Explore the Caregiving Research Program

Overview

Who is a Caregiver?

If you are helping a friend or a relative who is coping with cancer, we consider you a caregiver. Caregivers may provide a range of support from setting up appointments to offering words of encouragement. In a caregiving role, people may help a friend or family member to make decisions about treatment, keep track of medications, or manage insurance and paperwork. They may help with meal preparation, cleaning, running errands, or babysitting. Caregivers can also be source of emotional support by just being there to listen and reflect with the person they are caring for.

Cancer Caregiving

At Mass General Cancer Center, we view family and friend caregivers as an essential part of the cancer care team. Caring for someone with cancer during or after treatment can be both rewarding and stressful. Even though caring for others can be immensely satisfying, we understand that people may also take on enormous roles as a caregivers, while often having their own responsibilities to tend to in their work and home life. People providing this support may become overwhelmed by the stress of caregiving, and often do not have time, energy, or resources to manage their own emotions and health.

Caregiver workbook cover image
Workbook provided to caregivers as part of the
NeuroCare research study.

Our Mission

The Caregiving Research Program seeks to address the emotional and physical toll of cancer caregiving by studying ways to support the family and friend caregivers of patients at Mass General Cancer Center.

Caregiving Research

The Caregiving Research Program brings together clinical researchers from psychology, psychiatry, oncology, palliative care, social work, and nursing who are passionate about supporting the network of people surrounding someone with cancer. We aim to:

  • Understand the distress felt by family members and friends caring for someone with cancer, and how this affects emotional wellbeing and physical health of both the caregiver and patient.
  • Develop programs to improve quality of life, reduce distress, and enhance coping for caregivers, and examine how much these programs help.
  • Integrate successful programs into clinical care and increase access to these opportunities for people who may not seek help.

Current Research Opportunity

Coping with Caregiving research study flyer
Coping with Caregiving research study flyer.

Researchers at the Mass General Cancer Center are studying how to best support family and friends caring for people with cancer who are treated at Mass General. Caregivers and the people with cancer they care for may be eligible to participate. Caregivers in the study will have 8 free, virtual, private sessions with a counselor.

To learn more, contact the study coordinator, Kate Morgan, at caregivingresearch@mgh.harvard.edu or 857-600-0315.

View study flyer

View All Research Projects

We have several completed and ongoing research projects that you may be eligible to participate in. By participating in these studies, you will contribute to the science that aims to improve the caregiving experience and reduce stress and burden for caregivers.

A Randomized Controlled Trial of Emotion Regulation Therapy for Cancer Caregivers: A Mechanism-Targeted Approach to Addressing Caregiver Distress (Coping with Caregiving)

Principal Investigator: Jamie Jacobs, PhD (Mass General Site PI); Allison Applebaum, PhD and Douglas Mennin, PhD (Co-PIs)
Description: Coping with Caregiving is a multi-center randomized controlled trial that aims to compare Emotion Regulation Therapy for Cancer Caregivers (ERT-C) and Cognitive Behavioral Therapy for Cancer Caregivers (CBT-C). The study examines whether 8 sessions of ERT-C or CBT-C is more effective in reducing caregiver distress and improving quality of life of caregivers and patients.

NeuroCARE: A Psychological Intervention for Caregivers of Patients with Malignant Gliomas (RCT)

Principal Investigator: Deborah Forst, MD
Funding Source: Conquer Cancer, The ASCO Foundation
Description: NeuroCARE is a single-site randomized controlled trial assessing the efficacy of a caregiver-directed intervention designed to improve anxiety in caregivers of patients with malignant gliomas, in comparison with caregivers who receive usual care. This supportive videoconference-based psychosocial intervention aims to reduce psychological distress and anxiety and improve caregivers’ quality of life through coping strategies and mindfulness exercises.

Randomized Trial of a Psychological Intervention to Promote Coping for Caregivers of Patients Undergoing Hematopoietic Stem Cell Transplantation (BMT-CARE)

Principal Investigator: Areej El-Jawahri, MD
BMT-CARE is a randomized controlled trial that examined the feasibility and preliminary efficacy of a six-session psychosocial intervention for caregivers of patients scheduled to undergo allogenic or autologous hematopoietic stem cell transplantation.

Quality of Life and Psychological Distress in Patients with Multiple Myeloma and their Caregivers (MM QOL)

Principle Investigator: Elizabeth K. O’Donnell, MD
Funding Source: Kully Family Foundation
Description: MM QOL is a multi-center study that aims to assess changes in quality of life, psychological distress, and prognostic understanding among multiple myeloma patients receiving treatment as well as their caregivers. Previous research has found that multiple myeloma patients have lower health-related quality of life compared to other cancer survivors. This study examines the emotional and physical effects of a multiple myeloma diagnosis and associated therapies among 180 patients and 180 caregivers. The principal investigator for this study is Dr. Elizabeth K. O’Donnell, with Dr. Areej El-Jawahri serving as a sub-investigator at Massachusetts General Hospital. Dr. Omar Nadeem is the site principal investigator at Dana-Farber Cancer Institute.

Proactive Psychiatry Consultation and Case Management for Patients with Cancer (BRIDGE)

Principal Investigator: Kelly Irwin, MD
Funding Source: National Cancer Institute
Description: The BRIDGE Trial: Proactive Psychiatry Consultation and Case Management for Patients with Cancer is a randomized controlled trial assessing the impact of proactive psychiatry consultation and person-centered collaborative case management for patients who have both a serious mental illness and a recent cancer diagnosis. The trial examines the impact of proactive psychiatric consultations and social work consultations on cancer care, as well as on patient and caregiver-reported outcomes. BRIDGE also aims to determine and address barriers and facilitators to implementing and disseminating a proactive psychiatry and social work intervention. To learn more, please email the study contact, Maura Barry.

Clinical Trials page

Improving Patient and Caregiver Understanding of Risks and Benefits of Immunotherapy for Lung Cancer or Melanoma (UPLIFT)

Principle Investigator: Laura Petrillo, MD
Funding Source: Conquer Cancer, The ASCO Foundation
Description: UPLIFT is a randomized controlled trial of an educational intervention to improve patient and caregiver understanding of what to expect from treatment with an immune checkpoint inhibitor for lung cancer or melanoma. This study assesses the feasibility and preliminary efficacy of the educational intervention in improving patient and caregiver knowledge, enhancing patient-clinician communication, and reducing anxiety.

A Study of Patient and Caregiver Understanding of Cancer Immunotherapy Risks, Benefits, and Goals (IO)

Principal Investigator: Laura Petrillo, MD
Funding Source: N/A
Description: IO is a mixed methods study to elucidate how patients with metastatic melanoma or non-small cell lung cancer (NSCLC), their caregivers, and oncology clinicians currently communicate about the risks, benefits, and goals of treatment with immunotherapy, and understand what makes such communication challenging from the perspective of patients, caregivers, and oncology clinicians. Immunotherapy, specifically a class of drugs called immune checkpoint inhibitors, has demonstrated impressive survival benefits in both of these diseases for a minority of patients who receive them. However, the range of possible outcomes with immunotherapy makes understanding the goal of treatment difficult for patients, especially given the potential for indefinite, long-term responses. This study will inform the development of a supportive care intervention tailored to patients with metastatic melanoma or NSCLC and their caregivers.

Exploring Clinician, Patient, and Caregiver Perceptions of Factors Relevant for Discharge Decision-Making (TRANSITIONS)

Principal Investigator: Areej El-Jawahri, MD
Funding Source: Internal Funding
Description: TRANSITIONS is a 45-participant qualitative study that addresses a gap in the literature about discharge decision-making and posthospital transitions of care among older adults with advanced cancer. The goal of the study is to identify components of the discharge decision-making process for patients hospitalized with advanced cancer in order to inform future interventions to improve their quality of end-of-life care and reduce burdensome transitions of care at the end-of-life. We aim to 1) explore clinicians’ perceptions of the factors relevant to making discharge decisions for hospitalized patients with advanced cancer, 2) explore patients’ and caregivers’ perceptions of the factors relevant to making discharge decisions; and 3) assess patients’ and caregivers’ perceptions of post-discharge care after hospitalization.

A Longitudinal Study of Quality of Life and Psychological Distress in Patients Receiving CAR T Therapy and their Caregivers (CAR-T PRO)

Principal Investigator: Areej El-Jawahri, MD
Funding Source: Leukemia and Lymphoma Society
Description: CAR-T PRO is a Longitudinal Study of Quality of Life and Psychological Distress in Patients Receiving CAR T Therapy and Their Caregivers. This study examines the experience of CAR-T therapy on patients along with their prognostic understanding with receiving their CAR-T therapy. Since this is a new type of cancer therapy, our goal is to better understand this experience so that we may better assist them and their caregivers through this process in the future. This study also involves a neurocognitive assessment to better understand the potential cognitive effects of CAR-T over the course of their treatment. We have an accrual goal of 100 patients.

Comparative Effectiveness of Early Integrated Telehealth versus In-Person Palliative Care for Patients with Advanced Lung Cancer (REACH PC)

Principal Investigators: Jennifer Temel, MD and Joseph Greer, PhD
Funding Source: Patient-Centered Outcomes Research Institute
Description: REACH PC is a multisite study of 1250 patients that compares the effectiveness of early integrated palliative care versus in-person palliative care for patients with advanced lung cancer. Early and longitudinal involvement of palliative care in the outpatient management of patients with advanced cancer has been shown to improve patient-reported and end-of-life care outcomes. Many cancer care settings, however, have insufficient outpatient palliative care services and patients who receive care in remote, resource-poor, and rural settings may have no access to these services. By using secure video-conferencing technology, it is possible to overcome these barriers and increase patients' access to palliative care services in a patient-centered manner. The primary goal of this study is to determine if telehealth palliative care is just as effective as in-person palliative care for improving quality of life, mood, symptoms, and satisfaction with care for patients with advanced lung cancer and their caregivers.


Resources for Caregivers

Communicating as a Caregiver

Communicating as a Caregiver

These tips can help you openly communicate with the people in your life.

Taking Care of Yourself as a Caregiver

Taking Care of Yourself as a Caregiver

These tips can help you care for yourself as you support your loved one.

Caregiving Video

Caregiving Video

Caring for Yourself While Caring for Someone with Cancer video.

Supportive Care

Supportive Care

We offer a variety of education and support resources to help patients & families.


Videos