ArtiFACT Legacy Project

Across cultures, humans make, buy, find, share, or gift objects. Over time, all objects take on new meanings as they remind us of moments, people, or places. The ArtiFACT Legacy Project invites palliative care patients and family members to build new memories together as they use objects from home to spark conversations and reminisce. Artifacts chosen by patients or family members are photographed and the photographs are 3D printed. Stories about the chosen artifacts are recorded and edited by family members with guidance and assistance from local student volunteers. Tags with barcodes and/or QR codes linking audio files are affixed to the 3D prints and, if desired by patients and family members, the finished ArtiFACTs may be placed into a collaborative, interactive exhibit in which visitors scan the barcodes affixed to 3D printed object replicas to hear the story of each item, as told by the person to whom it belongs. At the end of the exhibit, patients or family members receive their ArtiFACT and a thumb drive with the audio recording. The ArtiFACT serves as a tangible memoir for family members and a celebration of each patient’s life.

ArtiFACT Legacy and Hospital Bracelet Projects CONSENT AND ORAL HISTORY RELEASE FORM

Title of Project: The ArtiFACT Legacy Project and Hospital Bracelet Project

What the Study is About

This study provides two creative multimodal storytelling opportunities to palliative care patients and their families. Subjects may opt to participate in one or both studies. We will survey participants to understand whether they felt that the creative projects facilitated opportunities for personal expression, for sparking conversations and storytelling with family members and/or building community, for creating positive experiences and making new memories, or any other positive outcomes. We also aim to understand any drawbacks or concerns of participants relating to the projects.

What we will ask you to do

If you agree to be a part of this project, you will be invited to attend a series of one to six workshops. During the workshop(s), you will mingle, share an object or collection of fabric scraps with special significance, photograph these items or create fabric bracelets from the items, and record a story about the object or fabrics you brought to share. To do so, you may work with your family member or with a volunteer. Subsequently, you will have the opportunity to work with others to build the ArtiFACT Legacy or Hospital Bracelet exhibit by editing interviews and by 3D printing lithophanes or gluing homemade fabric to prefabricated bracelet cuffs. In addition to the workshops preceding the exhibit, all participants will be invited to events surrounding the public presentation of the project. As a project participant, you will have the opportunity to complete two surveys to help us understand the impact and outcomes of the ArtiFACT Legacy and Hospital Bracelet Projects. Online surveys will be distributed at the beginning and at the conclusion of the study. You will receive a survey immediately following the first event to collect basic background information your experiences in the first workshop. Concluding surveys will be sent after the opening of the final exhibit.

Risks and benefits

We do not anticipate that there will be risk to participants in this workshop and exhibit other than those encountered in day-to-day life. Some participants may feel uncomfortable sharing and/or recording stories. We will make every effort to foster comfortable, supportive workshop environments in order to limit potential for participant discomfort and embarrassment. Please remember that, as a participant, you can choose not to answer a question at any time for any reason. If you feel uncomfortable sharing your audio recordings and bracelet or 3D printed lithophanes with a general audience, you may opt not to include your materials in the final exhibit, up until the date the final exhibit is installed and is open to the general public. Participants may learn a new skill, meet new people, share stories and memories with family or friends, and will receive their ArtiFACT or Hospital Bracelet at the conclusion of the workshops or exhibit. (The timing is up to each individual workshop participant.)

Measures to protect confidentiality

The outcomes for the ArtiFACT Legacy Project and Hospital Bracelet Project consist of both a public exhibit and a research study examining whether these creative projects provide opportunities for personal expression, storytelling and/or building community. If you participate in this project you will have the opportunity to complete surveys to share your experience.

For the public exhibit of these projects, full anonymity is not possible, since recordings of patients’ voices are a significant component of the final project. If you are concerned about being identified by your voice, you may ask a student volunteer to re-record your story or you may choose not to participate in the public exhibit. Researchers will not use patients’ voices in project documentation. (Stories will be transcribed and re-recorded to protect confidentiality.) All transcribed excerpts from oral histories will be stripped of identifiable information. The study authors will not attribute any recorded audio excerpts included in these materials to specific participants. Objects created by participants may be photographed by researchers for documentation purposes, but participants will not be photographed.

For the research study, in order to correlate data from participants’ intake and exit surveys, we will ask participants to use a unique identifier that will be assigned to them at the start of the study. Survey results may be published in journal or conference articles, included in project documentation (for presentation online, in person, or over radio or television broadcast), or included in research presentations. The identity of survey respondents will be kept private. In any sort report we make to the public concerning the outcome of the project, we will not include any information that will make it possible to identify you.

Time involvement

The ArtiFACT Legacy and Hospital Bracelet Projects consists of one primary and up to five additional 75-120-minute workshops. Research subjects may opt out of any project workshops or any portion of project workshops up to and including the sharing of their final materials in the public installation. Near the beginning and at the conclusion of the project, participants will be asked to complete short 10-15 minute surveys regarding their experiences.

How the results will be used

Our primary goal is to understand the impact of the workshops and the exhibit experience. Any analysis of the content of responses recorded by workshop participants will be in service of answering questions about the types of opportunities facilitated by the workshop experiences. Results will be presented in a public exhibit for a period of less than two months. Participants’ materials may be depicted in audiovisual documentation of the installation which may be made available online or presented as part of a conference paper, or shared via radio or television broadcast.

Some histories may be transcribed as representative samples of the responses recorded by attendees in a paper that documents the exhibit. The author(s) may reflect on the different categories of responses collected and whether some categories of responses are more common than others.

Taking part is voluntary

Participation in this project and research study is voluntary. Participants may choose to opt out of any workshops or study surveys. Subjects may opt to withdraw from the study at any time.

Questions or Concerns

If you have questions or concerns regarding the workshop, installation, documentation, or any aspect of the study, please contact Abby Aresty at aaresty@oberlin.edu; 440-775-5515, 77 W. College St. Oberlin, OH 44074. For questions regarding the rights of human participants, please contact Daphne John, Chair of IRB, at daphne.john@oberlin.edu, 440-775-8140, Office of the Dean of Arts and Sciences, Cox 101, 70 N. Professor St. Oberlin, OH, 44074.

Statement of PARTICIPANT'S RIGHTS

· I have read and discussed the research project with the researcher. I have had the opportunity to ask questions about the purposes and procedures regarding this study.

· My participation in this research project is voluntary. I may refuse to participate or withdraw from participation at any time without penalty,

· Any information derived from the research project that personally identifies me apart from my voice recording will not be voluntarily released or disclosed without my separate consent, except as specifically required by law.

· I will receive a copy of this consent form.

Please check all that apply:

❏ I consent to the use of a recording of my voice in the public exhibit.

❏ I consent to the sharing of my ( ) Hospital Bracelet and/or ( ) ArtiFACT in a public presentation. (Check all that apply)

❏ I consent to the use of a recording of a voice actor reading a transcription of my story in video documentation of the project. This may be shared online, in conference presentations/papers or journal article, or via radio or television broadcast.

❏ I consent to the photography of my ( ) Hospital Bracelet and/or ( ) ArtiFACT.

❏ I consent to the use of these photographs in audiovisual documentation that will be shared online and in conference presentations and papers, in a journal article, and/or via radio or television broadcast.

My signature means that I agree to participate in this study and that I am 18 years or older and to the conditions outlined above.

Participant's signature: ________________________________ Date:__________

Name: ________________________________

Investigator’s signature _______________________ Date:__________

Name: ____________________________________