If you’re the caregiver for a loved one with cancer, you know it involves more than just shuttling them to doctor’s appointments and taking on extra housework. It can also mean bearing witness to their fear and suffering, and experiencing your own intense feelings of anxiety, uncertainty, and helplessness.
“Caregivers remain largely overlooked in psychosocial oncology care, leaving many without the support they need,” says lead author Elizaveta Klekovkina, a researcher and social worker in the department of supportive care at Princess Margaret Cancer Center in Toronto.
Caregiver stress is not recognized very well, agrees Kevins Johns, MD, a clinical assistant professor and leader of the psychosocial oncology program at The Ohio State University in Columbus. Dr. Johns was not involved with the review.
“PTSD can be caused by witnessing a loved one experience a life-threatening event. Caregiving to someone with cancer can cause real distress and suffering,” he says.
What Is Post-Traumatic Stress Disorder?
- Repeatedly reliving the event, for example having flashbacks or intrusive thoughts
- Avoidance of things that remind someone of the traumatic event
- Hypervigilance, as a result of an overactive flight-or-flight response
- Negative mood changes, like chronic pessimism, depression, anxiety, self-blame, or shame
PTSD Higher in Caregivers With Lower Income, Less Social Support, and Mental Health Issues
To better understand traumatic stress symptoms among cancer caregivers, Klekovkina and her team searched through all the existing data on the topic and found 23 peer-reviewed articles published between 2005 and 2023.
Combined, the research included about 2,700 caregivers, with participants ranging in age from 42 to 64 years old. Most of the studies focused on caregivers who were spouses or partners, though other family members such as parents, adult children, and siblings were also included.
The majority of published studies are cross-sectional, with small sample sizes and a lack of racial and gender diversity. A cross-sectional study only captures information at a single point in time, and so can’t establish cause and effect or trends over time.
Key findings from the analysis included:
- Most studies showed that over 15 percent of people — or more than 1 in 8 — who care for loved ones with cancer develop PTSD.
- Caregivers with preexisting mental health conditions, lower social support, and higher caregiver burden were at greater risk of PTSD.
- Patient-related factors such as disease severity, symptom burden, and perceived likelihood of death also contributed to caregiver distress. Caregivers of patients with head and neck cancer or acute leukemia were among the most distressed, with up to 37 percent of them meeting PTSD criteria.
- The most frequently reported PTSD symptoms among caregivers included hypervigilance and intrusion — things like distressing thoughts, memories, dreams, and heightened responses to trauma cues.
- Avoidance, a typical symptom of PTSD, was not common among caregivers. That’s probably because this wasn’t considered an option, as caregivers had to remain actively involved in their loved one’s cancer care, says Klekovkina.
The review found that the timing of the assessment — whether caregivers were interviewed during active treatment, after diagnosis, or in survivorship — had a significant impact on how caregivers reported their symptoms.
There was higher distress in caregivers of patients in active treatment compared with cancer survivors, probably because caregiver burden and the perceived threat to their loved one was not as high, wrote the authors.
Fear, Uncertainty, and Feelings of Helplessness Contribute to PTSD Symptoms
Although the study wasn’t designed to uncover the “why,” it’s likely that traumatic stress in caregivers is linked to ongoing exposure to their loved one’s suffering, life-threatening illness, and uncertainty about the future, says Klekovkina.
“Caregivers often witness distressing medical procedures, severe symptoms, and physical decline, which can trigger a persistent stress response,” she says.
On top of that, the continuous emotional strain, loss of control, and feelings of helplessness contribute to PTSD symptoms. “The unpredictable nature of cancer, including fear of recurrence, worsening symptoms, or the patient’s death, further exacerbates traumatic stress,” says Klekovkina.
Caregiving Can Be a Full-Time Job
“Cancer caregivers are known to experience high levels of burden while caring for their loved one, so it’s been described as an intense caregiving experience that often equates to a full-time job,” says Chandylen Nightingale, PhD, an associate professor in social sciences and health policy at Wake Forest University School of Medicine in Winston-Salem, North Carolina, who was not involved in the review.
“Unfortunately, there’s little opportunity for caregivers to take care of their own mental and physical health,” she says
PTSD Is Linked to Anxiety, Depression, Burnout, and Suicide
Recognizing PTSD in caregivers is critical due to the profound implications for both their well-being and the quality of care they provide, says Klekovkina.
“PTSD can be associated with chronic anxiety, depression, burnout, and even cardiovascular issues, which compromise caregivers’ ability to provide support to their loved ones and take care of themselves,” she says.
Untreated traumatic stress, which includes PTSD and acute stress disorder, has been associated with an increased risk of suicidal thoughts and behaviors, says Klekovkina.
“We know from research that individuals with acute stress disorder have a tenfold higher risk of suicide compared to the general population. Addressing these mental health challenges is essential to prevent potential tragedies and to ensure that caregivers receive the support they need,” she says.
Mental Health Screening Is Essential for Caregivers
Given these numbers, there is an “urgent need” to identify and support caregivers who are struggling by implementing routine mental health screenings — especially at key points such as the patient’s diagnosis, recurrence, or treatment transitions, says Klekovkina.
These findings are really the tip of the iceberg, says Nightingale. “We need more rigorous research to understand the true prevalence of traumatic stress and predictors of traumatic stress in caregivers. Ideally, we’d like to identify modifiable factors that help mitigate these types of impacts on cancer caregivers,” she says.
Where Caregivers Can Get Help
A number of organizations have sprung up to connect cancer caregivers with mental health providers and peer support.
The Cancer Support Community (CSC), for instance, operates a helpline (888-793-9355) where caregivers can talk to a navigator for information and resources based on their unique needs, including local support programs and online communities.