nurses and family caregivers experience with delirium superimposed on dementia.

First, we will engage community-dwelling older adults who report cognitive problems in a Story Circle to explore the nuances of their experiences as well as influences on self-perceptions, daily activities, and well-being. Older adults’ everyday concerns related to cognition are associated with negative health-related behaviors such as withdrawal from social activities and negative emotional impact such as depression or anxiety symptoms. Approximately 25% of older adults report cognitive problems. Although these reports are associated with an increased risk for future cognitive decline, daily functional difficulties, as well as decreased well-being, the phenomenon has not been well studied from the perspective of the older adults themselves. Qualitative studies have examined early cognitive problems among older adults, but findings to date are unable to differentiate those who will experience progressive cognitive decline from those who will not. There is a need to better characterize the phenomenon, and a more thorough understanding will help guide clinical assessment and the development of preventive interventions.

Second, we will utilize Story Circles with persons living with advanced heart failure to explore their experiences, their illness perceptions, and how these perceptions might influence goals of care and decision-making. Persons living with advanced heart failure face a five-year mortality rate of 50% following diagnosis. In light of the high mortality rate, there is growing body of evidence on the importance of goals for care conversations between a person living with an advanced illness and their healthcare providers. An understanding of a person’s wishes is a foundational cornerstone of person-centered care and a person’s perception of their illness has profound implications regarding goals of care and decisions regarding advanced treatment options such as mechanical circulatory support, especially at the end of life. A recent study examined illness perceptions in persons with advanced heart failure and found that 80% of participants with a predicted life expectancy of less than 2 years did not perceive the severity or terminality of their heart failure. There is a gap in our current understanding of how persons living with an advanced life-limiting illness such as heart failure perceive their illness and how this might influence decision-making. New knowledge regarding a person’s illness perceptions has important implications for future work including goals of care conversations and decision making for heart failure throughout the illness trajectory and especially at the end of life.

Finally, we will explore the experience of delirium and delirium superimposed on dementia in older adults and their caregivers. Recalling experiences with delirium and delirium superimposed on dementia (DSD) can be difficult, and very little is known about the recognition of delirium by home health workers and community nurses, despite work that has shown that many older adults are admitted to the hospital with delirium and experience distress with delirium. Under recognition of delirium leads to poor outcomes, but recent evidence suggests that if delirium superimposed on dementia is promptly recognized, and correctly managed, these poor outcomes can be improved. Art has been used increasingly in work with persons with dementia, but much less work has been done in the area of delirium . This work will employ Story Circle methodology to explore the experiences of community-dwelling older adults with delirium and their informal and formal caregivers (home health nurses), with a focus on capturing rich details of these experiences. The long-term goal of this research will be to develop informed and pragmatic interventions for delirium at home.