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Intervening to Reduce Cancer Caregiver Stress

In This Article

  • Cancer caregivers are at high risk for mood disorders, sometimes even more than cancer patients themselves
  • Researchers at Mass General Cancer Center have developed and tested interventions to reduce anxiety and depressive symptoms among caregivers in multiple cancer types
  • The program teaches evidence-based, practical ways to cope with cancer caregiver stress
  • Interventions have improved caregivers' ability to cope with stress, their self-efficacy in the caregiver role, and quality of life, as well as reduced caregiving burden, anxiety, and depressive symptoms

An intervention with a customized combination of individual therapy sessions with cognitive and behavioral strategies developed at Mass General Cancer Center reduces anxiety and depressive symptoms in caregivers of people with cancer. Caregivers further reported improved ability to cope with stress and self-efficacy in the caregiver role.

"We prioritize the needs of the patients, but we cannot forget that there are 'invisible patients' in the room who might need support," says Jamie M. Jacobs, PhD, program director of the Center for Psychiatric Oncology and Behavioral Sciences and director of caregiving research in the Cancer Outcomes Research and Education Program. "Caregivers are a part of making sure patients get to their appointments and take their medications on time. Support of a caregiver could be instrumental to the management of a patient's disease and adherence to treatments. This is another way to ensure the best clinical outcomes for patients."

Cancer Caregiver Health Risks

The concept of caregiver burden originated in the field of Alzheimer's disease and other dementias, eventually extending to oncology. Dr. Jacobs says clinicians and researchers increasingly acknowledge that caregivers (family and friends caring for someone with cancer) are at risk for mood disorders such as depression and anxiety—sometimes even more than patients.

"Cancer care is increasingly delivered in the home setting, and as patients spend less time in the hospital, the family members and friends have become an ever more present and integral part of the care team. The responsibilities they incur come with little training, preparation, or knowledge about how to do very physical tasks related to cancer treatment and symptom management. This role can amount to a full-time job. Compounded by uncertainty about treatment and prognoses, financial hardship, and the stress of other work and caring for children or other dependents, the emotional burden of caregiving has become much more prominent," she notes.

Her research published in Annals of Behavioral Medicine demonstrated the interdependence of patient and caregiver mental health, and she adds that emotional distress can also affect caregivers' physical health. The effects of chronic stress on inflammation and immune function leave caregivers at risk for acute conditions such as upper respiratory tract infections, and more serious and chronic conditions such as heart disease, diabetes, sleep disturbance, and insomnia.

"Caregivers often prioritize care for the patient over their own care, neglect their own routine screening and primary care visits, and are more likely to end up in urgent care or the emergency room with health issues that went unchecked," adds Dr. Jacobs.

Offering Caregiver Care

To care for the caregiver, Dr. Jacobs and Areej El-Jawahri, MD, developed and piloted an intervention to address distress, quality of life, and caregiver burden for caregivers of patients with hematologic malignancies undergoing hematopoietic stem cell transplantation. The program was delivered to caregivers before, during, and after transplant.

The intervention consisted of eight individual therapy sessions (in person or virtual) inclusive of evidence-based components of cognitive behavioral therapy, mindfulness, and other stress-reduction techniques. Topics included:

  • Acceptance-based skills
  • Cognitive restructuring (how to think differently about stress)
  • How to cope with the specific stressors of caregiving
  • How to maximize the strength of the relationship and the bond between caregiver and patient
  • How to talk with one another about stress
  • Relaxation training and mindfulness
  • Self-care, such as sleep, physical activity, and diet
  • What to expect during the transplant process

"We were striving to understand whether caregivers could find the time to participate in a structured program like this. They're so busy and often overwhelmed—managing work, other responsibilities or dependents, financial stress, and taking over the roles of two people," explains Dr. Jacobs.

In a randomized controlled trial, the study demonstrated high feasibility and caregiver satisfaction with the intervention. Furthermore, caregivers who went through the program, compared to those randomly assigned to a usual care control group, "had lower anxiety, lower depressive symptoms, better quality of life, less caregiver burden, and were better able to cope with stress and feel efficacious and confident in their ability to be caregivers." Results of this study were published in Cancer in April 2020 and December 2020.

Expanding to Groups at Higher Risk for Caregiver Stress

Dr. Jacobs and colleagues have since adapted the model and expanded the intervention to other disease groups. The most recent effort is in caregivers of neuro-oncology patients with malignant brain tumors. "This is a cancer where rates of anxiety are particularly high: 25% to 30% of patients with malignant brain tumors report clinically significant anxiety," says Dr. Jacobs. A study by her colleague, Deborah Forst, MD, revealed that these caregivers reported clinically significant anxiety at a rate of 50% to 60%, about twice as high as the patients they are caring for.

Alongside principal investigator, Deborah Forst, MD, Dr. Jacobs adapted the caregiving intervention for caregivers in neuro-oncology and recently completed a randomized, controlled trial involving 120 of those caregivers, funded by the American Society of Clinical Oncology's Conquer Cancer Foundation. They found significant reductions in anxiety and depressive symptoms for caregivers who received the intervention, which was delivered virtually. The program also improved caregivers' ability to cope with stress and their self-efficacy for caregiving. The researchers submitted the results for a presentation at the 2023 American Society of Clinical Oncology Annual Meeting.

Next, Dr. Jacobs is adapting the intervention for young adult partners of patients aged 25 to 39, thanks to funding from the American Cancer Society and the Harvard Club of New York City Foundation and in collaboration with Giselle Perez, PhD. "For this study, we are particularly interested in how to enhance communication in young adult couples (patients and their caregivers) coping with cancer, enhance sexual health and intimacy, improve stress coping skills, and reduce distress," she says. "They are at much higher risk for distress during this pivotal developmental point in their lives—establishing financial independence, embarking on a career, potentially getting married, or trying to have children."

She is also collaborating with researchers at Memorial Sloan-Kettering Cancer Center on a study currently enrolling caregivers across cancer types and stages to compare two therapy programs.

Multidisciplinary Care for the Whole Patient

Dr. Jacobs sees her work as emblematic of Mass General's emphasis on multidisciplinary care for the whole patient. She hopes the resources will eventually be clinically available to all caregivers of patients treated at Mass General Cancer Center.

"Caring for the whole patient entails treatment, and it also involves the psychological and social aspects of managing the disease and symptoms, mental health, and the family. This is another way that we can optimize care for the patient—caring for their caregiver," says Dr. Jacobs. "Caregivers walk away from our programs with concrete ways that they can cope with stress and things that they can implement the next minute in their day-to-day lives. Not only do we see substantial improvements in their mood and quality of life after these therapy programs, but we hear directly from caregivers and patients how much they benefited from the program and how they want access to more opportunities for supportive care."

Learn more about the Cancer Outcomes Research and Education Program

Learn more about the Mass General Cancer Center


In a randomized, controlled trial conducted by the Mass General Cancer Center, a psychosocial intervention for caregivers of patients scheduled to undergo hematopoietic stem cell transplantation was feasible and showed promise for improving caregiving burden, quality of life, mood, self-efficacy and coping skills.


Areej El-Jawahri, MD, explains the Massachusetts General Hospital Cancer Outcomes Research and Education Program (CORE) and discusses the advances in palliative care at Mass General Cancer Center.