Celebrating and Supporting Caregivers During National Family Caregivers Month
Expert Perspectives · Keira Smith · 2024-11-22
November is National Family Caregivers Month, a time to recognize the dedication and challenges faced by family caregivers supporting loved ones with illnesses. In this episode of Oncology Data Advisor, Dr. Lauren Ghazal, Megan-Claire Chase, and Dr. Jasmin Hundal share their personal and professional experiences related to caregiving, providing insight into the emotional and practical burdens caregivers face and underscoring the need for systemic support.
Balancing Roles: The Caregiver Experience
Dr. Lauren Ghazal, a Family Nurse Practitioner and Assistant Professor in the School of Nursing at the University of Rochester, discussed her own experience with cancer and highlighted the importance of flexible caregiving relationships, especially for younger adults balancing self-discovery, independence, and career growth alongside caregiving duties.
Megan-Claire Chase, a breast cancer survivor and caregiver for her mother, who is an ovarian cancer survivor and myeloproliferative neoplasm (MPN) patient, shared her experience as an only child shouldering her mother’s care. She described the emotional strain and responsibility, noting that the role has affected her own health and recovery. Her story highlights the profound impact that caregiving can have on personal well-being, especially when resources or family support are limited.
Dr. Jasmin Hundal, a Hematology/Oncology Fellow at the Cleveland Clinic, shared the story of when her mother was diagnosed with breast cancer. Despite her medical training, she found the emotional toll of her mother’s diagnosis difficult. Dr. Hundal discussed “time toxicity”—the exhaustive administrative burden of appointments, treatments, and paperwork—as a hidden challenge that can lead to caregiver burnout. This experience has inspired her to advocate for efficient systems to alleviate caregivers’ workload.
Workplace Accommodations: The Need for Flexibility
The panelists all stressed the importance of workplace accommodations for caregivers. Dr. Ghazal expressed gratitude for her supportive academic environment, which encouraged her to seek accommodations. In contrast, Ms. Chase struggled to balance caregiving with professional responsibilities in a less understanding workplace, particularly feeling the added pressure as a Black woman in the South. Her experience reflects a broader issue, as many caregivers—especially women and people of color—may face additional challenges in obtaining workplace flexibility.
Dr. Hundal highlighted the benefits of remote work brought on by the COVID-19 pandemic, suggesting that flexible schedules could support caregivers and reduce burnout. She called for further research into the effects of remote work on caregiver well-being, advocating for policies that encourage flexible work environments to help caregivers maintain a balance between their roles and personal health.
Systemic Challenges and Time Toxicity
Caregivers often find themselves overwhelmed with the scheduling of appointments, organizing treatments, and managing unexpected medical issues. Ms. Chase described the isolation and exhaustion that can accompany these responsibilities, especially when support systems are limited. Dr. Hundal expanded on the concept of time toxicity, noting the constant struggle to balance caregiving duties with personal responsibilities. This experience has deepened her commitment to patient-centered care, recognizing the emotional and logistical impact of each medical visit on both patients and caregivers.
The Emotional Toll and Importance of Self-Care
The discussion highlighted the emotional toll of caregiving, particularly when caregivers are also dealing with personal health or professional demands. Ms. Chase shared feelings of inadequacy despite her efforts to support her mother, with moments of validation found in advocacy opportunities. Dr. Ghazal reflected on the emotional weight of caregiving and the necessity of integrating self-care into one’s routine.
However, self-care remains difficult for many caregivers, who often feel guilty taking time for themselves. Ms. Chase and Dr. Hundal agreed on the importance of making space for personal needs, like vacations or social time, to manage caregiving responsibilities without burnout. They emphasized that supportive workplace policies could help caregivers balance their professional and personal lives more effectively.
Looking Forward: Research and Policy Change
The panelists concluded by calling for research and policy changes to better support caregivers. Dr. Ghazal’s research involves interviewing employers and HR professionals to understand workplace accommodations for caregivers, advocating for a collaborative approach to supporting them. This shift could ease the burden on caregivers by involving employers and institutions in creating more supportive environments.
If you’re interested in participating in this research, reach out here!
Ms. Chase emphasized the need for increased resources, funding, and awareness for caregivers, suggesting that a stronger community and institutional support network could alleviate feelings of isolation. Dr. Hundal suggested that policy changes promoting remote work and flexible schedules could improve caregivers’ quality of life and contribute to positive health outcomes for both caregivers and patients.
Advocacy and Awareness for National Family Caregivers Month
As National Family Caregivers Month continues, this conversation highlights the sacrifices and struggles of caregivers and the need for systemic changes in workplace flexibility, healthcare policies, and emotional support. The stories shared by Dr. Ghazal, Ms. Chase, and Dr. Hundal shed light on the many roles caregivers play and the pressing need for broader societal recognition and support.
Understanding these challenges and advocating for necessary support systems can help create a more compassionate environment for caregivers. With greater awareness and policies in place, healthcare professionals, employers, and the public can offer essential support to those who play a critical role in the well-being of patients with cancer.
About the Speakers
Lauren Ghazal, PhD, FNP-BC, is an Assistant Professor in the School of Nursing and an Associate Member in Cancer Prevention and Control at the University of Rochester Medical Center in New York. Her research focuses on nursing work-related challenges and financial toxicity experienced by adolescent and young adult cancer survivors, incorporating economic, clinical, and personal experiences to address survivorship disparities.
Megan-Claire Chase is a patient advocate and the Breast Cancer Program Director for SHARE Cancer Support. As a survivor of stage IIA invasive lobular breast cancer, Ms. Chase became involved in patient advocacy work after completing her treatment. She is a prolific writer, blogger, and public speaker, having been featured in the New York Times, in People Magazine, and on PBS’s “Beyond Cancer” episode of “Stories from the Stage.” Her story and work are documented in her blog “Life on the Cancer Train.”
Jasmin Hundal, MD, MS, MPH, is a second-year Hematology/Oncology Fellow at the Cleveland Clinic in Cleveland, Ohio. Previously, she completed her Internal Medicine Residency at the University of Connecticut. Dr. Hundal’s main area of interest is the overlap between cardiometabolic health and cancer, particularly for breast cancer patients and survivors. Outside of work, she enjoys traveling, cooking, and hiking.