Advance Care Planning, American Indian or Alaska Native, Gamification
Conditions
Keywords
Advance care planning, American Indian or Alaska Native, Gamification
Brief summary
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
Interventions
BEHAVIORALAim 1: Talking Circles
To 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.
BEHAVIORALAim 2: Play Modified Hello Game
Adapt 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.
Sponsors
Milton S. Hershey Medical Center
National Institute of Nursing Research (NINR)
Study design
Allocation
NON_RANDOMIZED
Intervention model
SEQUENTIAL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
SINGLE (Investigator)
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Age 18 years or older * Member of the Washoe American Indian Tribe * Able to attend in-person events * Speaks, reads, and writes in English * Able to provide informed consent
Exclusion criteria
* Under 18 years of age * Non-Tribal member * Non-English speaking * Unable to provide informed consent
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Arm 1: Qualitative themes describing Advance Care Planning needs, motivations, and challenges | During qualitative focus groups (up to 2 hours) | 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 | RA Observed during participation in Hello game event (up to 1 hour) | Feasibility metric (Observed by Research Assistant) - How many participants actually enrolled. |
| Arm 2: Retention at 3-month follow-up | RA Observed during 3-month follow-up event (up to 1 hour) | Feasibility metric (Observed by Research Assistant) - # of participants who attended the follow-up event. |
| Arm 2: Acceptability Score | During participation in Hello Game Event (up to 1 hour) | 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. |
| Arm 2: ACP engagement survey score Time 1 | During participation in Hello Game Event (up to 1 hour) | Participants will be asked to fill out the validated ACP engagement survey to determine engagement and readiness levels for ACP actions. The ACP engagement survey consists of 4 items asking questions related to readiness for ACP behaviors. 2 items are on a scale of 1-5 with 1 being "I have never thought about it" and 5 being "I already have done it". The other 2 items are on a scale of 1-6 with 1 being "I have never thought about it" and 6 being "I have already done it (more than 5 years ago)". |
| Arm 2: ACP engagement survey score Time 2 | 3-months post game attendance (up to 1 hour) | Participants will be asked to fill out the validated ACP engagement survey to determine engagement and readiness levels for ACP actions. The ACP engagement survey consists of 4 items asking questions related to readiness for ACP behaviors. 2 items are on a scale of 1-5 with 1 being "I have never thought about it" and 5 being "I already have done it". The other 2 items are on a scale of 1-6 with 1 being "I have never thought about it" and 6 being "I have already done it (more than 5 years ago)". |
| Arm 2: ACP Behavior completion | 3-months post game attendance (up to 1 hour) | Participants will be asked to fill out the questions related to ACP behaviors. 6-items will be asked with 1 having options of yes/no/not sure/did not answer; 2 being yes/no/N/A/did not answer; 2 with options yes/no/did not answer and 1 with options nursing home/long-term care/insurance/hospice or palliative/funeral planning/other/did not report/did not answer |
Contacts
CONTACTHeather J Costigan, MPH
CONTACTLauren J Van Scoy, MD
PRINCIPAL_INVESTIGATORLauren J Van Scoy, MD
Penn State University - Hershey
Outcome results
None listed