A recent blog entry on the Huffington Post focuses on an issue I haven’t seen much written about: the role of caregivers in the clinical-trial process. Noting that the caregiver “is the closest and most constant observer of the patient,” writer Tory Zellick outlines how caregivers can help study investigators by, for example, reporting any side-effects or changes experienced by their loved one during the trial. She also offers a few suggestions, courtesy of the National Alliance for Caregiving, on how trial leaders can better partner with caregivers:
• Speak not only in patient-centered language, but also caregiver-centered language. For example, when discussing protocol, ask the caregiver whether she is able and/or willing to perform certain duties.
• Support the caregiver in figuring out the most effective and realistic way to comply with protocol requirements.
• Explain the medical jargon used throughout the clinical trial. The caregiver needs to understand what the researcher is saying, so as to effectively communicate this information to the patient.
• Guide the caregiver on being an effective observer– explicitly stating what to look out for, how to identify it and how to respond to it.
• Prepare the caregiver and patient for the emotional aspect of ending treatment, at the conclusion of a clinical trial.