Like patients, caregivers need education and support, but are often forgotten or unheard.
When Allison Breininger’s husband, Sean, was diagnosed with Fanconi anemia, it changed both of their lives.
Fanconi anemia is a rare genetic disease characterized by bone marrow failure and much higher-than-normal risk of cancer development. In the 12 years since Sean’s diagnosis, he has had tongue, bladder, prostate, and skin cancer. He has undergone bone marrow transplant, as well as tongue and bladder resection, and most recently, esophageal surgery. Throughout all of this, Allison has been by his side.
Yet, when she was thrust into this role, she had no experience or medical training. She felt wholly unprepared to be pulled in so many directions. Suddenly, she was helping her husband recover from surgeries and relearn how to speak, while caring for their newly adopted young daughter, and working. And although there were resources available for her husband, she, herself, felt forgotten in the cancer care landscape.
“I have gone through a traumatic experience as well,” she said, in an interview with Oncology Nursing News ahead of her husband’s most recent surgery. “For instance, I am about to go sit in a hospital all day, and we are not sure what the outcomes going to be. Afterwards, he will get medicine and rest, and I will be parenting, and working, and taking care of the household.”
“Caregivers are going through this really hard thing, while also doing so many other things,” she added. “Then, to add insult to injury, we are often unseen. People do not really even recognize that this hard thing is happening to us too.”
Prior to his diagnosis, Sean had been working in the nonprofit space and Allison was an educator. Together, they combined their background to create The Negative Space, whose mission is to change the way caregivers are seen and supported.
Their mission is accomplished in 2 ways. First, Allison offers direct support through one-on-one coaching with caregivers and hosting virtual support groups. Second, she works across community setting to teach individuals how to better support caregivers. She speaks to medical students and health care professionals to paint the picture of the caregiver experience for them, so they can learn to support not only the patient but the caregiver as well.
The Negative Space also recently received a grant to partner with the Hope Lodge, which is part of the American Cancer Society.
“As we know, when a patient checks into the Hope Lodge, they get this big ‘swag bag,’” Allison said. “The caregiver gets a folder. A folder filled with paperwork.”
The grant that she received allowed her to make caregiver gift boxes to greet those checking in.
“The next 142 caregivers that check into the Hope Lodge will get one of my caregiver gift boxes,” she said. “The theme is, ’I am part of the story.’” The boxes are filled with affirmations that the caregivers are indeed part of the story, comforting items like tea and essential oils, and connections to resources that they may need.
Of note, the term “negative space,” is an artistic concept. It lives alongside the positive space, or the subject of the composition; negative space is the space around and between the subject of an image. However, it is just as important as the subject itself, as it helps to define the boundaries of the positive space and brings balance to a work of art.
In Allison’s experience, the caregiver often represents this “negative space.” They are vital to the big picture, providing balance by constantly providing for the patients. Yet, the patients, themselves, represent the positive space, by being the focus of doctors, appointments, families, friends, and family schedules.
Through Allison’s work, including her speaking engagements and gift boxes, she is hoping to reframe how the world sees caregivers, highlighting their role in the overall composition of care.
“Think of everything that is in the background of a picture, the things that you don't really pay attention to or see or focus on,” she said. “If they were gone, the whole picture would change.”
“That is the case with caregivers as well.”
The Negative Space is not the only organization seeking to change the conversation around caregivers.
Hazel Moran, who leads the global patient insights and advocacy team at EMD Serono, is also working to help create a web of caregiver advocacy. Her team serves the main liaison with patient organizations to find opportunities to support patients and caregivers.
Embracing Carers came about through collaboration between her company and the caregiving community, according to Moran. The initiative serves as a platform that hosts resources developed by patient organizations. As of October 2023, the website offers 5 United Nations-guided online training modules free of cost to caregivers. These modules are available in both English and Spanish and delve into intense clinical duties that many individuals be feel unprepared to tackle on their own, such as nursing nasogastric and gastronomy tubes.
“We are excited to be able to bring forward free training for caregivers on things like how to set up a home environment appropriately, to address caregiver-patient need, to optimize nutrition, and deal with feeding tubes,” she told Oncology Nursing News. “These are basic modules that support caregivers and the roles that they have to have to do.”
Other modules address stool collection and disposing of human waste, proper use of catheters and managing incontinence, and understanding digestive problems that may arise. For those who are interested, there is also the option to receive UN certification as a professional caregiver after completing the training courses.
“This is just the beginning,” Moran said. “We're already thinking about what we need to do next.”
Oncology nurses can make a difference in their practice by recognizing the caregiver’s presence and the role they play.
“Ask the questions: how are you doing and what can we do to support you?” Moran advised. “There may not be a whole lot that nurses can do, but just recognize that caregivers are in this role and that they have needs as well.”
“It is almost like nurses have 2 patients in front of them,” Allison added. “I know that it is hard because the other person isn't necessarily in their charge and they are not being paid for that, but that that person also really deserves and needs that care and support.”