A new scoping review from the University of Toronto reveals that caregivers of loved ones with ovarian cancer face significant emotional strain, heavy caregiving responsibilities, and limited support throughout the disease trajectory. The scoping review, published in PLOS One this week, analyzed 32 studies spanning 25 years and identified consistent challenges experienced by caregivers before, during, and after their loved one's illness.
The researchers found high levels of anxiety, depression, grief, and burnout, alongside practical barriers such as financial hardship, limited communication with healthcare providers, and a lack of respite services.
"Caregivers shoulder immense emotional and physical demands, yet they remain largely overlooked in health‑care conversations," says co-author Gabrielle C. Smith, a recent MSW graduate of the Factor‑Inwentash Faculty of Social Work (FIFSW) at the University of Toronto. "Better caregiver support is not optional, it is essential for high-quality patient care."
Emotional and psychological strain
Many caregivers reported clinically significant levels of anxiety and depression, especially during end-of-life caregiving. They also described ongoing fear, uncertainty, and profound grief following the loss of their loved one.
"The psychological toll is substantial. Caregivers suffer not just momentary stress, but long-term emotional hardship that affects every part of life," says co-author Matthew R. Langiano, a recent MSW graduate of University of Toronto's FIFSW. "Caregivers need structured supports such as counseling, information resources, and peer connection to lessen this burden."
Challenges navigating a complex healthcare journey
The review found that caregivers often felt excluded from discussions with medical teams, leaving them unsure how to manage symptoms or prepare for changing care needs. Many struggled to advocate for their loved one while also coping with their own distress.
"Caregivers frequently assume responsibilities far beyond what anyone expects, coordinating treatments, interpreting medical information, and making urgent decisions, yet they are rarely given the guidance they need," says co-author Junhee Baek, a recent MSW graduate of University of Toronto's FIFSW. "Improving communication between healthcare providers and caregivers could significantly improve both caregiver wellbeing and patient care."
Social isolation, financial strain, and loss of personal wellbeing
Time pressures and caregiving duties often reduced caregivers' ability to maintain family roles, employment, friendships, and self‑care routines.
"Caregivers are the backbone of cancer care, yet the enormous sacrifices they make—financially, emotionally, and socially—are rarely acknowledged at the policy level," says senior author Professor Esme Fuller Thomson, Director of the Institute for Life Course & Aging, FIFSW, University of Toronto. "We hope this review inspires healthcare leaders to develop more family centered systems that support caregivers as essential partners in care."
Coping strategies and the path forward
Caregivers frequently relied on spirituality, peer support, online communities, and family networks to cope, but these resources often fell short of addressing the intense demands of caregiving.
The authors call for the development of tailored interventions, including mental health supports, respite services, and improved caregiver inclusion in medical decision-making. They also emphasize the need for more research in underrepresented populations, including diverse families and caregivers in low- and middle-income countries.
