Resilience-Building Intervention 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, Heart transplant, others

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

Approved in 1 Jurisdiction This treatment is already approved in other countries

Compensation: Varies

Number of Visits: 1

36 Participants Needed

Trial Summary

Will I have to stop taking my current medications?

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 resilience-building intervention for Advance Care Planning?

Research shows that culturally adapting advance care planning (ACP) interventions can improve communication and engagement in diverse communities, such as American Indian, Alaska Native, Latino, and African-American populations. These studies highlight the importance of incorporating cultural values and addressing barriers to enhance the effectiveness of ACP interventions. ^{1 2 3 4 5}

Is the Resilience-Building Intervention for Advance Care Planning safe for humans?

The available research does not provide specific safety data for the Resilience-Building Intervention for Advance Care Planning, but similar culturally adapted psychosocial interventions have been reported as highly accepted by participants, suggesting they are generally well-received and likely safe. ^{6 7 8 9 10}

How is the Culturally Tailored Resilience-Building Intervention for Advance Care Planning different from other treatments?

This treatment is unique because it is specifically designed to incorporate cultural values and priorities into advance care planning, making it more relevant and effective for American Indian and Alaska Native communities, who traditionally use advance care planning less than the general population. ^{1 2 3 11 12}

What is the purpose of this trial?

Less than 15% of Chinese Americans complete advance directives. That is less than half of the 37% completion rate in the US general population. This disparity in the use of advance care planning between White Americans and Chinese Americans may extend to disparities in end-of-life care. To address such disparities in end-of-life care, we will develop and assess the acceptability of a culturally tailored resilience-building intervention to help Chinese Americans with cancer or heart disease and their family caregivers engage in advance care planning discussions.

Eligibility Criteria

This trial is for Chinese Americans over 18 with cancer or heart failure who have a family caregiver willing to join the study. Participants must be able to respond in English or Mandarin and have their diagnosis recorded in medical records.

Inclusion Criteria

I have a family member who takes care of me and is willing to join the study.

I am of non-Hispanic Asian descent.

My diagnosis of cancer or heart failure is officially recorded.

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention Development

Development of a culturally tailored resilience-building intervention for Chinese Americans with cancer or heart disease

Not specified

Usability Testing

Usability test of the resilience-building intervention prototype with 18 pairs of Chinese Americans and their family caregivers

Not specified

1 visit (in-person)

Follow-up

Participants are monitored for acceptability of the intervention immediately after usability testing

Immediate

Treatment Details

Interventions

• Culturally tailored resilience-building intervention

Trial Overview The study aims to develop and test a resilience-building intervention tailored for Chinese Americans, focusing on improving advance care planning discussions among patients with cancer or heart disease and their caregivers.

Participant Groups

Group I: Experimental Experimental Treatment 1 Intervention

Participants will evaluate the culturally-tailored resilience-building intervention prototype

Culturally tailored resilience-building intervention is already approved in United States for the following indications:

Approved in United States as Culturally Tailored Resilience-Building Intervention for:

• Advance Care Planning Discussions for Chinese Americans with Cancer or Heart Disease

Who Is Running the Clinical Trial?

University of Illinois at Chicago

Lead Sponsor

Trials

653

Recruited

1,574,000+

University of Chicago

Collaborator

Trials

1,086

Recruited

844,000+

Rush University Medical Center

Collaborator

Trials

448

Recruited

247,000+

National Institute on Minority Health and Health Disparities (NIMHD)

Collaborator

Trials

473

Recruited

1,374,000+

Findings from Research

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 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]

Care managers identified significant challenges in facilitating advance care planning (ACP) for ethnically diverse elders, including cultural taboos around discussing death and the perception that decision-making is often a family responsibility.

To improve ACP, care managers recommended building trust with elders, enhancing cultural sensitivity, involving families and community leaders, and providing practical support throughout the illness process.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Facilitating advance care planning with ethnically diverse groups of frail, low-income elders in the USA: perspectives of care managers on challenges and recommendations. Kwak, J., Ko, E., Kramer, BJ.[2021]

The COVID-19 pandemic highlighted racial inequities in end-of-life care, particularly affecting Black and Brown communities, prompting the development of a culturally responsive advance care planning (ACP) toolkit for African-American faith leaders.

A pilot study workshop revealed that cultural, generational, and spiritual beliefs significantly influence end-of-life decision-making, with distrust being a major concern; the toolkit aims to educate and empower these communities to advocate for their preferred healthcare experiences.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Let's Talk About ACP Pilot Study: A Culturally-Responsive Approach to Advance Care Planning Education in African-American Communities. Anderson, GT.[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 qualitative study involving 14 Latinx advanced cancer patients and 14 caregivers showed that 85.7% reported high acceptance of the CASA psychosocial intervention, indicating its relevance and potential effectiveness for this community.

Participants expressed a strong willingness to engage with the intervention's components, such as communication skills and finding meaning in life, and most supported the inclusion of family caregivers in therapy sessions.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Psychosocial Intervention Cultural Adaptation for Latinx Patients and Caregivers Coping with Advanced Cancer. Torres-Blasco, N., Costas-Muñiz, R., Rosario, L., et al.[2022]

The study successfully adapted the Voicing My CHOiCES (VMC) advance care planning tool for Australian adolescents and young adults (AYAs) with life-limiting illnesses, incorporating feedback from AYAs, healthcare professionals, and parents to enhance its cultural relevance.

Participants confirmed that changes to language, content, and format made the VMC tool more acceptable, highlighting the importance of tailoring advance care planning resources to fit different cultural contexts, even within similar Western societies.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool. Evans, HE., Jessop, S., Bedoya, SZ., et al.[2023]

A pilot study involving 24 interprofessional team members showed that a 2-stage educational program improved clinicians' perceived understanding and comfort in providing culturally sensitive end-of-life care for Latino, Russian, and Micronesian cultures, despite no significant changes in measured knowledge or attitudes.

The program highlighted that while the team's perceived cultural competence was at the 'acceptance' level, it did not significantly advance their actual intercultural development, suggesting that deeper maturity in cultural competence requires longer-term engagement and more rigorous study of educational methods.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Broadening cultural sensitivity at the end of life: an interprofessional education program incorporating critical reflection. Halm, MA., Evans, R., Wittenberg, A., et al.[2022]

A qualitative study involving 14 Latino patients with advanced cancer and their caregivers identified 13 key end-of-life topics that are crucial for developing culturally sensitive psychosocial interventions.

The most important topics included daily activities, psychosocial support, discussions about diagnosis, and financial difficulties, highlighting the need for tailored support for Latino individuals facing advanced cancer.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Important End-of-Life Topics among Latino Patients and Caregivers Coping with Advanced Cancer. Rosario-Ramos, L., Suarez, K., Peña-Vargas, C., et al.[2022]

The study aims to culturally adapt a psychosocial intervention called CASA for Latino families coping with advanced cancer, combining meaning-centered psychotherapy and couple communication skills training to improve quality of life and communication.

The research will gather feedback from 114 questionnaires and 15 semi-structured interviews with patients and caregivers to refine the CASA protocol, setting the stage for future proof-of-concept and pilot studies.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Cultural adaptation of meaning-centered psychotherapy for latino families: a protocol. Torres Blasco, N., Costas Muñiz, R., Zamore, C., et al.[2022]

The DöBra cards, a tool for advance care planning, were effectively disseminated in various community settings, significantly enhancing discussions about end-of-life issues and facilitating conversations among individuals and groups.

Participants reported that the cards served as valuable icebreakers for initiating difficult conversations about death, leading to personal growth and stronger relationships, which may ultimately improve end-of-life care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Dissemination, use, and impact of a community-based, conversational advance care planning intervention: ripple effects of the Swedish DöBra cards. Eneslätt, M., Helgesson, G., Tishelman, C.[2022]

A nurse-led facilitated advance care planning (ACP) intervention for patients with severe respiratory disease did not improve self-reported satisfaction, health-related quality of life, or 12-month mortality rates among the 149 participants studied.

However, the intervention was associated with fewer outpatient consultations and a reduced length of stay in acute hospital settings, suggesting a shift in healthcare utilization patterns during the final 90 days of life.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Impact of a Nurse-Led Advance Care Planning Intervention on Satisfaction, Health-Related Quality of Life, and Health Care Utilization Among Patients With Severe Respiratory Disease: A Randomized Patient-Preference Trial. Sinclair, C., Auret, KA., Evans, SF., et al.[2021]

References

1. 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]

2. 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]

3. England pubmed.ncbi.nlm.nih.gov

Facilitating advance care planning with ethnically diverse groups of frail, low-income elders in the USA: perspectives of care managers on challenges and recommendations. [2021]

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

Let's Talk About ACP Pilot Study: A Culturally-Responsive Approach to Advance Care Planning Education in African-American Communities. [2022]

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

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

6. Switzerland pubmed.ncbi.nlm.nih.gov

Psychosocial Intervention Cultural Adaptation for Latinx Patients and Caregivers Coping with Advanced Cancer. [2022]

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

Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool. [2023]

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

Broadening cultural sensitivity at the end of life: an interprofessional education program incorporating critical reflection. [2022]

9. Switzerland pubmed.ncbi.nlm.nih.gov

Important End-of-Life Topics among Latino Patients and Caregivers Coping with Advanced Cancer. [2022]

10. England pubmed.ncbi.nlm.nih.gov

Cultural adaptation of meaning-centered psychotherapy for latino families: a protocol. [2022]

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

Dissemination, use, and impact of a community-based, conversational advance care planning intervention: ripple effects of the Swedish DöBra cards. [2022]

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

Impact of a Nurse-Led Advance Care Planning Intervention on Satisfaction, Health-Related Quality of Life, and Health Care Utilization Among Patients With Severe Respiratory Disease: A Randomized Patient-Preference Trial. [2021]