Digital Resilience Program for Advance Care Planning

Overseen By Li-Ting H. Longcoy

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: University of Illinois at Chicago

Disqualifiers: Cognitive impairment, Completed advance directive, Born in US

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: Unknown

54 Participants Needed

Trial Summary

What is the purpose of this trial?

The purpose of the study is to develop a culturally tailored digital resilience-building intervention to help East Asian immigrants engage in advance care planning discussions with their family caregivers.

Do I need to stop my current medications for this trial?

The trial information does not specify whether you need to stop taking your current medications.

What data supports the effectiveness of the treatment Culturally Tailored Digital Resilience-Building Intervention?

Research shows that culturally tailored interventions, like those used in advance care planning, can effectively engage diverse populations by addressing cultural values and communication barriers. For example, studies have successfully adapted advance care planning programs for Latino, American Indian, and Alaska Native communities, improving engagement and satisfaction. ^{1 2 3 4 5}

Is the Digital Resilience Program for Advance Care Planning safe for humans?

The research articles provided do not contain specific safety data for the Digital Resilience Program for Advance Care Planning or its related interventions. They focus on the effectiveness and engagement of advance care planning programs, but do not report any safety concerns. ^{3 4 6 7 8}

What makes the Culturally Tailored Digital Resilience-Building treatment unique for advance care planning?

This treatment is unique because it is specifically designed to incorporate cultural values and priorities into advance care planning, making it more relevant and meaningful for underrepresented populations like American Indian and Alaska Native communities. It focuses on culturally appropriate communication and considers local barriers and facilitators, which is not typically addressed in standard treatments. ^{2 8 9 10 11}

Research Team

Li-Ting H. Longcoy

Principal Investigator

University of Illinois Chicago College of Nursing

Eligibility Criteria

This trial is for East Asian immigrants over 18 with a cancer diagnosis, who can communicate in English or certain East Asian languages. They must have a family caregiver to join the study and be comfortable using digital tools as shown by their health literacy score.

Inclusion Criteria

My caregiver is 18 years old or older.

Family caregivers must be able to read and respond to questions in English, Mandarin, Cantonese, Japanese, or Korean

I have identified someone as my family caregiver.

Exclusion Criteria

Patients must not have cognitive impairment per a Short Portable Mental Status Questionnaire with more than three errors

Patients must not have completed an advance directive

Patients must not be born in the US

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Interviews

Conduct semi-structured interviews with religious leaders to identify barriers and facilitators for ACP discussions

4-6 weeks

Intervention Development

Develop a culturally tailored digital resilience-building intervention using think-aloud interviews with East Asian immigrants and their family caregivers

8-12 weeks

Follow-up

Participants are monitored for usability and acceptability of the intervention

Immediately at the end of the think-aloud interview

Treatment Details

Interventions

• Culturally Tailored Digital Resilience-Building

Trial Overview The study is testing a digital program designed specifically for East Asian immigrants to help them talk about future healthcare plans with their caregivers. It aims to build resilience and make these discussions easier.

Participant Groups

Group I: Culturally Tailored Digital Resilience-Building Experimental Treatment 1 Intervention

The Culturally Tailored Resilience-Building intervention will be provided to East Asian immigrants with cancer and their family caregivers.

Who Is Running the Clinical Trial?

University of Illinois at Chicago

Lead Sponsor

Trials

653

Recruited

1,574,000+

Rockefeller University

Collaborator

Trials

162

Recruited

16,700+

Findings from Research

The Planning Your Advance Care Needs (PLAN) intervention was developed to help Latino patients with advanced cancer engage in advance care planning (ACP), and it received positive feedback for being helpful and easy to understand from 32 stakeholders, including patients, caregivers, and experts.

The intervention includes communication scripts to facilitate discussions about end-of-life care, and initial feedback suggests it may motivate patients to engage in ACP, indicating its potential effectiveness for this population.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Planning for Your Advance Care Needs (PLAN): A Communication Intervention to Improve Advance Care Planning among Latino Patients with Advanced Cancer. Shen, MJ., Cho, S., De Los Santos, C., et al.[2023]

Advance care planning (ACP) is crucial for American Indian and Alaska Native (AI/AN) communities, who face higher rates of serious illnesses but engage in ACP less than the general population.

Culturally adapting ACP interventions to include AI/AN values, preferred participants in discussions, and local barriers can enhance the effectiveness and relevance of these conversations, making them more meaningful for patients.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Culturally Adapting an Advance Care Planning Communication Intervention With American Indian and Alaska Native People in Primary Care. Lillie, KM., Dirks, LG., Curtis, JR., et al.[2022]

The PREPARE program, combined with an easy-to-read advance directive, significantly increased the documentation of advance care planning among 986 primary care patients aged 55 and older, compared to using an advance directive alone (43.0% vs 33.1%).

Patients using PREPARE reported higher engagement in advance care planning activities, with 98.1% indicating increased engagement compared to 89.5% in the control group, demonstrating the program's effectiveness in overcoming literacy and language barriers.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial. Sudore, RL., Schillinger, D., Katen, MT., et al.[2020]

A community-based advance care planning (ACP) initiative successfully engaged 1,034 participants, including a significant portion from ethnically diverse backgrounds, using bilingual patient navigators to facilitate discussions and provide resources in both English and Spanish.

The program demonstrated high satisfaction rates (98%) among participants, with many expressing readiness to complete advance directives and name decision makers, indicating the effectiveness of this model in improving ACP engagement in underserved rural populations.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Community-Based Conversations about Advance Care Planning for Underserved Populations Using Lay Patient Navigators. Fink, RM., Kline, DM., Bailey, FA., et al.[2021]

The advance care planning (ACP) intervention did not significantly improve the alignment of end-of-life (EoL) care with patients' wishes compared to usual care, as reported by family members three months after the patient's death.

Despite the ACP discussions being conducted with a mean length of 57 minutes, there were no notable differences in patient satisfaction, family satisfaction, or the quality of EoL care received between the ACP and usual care groups.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A randomised controlled trial of an advance care planning intervention for patients with incurable cancer. Johnson, SB., Butow, PN., Bell, ML., et al.[2020]

The I kua na'u intervention, which includes culturally tailored videos and educational sessions, aims to improve Advance Care Planning (ACP) knowledge and engagement among Native Hawaiians aged 55 and older, addressing their historically low rates of ACP and palliative care use.

The study will evaluate the effectiveness of this intervention through a randomized controlled trial and a pre-post study design involving 220 participants, focusing on outcomes such as ACP knowledge, preferences, and completion rates.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

I kua na'u "Let me carry out your last wishes" Clinical trial protocol to promote advance care planning among native Hawaiian populations. Quintiliani, LM., Kamaka, M., Henault, L., et al.[2023]

A study involving 371 evaluations from Nevada and Texas indicates that more people are using online resources for advance care planning, finding them easy to use and helpful for completing advance directives.

The use of technology, such as websites and mobile apps, is transforming how individuals prepare for end-of-life decisions, allowing them to store and retrieve their directives while facilitating important conversations about their medical care preferences.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

An evaluation of 2 online advance directive programs. Klugman, CM., Usatine, RP.[2018]

A new advance care planning (ACP) website designed for people with dementia and their family caregivers will be evaluated in a study involving 30 dyads over 8 weeks, focusing on its usage, usability, and impact on ACP readiness and knowledge.

This study is innovative in its approach to data collection, aiming to involve individuals with dementia without overwhelming them, and it will be the first to assess how a web-based tool can assist in ACP for this population.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Evaluating an advance care planning website for people with dementia and their caregivers: Protocol for a mixed method study. Dupont, C., Monnet, F., Pivodic, L., et al.[2023]

The Advance Directives-Live Action Simulation Training (AD-LAST) program significantly improved knowledge and self-efficacy in advance care planning (ACP) among 163 clinical staff members, as shown by pre-post intervention surveys conducted over multiple training sessions.

Participants reported high satisfaction with the training, particularly valuing the hands-on practice with standardized patient-actors, which helped them better understand cultural and spiritual influences on patient decision-making.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

AD-LAST! An interdisciplinary clinical workshop to improve cultural and spiritual awareness in advance care planning skills. Pan, CX., Spinelli, A., Litrivis, E., et al.[2023]

The adaptation of the Voicing My CHOiCES™ advance care planning guide for adolescents and young adults (AYAs) in Brazil and Australia involved extensive feedback from patients and healthcare providers, ensuring the tool is culturally appropriate and relevant.

In Australia, interviews with AYAs and their families led to significant recommendations for modifying the tool's content and presentation, emphasizing the importance of engaging young patients in end-of-life discussions to improve their decision-making and quality of life.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Considerations for the cross-cultural adaptation of an advance care planning guide for youth with cancer. de Arruda-Colli, MNF., Sansom-Daly, U., Dos Santos, MA., et al.[2022]

The study involved 18 Noongar community members from six rural communities in Western Australia, exploring their perceptions of advance care planning (ACP) through interviews and group discussions.

Key themes identified included the significance of cultural approaches to dying, the role of family and kin, and the need for appropriate communication, highlighting that culturally tailored engagement methods, including the involvement of Aboriginal health workers, are essential for effective ACP discussions.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A public health approach to promoting advance care planning to Aboriginal people in regional communities. Sinclair, C., Williams, G., Knight, A., et al.[2021]

References

1. Switzerland pubmed.ncbi.nlm.nih.gov

Planning for Your Advance Care Needs (PLAN): A Communication Intervention to Improve Advance Care Planning among Latino Patients with Advanced Cancer. [2023]

2. United States pubmed.ncbi.nlm.nih.gov

Culturally Adapting an Advance Care Planning Communication Intervention With American Indian and Alaska Native People in Primary Care. [2022]

3. United States pubmed.ncbi.nlm.nih.gov

Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial. [2020]

4. United States pubmed.ncbi.nlm.nih.gov

Community-Based Conversations about Advance Care Planning for Underserved Populations Using Lay Patient Navigators. [2021]

5. England pubmed.ncbi.nlm.nih.gov

A randomised controlled trial of an advance care planning intervention for patients with incurable cancer. [2020]

6. United States pubmed.ncbi.nlm.nih.gov

I kua na'u "Let me carry out your last wishes" Clinical trial protocol to promote advance care planning among native Hawaiian populations. [2023]

7. United States pubmed.ncbi.nlm.nih.gov

An evaluation of 2 online advance directive programs. [2018]

8. United States pubmed.ncbi.nlm.nih.gov

Evaluating an advance care planning website for people with dementia and their caregivers: Protocol for a mixed method study. [2023]

9. England pubmed.ncbi.nlm.nih.gov

AD-LAST! An interdisciplinary clinical workshop to improve cultural and spiritual awareness in advance care planning skills. [2023]

10. United States pubmed.ncbi.nlm.nih.gov

Considerations for the cross-cultural adaptation of an advance care planning guide for youth with cancer. [2022]

11. Australia pubmed.ncbi.nlm.nih.gov

A public health approach to promoting advance care planning to Aboriginal people in regional communities. [2021]