Juggling two worlds: caregivers of leukemia patients struggle to balance care & daily life

Caregivers of individuals diagnosed with acute leukemia face a difficult balancing act: meeting the urgent demands of cancer care while managing their daily responsibilities. A new qualitative study highlights the profound toll of this dual role and underscores the need for caregiver support as an essential part of cancer care.

Conducted by researchers from the University of Toronto, the Princess Margaret Cancer Centre, and the Hospital for Sick Children, the study analyzed in-depth interviews with 21 caregivers of both children and adults diagnosed with acute leukemia. Participants described the challenges of “juggling” caregiving tasks with work, parenting, household duties, and their own well-being. The findings reveal not only widespread emotional and physical strain, but the remarkable resilience among caregivers navigating this complex reality.

“Caregivers described living in two worlds, one dominated by the cancer experience and another defined by everything else in their lives,” said Maya A. Stern, MPH, MSW, RSW, Psychotherapist at the Toronto Western Hospital, UHN, and recent graduate of the Factor-Inwentash Faculty of Social Work (FIFSW). “Our findings show that this constant negotiation can lead to emotional exhaustion, financial hardship, and a sense of guilt for not being able to ‘do it all.’”

Co-author Elizaveta Klekovkina, MSW, RSW, Social Worker in Research at the Department of Supportive Care, Princess Margaret Cancer Centre, UHN, and recent graduate of FIFSW, emphasized that the study gives voice to the lived realities of a group whose needs are often overlooked. “We found that caregivers frequently de-prioritize their own well-being in order to care for the patient,” Klekovkina said. “Recognizing caregivers as essential members of the healthcare team means acknowledging their vulnerability and offering structured, proactive support: emotional, practical, and financial.”

The study also found that while family, friends, and other caregivers often provided valuable emotional and practical support, these networks were rarely enough to meet the demands of leukemia care. Stephanie M. Nanos, a PhD Student at the Institute of Medical Science, University of Toronto and the Hospital for Sick Children, noted that “Social support can make a world of difference, but it must be complemented by formal systems of care. Friends and family may move forward with time, but the caregiver remains immersed in the cancer experience — and our systems must reflect that.”

Beyond documenting strain on caregivers, the study identified actionable recommendations. Caregivers suggested early access to psychosocial support, practical guidance about hospital and community resources, and financial aid programs to help offset lost income. Esme Fuller-Thomson, PhD, Professor at FIFSW and Director of the Institute for Life Course and Aging, University of Toronto, emphasized the broader policy implications. “Supporting caregivers is not just compassionate, it is a matter of public health. When caregivers are overwhelmed, patient outcomes also suffer.”

Senior author Carmine Malfitano, MSW, RSW, PhD, Director of Research and Education at the Centre for Psychology and Emotional Health and Clinical Social Work Specialist at Princess Margaret Cancer Centre, underscored the urgency of translating these insights into action. “Caregivers often become invisible within the healthcare system,” Malfitano said. “We need to integrate caregiver assessment and support as a standard part of cancer care, not as an optional add-on.”

The authors hope their findings will inform hospital programs and policymakers to better support those caring for family members with acute leukemia and other life-threatening illnesses. “By understanding what it truly means to ‘juggle two worlds,’” said Malfitano, “we can build systems that sustain both patients and the people who love and care for them.”