Ubuntu - I Am Because We Are (Doulas-AC)

Ubuntu - I Am Because We Are, Caring for Black Patients With Advanced Stage Cancer

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.

Study Overview

• Status: Completed
• Conditions: Metastatic Cancer
• Intervention / Treatment: Behavioral: Doula - Patient engagement

Detailed 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.

• Study Type: Interventional
• Enrollment (Actual): 15
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • Pennsylvania
    • Pittsburgh, Pennsylvania, United States, 15232
      • UPMC Hillman Cancer Center

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No

Description

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

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Doula-Patient engagement; 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.	Behavioral: Doula - Patient engagement; Ubuntu ambassador/Doula and Patient will decide on details of engagement. The components to be included will be: 1) emotional support, 2) practical assistance, 3) family support, and/or 4) legacy building projects as per study protocols. The nature and type of visits will be determined by the patient and doula.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in Integrated Palliative care Outcome Scale (IPOS)	IPOS (Integrated Palliative care Outcome Scale) is a measure of symptoms and concerns which matter to a patient and helps us provide the best care. IPOS forms to identify how we can best support the individual. There are 10 questions scored on a scale of 1-4, which assess a patient's symptoms and needs with regards to physical, social, psychological and spiritual. Higher scores indicate greater patient need for supportive care.	Baseline, 3 months and 6 months
Acceptability and feasibility of the Doula Program	Acceptability and feasibility of doula program will be assessed by the Evaluation of the UPP Program questionnaire, which is comprised of 7 questions that will be used to rate participant satisfaction with the Doula Program that employ a scale of 1 (not at all) to 10 (to a great degree). Higher overall scores indicate greater satisfaction with the program.	Up to 6 months

Collaborators and Investigators

• Sponsor: University of Pittsburgh
• Investigators: Principal Investigator: Margaret Quinn Rosenzweig, PhD, UPMC Hillman Cancer Center

Study record dates

Study Major Dates

• Study Start (Actual): March 13, 2022
• Primary Completion (Actual): July 2, 2025
• Study Completion (Actual): July 2, 2025

Study Registration Dates

• First Submitted: March 28, 2022
• First Submitted That Met QC Criteria: March 28, 2022
• First Posted (Actual): April 6, 2022

Study Record Updates

• Last Update Posted (Actual): July 23, 2025
• Last Update Submitted That Met QC Criteria: July 19, 2025
• Last Verified: July 1, 2025

More Information

Terms related to this study

• Keywords: doula
• Additional Relevant MeSH Terms: Pathologic Processes; Neoplasms; Neoplastic Processes; Neoplasm Metastasis
• Other Study ID Numbers: HCC 21-265

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No
• product manufactured in and exported from the U.S.: No