Advance Care Planning Clinical Trial
Official title:
Using an End-of-life Conversation Game to Engage Underserved Communities in Advance Care Planning
This national project will provide an effective, evidence-based intervention for advance care planning (ACP) to 50 underserved US communities, those with poor access to healthcare systems due to economic, cultural or other barriers. The project will also examine 15 of the 50 communities to learn about the unique needs of African American communities in regards to ACP and to assess the intervention with this population. The team includes the Hospice Foundation of America and a university-based research team from Penn State Milton S. Hershey Medical Center.
The project goal explores 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. This national project involves 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 to 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, realism 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. As the trial progressed, the time-frame for
follow-up phone interviews was extended to 3 - 9 months.
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.
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