How Can We Celebrate All Caregivers on the Patient’s Journey?
They are on their way to the hospital. It’s all too quick, the way it happened. The migraines, the irregular blood tests that came back from the pediatrician. No information just more questions. While driving, many thoughts ran through their minds… is there a quick fix – a pill, magic, something to bring life back to “normal?” At the hospital there are more tests, more time, more waiting, and then life changes; Type 1 Diabetes.
Jen’s only 9 years old, it doesn’t mean much to her, yet. She just wants to be back in school with her friends. She doesn’t know what the diagnosis means. But her parents do, sort of. They understand this is a chronic illness that will change Jen’s life completely, but they don’t know the extent of it all. They don’t know that it’s not just Jen’s life that’s going to change; it’s their lives, too. They’re a family and families support one another. More nurses show up, they are ready to lend a supporting hand to Jen, whenever she needs one, and are prepared to answer her and her parent’s many looming questions. They are there to help, to explain, and to make sense of this confusing situation.
Questions start piling in. Who will check up on her in the beginning stages to make sure she is adjusting to the many transitions? Will she need a new doctor, a specialist? What about when she goes away, attends a slumber party or a field trip for school? How should she be administering a shot? How many times should she check her blood sugar a day? Can she continue playing sports? How does this impact her diet? The list continues.
When someone is diagnosed with a chronic disease, such as Diabetes, his or her whole life changes. There is so much that the patient goes through both physically and mentally. And we need to be aware of these personal challenges. However, it’s not just the patient’s life that changes. They become a part of a larger network of caregivers and providers who all work to help the patient manage their disease. Each of these individuals has their own challenges and roles in the patient’s journey. Every link in the chain should function properly in order to attain the best level of care. We must think about all of these individuals and identify their unique challenges. By doing this, we can provide better knowledge and better tools that allow for a better patient experience.
When diagnosed, Jen spent two weeks in the hospital. During this time the nurses were her support team, her friends. They helped Jen make sense of her situation, to understand the way her body worked. At 9 years old, Jen didn’t understand all the complex explanations the doctors gave her. The nurses had a way of breaking down these scary and mysterious medical terms into something more digestible for Jen to understand. They offered her the analogy of the pancreas serving as a door and the insulin, which her body was no longer producing, as the key. With the key “lost,” they had to find new ways to open the door to the pancreas so that her body could continue to process glucose. The solution; insulin shots, anywhere from 6-15 times a day.
Jen returned to school able to explain to her friends and the school nurses what she was dealing with. This knowledge gave her the comfort and security she needed to remain in school. At school, the nurses became an important part of Jen’s routine life. “Their office was my second classroom,” says Jen. She would find herself in their office if she wasn’t feeling well due to low blood sugar or other diabetes related issues. Looking back, she feels lucky that she went to a smaller school that allowed her to form close relationships. Her teachers and school nurses provided her with the safety net she needed to manage her diabetes.
Jen’s parents were also vital to her care. They were her wake-up call in the morning to remind her to check her sugar levels, the extra chaperones she needed to go on field trips. They changed their eating habits to make Jen’s struggle easier and went with Jen to workshops about diabetes. They met with other parents going through similar struggles and found new doctors for Jen to offer her the most attentive type of care. In her journey, Jen’s parents were irreplaceable.
In addition to her primary care provider, they now had to find a specialist. Switching to a pediatric endocrinologist was important for Jen’s health. There were, and still are, required check-ins every three months to make sure that her health is in good form. Early on, Jen often had diabetes-related seizures due to drops in her blood sugar levels, so keeping a close eye on low blood sugars, especially before going to bed, is just one example of how treatment varies from patient to patient. “No two patients living with diabetes are the same, it’s not a one size fits all solution” says Jen. “Every patient has different needs, different reactions, and that is something that needs to be better understood by our doctors and healthcare leaders. If the shoe fits, fantastic, but if not, a new shoe must be found – the same goes for health care management. Finding a doctor that is attentive and able to offer different strategies when bumps in the road arise– and they will – is so important.” Her doctor was willing to work with her and the unexpected things life threw her way to keep her diabetes under control. Always just a phone call away, her doctor was available to answer questions or help with concerns. She and her staff were critical in helping Jen, and her family, through the most difficult times.
When Jen turned 18, she went off to college: another set of changes. For one, her college was halfway across the country and many miles away from the entire care network that she had built. Fortunately, she wasn’t entirely alone during this transition. With extended family close to her college, Jen had a new, but familiar, support system when see needed help. Additionally, she found a new endocrinologist that worked closely with her home doctor, to ensure there were no gaps in her care plan. She was adjusting.
Even with this new support system in place, Jen’s mother continued to play a pivotal role. Jen mentions a story in which her mother woke up the entire dormitory, after she overslept and missed her mother’s call. Scared and unsure if her daughter needed help, her mother called the dorm, her roommates, the resident assistant, until they were finally able to connect. It took a while for Jen and her mother to accept these new transitions, but in time they did. This moment helped Jen realize just how much her parents had always done for her and how much of her care and control was dependent on their presence. In this moment, she realized she needed to be the one in control.
Growing up, Jen sometimes felt isolated from others her age. She didn’t know anyone who was dealing with a chronic disease. That all changed when she went to college. At college, she met individuals that understood what being a diabetic meant, and the daily precautions that needed to be taken, whether they were dealing with it personally or they knew someone else living with the disease. Sharing stories and talking about these shared experiences brought her comfort and a feeling of belonging. Although not caregivers, they reminded Jen that she wasn’t alone.
As Jen’s body changed with age, new accommodations were necessary. With each new step, more and more people became integral to her well-being. This is true of all patients struggling to manage a disease. The unique challenges that each person endures in this journey can provide insight on how to improve the whole experience. To simplify healthcare, everyone in the network of care needs to work together. Then, there might be some progress.
Jennifer Garavaglia is social media coordinator of 3E Public Relations, a leading public relations firm with roots in New Jersey but branches that extend all over the world. Jennifer graduated with a Bachelor of Arts in Advertising from Michigan State University. She combines her digital and print media experiences with studio art work, including photography, broadening her ability to visualize and think outside the box. Her photography work has been placed in Gold Standard publications, and results of her public relations work can be seen across many top-tier online and broadcast media outlets.
Living with diabetes for the last 17 years, Jennifer has experienced the many highs and lows of this disease, trialing different technologies and medicines available for the treatment. For the best outcomes, she works closely with a medical staff to find the best solutions to fit her individual needs.