Listening to Caregivers: Recollections from a Caregiver Seminar

This past weekend, I traveled with Lisa for a 1-day patient blogger conference held in Chicago, IL. The event, hosted by a pharmaceutical company, was arranged to gather feedback from ten bloggers about the company’s outreach efforts to the community. While Lisa has attended similar events previously, this one was a little different in that the sponsor made arrangements for caregivers to travel with their partners for support. Indeed, not only did the sponsor want caregivers there for support, they also scheduled a morning break-out session for us to discuss our caregiving experiences. I thought this was a great way for caregivers to network and learn from each other and for a healthcare company to gain more insight into how it might better serve the patient and their caregivers.

Our discussion group consisted of six caregivers and three employees from our sponsor to listen and gain feedback for their company’s future caregiver outreach efforts. Our session lasted close to an hour and touched upon numerous important topics. While the discussion was wide-ranging and organic, two issues in particular stood out to me as items for healthcare practitioners to keep in mind when working with patients and caregivers.

One of the first issues that emerged was that practitioners need to be aware of the relationship between the patient and the caregiver and how dynamics can differ based upon that relationship. As an example, one participant emphasized how deeply affected she was by her daughter’s diagnosis. She talked at length about the challenge of learning that her adult child would now have to live with a chronic auto-immune disease. As a mother, she immediately wanted to do anything and everything to protect her daughter from the effects of the disease. This perspective was echoed by another participant as she discussed how she and her family reacted upon learning of her mother’s diagnosis.

I offered a different perspective in talking about my reaction to Lisa’s diagnosis. We had only recently begun dating and as a relatively new person in her life, I felt the need to give her space to process the news. When she was ready, she could guide me through the process of working with her as a caregiver. In discussing this topic, I think both the caregivers and our sponsor realized that understanding the different dynamics between patients and caregivers is an important element in the caregiving process for all parties.

Another topic our group discussed at length was the importance of understanding where the patient and caregiver are in their journey with a chronic illness. Some caregivers observed that since diagnosis their loved one experienced a series of ups and downs or perhaps a decline in quality of life. Other members reported that their loved one had either stabilized or even improved with time. Clearly, while diagnosis was a key part of our caregiver experience, each of us was in our own place now. As a result, healthcare practitioners need to tailor their assistance so that it can meet the individual needs of patient and caregiver at different points along their journeys.

As so often happens with engaging discussions, time moved rapidly and we found ourselves wrapping up. But I have no doubt that our time was well spent and that all the participants benefited from the caregiver seminar.

For our sponsor, I think the discussion emphasized the importance of nuance when engaging in outreach with caregivers. Understanding the aforementioned issues is critical in developing such nuance and, in turn, providing patients and caregivers the customized assistance they need.

For the six caregivers present, the seminar was a great way to meet peers and to share new ideas about helping our loved ones. On a personal level, I found the seminar to be an immensely rewarding experience; one that gave me a new injection of positive energy about helping Lisa.

While we were just a small group of folks, I felt our seminar was an excellent forum for furthering efforts to provide assistance to patients and caregivers alike. I look forward to the opportunity to continue what we started in Chicago at future caregiver seminars.

Disclosure: All travel and food expenses related to the conference were covered by Novartis Pharmaceuticals.