Caregivers and Treatment Decisions

By Kathleen Hoffman, PhD, MSPH

Besides patients and doctors, who else influences treatment adherence at the consumer level? Marketing might look to one group that has multiple points of influence: Caregivers.

Several studies confirm that caregivers are an important factor in a patient’s decisions, including decisions on medication. One study called “The Role of the Family in Treatment Decision Making by Patients With Cancer,” said, “Family opinions have a significant impact on patients’ treatment decisions and psychological well-being….Family care of patients typically involves monitoring patients’ medications.” Another study entitled, “Patient Centered Care: A Path to Better Health Outcomes Through Engagement and Activation,” concluded: “Patient-centered care requires involvement of the patient and/or their caregiver at the center of the plan.”

Many of the Inspire members writing for the Inspire and the Mayo Clinic publication, Experts by Experience: Patient Stories that Teach, describe the impact of caregivers on their treatment decisions. For example, Alan Butler, a patient with pancreatic cancer, said, “Before I became sick, I would often try to be tough. However, since my diagnosis, I’ve gladly accepted my wife’s entreaties to take care of me.”

Another writer, Soojin Jun, said that her family is vital not only to her parents receiving care, but also to their understanding of it. At one point, they had to persuade her father to go to the ER for an injury: She said, “…It’s a family trip whenever they need medical care because they cannot communicate in English… If you are like me, taking care of family members with communication barriers, do your best to accompany them.”

Caregivers have multiple roles in adherence simply because some conditions are so debilitating that patients have to rely on others to count pills and remind them when to take them. Bo Bigelow, the parent of a child with a rare disease, said, “Since Tess’s birth, my wife and I have drastically redefined our lives. We have simplified our working lives in order to make room for medical appointments, sessions with specialists, and educational meetings.” In the case of dependent elders and children, the caregiver is the one in charge of understanding and adhering to medication instructions.

Patients also turn to family and friends for advice. Gabrielle “Rie” Lopez, who had an undiagnosed condition, wrote: “I had half a page of diagnoses, but still felt that something was missing, and I decided to build a new care team. I sought recommendations from family and friends, combed through online reviews, [and] scanned physician profiles.”

Some patient caregivers are virtual; but virtual doesn’t mean emotionally disconnected. One sleep apnea patient, John Bishop, used to making decisions independently, said: “I realized it wasn’t as easy as I thought it would be. I found an online patient-support community where people were discussing how to reduce events while using a CPAP….I have to pause and give thanks to my CPAP cyber-friends…Without them, I would have struggled even more than I did.” Online, patients sometimes serve as each other’s most trusted caregivers.

All caregivers have one thing in common: An emotional investment in the health outcome of the patient. As Chris Anselmo, a Muscular Dystrophy patient writes, “… caregivers are equally invested in the patient’s well-being, and often feel just as overwhelmed.” They need information, and they share information with others who care.

Simply put, patients and caregivers connect online, sharing what is most important to them. The unstructured authentic, unprompted (in the conventional research sense) communication in healthcare social media reveals topics that are most relevant, questions, and emotions they have at specific points in their journeys, and the words they use to describe what they are experiencing. The Inspire community includes many caregivers who have become experts alongside patients. Today we share a case study of caregivers of patients with a rare disease whose insights helped a pharmaceutical marketing team with a breakthrough product.

Download this case study, Caregivers of Patients with Rare Disorders Provide Essential Marketing Answers

Download this case study

Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.


1 Zhang, Amy Y., Siminoff, Laura A. (2003).“The Role of the Family in Treatment Decision Making by Patients With Cancer.” Oncology Nursing Forum, 30(6):1022-8 ·
DOI: 10.1188/03.ONF.1022-1028

2Miller, K. (2016). Patient Centered Care: A Path to Better Health Outcomes through Engagement and Activation. From Theory to Practice: Engagement in Neurorehabilitation39(4):465 – 470.

3Experts by Experience 2019: Patient stories that teach.