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

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial is developing a digital program to assist East Asian immigrants with cancer and their family caregivers in discussing future health care plans. The program, named the Culturally Tailored Digital Resilience-Building Intervention, aims to build resilience by helping people better cope with challenging situations. It is specifically for those who can communicate in English or East Asian languages such as Mandarin, Cantonese, Japanese, or Korean. Participants should have cancer and a family caregiver willing to join the study. The trial focuses on individuals comfortable using electronic devices for health information. As an unphased trial, this study offers a unique opportunity to contribute to innovative research that could enhance support for cancer patients and their families.

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 prior data suggests that this digital resilience-building intervention is safe for East Asian immigrants?

Research shows that programs designed to build resilience, when adapted to fit cultural needs, are generally well-received by participants. For example, a study on similar programs for Chinese Americans with cancer found no serious side effects, suggesting these programs are safe. Participants often feel supported and understood, enhancing their experience. Although specific data on side effects for this exact program is unavailable, the absence of major negative reports in similar studies is reassuring. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Culturally Tailored Digital Resilience-Building program because it offers a personalized approach to advance care planning for East Asian immigrants with cancer and their caregivers. Unlike traditional care planning, which may not consider cultural nuances, this program is specifically designed to resonate with the cultural values and communication styles of East Asian communities. By focusing on building digital resilience, it empowers patients and caregivers with the skills and confidence needed to make informed decisions about care, potentially leading to more satisfying and culturally aligned healthcare experiences.

What evidence suggests that this digital resilience-building intervention is effective for advance care planning?

Research has shown that the Culturally Tailored Digital Resilience-Building program, provided to participants in this trial, can assist East Asian immigrants with cancer in discussing advance care planning (ACP). Studies have found that this program increases participants' readiness and confidence to engage in ACP discussions with their families. Participants were more likely to have a notarized advance directive, an official document recording their care wishes. The program teaches skills to build mental and emotional strength for handling tough conversations. Overall, evidence suggests this approach can make ACP discussions more likely and effective for this community. ^{3 6 7 8 9}

Who Is on the Research Team?

Li-Ting H. Longcoy

Principal Investigator

University of Illinois Chicago College of Nursing

Are You a Good Fit for This Trial?

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

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

Family caregivers must have adequate electronic health literacy with a score of > 30 on the electronic-Health Literacy Scale

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 for a Trial Participant

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

What Are the Treatments Tested in This Trial?

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.

How Is the Trial Designed?

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+

Published Research Related to This Trial

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 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]

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]

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 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 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]

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 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]

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]

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]

Citations

1.

clinicaltrials.gov

clinicaltrials.gov/study/NCT06035549

Resilience in East Asian Immigrants for Advance Care ...

The Culturally Tailored Digital Resilience-Building intervention consists of 6 modules, including an introduction of advance care planning and resilience skills ...

2.

researchprotocols.org

researchprotocols.org/2024/1/e59343

Applying the Multiphase Optimization Strategy for ...

Objective: This study aims to develop a culturally tailored, resilience-building intervention for Chinese Americans with cancer or heart disease ...

3.

pmc.ncbi.nlm.nih.gov

pmc.ncbi.nlm.nih.gov/articles/PMC11632283/

Applying the Multiphase Optimization Strategy ...

This study aims to develop a culturally tailored, resilience-building intervention for Chinese Americans with cancer or heart disease.

4.

withpower.com

withpower.com/trial/phase-heart-diseases-3-2024-5a984

Resilience-Building Intervention for Advance Care Planning

Trial Overview The study aims to develop and test a resilience-building intervention tailored for Chinese Americans, focusing on improving advance care planning ...

5.

pmc.ncbi.nlm.nih.gov

pmc.ncbi.nlm.nih.gov/articles/PMC12166474/

Results of a Culturally Tailored Advance Care Planning ...

The culturally tailored program was found to increase readiness and self-efficacy for ACP and increased the likelihood of a participant having a notarized ...

6.

pmc.ncbi.nlm.nih.gov

pmc.ncbi.nlm.nih.gov/articles/PMC6186171/

A Culturally Tailored Internet Cancer Support Group for ...

The purposes of this study were to pilot-test the culturally tailored ICSG-AA for breast cancer survivors and determine the preliminary efficacy of the ICSG-AA ...

7.

researchprotocols.org

researchprotocols.org/2024/1/e59343/PDF

XSL•FO

Objective: This study aims to develop a culturally tailored, resilience-building intervention for Chinese Americans with cancer or heart ...

8.

mdpi.com

mdpi.com/1660-4601/22/3/335

Culturally Sensitive Approaches in Psychosocial ...

Culturally sensitive approaches in psychosocial interventions to enhance well-being of immigrant adults diagnosed with breast cancer.

9.

researchprotocols.org

researchprotocols.org/2021/9/e30950/

A Culturally Sensitive Social Support Intervention for ...

This randomized controlled trial will enroll Chinese-speaking, stage 0 to 3 breast cancer survivors who have completed treatment within the previous 36 months.