Empowering Family Caregivers: Always the Right Answer
In 1992, three years before the first issue of Today's Caregiver magazine rolled off the presses, I accompanied my mother to a physician’s office where they were conducting a clinical trial of high cholesterol. Her doctor suggested she consider enrolling in the trial and she asked me to join her during her first visit to the clinical trial site.
Having never worked in healthcare, my only impressions of clinical trials to that point were what I had gleaned from television programs or the news, which frankly did not fill me with hope. Yet, when we arrived, we were ushered into the doctor’s office who spent time explaining the trial and answering our questions. After the meeting with the doctor, she decided to participate in the study and I remember that the care mom received while in the trial was thorough and exceptional.
Since then, I’ve met many tremendously caring advocates within the clinical trial industry and have worked hard to help my fellow caregivers have a better understanding of what they need to consider when thinking about a loved one’s enrollment in a study. Helping caregivers understand the value of participation is especially important when their loved ones cannot make such decisions without their help and in many cases need a caregiver’s assistance in order to meet inclusion criteria. Respecting the importance of the family’s role in clinical trial participation is a two-way street. As much as we would like family members to be well-educated when making the decision to enroll their loved one in a trial, it is important for the clinical team to also understand the needs and motivations of the family members.
During a Drug Information Association webinar in which I participated, results from a study with family caregivers were shared. Some of the factors family members rated highly were how personally clinical staff interacted with them. Things like speaking to them directly and using their name when they spoke with them, looking them in the eyes, or touching them on the shoulder were specifically cited as positive. Caregivers felt best when, no matter what cognitive level their loved one was exhibiting, they were treated with respect and not overlooked during the conversation.
So many times, the kind of things that are most significant to a family caregiver are exactly the those that a highly stressed staff may forget when interacting with caregivers and their loved ones.
About 10 years ago, I was invited to talk to a group of clinical trial site raters at a pharmaceutical company’s staff conference in San Francisco. Since one of the most important goals of any clinical trial is to collect evaluable data, the importance of the rater’s job cannot be overstated and their interaction with the patient and caregiver is crucial to success. The reason for my participating in this event had to do with extremely low retention rates in recent trials held at these sites. When surveyed, the main complaint of the family caregiver was that they felt the rating process was unnecessarily impersonal. As the conference staff detailed their findings to this group of raters from English speaking countries, the sponsor’s lead physician, sitting on the dais, was verbally dismissive of the importance of such interactions.
Instead of my planned speech, I took the wireless microphone into the room of raters and asked for their thoughts. To a person, and no matter what country they represented, they all agreed with the study’s findings, but reported also that they were feeling extreme pressure to keep the interaction short and focused solely on data generation. By the end of the session, the group and I came up with some options that helped accomplish both goals. These included adding simple acknowledgements and personal interactions with the patients and family members, along with making sure the rating was accomplished quickly and effectively.
I believe that we made an impact on the lead physician, subsequently learning that the rules had been adjusted to help enhance personal interaction between rater and caregiver. And the complaints about the rater’s interactions turned into compliments. I’ve read a lot about the concept of patient-centricity and totally agree with the contention that the best healthcare outcomes occur when the patient is involved with their own healthcare decision-making, whenever possible. Yet, in so many healthcare situations, this partnership between patient and professional is not possible due to the age or the cognitive abilities of the patient. In these cases, the partnership must shift from the patient to their family or friends who are their personal caregivers.
Of course, the best outcomes are achieved when both caregiver and patient can be integral participants in the decision-making troika.In my book, The Fearless Caregiver: How to Best Care for Your Loved One and Still Have a Life of Your Own, I detail the present healthcare paradigm, which is stereotypically top-down. We turn this stereotype on its head with the Fearless Caregiver paradigm. This formulation is quite different from the present pyramid shaped formula changing it to a circular one with the loved one/patient and the caregiver firmly in the center. This is why we have developed the concept of caregiver-centricity. It is in no way a repetitive or reductive version of patient-centricity, and frankly the two concepts can easily exist side by side. Yet, when caregiver-centricity is implemented, many times you are creating an in-home coach, who must quickly learn to become the chief motivator of their loved one who is your patient.
One of the most important applications of caregiver-centricity is when dealing with retention issues. So many times, the family caregiver’s most important role is to help motivate their loved one to maintain the trial schedule. Their role is extraordinarily valuable when dealing with a loved one who is ill from the effects of their disease, living with schizophrenic episodes or with cognitive disorders such as FTD and Alzheimer’s.
As part of educating the family caregiver about the value of maintaining a trial visit schedule for their loved ones, a caregiver must internalize why it is important to complete the visits, while at the same time learn strategies to help motivate their loved ones to comply. In fact, so many challenges to trial retention are due to a failure to include and accommodate the caregiver’s role, since they are often the only way the patient can keep to the study schedule. Over many years, our experience in helping to develop innovative outreach scenarios for family caregivers has brought me to the conclusion that, although, it may seem counterintuitive to hear this from someone in an industry where advertising is so important, advertising alone is not the answer when educating caregivers about studies that require their engagement.
One of these very successful approaches has been what we call our Clinical Trial Caregiver Outreach Matrix programs. This program includes creating a disease or illness specific educational section in Today’s Caregiver magazine along with an IRB approved page. A customized outreach program is then developed and implemented ensuring the information reaches appropriate gatekeepers and caregivers in site cities. We also geotarget the segment through caregiver.com and our social media partners.
Enveloping the caregiver with education, teaching helpful techniques and offering support goes a long way towards motivating a family caregiver to become a retention partner. The more that clinical trial professionals see the family caregiver as a partner in trial retention and practice caregiver-centricity, the better they are able to successfully reach their goals.
At a recent Fearless Caregiver Conference, a site physician joined us on our expert Q & A Education Panel. To her credit, she took the microphone and stepped into the middle of the room crowded with family caregivers, inviting them to ask her anything about the clinical trial process. To her great surprise, every single question was about placebos. She answered each question warmly and in detail, making sure to overcome their fears and concerns. After the event, she told me that she was grateful to the attendees, as she had no idea that the use of placebos was this misunderstood and she would take better care in educating patients and family caregivers in her practice.
This is a great example of caregiver-centricity at its best, where everybody learns, and everybody wins.
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