A caregiver’s perspective can be just as valuable as a patient’s

Caregivers offer unique, invaluable insight into the patient experience

Sean Baumstark avatar

by Sean Baumstark |

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Throughout the last decade of volunteering and serving the rare disease community, I’ve often heard health-related companies and organizations reference the “patient voice.” This refers to the value of a patient’s experience and perspective when developing something meant to serve them.

For instance, if you want to build a home that will be accessible for the buyer, asking the buyer what they need or want would be helpful. Sure, the builder could read a book or follow general accessibility guidelines, but what may be considered accessible for the masses doesn’t necessarily mean it will be accessible for a specific resident. Tailoring an environment or experience to an individual may not always be feasible, but I believe it’s the best approach.

I don’t work in the rare disease or disability space full time, but my involvement has grown in the years since I was diagnosed with Friedreich’s ataxia. The podcast I co-host, “Two Disabled Dudes,” keeps me looped into a special and unique community of advocates, caregivers, and individuals living with rare conditions and disabilities.

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Simple questions help me keep life with FA in perspective

Including caregivers in the conversation

I’ve recently noticed an adaptation of the familiar “patient voice” phrasing. I’ve seen social media posts from a fellow podcaster and rare disease advocate, Effie Parks, and our mutual friend, Daniel DeFabio, that say “patient and caregiver voice” rather than just “patient voice.”

In other words, both patients and their caregivers have invaluable insights into ways to help the patient and avoid adding burdens or stressors to their life. Perhaps more significantly, many people with rare diseases or disabilities may be unable to advocate or speak up for themselves. This may be due to young age or because their condition has robbed them of the ability to communicate in a manner most can understand.

Often, caregivers can offer the most important and influential perspective on patients’ care.

I’ve never been a full-time or long-term caregiver, though I’ve helped in some situations, like after my brother’s spinal injury. Still, I recognize that my experience is minuscule compared with that of the parent or spouse of someone who needs ongoing care.

Unfortunately, my familiarity with caregiving is expanding due to my mother’s recent diagnosis of leukemia. Although she doesn’t need help around the clock, I have been helping more and more with managing her home, finances, interests, and miscellaneous obligations.

Although this chapter of life is still being written, I have quickly come to appreciate the caregiver’s voice. With family and close friends involved with many aspects of my mom’s situation right now, being able to lean on one another for advice, opinions, and moral support allows for greater support for my mom and those helping carry the burdens attached to cancer.

Put simply, we all need others at some point, to one degree or another. Life is better when we have people to lean on.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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