As part of the 'Engaging Young People in Healthcare' series, Chelsea explains how to communicate with young people effectively to ensure young people gain their best quality of healthcare.
Communication is the exchanging of information in any way, such as writing or speaking. It’s an extremely important skill to have as it helps us build relationships and connect with others. It is particularly crucial in the health sector, providing a positive effect on health outcomes, not just with our general condition, but with our mental state.
Importance of communicating effectively
Healthcare professionals should always aim to communicate effectively with young people during appointments or in other mediums (e.g. letters or phone calls). They should start conversations the same way as they would with anybody else, treating us as individuals and building a relationship on care.
Whilst it is the healthcare professionals’ job to treat us medically as patients, it is important to also remember that, at the end of the day, we are also people. Not treating us like people can be demeaning; having ‘normal’ conversations, such as asking us how we are and finding out more about us than just our condition is key.
My favourite healthcare professionals are always the ones that ask me ‘how are you?’ and not just ‘how are your symptoms?’ It develops a bond between us, and it feels like they care about me and not just me as a patient.
Talk to us as people
Often, when you only ask about things like our symptoms and medications, it makes us feel like a case study or experiment for research. So, if we are studying, ask us how we are finding our course. If we are employed, ask us what we are currently working on. If we have hobbies, ask us what our latest project was, the event we went to, how much fun we had. Remember things about us outside our chronic illness, because as much as our illnesses envelop our lives, we are more than just them.
If our parents are in the room, ask us how much we want to be involved in the discussion. Sometimes, it becomes easier to talk to them because of their authority and experience, but it is important to involve us in that conversation too, as it helps build our own understanding of what’s going on in our health if we feel we are involved. It also encourages us to share information ourselves when we feel we have a voice in the room.
Provide accessible information
One way to communicate us is by providing understandable information. Some of us are extremely young when starting or going through our diagnostic journey, so information must be tailored to us. Consider the best way for us to learn about our condition, such as whether we would prefer something in written or visual form. This will guide you to provide us with the best information, such as leaflets, videos or even signposting to organisations for us to meet other individuals with our condition.
Consider our mental health and be empathetic Living with rare disease does not just impact us physically, but also mentally, so it is important for health care professionals to not only have basic communication skills, like talking, but also to be empathetic to how we are feeling and what we are going through. Physical health and mental health go hand in hand, so it’s important to also check-in with how we are doing with everything as having a rare disease can be exhausting, isolating and overwhelming.
Signposting us to other places with expertise can be particularly beneficial; it is important for us to know all our available options, such as therapy, psychotherapy, or patient advocacy groups. Reassure us there are solutions and talk us through them, whilst validating our feelings and allowing us to express them.
Treat us like equals
Whilst talking to us, treat us like equals. When communicating with us, ensure you don't use patronising language that demeans us as an individual. Sometimes, as young people, we are patronised due to our age and labelled as being 'inexperienced' just because of how old we are.
In reality, our lived experience gives us our own expertise, especially as we have had to grow up a lot faster navigating a long-term health condition.
Listening to our perspective may shed light on something different to a textbook definition, especially as every individual lives with rare disease differently, even if it is the same condition. So, when discussing our healthcare, ensure you listen to our questions, concerns and opinions. Ensure you listen to us when we talk about what is going on—don’t patronise us, don’t medically gaslight our symptoms, and listen to our experiences.
Through communicating with us, we will have a better understanding of what is going on in our bodies. It will be more motivating for us to take care of ourselves through considering available treatment options, taking our medication, and doing tests and scans if we are told the importance of it and treated like people.
It is really important for you to communicate with us young people effectively to ensure our best quality of life.