‘PhotoVoice’: The softer side of Parkinson’s clinical studies
In the six years since my Parkinson’s diagnosis, I have signed my life over to more than a few studies and clinical trials. So far they have been interesting, aggravating, sometimes embarrassing – but all for a good cause, right?
A recent study I joined, called PhotoVoice, is one that I particularly enjoyed.
PhotoVoice isn’t the kind of medical study where you’re being poked with needles, ingesting mysterious unmarked pills, or doing odd things like mailing stool samples to the clinic.
(I’ve done all of the above, and you can read about those and other escapades here.)
Improving understanding
Rather, it takes a reflective approach, with participants sharing their Parkinson’s journey by snapping photos representing key moments as well as challenges of everyday life with PD.
By doing the study, director Dr. Mishy Roy hoped to encourage richer, more meaningful dialogue between patients and medical care providers.
The results were on display recently at a Chicago-area conference about GI health and Parkinson’s. Those attending could visit booths at a mini-expo, then meander through the PhotoVoice display.
To qualify for PhotoVoice, you needed to 1) have PD, 2) live in the U.S., and 3) be able to take photos and share them. Not exactly difficult, and I was a shoo-in! Thus I became one of 50 people submitting photos and stories.
At the display, I spent time looking at the photos that were featured. Each was poignant and purposeful.
Some were veritable works of art and received top billing, like this photo taken by my pal Cat Renar, a gifted photographer. She confronted the topic of pain.
(Cat has started her own project that will feature photos and text on real people with Parkinson’s.)
Cat, left, and Mishy got to be friends through the study.
The display showed collages of photos that used symbolism to describe what having Parkinson’s can look like.
Some stories were included in the display, too. Since a narrative that I submitted made the cut, I’m sharing it here, along with a selfie of my grandson and me.
“I cannot carry a youngster on my back anymore. If I fell and a grandchild got hurt, I’d never forgive myself. I’ve never fallen, and I don’t want to with a precious baby in my arms.”
The photo was taken during less-complicated times, alas.
Themes discovered
Among her findings, Dr. Roy listed some core themes across the photos submitted.
- Loss of physical abilities and adaptation
- Medication dependence and management
- Uncertainty and future planning anxiety
- Social connection and isolation
- Safety concerns and fall risk
Do any of these topics resonate in your own Parkinson’s experience? Answer in the comments below. Or share your own narrative if that feels right.
The study poster on display detailed the results.
Other similar studies
This wasn’t the nation’s first PhotoVoice study. The concept was developed in 1992 based on the idea that images combined with narratives can be used to express community and individual needs and concerns.
Studies have been done at University of Texas and in the UK. It’s a qualitative study with little math and no experimentation involved. This site explains the process well.
PhotoVoice even has its own Wikipedia page.
My experience with PhotoVoice was very positive. The instructions I received for the study explained that specialists in clinics tend to focus on physical symptoms — things that might place their patients at risk.
Through patients’ photos and stories, the study could help health care providers better understand what it means to be living with Parkinson’s.
“You are so much more than your symptoms,” the instructions state.
Indeed we are.
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