Adolescent Patient Experience: Patient Perspectives
We’ve decided to feature a particular and often overlooked demographic in healthcare: adolescents. In this three-part blog series, we’ll discuss barriers and ways to measure adolescent patient experience, gather adolescent perspectives on their healthcare, and provide methods and tools to support adolescent patients in the hospital. Be sure to check out the first post of this series to learn about how you can measure quality healthcare for adolescents.
We’re continuing our blog series on adolescent patient experience with a post focused on teen patient perspectives. There’s a relatively limited amount of information available about adolescent hospital experiences in comparison to adults and younger children; we want to highlight this particular population so healthcare staff can be aware of how to interact with and provide positive experiences for adolescent patients and their caregivers.
It’s first important to understand that adolescence is a period of life where individuals undergo significant physical and psychological changes. It’s an incredibly vulnerable time where teens are more susceptible to stress, even those who are in good health. Those with injuries or illnesses that require hospitalizations and clinic visits can miss out on milestones like prom, sports, or simply hanging out with friends. This is uniquely challenging as said events influence much of the teenage development and experience. Being hospitalized doesn’t change the desire for inclusion, engagement, and connection. It’s understandable that these patients can feel isolated in the hospital and are more prone to frustration, anger, and depression. All the more, how they’re treated by their care team is vital to their physical, mental, and emotional well-being.
Adolescent patients, just like all patients in general, benefit from high quality treatment and respectful communication with genuinely caring professionals. This particular age group also wants their voice to be heard. A study across eight European countries revealed that being listened to was rated the most important priority by adolescents, ahead of not being in pain, not feeling scared, the presence of parents/family, and five other aspects of patient experience. That’s a big deal. These results demonstrate how critical communication and listening are, and when teens are treated as bystanders in their own care, it can be detrimental to the patient experience.
A team from the Johns Hopkins Children's Center decided to engage their younger patients and have them create a “wishlist” of how they’d like to be treated during their hospital experience. They found that the wishes were mostly sentimental, things like engaging with child life and wanting clinicians to speak to them directly. The list provides telling insight into patient and family perspectives and is a great launching point for how to treat adolescent patients. The wish list contains the following:
Friendly introductions and personable interactions. Things like smiling and calling patients by the name they want to be called put them at ease and make a big difference. This makes the hospital feel more personal and not so formal.
Punctuality. Waiting is hard for patients and their families, inpatient or outpatient. Long wait times are inconvenient and make the patient frustrated and unwilling to share more information.
Communication. Although adolescents are not yet adults, they also want things to be explained to them in a way they understand. Don’t just talk to the caregivers, make sure the patient is included in the conversation and encourage them to ask questions.
Knowledge of medical history. It is important to be aware of the patient’s known medical history keep those things in mind when treating the patient, even if they’re not necessarily related to the current injury or illness.
Frequent updates. The unknown and the wait for answers is nerve wracking. Patients are fearful and sometimes their imagination can get the best of them. When giving updates, be detailed and give all known information. It is better to say “ I don’t know” than to say nothing at all.
Take a walk in the patient’s shoes. If even for just a brief moment, consider what it may be like for the patient sitting in the clinic or hospital bed. Remember all that they’re missing out on while being treated and exercise empathy as best as possible.
Do not rush. Be present with the patient when with them. Taking time to listen and to be with the patient makes them feel more comfortable and thankful for the interaction, rather than just another checkbox on a long list of things to do.
Distraction therapy. Distractions like video games, movies, and board games normalize the hospital environment and make teens feel like they’re not in the hospital. Make sure the patient has easy access to the Internet as that is how most teens communicate with friends and the outside world.
Cleanliness. When clinic or hospital rooms are clean and organized, it makes patients feel better. A cluttered or dirty environment can cause undue discomfort and anxiety.
Comfort the patient and family. Be caring, understanding, and comforting to the patient and family. Discerning when this is appropriate is important, but the patient and family would appreciate to be comforted than to not be at all.
Creating a wish list similar to the one above that is specific to your hospital or clinic is a wonderful idea to engage and understand your teenage patients. Hearing directly from their perspective is the best way to begin bettering the patient experience for adolescents.