Today, I checked in with a friend who is in active treatment for ovarian cancer. In providing her update, she thanked me for my post on patient activation.

In that post, I shared two definitions of patient activation: (1) "the knowledge, skills and confidence to manage one’s health" and (2) "a measure of an individual’s understanding, competence, and willingness to participate in care decisions and processes." As my cancer coach had explained to me in 2021, higher patient activation leads to greater self-care behaviours, better health outcomes and less use of healthcare services.

Additional information provided by my coach described the four levels of patient activation:

My friend said today: "Thank goodness I read your patient activation page when I did. I was sitting at 0 and dragged myself up to 4."

She is not alone in her cancer journey. My friend told me that her ex-husband is her new advocate and assistant. He is helping her to navigate a healthcare system that is—to my mind—way more complicated than it should be.

That got me thinking about the role of caregivers in patient activation, in other words, the extent to which caregivers can help move a patient up the activation continuum. While I didn't find something related to that specific topic, I did come across an interesting study published by the National Center for Biotechnology Information that looked at caregiver activation and the extent to which this impacts the well-being of the caregiver.

The study Caregiver activation of relatives of patients with advanced cancer notes that caregiver activation builds on the notion of patient activation, defining the former as "the knowledge, skills, and confidence of the informal caregiver to provide care for the patient." Caregivers may coordinate medical care and treatment, prevent and solve the patient's health problems, and collaborate with healthcare professionals.

The study found that the majority of relatives of patients with advanced cancer were often poorly prepared or had insufficient capabilities to play the role of caregiver. The study participants were more often at the lower levels of the activation continuum.

Many felt overwhelmed and experienced high levels of caregiver burden and numerous health‐related problems, such as sleep disturbances.

However, caregivers in the higher levels of activation tended to be partners, those who provided more hours of informal care, those who were more resilient, and those who engaged more frequently in personal self‐care practices. These individuals had less caregiver burden, fewer depressive symptoms, and better social well‐being.

The study concluded that supporting caregivers in gaining knowledge, skills and confidence to provide care to a loved one may improve their own well‐being.

I imagine that it's probably easiest to play the role of caregiver when both the caregiver and the patient are at similar levels of activation. For example, a Level 4 caregiver could get frustrated with a Level 1 patient, and vice versa. In my friend's case, it sounds like both she and her ex-husband are at Level 4—taking charge of her healthcare and bringing the various parts of the system together when coordination is lacking.

I believe that my husband—who was an active partner throughout my various cancer treatments—benefited from the fact that we had two adult children who could take on some of the responsibilities at home and that I had a broad network of family and friends who were supporting me, especially emotionally.

This study reaffirmed for me the importance of taking care of the caregivers, in addition to the patients. As I wrote in Caring for the caregivers, we should remember the family and friend caregivers in our lives—the people who are caring for ill loved ones while grappling with their own emotions, such as sadness, fear and guilt. They may not recognize their own need for support or, if they do, may be reluctant to ask for it. So we should reach out to them.