It’s a common misconception that caregivers play a primary role only in pediatric clinical trials. While pediatric trials do require parents and caregivers to take charge for the children who depend on them, many adults rely on caregivers in their everyday lives as well. And when those individuals participate in clinical research, their caregivers take on a whole new set of duties on behalf of their loved ones.
Below are eight caregiver responsibilities in clinical trials, whether they involve children or adults.
- Ensure the patient attends all appointments. Caregivers must maintain the visit schedules and telephone call check-ins that are required throughout a trial.
- Make sure all information is completed to date. Most studies require that patients keep some sort of diary. The responsibility of completing this diary on a regular basis often falls on the caregiver.
- Help communicate any adverse effects the patient may be experiencing. If the caregivers do most of the talking during trial visits, it’s important they are aware of what adverse effects to look for so that they can discuss any symptoms with the research team.
- Monitor study drug intake to ensure compliance. Whether it’s an oral pill, a liquid, or an injection, the caregiver is often the one who ensures the patient is taking the drug properly.
- Provide support. Participating in clinical research can be very emotional and, at times, stressful. Support is most likely welcome throughout the course of the trial.
- Listen carefully and take notes on next steps. During trial visits, the research staff will likely review a lot of information. It’s important that caregivers listen closely so they can fully understand the process. Asking questions is always encouraged.
- Be an advocate. In some situations, caregivers are their loved ones’ eyes and ears. Caregivers help communicate just about everything to the research staff.
- Keep organized files and documents. It’s important for a caregiver to have a clear understanding of the clinical research process and of the patient’s medical records. Keeping a file specifically for any health-related documents is helpful. Caregivers should be organized and know where to look if a certain document is needed.
The role of the caregiver doesn’t stop with just these eight responsibilities; it’s much, much more. However, the onsite research staff and trial sponsors are very appreciative of caregivers and their dedication. Some pharmaceutical companies even offer travel reimbursement and compensation programs to ease the financial burden that can occur. After all, they want both the trial and the patient experience to be as successful and comfortable as possible.