Stories of the Families Served
Part 1
My Connection with La Fundación Para La Infancia Ronald McDonald
I have been aware of the work done by the Ronald McDonald House Charity for a relatively long time. In Cleveland, I've become quite familiar with the Ronald McDonald House. I pull into that parking lot approximately 4x a year to change directions and make it to my outpatient appointments at the Cleveland Clinic Children's Building. (Yes, I do still see my pediatric specialist doctors... but, when I get back from my year abroad I do hope to move to adult services, haha!) But, even before that I somehow was aware of the support that they provide.
For any of my readers here who know me from high school or before or who are familiar with Hathaway Brown School in Shaker Heights, you might be familiar with the yearly senior class tradition of hosting a carnival to raise money for a charity selected by the graduating group of students. It is a big deal at the school. There is a theme for all of it. We host a school dance, a fun run, a 5k race, and a day of festive activities for families all in the name of raising money to donate. My year, I proposed that we name the Ronald McDonald House in Cleveland as the recipient of our donations. Although ultimately we chose another organization for the year, it did make it as one of the top two choices to choose between.
While I was in New Zealand, I also connected with the Ronald McDonald House Charity. I met with a representative in their main office in Auckland and talked about all of the amazing work that they do. We discussed the possibility of me spending time in the family room in the hospital in Christchurch, but unfortunately we never were able to work out the logistics.
And, that brings me to my connection to the foundation here in Chile. When I realized that I needed to pivot from El Salvador to Chile, I felt a bit lost and scrambled to find connections. But, the first place that I turned was the foundation. Working so closely with hospitals and families, I figured they'd be a good starting place to figure out who I should reach out to, places to explore, and possibilities that might be available to me in the country related to my project. Although I was told about other charities in the country and given contact information, it became apparent to me that working with the foundation here would be the most meaningful and impactful.
What Does the Foundation Do in Chile?
To clarify some things, in case you are unaware of RMHC, it does not serve BigMacs or have a perpetually broken ice cream machine like McDonalds restaurants. The first house was opened in Philadelphia, PA in 1974 after the parents of a son diagnosed with leukemia recognized the need for parents to be close to their hospitalized child. McDonalds became a sponsor of this project and remains the largest corporate sponsor of the charity, which gives it the name that it has.
The foundation in Chile has 3 different branches: Family Rooms, a Family House, and a Mobile Pediatric Unit. I have not had the opportunity to work with the mobile pediatric unit myself, but from talking with the foundation staff, I have learned a lot about the program. It is a medical unit on wheels that brings medical and dental diagnosis, care, and treatment to children in the most rural parts of the country.
Currently, the foundation has five operational family rooms to serve families with ill children in public hospitals. Each room has a space for families to sit and eat, a bathroom with a shower, a TV, and a lovely room assistant to help and support families. Many of the rooms also have soft couches for families to use to take a rest and all include tea, coffee, water, and some small food items for families.
The foundation also has a family house in Valparaiso. This space has a typical family room at the front and then more "home-like" amenities in the back. There is a laundry room, full kitchen, multiple bedrooms and bathrooms, and a garden terrace.
My Work and Experiences in the Family Rooms and Family House
I have now been working with the foundation for five weeks. My day-to-day experience varies greatly, but through my work I have been able to visit all of the family rooms and the family house on multiple occasions and really get to know the work done in these locations, the support offered, and the wonderful people (families and workers) who fill these spaces.
During my first week with the foundation, when I visited the rooms, I just observed. I sat myself at a corner table and I watched and listened. This was partly because I was freshly out of my Spanish classes and didn't quite have the confidence or skills necessary yet to start to talk with people in the rooms. But it was also an extremely valuable exercise. I was able to be a fly on the wall and see how the rooms worked and ran on any typical day. I saw how parents used the spaces, what was the role of the room assistant, how different situations were approached and handled, etc.
During my second and third weeks, I spoke with families. I asked about their experiences. They shared about their time in the hospital, their thoughts on the family rooms, their outlook, their areas of strength and times of challenge. This was a really meaningful and moving experience. I did not approach any families. As they came in, the room assistant informed families why I was present and said that if they wanted to talk, I'd listen. And almost every family that walked through the doors of the family rooms during those weeks, unless they were in a time crunch, sat and exchanged at least a handful of words with me.
Then, for the past two weeks, I've had one-on-one sit-down hour-long conversations with every single one of the family room assistants and supervisors in the foundation. I've spoken with 15 total workers who have shared with me the joys, the struggles, and all of the things in between that come with working in such a vulnerable location.
And, I've done all of this in Spanish. I have learned so much about the healthcare system in Chile, discovered views of illness and wellbeing, and what support giving and receiving looks like. But, I've also learned a lot about the patience and openness of people. I am extremely grateful for everyone who took time out of their days and in stressful moments to speak with me and tell me about their experiences.
In this post, I will outline what I learned from my conversations with the families making use of the foundation's facilities. Stay tuned for another upcoming post where I dive into all that I learned about those who help to keep the spaces running.
Families in the Rooms
Most of the rooms have the same rules as to which types of families are able to access and use their spaces, given their limited capacity. There is some variation though. In general, the rooms serve families with a hospitalized child or a child with a long day at the hospital, such as to receive chemotherapy treatment or physical rehabilitation services. One room, though, serves families with children who are hospitalized as well as those with ambulatory care appointments. Aside from that one room, the majority of the rooms are populated by caregivers - moms taking a break for a morning coffee or to grab a shower, dads waiting until they can switch visiting shifts with a mom (since only one parent is allowed at a time), a grandma or aunt staying with the child when the parents are working during the day.
The rooms ranged from packed, with every seat full and lots of chatter and conversation in some moments on some days to very quiet, calm, and at times empty at other times. At points the TVs played soft, classical music like what you'd expect to hear at a spa. Other times a World Cup soccer game was being broadcasted for anyone who was interested. Sometimes when the room was close to full, still all I could hear was the clanging of forks on plates or sips of hot drinks being taken. But at times there was only one person in the room and my watch would alert me of dangerously high noise levels. The rooms had a lot of laughter, some tears, frustration, and gratitude. They are multipurpose and serve many different roles for many different people at many different points along their journeys.
Experiences of Having a Hospitalized or Chronically Ill Child
Within the families that I spoke to during my time in the family rooms, some of them had just arrived to the hospital that day, while others had been in the hospital with their child for a year. Most of the parents that I met in the rooms are single mothers. Very few of the parents make frequent trips home during the hospitalization of their child. This is particularly true for families for whom the commute home takes several hours.
The situation of having a hospitalized or chronically ill child leads to loss of a significant if not total income as parents have to quit or they lose their jobs to be able to care for and spend time with their unwell child. Many families have other children at home. Parents are separated from other kids and those kids have to step up to look after household tasks, younger siblings, etc.
All of the family rooms here in Chile are in public hospitals. Going into this situation, I assumed that meant that the care received was not paid for by the families. That is not entirely true. For some situations, families did not have to pay for the medications, treatments, or tests for their child. But in other situations they did. If the hospital did not have a medication that the child needed, families would have to go out, source the medication, purchase it, and bring it in for their child. Some exams have such long wait times at some of the hospitals that some of the families told me that they had to take the child to an outside place to pay to get the tests done sooner. A mother of a child with cancer told me that she didn't have to pay for her daughter's care. But a mother of a child in the general pediatric ward told me that she had to pay for all of her son's treatments as they tried to determine the cause of his complex illnesses that ranged from extreme allergies to daily seizures.
Unless the child has a contagious illness, all of the rooms in the hospital are open and shared spaces. These rooms don't have dividers between the patients, but they do each have a chair placed beside the beds to act as a seat and a bed for the mother/father/grandparent accompanying the child during their hospitalization. Many of the wards have a bathroom for parents to use, but it is located outside of the ward, meaning that parents have to leave their child to go to the restroom. Some of these restrooms are located in spaces that cause parents to have to leave the ward and walk outside in order to access them. Many mothers expressed challenges with this set-up at night especially. None of the spaces have showers available for parents to use within the hospital wards.
Value of the Family Room
For many, the family rooms are a transitory space. A stop during the day to eat a meal, use the restroom, make a few phone calls, or lay down for a quick cat nap before going back to be with their child. Unless families had their child with them in the room or a caregiver was waiting to switch with another to be in the hospital room, most did not stay in the family room longer than an hour, generally, I observed. Moments when I saw parents stay in the room for the longest times were when they came in and took care of basically all of their own care needs (shower, big mid-day meal, moments of rest, moments of connection) all in one instance. It wasn't uncommon, though, to see parents or caregivers pop into the room multiple times during a day - to start the morning with coffee or tea, to come back later for a shower and lunch, etc.
Many described the hospital as feeling very stressful and tense. But, when families walk into the family rooms, they felt like they could take a breath. They could relax their shoulders and unclench their jaws. The rooms are designed to be tranquil spaces to give families a moment away while remaining close.
One of the biggest benefits of the family room for many of the parents was the access to a private shower. They had a place, with shampoo and soap available to them to use, to take care of themselves and focus on their needs. But this space is also well-kept and clean. One mom explained to me how much she valued having a clean, calm space as a little thing but how much it meant to her. She explained that not all of the spaces in the public hospital could be described as clean, because they are public spaces after all and not all members of the public are as considerate as you'd hope. But in the family room, it is the culture (and a rule) to clean up after using a space. Plus, the parents are more aware and primed to do so anyway due to having an ill child laying in a hospital bed down the hall or across the road.
Others spoke mainly of the sense of family and connectivity in the family rooms. They valued being greeted by name, having someone ask about their child and be willing to chat with them, the community formed with other parents in the room, being offered a hot drink or a glass of water when upset. They valued the long-term connection that remained on the good days and the bad.
Sources of Support
My project is roughly boiled down as how different countries and cultures support children and families before, during, and after the death of a child with the goal of gaining global knowledge to learn how to be able to provide the best support to individuals in these situations. So, I often find myself talking and asking about support – in both a broad and a narrow sense, as it is interpreted in different cultures and contexts. Going into my conversations here, what I was not anticipating was how difficult my questions about support would be for families to answer. I would ask a very basic question, after discussion many of the things explained above and many explained below. "Usted tiene cúal tipo de apoyo?" "What type of support do you have?"
The first response that I got from most of the families was, "Nada." "None."
In further discussion, though, most followed that immediately by saying that the family room was the only support available to them. I asked about support groups, other organizations, government assistance, family, friends, neighbors. With this prompting, a number of parents told me about the child's grandparents or aunts being of help, coworkers checking in on them, or the role of their strong faith or church community.
This repeated occurrence in my conversations made apparent the vital role that La Fundación Para Infancia Ronald McDonald plays in the lives of these families. This is the main source of support for the majority of the families that enter the spaces.
There have been so many moments over the course of my five months abroad that I've had to examine and challenge my perspective on the world coming from the United States. I've had to come to terms with all of the biases, assumptions, ways of thinking, doing, and being that come with that. When I'd hear about the lack of support or the inability of families to identify those areas of assistance and strength in their lives, if I am honest, at first I was a bit taken aback. Then I wondered if it had to do with my Spanish, wording, or the question in general. After asking some of the room workers and supervisors about this and realizing it was not a case of misunderstanding, I was then saddened. But why? As the conversations continued with these families, it was apparent that they did not feel at a loss or deprived, so why was I projecting that onto them and why was I assuming that this condition was of lesser status than what families experience in the United States for example. Without exaggeration, all of these families told me that despite the circumstances of having a child in the hospital or with a life-limiting illness, that they were pleased with their experience both in the hospital and with the family rooms. They had no serious complaints and only minor suggestions for improvement to make the process a bit more comfortable.
It is a cultural difference – as simple as that. I reflect on all the different avenues of support available to parents with sick children in the US and all of the different organizations and resources. At first I saw this as superior - my ingrained bias. But in the US, families have to wade through so many different places to find ones that meet their needs and get connected with a variety of groups to locate all of the different forms of support they desire. Here, families have a one-stop-shop. The foundation serves as emotional support, community, a place to relax, eat, and care for oneself, practical support, etc. It hosts celebrations and to mark the big occasions during the year, and it is open on all of the other days, too, in order to be by the families' sides.
Relatedly, and I will discuss this more a bit later, but the support needs in general are different. Parents here seem to have a much more optimistic and hopeful outlook during their journeys. They don't seem to sit in the negative, the worry, or the fear of what-ifs as much. My observations working with organizations and hospitals in the US is that parents are looking for spaces away from their children to express those negative emotions, to vent, or be angry, upset, or any other range of emotion that may arise when having a gravely ill child.
Even when families said to me that they didn't have any support, there was no negativity in this statement. It was a matter-of-fact to them. They coped and managed and cared for a child who was ill and they were making it through by themselves. There wasn't a sense of loss, nor necessarily a sense of pride. It just was.
Hope
In the US, as I mentioned in a previous post, working with people facing illness often means making space for them to talk about what really stinks about the experience and what they would change if they could. When I first started my conversations in Chile, I asked families what they would change about the hospital experience or the services in the family room if they were able to do anything. Some said better places for the parents to rest. Others said longer hours for visiting and more space for it. But that was about it. Most said nothing. So eventually, I stopped asking. It didn't fulfill the goals for my project nor did it meet the needs of the families that I spoke to.
I also, early on, asked families about what they did to look after themselves on hard days. A resounding theme was that they focus on the present and the positive even in the hard moments. There was a sense of always putting one foot in front of the other and taking things one step at a time.
One of the most surprising themes that came up in these conversations were feelings of hope and positivity. Throughout the discussions, many parents thanked God for what they had or the strength for getting to where they were. They talked with pride about the resilience of their child. And, many spoke of their child's relatively good health – their children who had been in the hospital for months or who were battling cancer at the moment.
One mother whose child was preparing for a bone marrow transplant, told me their story. She said that while this has been a challenging process that she didn't intend to live through, she felt at peace with it because she knew her child would be okay. She spoke about how other families had greater suffering and had children in conditions worse off than hers. She felt confident her child would get better. This section of our conversation concluded with her saying that she was grateful that her child, who had been in treatment for cancer for a quarter of their life, had their health.
Check out part two of this series where I discuss my conversations with the Family Room Assistants and what I learned from them, here!
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