What it means to give and get support
My Work with La Fundación Para Infancia Ronald McDonald: Part 2
RECAP: 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.
If you haven't read the first post in this series about my expirerencs working with the foundation here in Chile, I highly recommend that you do so first. In that post, I cover what I learned from the conversations with the caregivers in the family rooms. This blog builds off of that one, explaining who provides those services to the families in the rooms and who ensures the proper functioning of the spaces as tranquil, comfortable, and beneficial to those who need it. Below, I talk about what I learned from the 15 conversations I had with Family Room Assistants from the foundation. I discuss what it looks like day-to-day for thees workers to provide support, what motivates them to go to work every week, the joys, and the challenges.
Room Assistants
Who Chooses to Work at the Foundation and Why?
As a generalization, the people who choose to work for the foundation have a desire to give and help. However, the vast majority of the room assistants had no prior knowledge of La Fundación Para Infancia Ronald McDonald before coming across the job listing on the internet. Because of my position as someone who is pretty involved with pediatric healthcare and healthcare support organizations in the United States, I am uncertain about how well known Ronald McDonald House Charities are to a broader public. But, here in Chile, unless an individual has a family member or close friend working for the foundation or has had a personal experience with the hospital and family rooms, it is pretty unknown. So, for most, they chose to work at the foundation, first as a job and a way of making an income. But second, it was a way to have work that felt like it mattered and made a difference.
Beyond having a desire to serve, even without an individual experience in the family room, many of the workers shared that they were able to empathize with the challenges the parents were facing due to health issues that their own children encountered. They could relate and understand on a deeper level. They knew what type of support was needed and how to offer it, even if at times they were uncertain about how to handle certain situations or worried about saying the wrong thing.
Several of the workers came to work at the foundation after doing related jobs. Some were school teachers, others trained as social workers. But, those with more formal education in these settings explained that the qualifications for the job come from the day-to-day. It comes from within and personality. Experience for working in the family rooms can be gained by interacting with all kinds of people on the street. Necessary skills for the job are the abilities to be compassionate, empathetic, patient, understanding, a good listener, and a problem-solver who knows what problems can't be solved.
Many of the room assistants commented on how they love the atmosphere of collaboration and teamwork within the foundation. They said that they felt a familial connection with the other workers and the families that visited the rooms. The hours of the job allow them to have time to spend at home with their own children and families too and pursue other hobbies, activities, or jobs.
Throughout my conversations it was repeated over and over again by the room assistants that they love their job. They told me that it is more than a job to many of them. It is something that gets them out of bed in the morning, gives them purpose, gives them reason.
Their View on the Value that the Rooms Offer Families
Many of the room workers commented on the same things as the families in terms of what value the rooms offer: a place to rest, eat, connect, and take care of oneself. They also discussed how the rooms offered a listening ear, a friendly face, genuine care, and interest. The rooms provide compassion, accompaniment, support, and a sense that the families are not alone.
The family rooms and house also have the ability to help the families, materially, much more than any one room assistant could. Many commented on how they wished that every hospital serving children in Chile would have a family room and that more people knew about the organization so that more families in need could benefit from the services. The foundation has the ability to offer tea, coffee, food, shampoo, air conditioning, a place to eat, a place to shower, for some a place to sleep, a warm blanket, etc. The impact of this should not be underestimated.
In my conversations, I was told that Chile does not have a big culture of volunteerism. Many people here are working to provide for their families and that is their main priority. One worker told me about a visit to the charity in Argentina and seeing volunteers going into patient rooms, striking up conversations, and telling about the family room and what it provides. They told me that they could not see that happening in Chile.
How They Support Families
One of the biggest ways that the room assistants provide support is by being there. I was told about how important it was to remember the names of the family members and the sick child, remember details of conversations, and ask about them the next time. The room assistants are skilled in reading body language and observing situations, knowing when to intervene and offer support through a conversation or a beverage and knowing when to give space and peace.
The main way that the room assistants told me, and that I observed, that they offer support is simply through listening. Giving the families a space to talk about what they want, about their child, about life outside of the hospital. Some of the assistants always ask how the ill child is doing when parents arrive in the room, others ask about other topics unless the parents want to discuss the hospital updates. Each assistant has their own approach and style, but they all report that listening is a main aspect of their job. Often, this does not mean responding back. There is no response, outside maybe a hug, a tap on the shoulder, or a hand on the arm. And, when they do feel like a response is warranted they told me that they speak from their heart and a place of compassion. Many reported that they place themselves in the parents' shoes and share what they would imagine would be comforting in that moment or offer the support that they would like the receive in the same situation. Not many stressed too much over the details of saying or doing the wrong things when taking these approaches.
Finally, many also acknowledged the limits of the supports that they can offer. During many of the conversations, a phrase along the lines of "I'm not working as a doctor, a psychologist, a therapist, or a social worker," was uttered. The majority of the room assistants commented on their inability to solve the healthcare issues of the child or take away any depression a parent might be feeling. Many said that they intentionally make a point not to say that things will be okay or that everything will work out. They know that they don't know that to be true and likely would be telling a lie. They talked about their typical inability to offer any advice or guidance in general. But, what they could do, and do well, was listen, accompany, and show that they were there and that they cared.
The Best Part of the Work is Sometimes the Most Challenging, Too...
Two questions that I often asked back-to-back in my conversations was what was the room assistant's favorite part of the job, and what was the most challenging part to them. Surprisingly, the answers, more often than not, were the same across the room assistants and related to each other. Both had to do with listening to family's stories.
For many, it was their favorite part of the job. The ability to connect with families, be there for them, get to know them was what made their job what it is. But, emotionally it was also challenging at times. One of the room workers told me that this job has taught her a lot of really sad things about life. Through their job, they share in the pain of the reality that children get really sick and sometimes die. And this isn't a fact that many of us like to think about or want to acknowledge.
Many of the workers were called to the job because of their hearts and a desire to help. But, that often correlates with feeling things deeply and being impacted emotionally by these sorts of experiences. After seeing families day-in and day-out, sometimes meeting the child and sometimes not, but nonetheless forming connections, it is hard for the room assistants to be emotionally numb to their suffering and heartache.
Many try their best to leave work at work and home at home; to leave the emotions of the day in the office. Some reported greater success than others with that. Those who struggled said the emotional burden of knowing the pain that these children and families endure is a lot to carry. They break down in the comfort of their home, feel the stress in their bodies, and at times are filled with depression or anxiety. By the end of the year, they are tired, even though they report most of the day at work is spent sitting at the welcome desk. It is an emotional tiredness, from which they need to recharge and recover before diving into a new year.
Those that have a better ability to separate work and home explained that they remind themselves that although they can support these families, they can only do so to a certain ability and to a certain point. They can't solve the problem or fix any issues. They remind themselves that when things go wrong it is not their fault nor was it their responsibility to make sure that no difficult emotions would be felt. Many discussed telling themselves that the stories and experiences are not their own and they can help but do not need to take on the weight of it all.
Others shared that they aren't impacted as emotionally by the negative events because they serve as a reminder to be grateful for what they have and their ability to help. Some told me that they look at every moment and experience as something to learn from and try to gain a lesson from the hard days. Another room assistant said that even on the hard days they are reminded of how strong and resilient children are and how wonderful and powerful that is. Others turn to faith and gain comfort in a belief that it is all part of a grander plan.
Dealing with Loss
Given the research on death and grief that I have read, when discussing these topics, I always use the terms death, dead, or died. Further, given my limited Spanish abilities, I did not know any other way to say this in the language. I did not know the equivalent of lost or passed on or if it would even convey the same meaning. I noticed fairly quickly, though, that when I talked with the room assistants about their experiences supporting families of children who had died, in their response "mourió" always became "falleció" - passed away.
The approach that family room workers took to supporting families after the death of a child was the same approach that they often took to support any other family in the room. They listened, offered a hug, brought a glass of water, etc. Most of the time, though, they learned about these deaths not in person. So they could simply engage in a foundation-wide ritual of writing the child's name on a little remembrance card to have behind the desk.
Many didn't have personal rituals following the death of a child of a family they met in the rooms. Some would say a little prayer or have a quiet reflection. One stayed in contact with the families and would message occasionally to check in and let them know that they are not forgotten. One would take a moment to think about the child in a better place and at peace, which aligns with her Catholic faith.
Some expressed a desire to do more, if they could. They wanted to send a token of condolence. A card on the child's birthday. To speak a few words about the family and the impact of the loss on them with their coworkers. Maybe opening a conversation to these sorts of rituals following death may cause a few of them to do one of their ideas the next time they feel moved to do so. But, many felt very content with the customs in place and had no desire to change them.
Self-Care for the Family Room Assistants
In my conversations, I also realized that "self-care" is not quite the same buzz word here as it is in the US. That is not to say that the concept is not as important here, but that term as I used it seemed a bit more foreign. However, in my conversations, I discovered all kinds of self-care mechanisms in place for the room workers, even though most said that they don't really do anything to help feel better or take care of themselves after a tough day. Asking about hobbies, past-times, things done for relaxation and recovery seemed to be more appropriate questions. Answers ranged from sitting in silence to listening to music, from gardening to shopping, from mediation to going for a run.
Support for the Support-Givers
Throughout my conversations, I was in awe of the strength, resilience, and compassion exhibited by each and every one of these family room workers. Given that my project is on support, at some point in every one of my conversations I flipped the script and I asked about the support that the family room assistants have themselves. Again, some reported none, others had a list, some fell in between. But I also asked how they could feel better supported.
No exaggeration: Every single one of them desired to be listened to themselves. They shared that they spend all day listening to families and supporting them, but they rarely get the opportunity to talk and have someone listening intently back. They desired to have access to a psychologist or other type of therapist to help them reflect on their own experiences in the family room, within the hospital, and in their lives. They wanted to know that there was someone waiting there for them to offer a listening ear, a glass of water, and maybe a hug, too.
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