Section 5 Guidelines for Clinical Interactions

Originally from Ali Zahir and Madhu Manivannan

Our work is centered around learning about and caring for older adults and patients with neurological disorders. As such, it is extremely important to us that we treat our research participants with respect, kindness, and understanding. After all, they are voluntarily devoting their time to help us, often with little to gain for themselves. These guidelines are by no means exhaustive, and are meant to highlight some considerations to take into account when interacting with our unique patient population.

  • Please make sure to use person-centered language. (i.e. refer to our participants as patient with bvFTD as opposed to the “she’s a bvFTD”). In general, “person-with-x” is preferred to “x person”: i.e., “person with dementia” vs. “demented patient,” and similarly for terms such as “diabetic,” “epileptic,” etc.
  • When greeting the patient: Introduce yourself, shake their hand, look them in the eyes, and treat them with the dignity they deserve.
    • Acknowledge that they are providing us their time and energy by participating in our study. Our patients endure some rather grueling days and we want them to understand we appreciate them.
    • Walk at their pace. At times, patients (or even healthy controls) can have a slow gait and speed and therefore you may need to slow your pace.
  • In the room, allow the patient to be seated by the door. We don’t want them to feel trapped in our exam rooms.
  • When obtaining consent from a patient, make sure to speak slowly and clearly. Avoid acronyms, esoteric terms, and jargon. Make the information in the consent form digestible for them. It helps to have a script prepared in your head that covers the following:
    • Purpose of the study/what our lab is interested in
    • What participation entails
    • Risks and Benefits
    • Rights as a participant
    • Provide opportunity for questions
  • Similarly, when explaining a task, please speak slowly. Pause frequently for questions and always check-in to see if the patient understands what you are saying.
    • Always provide a patient enough space; do not dominate the interaction and allow them time to speak.
    • Listen with intent. Make sure to listen to what the patient is saying, rather than focusing only on what you want the patient to do. Provide affirmations and reflect back to the patient what they have said so that they know you are listening.
  • When interacting with a patient and their caregiver, be sure to remain neutral. You do not want to side with one party. If there is a disagreement between the caregiver and patient, do not interfere but make sure you are physically on the side of the patient. I’ve learned this allows the patient to not feel alienated.
  • As you take patients through the task, be mindful of their capabilities and frustrations. If they appear agitated, uncomfortable, overly exhausted, or confused, pause the task and remind them that they can stop at any time. Be sensitive to their needs. Our tasks can be cognitively taxing, so it is important to continuously monitor the patient’s comfort level.
    • Patients will sometimes directly tell you they do not want to complete the task. Assure them that this is perfectly fine, and thank them for their time and their willingness to come in for this research visit.
    • Some patients will apologize for not understanding the task, asking lots of questions, or not being able to perform well on the task. Take the time to listen to their concerns, and sympathize (e.g. if a patient is frustrated at not being able to come up with words for a memory task, you might respond by acknowledging their difficulties and encouraging them on their performance).
    • Don’t be condescending or patronizing–when in doubt, listen to what patients are saying. Sometimes that’s better than responding or trying to provide solutions. Always thank them for participating in our research–this is completely voluntary and our patients travel long distances and undergo hours of exhausting tasks and scans to help us with our research!