The Post-It Note Version.
connecting the children of brain tumor patients with neuro-oncology providers as an act of love.
Project Partners // Abby Marks
Project Timeline // Fall 2021 - Spring 2022
Milton Marks Family Camp is a camp and free resource designed for brain tumor patients and their families. Milton Marks Family Camp was started by Abby Marks in honor of her husband who passed away from a brain tumor. She recognized the immense pressure that a brain tumor diagnosis places on the entire family. The camp occurs over a three-day weekend offering opportunities for families to relax and connect with one another through workshops, therapy, and activities.
The camp has a profound impact on not only the families who attend, but the large team of volunteers. The experience helps contextualize the complex and challenging experiences that patients, caregivers, and their children undergo. The goal of this work was to identify an unmet need in the camp’s service offerings that could help grow the impact of camp.
Discovery
Many incredible support programs are focused on providing excellent patient-centered care, and the truly novel extend their support to caregivers as well. Milton Marks Family camp goes one step further by attending to the needs of the children of brain tumor patients.
For many of these children, the majority of their life has revolved around the care of their ill parent, and given the financial toll that brain cancer takes on these families, many children are stripped of traditional experiences like summer camp.
I began my work with interviews to better understand the experience of camp and the impact it has on patients, families, and volunteers. I was particularly struck by what camp meant to staff at UCSF who generously donate their weekend, often taking unpaid time off to attend.
“Camp is an extraordinary opportunity for me to spend unstructured time with my patients and their families, and to really get to know them as people in a way that is simply not feasible within the confines of a clinic visit.”
- Neuro-oncologist
“Being with the families, as well as the other dedicated staff members, helped to brighten the light within me. It’s actually challenging to capture it in words. It’s like chasing a rainbow.”
- Neuro-oncologist
It is a time of reflection, connection, love, and understanding for the families. It gives the patients and caregivers a time away from the stress of their lives in an environment where people have an unspoken understanding with each other.”
— Volunteer
Although the goal of the project had initially been to grow the impact of camp, through initial research, it was clear that the many benefits of camp hadn’t been clearly measured in a way that could translate value back to UCSF. The camp is operated entirely by unpaid staff, so even having the hospital pay medical staff to attend would demonstrate recognition of the immense value the camp provides.
We began the ideation phase by generating a series of “how might we” questions. A sampling these questions is below.
• How might we create more opportunities for medical providers to deepen their empathy?
• How might we promote recovery for camp staff and volunteers?
• How might we “prescribe” camp to the patients and families that would benefit most?
• How might we quantitatively measure the impact of camp?
• How might we streamline the fundraising and planning of camp?
• How might we reframe camp as a social support service?
We generated over one hundred ideas from demonstrating improved care outcomes to turning camp into a gift that doctors can give to patients.
In mapping out the stakeholders involved in camp, we realized that there were two stakeholders that never interacted -- the children and the doctors. This led to the idea that during camp we could connect these groups and give them an opportunity to “interview” one another, hopefully deepening the medical providers’ empathy and increasing the trust of the families.
Ideation
Dr. Jenny Clarke, Dr. Jenny Taylor, Dr. Susan Chang, and Dr. Shannon Fogh were the four doctors who participated in the interviews. Each one had an opportunity to sit down with a different age group of children ranging from four years old to thirteen years old. The children brought questions to the interviews, but so too did the doctors, seeking to better understand the experience of what it is like to have a parent with a brain tumor. Below are a few exchanges that occurred during those interviews.
So how do you feel when you have to break the news to someone? Do you ever feel numb when having to do that?
I think about how we interact with patients as flexing muscles. So I think that if you are numb, you don’t learn how to improve or flex that muscle. I think there is a balance between the two. You don’t also want to be somebody who, you want to be that rock and support, and not be somebody who might start crying and not be able to hold in and answer the questions.
Is my mom, is my mom getting better?
Getting better? What do you think?
I don’t really know.
You don’t really know. How’s she feeling?
She’s really just, it’s just like, she’s really just, she gets angry very easily.
She gets angry really easily sometimes? That’s got to be scary. You know what, I don’t think she’s doing it on purpose. Sometimes there are things-
I know. I know she’s not doing it on purpose.
That’s good. That’s good you know she’s not doing it on purpose. I know it can be hard sometimes when mommy does things or says things that can be unexpected.
Apparently, yeah.
And how do you feel when that happens?
Just sad and scared.
Yeah, sad and scared.
And what does your daddy do when that happens?
Well, do you want me to tell you the story?
Okay.
Well first, I was just sitting, my mom was sitting outside, gardening. And she took a break and asked me to come outside and sit with her. And I came outside, and she started to get really hot, and then she was crying and she cannot even talk. I asked her if she need my dad, and I got my dad.
Good. That was the right thing to do.
Interview
Results
Alongside the interview, we conducted a survey before and after camp with everyone who attended. Our goal was to better understand how both the interview, and the camp experience overall, impacted the empathy between families and their medical providers. We used two established survey instruments -- The Jefferson Empathy Scale, which measures medical provider empathy, and the Patient Perceived Empathy Scale, which measures how much empathy patients believe their medical provider has for them. We administered the survey before and after camp in hopes of measuring how, if at all, attitudes changed.
Although we didn’t find any statistically significant increases on either the Jefferson Empathy Scale or in Patient Perceived Empathy, initial scores collected prior to camp were already quite high.
We did however find a significant increase in the amount children reported feeling like their parent’s medical provider considered their well-being. Before camp, children reported on average a three (somewhat disagree) on a seven-point Leichter scale, whereas after camp this average jumped to a six (agree). 80% of the children reported that the interview experience helped them to feel more comfortable with their parent’s doctors, and 100% recommended that we do the experience again in future years of camp.
Another statistically significant result was the reduction of burnout (as measured by the The Maslach Burnout Inventory) amongst medical providers. This was surprising, due to the long and emotionally intense days of camp. However, we found this promising, given that this could be used as evidence to encourage hospitals to fund a program like Milton Marks Family Camp.
We still have so much to do. The interview reinforced the commitment to helping the children of families coping with a brain tumor.
— UCSF Medical Provider