The goal of this study is to learn if a culturally adapted version of the Hello game, an advance care planning (ACP) conversation tool, is feasible and acceptable for use with members of the Washoe Tribe. The main questions it aims to answer are:
Can the Hello game be successfully adapted to reflect the cultural values, beliefs, and storytelling traditions of the Washoe Tribe?
Does playing the adapted Hello game increase ACP engagement and advance directive (AD) completion among Washoe Tribe members within 3 months?
Participants will:
* Take part in talking circles at one of four Washoe reservations to share their beliefs, motivations, and experiences related to end-of-life care and advance care planning * Complete brief questionnaires about their ACP attitudes and behaviors * Play the culturally adapted Hello game in a group setting * Complete follow-up measures of ACP engagement and advance directive completion 3 months after playing the game
Age 18 years or older
Member of the Washoe American Indian Tribe
Able to attend in-person events
Speaks, reads, and writes in English
Under 18 years of age
Non-Tribal member
Non-English speaking
Unable to provide informed consent
Sequential
Aim 1: Talking Circles
BehavioralTo expand study partnership with the Washoe tribe to further explore the needs, motivations, and barriers related to ACP and end-of-life decision-making for Tribal members and explore how findings converge or diverge from Western culture and across Washoe reservations. 2 talking circles (qualitative focus groups) will be conducted at each of the 4 Washoe reservations (n=8 groups, 48 individuals) along with brief questionnaires to: 1) explore beliefs about and motivations for ACP; 2) determine if and how storytelling plays a role in ACP; and 3) define meaningful and culturally appropriate ACP outcomes for the Washoe tribe.
Aim 2: Play Modified Hello Game
BehavioralAdapt and pilot test the Hello conversation game for use by the Washoe Tribe while establishing procedures for measuring the game's impact on ACP engagement. This objective includes: a) incorporating tribal recommendations to culturally adapt the game based on findings from objective 1, and b) conducting a feasibility and acceptability study of the modified game with 60 Washoe tribal members (15 from each reservation) using convergent mixed methods to assess preliminary outcomes and refine procedures for the future clinical trial.
Arm 1: Qualitative themes describing Advance Care Planning needs, motivations, and challenges
Participants will take part in qualitative focus groups, where they will verbally answer questions in a conversational format. These conversations will be audio recorded and qualitatively analyzed. Demographic information will be collected along with contact information. No validated survey measures will be used to collect data at this time point. Only qualitative data, demographics and contact information.
Arm 2: Initial Enrollment Subject Numbers
Feasibility metric (Observed by Research Assistant) - How many participants actually enrolled.
Arm 2: Retention at 3-month follow-up
Feasibility metric (Observed by Research Assistant) - # of participants who attended the follow-up event.
Arm 2: Acceptability Score
Feasibility metric; participants will fill out Conversation Acceptability measure to determine acceptability of playing the Hello game. The Acceptability measure consists of 3 items; 2 items on a Likert scale from 1-7 with 1 being Strongly Agree and 7 being Strongly Disagree, and 1 item indicating likelihood of recommending conversation activity to others on a scale of 0-10 with 0 being not likely at all and 10 being extremely likely.
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Milton S. Hershey Medical Center
Lead sponsor
National Institute of Nursing Research (NINR)
Collaborator
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