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Using an End-of-life Conversation Game to Engage Underserved Communities in Advance Care Planning
Studie Overzicht
Toestand
Interventie / Behandeling
Gedetailleerde beschrijving
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.
Studietype
Inschrijving (Werkelijk)
Fase
- Niet toepasbaar
Contacten en locaties
Studie Locaties
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Pennsylvania
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Hershey, Pennsylvania, Verenigde Staten, 17011
- Penn State Hershey College of Medicine
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Deelname Criteria
Geschiktheidscriteria
Leeftijden die in aanmerking komen voor studie
Accepteert gezonde vrijwilligers
Geslachten die in aanmerking komen voor studie
Beschrijving
Inclusion Criteria:
- Are over the age of 18
- Attend a community Game Day event hosted as part of the Hospice Foundation of America community outreach "Hello Project"
Exclusion Criteria:
- Do not speak English
- Have significant difficulties with hearing or speaking difficulties by self-report
- Do not provide informed consent
Studie plan
Hoe is de studie opgezet?
Ontwerpdetails
- Primair doel: Ander
- Toewijzing: NVT
- Interventioneel model: Opdracht voor een enkele groep
- Masker: Geen (open label)
Wapens en interventies
Deelnemersgroep / Arm |
Interventie / Behandeling |
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Experimenteel: Deelnemers aan het spel
Alle deelnemers zullen deelnemen aan het spelen van het gespreksspel rond het levenseinde, genaamd "Hallo", waarbij open vragen over medische besluitvorming en kwesties rond het levenseinde worden beantwoord.
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To play 'Hello', players are provided 32 open-ended questions in a prearranged order and an equal number of game chips.
A player reads aloud the first question.
Players then individually write down their answers, and take turns sharing answers with the group (players can opt to pass).
Players control how long they share, what they share, and when they are ready to proceed to the next question.
During the conversation, players may choose to acknowledge others for a particularly thoughtful, poignant, or even funny comment by giving them a chip.
A simple pre-game coin flip determines whether the player with the most chips 'wins' the game ('heads'), or the player with the least amount of chips wins the game ('tails').
Andere namen:
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Wat meet het onderzoek?
Primaire uitkomstmaten
Uitkomstmaat |
Maatregel Beschrijving |
Tijdsspanne |
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Rate of ACP Behaviors
Tijdsspanne: 9 months post intervention
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This phone questionnaire assesses whether participants went on to perform various behaviors related to advance care planning.
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9 months post intervention
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Secundaire uitkomstmaten
Uitkomstmaat |
Maatregel Beschrijving |
Tijdsspanne |
---|---|---|
Change in ACP Engagement Survey scores
Tijdsspanne: Baseline (Day 0); immediately post-intervention (Day 0); 3-9 months post intervention
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This validated questionnaire measure assesses engagement in various ACP behaviors and/or readiness to perform ACP behaviors.
Items are scored on a 5 point Likert scale (1-5, with 5 indicating highest readiness to perform ACP).
Items are averaged for a final score ranging 1-5.
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Baseline (Day 0); immediately post-intervention (Day 0); 3-9 months post intervention
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Conversation satisfaction questionnaire
Tijdsspanne: Immediately post-intervention (Day 0)
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Measures participants' satisfaction with the conversation.
There are 5 items in the measure, each item is scored on a 1-7 scale with 1 being lowest conversation satisfaction.
The items are averaged for the final score ranging 1-7 with 7 indicating the highest conversation satisfaction.
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Immediately post-intervention (Day 0)
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ACP Values/Beliefs Questionnaire
Tijdsspanne: immediately post-intervention (Day 0)
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Measure participants' attitudes about ACP.
This a 8-item questionnaire.
Scores are calculated by summative responses and the total score ranges from 7-49 with 7 being the least amount of skepticism (a better outcome).
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immediately post-intervention (Day 0)
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Conversation Realism Questionnaire
Tijdsspanne: immediately post-intervention (Day 0)
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The Conversation Realism survey is an 8-item questionnaire that measures how realistic players felt the game conversation was.
Each question is measured with a 7- point Likert scale, with "1" being the least realistic and "7" being the most realistic (better outcome) conversation.
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immediately post-intervention (Day 0)
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Net Promoter Score
Tijdsspanne: immediately post-intervention (0)
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The Net Promoter Score is a widely single-question (How likely are you to recommend Hello to friends and family?) used to measure participants' game experience on a 10-point scale.
It is measured in two ways: (1) raw score is measured on a 10-point scale with 0 being "not likely at all" to 10 (better outcome) being "extremely likely" (2) calculated score = 10-point scale is broken down as follows: detractor score (0-6); passive score (7-8); promoter score (9-10).
Passive scores are ignored.
The calculated score is: (total number of promoters) - (total number of detractors) / (total number of responses) = score ranging from - 100 to +100 with +100 being the best (better outcome).
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immediately post-intervention (0)
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Hello Game Assessment - Qualitative focus group interview
Tijdsspanne: immediately post-intervention (Day 0)
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Group discussions held to collect feedback and opinions about playing the conversation game.
Data collected is qualitative.
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immediately post-intervention (Day 0)
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ACP Needs Assessment - Qualitative focus group interview
Tijdsspanne: immediately post-intervention (Day 0)
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Qualitative focus groups will explore the needs of diverse African American populations with regards to ACP and end-of-life planning
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immediately post-intervention (Day 0)
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Medewerkers en onderzoekers
Sponsor
Onderzoekers
- Hoofdonderzoeker: Lauren J Van Scoy, Penn State College of Medicine
Publicaties en nuttige links
Studie record data
Bestudeer belangrijke data
Studie start (Werkelijk)
Primaire voltooiing (Werkelijk)
Studie voltooiing (Werkelijk)
Studieregistratiedata
Eerst ingediend
Eerst ingediend dat voldeed aan de QC-criteria
Eerst geplaatst (Werkelijk)
Updates van studierecords
Laatste update geplaatst (Werkelijk)
Laatste update ingediend die voldeed aan QC-criteria
Laatst geverifieerd
Meer informatie
Termen gerelateerd aan deze studie
Aanvullende relevante MeSH-voorwaarden
Andere studie-ID-nummers
- Study00009009
Plan Individuele Deelnemersgegevens (IPD)
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Beschrijving IPD-plan
Informatie over medicijnen en apparaten, studiedocumenten
Bestudeert een door de Amerikaanse FDA gereguleerd geneesmiddel
Bestudeert een door de Amerikaanse FDA gereguleerd apparaatproduct
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