60 Participants Needed

Needs Navigation for Caregivers of Young Adults with Cancer

(Cope-CAYAC Trial)

RK
MB
Overseen ByMelissa Beauchemin, PhD, MSN,CPNP-PC, CPO
Age: < 65
Sex: Any
Trial Phase: Academic
Sponsor: Columbia University
No Placebo GroupAll trial participants will receive the active study treatment (no placebo)

Trial Summary

What is the purpose of this trial?

The overall aim of the study is to address unmet health-related social needs and reduce outcome disparities among AYA (adolescent and young adult) cancer survivors. Aim 1 aimed to refine a needs navigation model in partnership with expert consultants. Aim 2 and 3 will involve the deployment and pilot testing of the adapted needs navigation intervention among caregivers of younger AYAs with cancer.

Will I have to stop taking my current medications?

The trial information does not specify whether participants need to stop taking their current medications.

What data supports the effectiveness of the Needs navigation intervention treatment for caregivers of young adults with cancer?

Research on caregiver navigation interventions, like the one developed for caregivers of brain tumor patients, suggests that these programs can be helpful and satisfying for participants. Additionally, patient navigation programs have been shown to address emotional, practical, and family concerns, which are important for supporting caregivers.12345

Is the Needs Navigation intervention safe for caregivers of young adults with cancer?

The Needs Navigation intervention, which includes training caregiver navigators, has been implemented in various settings and has shown positive feedback from participants, suggesting it is generally safe. Participants in similar interventions have reported satisfaction and found the support helpful, with no significant safety concerns noted.12467

How is the Needs Navigation treatment different from other treatments for caregivers of young adults with cancer?

The Needs Navigation treatment is unique because it focuses on supporting caregivers by using a caregiver navigator to help them identify and use social support resources through a web-based tool, eSNAP. This approach is different from other treatments as it specifically targets the caregivers' needs, rather than the patients', and provides structured support to improve their psychological and physical health outcomes.12489

Eligibility Criteria

This trial is for caregivers of adolescent and young adult (AYA) cancer survivors. It's designed to help them manage unmet health-related social needs. Specific eligibility details are not provided, but typically participants must be directly involved in the care of an AYA with cancer.

Inclusion Criteria

I am the caregiver or financially responsible for a young person with cancer.
I am aged 15-26, speak English or Spanish, and am within 1 year post-treatment without cancer returning.

Exclusion Criteria

Unable to complete financial survey questions or contraindicated (as outlined in Protection of Human Subjects)
Dyad with younger AYAs who are enrolled on hospice or receiving other end-of-life care
Dyad with caregiver or younger AYA that previously participated in study AAAU2405

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Needs Navigation Intervention

Participants receive connection to community partners with financial education and resources, and a vocational navigation and support consultation for caregivers

6 months
Regular consultations with community partners

Follow-up

Participants are monitored for financial wellness and intervention effectiveness after the intervention

4 weeks

Treatment Details

Interventions

  • Needs navigation intervention
Trial Overview The study is testing a 'needs navigation intervention' which aims to support caregivers by addressing their specific challenges and reducing disparities in outcomes for AYAs with cancer. The intervention has been developed with experts and will now be tested in a real-world setting.
Participant Groups
1Treatment groups
Experimental Treatment
Group I: Needs Navigation InterventionExperimental Treatment1 Intervention
Individuals who screen positive will all move forward to receive this intervention. This includes connection to community partners with financial education and easily accessible resources, and a vocational navigation and support consultation for caregivers for 6-months.

Find a Clinic Near You

Who Is Running the Clinical Trial?

Columbia University

Lead Sponsor

Trials
1,529
Recruited
2,832,000+

Findings from Research

A new support intervention for caregivers of brain tumor patients was developed, utilizing a caregiver navigator to help them access social support and formal services, which is crucial given the unmet needs of these caregivers.
Preliminary data from the first 15 participants indicate high satisfaction and perceived helpfulness of the intervention, suggesting that caregiver navigation could be an effective model for future support programs in neuro-oncology.
Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization.Reblin, M., Wells, KJ., Otto, A., et al.[2022]
There is a significant lack of focused research on the service needs of parent caregivers for adolescents and young adults (AYA) with incurable cancer, as only eight studies were identified that addressed this issue, highlighting a gap in understanding and support.
The scoping review indicates that while healthcare professionals recognize the importance of parental involvement in care, there is insufficient evidence to inform the specific services and support needed for these caregivers, suggesting a critical area for future research.
Service Needs of Parent Caregivers of Adolescents and Young Adults with Incurable Cancer: A Scoping Review.Berger, I., Krishnasamy, M., Thompson, K., et al.[2023]
A qualitative study involving 36 medically underserved cancer patients identified four key needs for effective patient navigation (PN) programs: improving access to quality care, addressing emotional and practical concerns, considering family issues, and supporting patients throughout their entire cancer journey from diagnosis to long-term survivorship.
Oncology social workers are positioned to play a crucial role in patient navigation, advocating for the inclusion of trained professionals to ensure that the specific needs of underserved cancer patients and their families are met.
Social workers as patient navigators for breast cancer survivors: what do African-American medically underserved women think of this idea?Davis, C., Darby, K., Likes, W., et al.[2022]

References

Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization. [2022]
Service Needs of Parent Caregivers of Adolescents and Young Adults with Incurable Cancer: A Scoping Review. [2023]
Social workers as patient navigators for breast cancer survivors: what do African-American medically underserved women think of this idea? [2022]
Training cancer caregiver navigators: experiences from implementing the eSNAP and caregiver navigator intervention. [2022]
Virtual navigation in colorectal cancer and melanoma: an exploration of patients' views. [2021]
Una Mano Amiga: Pilot Test of a Patient Navigator Program for Southwest New Mexico. [2020]
Evaluating a professional patient navigation intervention in a supportive care setting. [2021]
Unmet needs, anxiety, depression, and quality of life among caregivers of adolescents and young adults with cancer: A cross-sectional study. [2022]
A Midwest Stakeholder Evaluation of an Adolescent and Young Adult Cancer Survivor Needs Assessment Survey. [2023]
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