Kair-Giver #2: The Power of Kairgiving

When my family first started learning about psychosis and what treatment for it looks like, we had a thousand questions. Now, I can confidently say that after about three years, we’re up to a million.

This should have been a comforting thing for me. After all, one of the first things I was taught as a researcher was to seek the questions more than the answers. It’s a truth that felt easy to accept in academic settings, but became incredibly hard once the research became personal. Uncovering all of the answers as quickly as possible felt non-negotiable. To make matters worse, what I found in that pursuit was an incredible gap in what is known about the disease—as I’m sure you have, too.

Seeking answers started to burn me out, and led to very little information I felt capable of actually acting on. That was until I realized another important truth: to be great caregivers for our loved ones, we don’t need all the answers in the world. We just need a few very relevant ones.

That was when I started digging into the literature in a different way, and learned more about topics relevant to caregiving like psychoeducation and history of presented illness logging that dramatically changed my perspective. I now take the stance that despite how powerless these situations might feel, we are incredibly well positioned to influence the outcomes of our loved ones.

The advantages we tend to have as caregivers are that of time and insight. We likely see our loved ones quite often and know them down to the minute detail. We’re incredible at picking up on the subtle yet concerning deviations from their baseline that need addressing. This gives us the power to be great advocates for their ideal treatments, notice relapse warning signs early, and be useful proxies in times of emergency.

The results of our involvement in their care can be pretty drastic. In fact, an aggregate analysis of 25 studies found that including relatives in schizophrenia treatment reduces relapse rates by 20%.(2,3) Moreover, a 21-year follow up study found that predictors (such as symptoms, baseline functioning, early treatment response, demographics, etc.) explained between 28-34% of variations in outcomes for patients long term.(4) This suggests how important tracking the full course of a person’s care journey is in tailoring effective treatments. When we consider how different each person can experience psychotic illnesses, this becomes especially true.

We don’t need to know everything about psychosis to help our loved ones—it seems we mostly need to know the information about our loved one that matters and make use of it at the critical moments. If we do, it could completely change the course of their outcomes.

With this in mind, it behooves us as caregivers to become good record keepers. No single brain can hold the years of relevant information with good accuracy. So, it becomes important for families to keep a living, breathing record of the care journey if we’re really committed to seeing better outcomes.

As of right now, families don’t have a great way to store this data or pass it along to the relevant providers—so, I’m building an app to change that. If I can empower other caregivers to be incredible support systems for their loved ones, maybe there’s a world in which recovery becomes more of a reality. If you’re interested in joining the waitlist, please drop your email below.

In the next post, I’ll speak a bit about the evidence base surrounding early warning signs and relapse prevention plans. Until then, please keep hope alive and always keep kairing.