Ubuntu - I Am Because We Are

University of Pittsburgh

Status: Completed

Conditions: Metastatic Cancer

Treatments: Behavioral: Doula - Patient engagement

Study type: Interventional

Funder types: Other

Identifiers

NCT05314179

HCC 21-265

Details and patient eligibility

About

The program will provide Advocacy and Support for Black patients with advanced-stage cancer in the Pittsburgh area. The goals are to: 1) provide a community-based, trained companion to journey alongside the patient with advanced cancer, 2) to help the individual explore meaning and create legacy, 3); offer support and navigation for practical needs of illness (e.g., financial assistance for food and housing, accessing and affording medications, transportation); and 4) to provide support and connection for the bereaved family/friends, including facilitating community connections for routine health screenings and access to mental health services, as needed.

Full description

Across almost all types of cancer, Black patients experience shorter survival and disproportionate burdens of isolation, pain, financial toxicity, and symptom distress at the end of life. The importance of palliative care in providing patient-centered treatment plans that alleviate symptom burden and provide goal-concordant care is well-established; however, Black patients have been historically reluctant to utilize traditional palliative care and hospice services despite efforts on the part of the largely white palliative care community to increase their utilization. This proposed program provides a non-medically focused program to assist Black patients living with advanced cancer. Black individuals are less likely to discuss their end-of-life (EOL) plans before death (1), engage in advanced care planning, use hospice (2), and are more likely to undergo intensive treatment in the last months of life (2-4), limiting the ability of the patient and family to receive an end of life support and create a legacy. Low-income black individuals have additional practical needs for food, housing, transportation, and medication assistance exacerbated by the advanced illness often overwhelming the traditional assistance capabilities of the medical model. There is a growing need for innovation to meet the EOL care needs of Black populations and communities requiring more culturally tailored support than traditionally available from the cancer care delivery system.

The goal is to provide

1. a community-based, peer, trained, paid companion to journey alongside the patient with advanced cancer, providing support, advocacy, and acknowledgment of the fear and trauma of living with a progressive, life-ending illness,
2. to help the individual recognize their unique legacy,
3. to assist surviving family members with mental and physical health promotion. The navigators/social workers or community advocates will identify individuals/patients who are eligible for the study. If the advocate is able to be at the clinic site at the time of the appointment, they will meet with the patient to say hello if the patient agrees. They will speak to the patient/family about the program. Patients will be asked if the ambassadors can call and make the connection.

Enrollment: 15 patients

Sex: Female

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

1. have stage IV cancer
2. identify as Black or African American 3. Participants must reside in or around Pittsburgh, Pennsylvania area

Exclusion criteria

1. Do not live in the Pittsburgh region

Trial design

Primary purpose: Supportive Care

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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15 participants in 1 patient group

Doula-Patient engagement

Experimental group

Description:

Four hours/week of Ubuntu ambassador/Doula and Patient engagement. The nature and type of visits will be determined by the patient and doula. The doula will formulate weekly reports for each assigned patient. Weekly progress reporting - Weeks 2- 24.

Treatment:

Behavioral: Doula - Patient engagement