“One morning, I received a call from a patient’s husband and caregiver. He had been working full-time on the night shift while his wife slept, then caring for her during the day grabbing naps here and there. That morning, exhaustion and burnout set in. He said to me, ‘I knew it would happen. I just didn’t think it would be so soon. I can’t lift her into the tub anymore, and we’re just sitting here on the bathroom floor, not knowing what to do.’ He was crying.” –Jennifer Jacobson, RN, a clinical nurse educator who has provided patient education on behalf of biopharma companies for nearly 10 years.
More and more Americans are thrust into a family caregiving role who never anticipated or signed on for it and, at times, feel trapped, helpless, frustrated, and overwhelmed. A Cambria Health survey found that an estimated 100 million people (45% of the U.S. population) have acted as a caregiver for a loved one,1 and this will only increase as people are living longer.
While the aging of America is one reason behind the escalating need for caregivers, only 25% require this assistance due to age. More than half need care due to health conditions,2 which is no surprise considering 80% of older adults have at least one chronic health disease and 77% have at least two.3
Family caregivers have been called the glue that keeps the healthcare system together—they are an unpaid and invisible healthcare workforce. They perform wide-ranging tasks such as coordinating care, managing medications, and attending medical appointments; 37% are hands-on administering medications, injections, and medical treatment.4
Many biopharma companies offer patient support programs that provide product training to onboard patients to their therapies, information about the disease, and contact centers for questions. But could industry do more?
“The way our healthcare system is set up, the responsibility and the resources are all aimed at the patient. Often, the family is overlooked entirely,” Jacobson says. “This design means there is no high-level holistic view that includes others in the patient’s life. There is no room for caregivers. The idea of industry stepping in to disrupt this in such a positive way makes sense.”
The following five suggestions may guide manufacturers to consider the patient journey more broadly, engaging family caregivers to help hurdle formidable barriers to improved medication adherence and outcomes.
1. Connect Caregivers to Resources for Support
According to a nurse survey, some of the greatest challenges caregivers face are finding resources to help the patient, including support from the patient’s healthcare provider (HCP) team when needed (see figure).
Biopharma can take a more active role in helping caregivers connect the patient’s circle of support to specific resources tailored to their needs. “One caregiver I know had not taken advantage of any available community resources on his own,” says Jeanne Marlow, RN, a clinical nurse educator providing patient education on behalf of a pharmaceutical manufacturer. Nurses, however, are trained to accept people “where they’re at,” assess a situation, and identify and access appropriate resources to meet the need.
“In a relatively short time,” Marlow adds, “the family and their church became more involved, and the spouse gained confidence. I was able to get them connected with a community group for more support. This family came a long way from not wanting to leave the home, focusing on death and how much time was left, to changing the focus to live in the moment, enjoy family and friends, and accept joy into their lives once again.”
Caregivers could also benefit from increased support from the patient’s HCP team. According to the Family Caregiver Alliance, “some 77% of caregivers report the need to ask for advice about the medications and medical treatments” for their loved ones.4 However, navigating a complex and constantly changing healthcare system can be difficult and intimidating. Biopharma patient support teams can identify individualized resources to answer questions on starting a new therapy or managing a disease because they understand both the needs of the family and the workings of the healthcare system.
These patient support teams could supply caregivers with advice such as how to prepare for a medical appointment, questions to ask, tips for tracking medications and doctors seen, how to retain important health records, and ensuring that notes from specialist visits are shared back to the primary care provider (PCP).
Many biopharma companies inform patients about resources for insurance questions and benefits investigation. These services could also be directed to caregivers to navigate on behalf of loved ones who may not be able to manage it themselves. A nurse educator could advise patients on where questions should be directed: the PCP office or specialist, the insurance company, HUB provider, etc.
2. Provide Tools for Stress Management
Managing the stress of their role is one of the greatest challenges caregivers face—and a potential long-term barrier to medication adherence. “There is substantial data that shows the prolonged stress of caregiving over a length of time can contribute to chronic illness in the caregiver down the line,” Jacobson says.
“The caregiver’s own feelings, anxiety, and grief are normally put on the back burner because they have to take charge and provide support and care for their loved one,” adds Tami Moscatiello, an RN who has provided support to hundreds of patients on behalf of biopharma companies and healthcare systems.
Many biopharma companies already have personnel on the ground and “nurse hotlines” that provide patient education. Optimizing these teams to help caregivers better understand the patient journey and what to expect, provide stress management tools and opportunities, assist in gaining access to respite care, and—most importantly—monitoring caregivers for the ongoing risk of burnout would be a great benefit.
3. Offer Caregiver Training
Caregivers often have little to no healthcare training. An AARP survey showed that 20 million largely self-taught home caregivers in the U.S. perform complex medical tasks “typically performed by healthcare professionals such as giving injections, preparing special diets, handling tube feedings, and dealing with specialized equipment.”5 Most of them were not prepared or trained to perform these duties.
“Families and caregivers take on the role of the ‘nurse’ in many instances so their support and care plays an important role in patient adherence,” Moscatiello says. “I’ve had many family members just break down and cry right in front of me, exhausted and overwhelmed.”
This could be a perfect gap for manufacturers to fill. During the process of onboarding new patients to a new therapy, educational sessions could be directed specifically toward caregiver training along with follow-ups to answer questions that arise and ensure that instructions are performed according to prescribers’ orders.
4. Use Technology
As medications and treatment regimens become more complex and the use of smart technologies to monitor health continues to grow at a rapid pace, there is an opportunity to educate both patients and caregivers. Today, this education may be directed to patients but not to caregivers. Biopharma can offer both education and support to ensure patients and caregivers understand how to use new devices and, perhaps more importantly, how to access support when something goes wrong.
Biopharma companies can help patients and caregivers take full advantage of smart home technology which is increasingly sophisticated about monitoring health. This can be done via sensors that capture information such as body temperature, when someone uses the restroom, or if the person gets out of bed. Even something as simple as a morning voice check-in can eliminate the need for more labor-intensive and intrusive wellness checks—easing the burden on caregivers.
Additionally, with the increase of digital apps to better manage health, caregivers can be shown how to use apps and websites such as CaringBridge or Meal Train to lighten their load. Many grocery stores have free online ordering and pickup and will maintain lists of frequently ordered items.
5. Support Offices with Peer-to-Peer Education
In the practice setting, biopharma nurse educators can provide peer-to-peer education such as in-service training for the office staff to understand and recognize signs of caregiver stress and gaps in caregiver training. Office teams can even be encouraged to follow up with caregivers regularly during the same time they are checking in on the patient in order to develop one-on-one relationships with the caregiver. Additionally, in conjunction with product education for healthcare providers, biopharma can educate HCPs to be mindful of the health risks specific to their products for caregivers, encourage caregivers’ use of available information and tools, and make referrals to supportive programs and services.
As it turns out, being a family caregiver can spark great joy. According to Moscatiello, “There is no better gift than giving ourselves to others, providing help and care to those we love. I am a nurse today because of the gift of being a family caregiver.”
1. “The Face of Caregivers Today & How Society Can Support These Unsung Heroes.” American Brain Society. March 3, 2020. https://americanbrainsociety.org/the-face-of-caregivers-today-how-society-can-support-these-unsung-heroes.
2. “Wired for Care: The New Face of Caregiving in America.” Cambia Health Solutions. 2019. https://www.cambiahealth.com/sites/default/files/cambia-files/resources/Cambia%20Wired%20for%20Care%20Whitepaper.pdf.
3. “Healthy Aging Facts.” National Center on Aging. https://www.ncoa.org/news/resources-for-reporters/get-the-facts/healthy-aging-facts.
4. “Taking Care of YOU: Self-Care for Family Caregivers.” Family Caregiver Alliance. https://www.caregiver.org/taking-care-you-self-care-family-caregivers.
5. “Untrained Caregivers Bear Burden of Complex Medical Tasks, Report Shows.” UPI. April 23, 2019. https://www.upi.com/Health_News/2019/04/23/Untrained-caregivers-bear-burden-of-complex-medical-tasks-report-shows/8691556052763.