Expert Insights

Expert Insights

5 Main Types of Caregivers & How They May Influence Your Clinical Trial

5 Main Types of Caregivers & How They May Influence Your Clinical Trial
22 August 2019

Behind every patient are usually one or more caregivers who may be just as, if not more, invested in the experience of the clinical trial. Their performance and participation are often requirements to help patients meet rigorous clinical trial demands and compliance with procedures and participation overall.

Caregivers are not only parents; they may cross a broad spectrum of age, life, and socioeconomic statuses. Their backgrounds can play a key role in clinical trial perception and experience from inception to operationalization and beyond. 

Who is considered a caregiver? And what are some of the motivating factors that these providers share that can influence your clinical trials?

Following are just a few of the types of caregivers that may exist and some observations for understanding each from Synteract’s VP for Rare and Orphan Diseases, Lisa Dilworth, from her recent webinar on this topic:

  • Parents – often are primary caregivers, impacted by marital status/agreement and/or other children who also require their time. They may be affected by genetic disease and hope to have all their children enrolled in a clinical trial, even if some are not good candidates/do not qualify, causing additional stress. Parents may also be experiencing guilt of having been a carrier (especially with 80% of rare diseases being genetic in nature). With busy schedules and demands, locale and proximity to the clinical site are important factors for these providers.
  • Spouse – primary caregivers not only love the patient; they may be solely responsible for children and juggling work demands. If they are the sole earner, the increased financial burden puts these caregivers at risk for stress-related diseases. Conversely, the spouse may be older and retired; sometimes these individuals may be battling diseases and be unwell themselves. Often they have gone from being a partner to being parent-like to the spouse.
  • Children – may be primary caregivers of aging patients and/or those with Alzheimer’s, Multiple Sclerosis, and other diseases that have physical, cognitive, or mental impairments. Inherent challenges for these groups might include disagreements with siblings on whether mom/dad should enroll in a trial. Additionally, adult children may have young children of their own to care for, may be active in their social lives and careers, with limited time and availability to accompany parents to the clinic. Efficiency and advance notice are important to them.
  • Siblings – even those who may have inherited diseases, like Huntington’s and others, may also serve as caregivers. Their own genetic state may be unknown, and they may have their own anxieties about the disease. Or, if they escaped the genetic affliction that impacted their siblings, they may suffer from “survivor’s guilt.”
  • Relatives – while in pediatric trials the caregiver is most often the parent, there can be instances where parents are unable to be present at all times. Another relative may step in to provide aspects of care and support for the trials. Additionally, other relatives or providers may help in other cases where parents or children are deceased, ill or unable to help due to living far away.
  • Friends – who understand the person’s condition. Sometimes these individuals may also have their own biases on the subject’s capabilities.

Regardless of their relationship with the patient, caregivers frequently make a profound commitment to their loved ones. They may provide varying levels of engagement from answering questionnaires and participating in interviews, to serving as the legally authorized representative for the patient – often it’s something in the middle of this spectrum. They may have had to make physical changes to their homes; have a very tight, packed schedule, often starting early and running late at night, sometimes after having worked all day.

They may sacrifice just as much, if not more, than the patient. They should be treated with the respect their participation deserves.

As the individuals providing care coordination, nursing and mental support/expertise, logistics coordination, caregivers can provide greater insight into patient health and improvement before others, or even the patient, notices them. If they have legal guardian status, their performance and participation may be a requirement in clinical trials. See our recent blog on “Key Caregivers in Rare Disease Clinical Trials” for more on how these providers can influence involvement.

Want to know how to better tap into the important role caregivers can play in your clinical trial? Watch our recent webinar on this topic or contact us for more. 

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