‘It Feels Really Vulnerable and a Little Dangerous’: When Words Are Not Enough

ABSTRACT

Imagine being given the immense responsibility and gift as a researcher to deliver a person’s final nature experience. People living with severe chronic obstructive pulmonary disease (COPD) are often sheltered from nature experiences due to their disease status; however, they have rich memories of past nature experiences. The goals of this overall journey of co-creation were two-fold: (1) co-create personalized nature-based utilizing immersive 360-degree virtual reality (VR) experiences based on participants’ experiences in outdoor spaces; (2) utilize a narrative approach to explore the lived realities of people living with severe COPD. Throughout this collaborative research process, I made home visits, phone calls, and many trips to four people’s personalized outdoor places in the Upstate of South Carolina. In doing so, I lived the experience of person-centered research. This essay focuses specifically on one participant, David, his wife and caregiver, Anne, and the co-creation of David’s last virtual trip to his most cherished places in nature. Re-gifting David’s last nature experience in his favorite outdoor places profoundly changed my research approach. This essay considers how I reconciled the disconnect between the “scientific” language used in health research and the lived experience of being a researcher during end-of-life processes, specifically attending to the terms: attrition, participant, and researcher.

Acknowledgements

Special thanks to Bon Secours St. Francis Health System and Palmetto Pulmonary & Critical Care Bon Secours participants and their caregivers for their support and willingness to participate in this co-creation journey. I am honored to have been told your stories.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The work was supported by Clemson University.