NWT RESEARCH DATABASE

Regions: North Slave Region, South Slave Region

Tags: social sciences, storytelling, art

Objective(s): To explore whether different factors of time, aesthetic and style affect how people use the Reflection Room and whether they have a different impact on helping people move from death-denying to death-discussing to death-accepting.

Project Description: Human beings are storytellers. Understanding complex challenges through narrative builds empathy. Stories also trigger the imagination for future possibility. The research team think that providing places for storytelling and places for reading the stories of others might trigger more thinking and discussing dying and death. In this research, the team will build on a study of, Reflection Rooms, which are short-term physical spaces across the country where people were invited to write their stories about dying and death and to read the stories of others. Human beings are storytellers. Understanding complex challenges through narrative builds empathy. Stories also trigger the imagination for future possibility. The research team think that providing places for storytelling and places for reading the stories of others might trigger more thinking and discussing dying and death. The research team will install Reflection Rooms for longer periods of time than in the previous study and with a different aesthetic and style. The team will explore discover whether these factors of time, aesthetic and style affect how people use the Reflection Room and whether they have a different impact on helping people move from death-denying to death-discussing to death-accepting. The research team will also launch a refreshed online version of the Reflection Room to discover whether an online space provides a place for storytelling and places for reading the stories of others that might trigger more thinking and discussing dying and death. The study in general will use qualitative methods to analyze the content and context of the stories that are told, and quantitative methods will be used to analyze the reasons that people tell or respond to stories, and, among those who do not tell or hear stories, their rationale for not doing so. The data will be collected in the following: 1) Photographs of the specific installations; 2) The stories that are recorded on the reflection cards provided in each installation; 3) As visitors leave each installation that asks them for their reaction to the installation and will invite them to add an email address that can be used to send an online link to a second, follow-up survey three months later; 4) The number of people who visit TheReflectionRoom.ca (number of unique visits and number of repeat hits); and, 5) The number of clicks the advance care planning resources and support pages receive. The photographs from the installations will be used to recall the context and specific features of each installation. The context and specific features will be analyzed thematically and installations that are similar thematically will be grouped, and the groupings will form the basis for analysis of similarities and differences across all the installations The stories on reflection cards or posted on TheReflectionRoom.ca will be analyzed through open coding, identifying similarities, differences, themes, concepts by the research team after each installation. Using a constant comparison approach, the themes from all the stories from all installations will be analyzed to produce a cumulative, recursive set of themes across installations. The research team will identify up to 10 sites for physical installations through a variety of means, for example, through word of mouth with attendees of conferences, social media releases, and emails to a variety of hospices and community organizations across Canada. The invitations would include a description of The Reflection Room. At specific installations, there may be posters that inform potential participants about the Reflection Room installation, and there may be periodic tweets from the SE Research team (formerly known as Saint Elizabeth Research team) via the SE Research Twitter account (@SEHCResearch), such as: Join @SEHCResearch at the Reflection Room to read peoples’ stories about experiences with dying and death. People who find themselves near the Reflection Room will volunteer when they approach an installation of the Reflection Room, complete a Reflection Card and/or complete a survey. No participants who volunteer to participate will be excluded. Upon visiting the Reflection Room, potential participants will also be invited through a notice displayed on a table outside the Reflection Room to complete a survey. Recruitment for the online space will be through a combination of promotional materials at the physical installations (handouts, posters, information booklets, and business cards) that will have the website address listed, through word-of-mouth promotions at conferences and other networking opportunities, and through social media posts on the @SEHCResearch Twitter account. To provide information to potential participants about the study, the opportunity to participate in it, and the terms and conditions, a notice will be posted in a conspicuous place outside each physical installation. For the online space, implied consent will be obtained when participants choose to visit the website and subsequently post a reflection story or complete the survey. A posting will appear on the site. The Reflection Room relies on the benefits of storytelling for bereaved family members and engaging in topics such as dying, death, and grief. Those who participated in the storytelling found the approach helpful. Previous research has shown that storytelling can have an affirming, healing effect, not only on the storyteller but also on those who hear or receive the stories including when those stories are told or read online. This reflection process can hopefully lead to earlier discussion for advance care planning and end of life care. The purpose of the Reflection Room is to move away from a death-avoiding society to a death-discussing to promote earlier advance care discussions. The results of this study will be uploaded and accessible on the website: https://thereflectionroom.ca/.