A Different Perspective: What does a metastatic breast cancer diagnosis mean for caregivers?
Dec 09, 2015
By Musa Mayer, advocate, founder of AdvancedBC.org
A diagnosis of metastatic breast cancer (MBC) is devastating for a patient. But what is often underestimated – and has not been well studied – is the emotional and sometimes physical impact it can also have on family and friends who provide care and support for their loved one through the course of the disease.
I was therefore especially excited be involved with the Make Your Dialogue Count survey, sponsored by Novartis Oncology, which surveyed caregivers (234), patients (359) and oncologists (252). The goal was to understand the experiences of all parties – patients, oncologists and caregivers – and identify communication gaps that may impact patients, from diagnosis and throughout their cancer journey. I presented results of this survey, focusing specifically on the impact of MBC on caregivers, at the San Antonio Breast Cancer Symposium, on December 9, 2015. The abstract from the presentation is also available online.
The survey shows that caregivers are committed and dedicated to their role. Yet, although they do their best to maintain a positive outlook, many (77%) say that their role is an emotional burden, which can leave them feeling isolated and underappreciated. Over half of caregivers (53%) surveyed felt as if nobody understood what they were going through, indicating a lack of emotional support and perhaps difficulties with disclosing their feelings to their loved one and others.
The findings also highlight the worry or anxiety that is ever-present for caregivers. Virtually all (99%) caregivers reported being worried about their loved one, most commonly about her well-being (74%) and the cancer getting worse (65%). A large majority (86%) also report that caregiving for their loved one has had a negative impact on their lives. One-third or more mentioned that regularly getting a good night’s sleep, finding time for themselves, having a social life, and maintaining financial stability have been negatively impacted.
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Although almost all (93%) caregivers reported being comfortable communicating with their loved ones’ doctors, many felt they encountered communication barriers. In fact, despite 69% saying they felt it was important for their loved one’s doctor to refer them to support services at the time of the MBC diagnosis, only 25% reported receiving such a referral. For information on support services and other useful resources, you can visit MBCN.org
While MBC patients have been widely surveyed, the Make Your Dialogue Count survey is the first publicly released survey to my knowledge that has examined MBC caregiver experiences. These findings help put the needs of caregivers into perspective, and bring us one step closer to understanding the overall impact felt by everyone involved in managing this devastating disease.
*It’s important to note that the patients and caregivers surveyed cannot be compared, as they were drawn from two unrelated groups.