Improving Outcomes for Infusion Patients Through Holistic Care

Grady Stewart, Digital Content Specialist, Infusion Access Foundation 

Please share your name, title, and a brief overview of your professional history. 

My name is Grady Stewart and I am a digital content specialist at the Infusion Access Foundation. I am a communications professional with experience in various fields, most prominently health care. I’ve previously worked as a communications coordinator at Loyola University Orleans College of Law and a Patient Leader Network Junior Associate at Health Union, in addition to several freelance and part-time roles in communications at other organizations.

What are some common challenges that infusion patients face in terms of managing their mental health along with their physical health?

The social and emotional impacts of chronic illness are often overlooked but are incredibly important. Chronic illness may present suddenly and follow patients throughout their lives. A diagnosis is often just the beginning.  When you're living with a chronic illness, you must learn how to live a different way. There are new boundaries, limitations, and sources of stress that you not only have to accept but adapt around.

In addition, many chronic illnesses are "invisible" and can feel incredibly isolating. Patients still must navigate the everyday responsibilities, like work or school, while managing painful symptoms, educating themselves about their treatment and condition, and even making significant life-changing decisions due to their illness. Many of these decisions happen in the background without awareness from others in the patients’ community. It's like having to live a double life. It's normal and natural to grieve and feel frustrated and overwhelmed. Living with a chronic illness may be more challenging and draining when patients have to experience these experiences alone along with financial challenges and social pressures. 

Can you share a personal experience from your NICA 2024 session that demonstrates how mental health plays a significant role for infusion patients?

A common theme highlighted by several panelists during our NICA 2024 session was the transformational power of support groups. Several panelists mentioned how connecting with other patients in their condition area and community was a milestone that opened them up to reframing their condition. Meeting other patients and connecting with supportive organizations in the health care space allowed them to access resources and find emotional support that they wouldn't have known existed had they not engaged with other patients. 

Another important story was highlighted by a panelist named Regina. Regina experienced significant challenges with accessing treatment due to financial and policy obstacles. When you're living with a chronic illness it's painful, scary, and stressful to be left on hold not knowing how or when you'll be able to receive treatment to alleviate symptoms. It wasn't until she found support from a former Infusion Access Foundation staff person that she could access the care that she needed to live her healthiest life. 

How can health care providers create a more supportive and uplifting environment for infusion patients to help improve their mental health?

Providers can assist by sharing information, promoting, and helping to organize patient-led support groups, and advocacy programs. On a more basic level, providing mental health resources such as brochures in waiting areas or offices helps start conversations about mental health. Ideally, providers can direct patients to mental health professionals. However, I think foundationally, the key is letting patients know that mental health help is available if needed. Often, patients don't know that resources are even available because they're preoccupied with competing responsibilities. Sitting down and taking the time to ask patients how they're doing, what they need, and how they're feeling is transformational. Patients thrive when they know that their providers are there for them and that help is accessible. 

In what ways do you believe addressing mental health in infusion patients can lead to better outcomes for both the patients themselves and the health care practice?

We’re increasingly discovering the connection between mind and body. Stress plays a major role in chronic illness and can aggravate or worsen symptoms. The goal for patients is to remain in a stable period of remission for as long as possible. Maintaining a positive mindset and having healthy mental health can help sustain remission so that patients rebound more quickly and effectively from health challenges. 
In addition, managing a chronic illness requires strong hygiene and maintenance. Patients must keep up with appointments, stick to treatment schedules and routines, and monitor the signals their body is sending. All of these tasks are much easier when patients are supported physically, mentally, and socially. True remission has physical signs, but it also depends on the patient's perspective. A patient must feel that their condition has been treated fully, beyond just diagnostic signs, for remission to matter. In turn, patients who feel fully supported and have the resources and care are happier with their providers. Addressing the needs and concerns of patients means that patients are more likely to maintain a relationship with a practice and feel that the practice is working for them.

What advice would you give to health care providers who may be unsure how to approach the topic of mental health with their infusion patients?

I would encourage health care providers to connect with organizations that serve their patients’ communities. These organizations often have a variety of resources with curated information relevant to patients. Many organizations have resources specifically devoted to the topic of mental health and chronic illness. These resources can be a great way to lay the foundations of the mental health conversation for infusion patients. Some organizations even have support programs or groups that providers can encourage patients to join to connect with other community members. Over time, as providers become more familiar with mental health considerations, they can tailor resources to be more specific to their patients or even create their own tools. Simply beginning the conversation around mental health is an important step toward ensuring that patients receive mental health support. 

What is the key takeaway you hope your NICA 2024 session walked away with? 

The key takeaway from this year's session is that treating patients requires a "whole person" approach. Beyond dispensing and administering treatment, providers should consider each patient they serve as an individual. Patients appreciate collaborative care where they can connect and be involved directly with their providers. In essence, providers should treat the person, not just the condition. There are so many different factors that can add stress and impact a patient's mental health, so having a care team that can provide a supportive, safe, and uplifting space is life changing.