Using an End-of-life Conversation Game to Engage Underserved Communities in Advance Care Planning

The goal of this project is to explore how best to meet the needs of underserved communities
to improve engagement in the advance care planning (ACP) process, which is defined as a
complex and ongoing process that involves discussions with loved ones and/or clinicians,
and/or may involve completion of an advance directive document. To do so, this national
project will involve two components: 1) a community outreach program, Community Game Days;
and 2) a research project. The community outreach component seeks to provide an effective,
evidence based ACP intervention to 50 underserved communities (defined as those with poor
access to healthcare systems due to economic, cultural or linguistic barriers). Of these, 15
African American communities across the United States will be selected for participation in
the research aspect of the project which seeks to assess the program's impact on and to learn
about the unique needs of African American populations with regard to ACP. A highly
integrated, collaborative approach will be used, bringing together a national organization
concerned about end-of-life care (the Hospice Foundation of America (HFA) and a
university-based academic research team (led by Dr. Lauren Van Scoy at Penn State Milton S.
Hershey Medical Center through her research program, Project Talk).

The project teams will organize and support a 14-month long community outreach project that
will bring an end-of-life conversation game, "Hello," to 50 communities across the United
States. The game has been found to stimulate substantive, enjoyable and meaningful
end-of-life discussions among participants. Further, over 70% of participants who played the
game went on to perform additional ACP behaviors.2-4 That body of research is limited,
however, by a primarily Caucasian or South Asian Indian demographic. It is well established
that African Americans have historically low rates of ACP completion when compared to
Caucasians and that they often receive overly aggressive and unwanted care at the
end-of-life.5,6 Thus, learning how best to engage the African American population in ACP
activities is critical. Thus, this research project aims to determine whether and to what
extent this priming activity yields similar results in African American communities. The
research team will conduct mixed methods research on the impact of the game on the
performance of subsequent ACP behavior as well as explore the broad needs of African American
communities with regards to ACP.

Fifteen of the 50 qualified locations who can demonstrate through a screening process the
ability attract a majority African American audience will be selected to participate in the
research aspect of the project which will involve: 1) pre-game questionnaires to assess
population characteristics and readiness to engage in ACP, 2) post- game questionnaires to
assess satisfaction about the conversation game and readiness to engage in ACP, 3) post-game
focus groups to further explore opinions about the game, the value of priming activities, and
the broad needs of the community for encouraging ACP, and 4) 3 month follow-up phone
interviews to assess ACP behaviors that have been performed and perceived impact of the
priming activity. Participants from the additional 35 sites can opt-in to participate in a 3
months follow-up phone call.

Upon completion of this project, this collaboration is expected to have reached up to 1000
African American individuals and 1,500 other underserved individuals and provided them with
an enjoyable and rich experience that facilitates communication about end-of-life issues. The
research data is expected to provide a significant contribution to the field by yielding
information about the needs of 15 African American communities as well as to yield data
related to the impact of the priming activity (the game) on ACP behaviors in this
traditionally underserved group.

Inclusion Criteria:

1. Are over the age of 18

2. Attend a community Game Day event hosted as part of the Hospice Foundation of America
community outreach "Hello Project"

Exclusion Criteria:

1. Do not speak English

2. Have significant difficulties with hearing or speaking difficulties by self-report

3. Do not provide informed consent