Caregivers of critically ill kids find voice in community and each other with photo narratives

Sep 18, 2017

An innovative new program is helping those who care for young, critically ill patients express themselves and help others understand their struggles.

Among the 80 or so families in Hospice Buffalo’s “Essential Care” program, there are many caregivers who often feel misunderstood and disregarded. They care for children as young as four and as old as 17, each with life-threatening illnesses, while they, themselves, are anywhere from the relatively young ages of 28 to 56.

Kate Levy is a clinical researcher at Palliative Care Buffalo, working on the Pictures of Meaning Project.
Credit Avery Schneider / WBFO News

“When you hear the word ‘caregiver,’ what you think is somebody who is caring for an elderly spouse, or an elderly parent. You don’t necessarily think of somebody who’s younger,” said Kate Levy, clinical researcher with Palliative Care Buffalo. “And even when you hear someone say that they’re a caregiver to a child, they just assume that’s parenthood. So they get overlooked a lot, and their struggles get overlooked a lot.”

Through an innovative new study, Levy and her team are trying to give these families a voice in the community they otherwise don’t have. Modeling their efforts on a project at the Roswell Park Cancer Institute, they began the Photographs of Meaning Program – known affectionately as POMP.

The program merges the two intervention styles of meaning-centered psychotherapy and photo voice. But in their traditional formats both methods tend to be time-consuming. Levy’s team knew they had to do it in a more efficient way.

“It would be extraordinarily difficult for them to give up that much time to come here, to travel, to sit here for an hour or so, to do some sort of group or individual sessions. That would mean leaving the person that they’re caring for, possibly in the hands of a nurse or a different family member. It’s just something they don’t have time for. The burden is too great for them already. So we knew, right off the bat, it had to be social media,” said Levy.

POMP teamed up with the Buffalo-based app PIXSTORI, which lets users combine photos with spoken or written narratives on mobile devices. Over the course of nine weeks, caregivers were given prompts to explain what they deal with in every-day life.

These are excerpts from the narratives of various caregivers:

“The first word that comes to mind prior to being a caregiver is the word freedom…”

“…he was in the hospital over his 13th birthday and he was bummed.”

“After he is diagnosed – when he couldn’t move, when he couldn’t walk – that’s when I realized that those moments were little but…I craved those moments.”

Photos in the POMP program are accompanied by spoken and written narratives.
Credit Palliative Care Buffalo

Levy has been working in the hospice and palliative care environment for nine months. But even with the exposure she has, there were things that surprised her in the POMP narratives.

“It’s very different when speaking with families with children than it is going to our in-patient unit and seeing somebody who’s lived a very full life,” explained Levy. “It can be almost kind of jarring at times to see someone who’s my age who’s a caregiver to somebody whose life is drastically shortened by their circumstances.”

One narrative in particular stood out as one of the most illustrative and intense depictions of what life is like for a caregiver.

This photo shows the medical equipment and rolling suitcase a caregiver describes in her narrative before medical alarms sound, calling her away from her recording for POMP.
Credit Palliative Care Buffalo

“His emergency go-bag that has all of his life-saving supplies is always packed next to his bed and his rolling suitcase that goes everywhere with him is also always packed with extra pain meds and seizure meds, extra medical supplies, a pair of clothes…”

The narrative was interrupted by sounds of medical equipment alarms in the background, and the caregiver simply said, “Oh!” and paused the recording. She returned later with the initial intent of starting over.

“Well I was going to erase this post and redo it, but I figured – this is the role of a caregiver. My son, you know, while I’m doing this – I don’t have a nurse right now – he was just having an apneic seizure. So I had to put this on hold and go bag him with oxygen because he was purple. So…where did I leave off?”

While the goal for POMP, all along, has been to give caregivers a voice in the community, it’s also serving another purpose – giving caregivers a shared experience with each other.

Levy recalled, “We did have a text from a caregiver the very first week, who literally texted and said, ‘I’m literally sitting at my computer right now, crying. I’ve never seen anything like this before. I didn’t know other people felt the way I did.’”

An exhibition of the POMP photo-narratives is on display at the Hospice Buffalo campus in Cheektowaga, and a virtual display is now online. Levy believes it’s important that the community experience it, “to see something that they don’t see very day, or don’t necessarily understand or maybe are a little afraid of.”

“I think that it will be good for just about anyone who wants to see it.”

One caregiver shared this picture of her seven year old daughter, and shared a narrative about how she has found new strength in the experience of caring for her.
Credit Palliative Care Buffalo

Those who see the POMP narratives from the outside might have the same experience one of its caregivers did:

“Oh, it has been hard and there has been lots of challenges, but I love my girl and I have learned invaluable lessons along the way. These truths have changed me and I am thankful for the changes.”