Project Talk Trial: Engaging Underserved Communities in End-of-life Conversations
Project Talk Trial: Engaging Underserved Communities in End-of-life Conversations: a Cluster, Randomized Controlled Trial
Milton S. Hershey Medical Center
1,500 participants
Mar 19, 2022
INTERVENTIONAL
Conditions
Summary
Compared to the general population, individuals from underserved communities are more likely to receive low quality end-of-life care and unwanted, costly and burdensome treatments due in part to a lack of advance care planning (ACP; the process of discussing wishes for end-of-life care with loved ones/clinicians and documenting them in advance directives). This study will use existing, trusted, and respected social networks to evaluate two conversation-based tools intended to engage underserved individuals in discussions about end-of-life issue and motivate them to carry out ACP behaviors. Through this study, investigators will learn how best to engage underserved populations in ACP so as to: 1) increase the likelihood that patients from underserved communities will receive high-quality end-of-life care; 2) address health disparities related to end-of-life treatments; and 3) reduce unnecessary suffering for patients and their families.
Eligibility
Inclusion Criteria11
- Ability to recruit 20 individuals from underserved populations to attend a community event
- Experience hosting a community event
- Experience working with underserved populations
- Participation in a series of mandatory live study-related web-based trainings
- Completes a research site agreement
- Research Participants
- Adults over the age of 18 years old in underserved populations
- Able to speak and read English and/or Spanish
- Have not completed an AD within the previous 5 years
- All participants regardless of health status
- Individuals from the same household can enroll
Exclusion Criteria13
- Inability to recruit 20 individuals from underserved populations
- Inexperience for hosting a community event
- Inexperience working with underserved populations
- Unable to attend a series of mandatory live study-related web-based trainings
- Do not provide informed consent
- Do not complete a research site agreement
- Previously hosted a Hello project event
- Research Participants
- Anyone \<18 years of age
- Anyone not able to speak and read English and/or Spanish
- Have significant difficulties with hearing or speaking difficulties by self-report
- Completed an AD in the past 5 years
- Do not provide informed consent
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Interventions
Commercially available, 'Hello' 32 is a serious game that consists of 32 questions prompting players to share their values, goals, and beliefs about end-of-life issues. The creators developed the questions following interviews with palliative care clinicians, hospice nurses, and funeral directors, and then revised them through a series focus groups with \>100 patients/caregivers from diverse backgrounds.
The CP Starter Kit is one of the most widely promoted and disseminated ACP tools nationwide, is available for free online, and does not require a healthcare professional for use. Like 'Hello', it is intended to help individuals have end-of-life conversations with loved ones. The 11-page workbook has open- ended prompts to consider one's values and preferences for end-of-life care, who to talk with about one's wishes, and suggestions on how to do so. It also prompts participants to rank priorities on a 5-point scale (e.g., What are your concerns about treatment? 1= I'm worried I won't get enough care, 5= I'm worried I'll get overly aggressive care). The CP website provides resources for running a community event using the 'CP Starter Kit', including a 23-page manual, "Coaching the Conversation- A Guide to Facilitating Conversation Groups," with details on hosting a community-based program.
Table topics is a popular, commercially available conversation starter game that consists of question cards to prompt conversations (e.g., 'What do you love about your hometown?').
Locations(81)
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NCT04612738