The Child Life Program is a specialized service providing play opportunities for patients of the Kentucky Children's Hospital and their families. Play helps a child continue his or her normal growth and development and eases the stress families experience while the child is in the hospital.
Jennifer Guilliams, Child and Family Life Coordinator for Kentucky Children’s Hospital (KCH) is here to discuss the UK Child and Family Life Program and how it helps patients and families navigate their hospital visit.
UK Child and Family Life Program
Featured Speaker:
Jennifer Guilliams, CCLS
In summer of 2017, Jennifer Guilliams became the Child and Family Life Coordinator for Kentucky Children’s Hospital (KCH). She manages a growing department of 10 child life specialists who cover the entire Children’s Hospital as well as UK Healthcare, working to strengthen family services at KCH to ensure that patients and families have the support they need to heal faster. Jennifer has also been an active member of the Association of Child Life Professionals, serving as chair and committee member for several student focused task forces and professional committees. Transcription:
UK Child and Family Life Program
Melanie Cole (Host): Bringing your child to the hospital can be stressful for you and your family. Here to help us understand the difficulties a child may experience while being hospitalized is my guest Jennifer Guilliams, she’s the child and family life coordinator for Kentucky Children’s Hospital with UK Healthcare. Jennifer, first tell us what is a child life specialist?
Jennifer Guilliams, CCLS (Guest): So, a child life specialist is a professional that has been trained both from a developmental standpoint and from a medical standpoint to understand how children see and view the hospital and to help children get through it – get through their experience in the hospital in a way that decreases their anxiety, helps them cope better and helps them understand what is actually happening to them when they are in the hospital.
Melanie: Then tell us about the child and family life program at KCH and how it helps patients and families.
Jennifer: So, our program at Kentucky Children’s Hospital is – we started off based in the playroom, because children learn about the world around them and they process the world around them through play. So, we use play as sort of our tool. I often say it’s our stethoscope to get us to be able to understand first of all where a child is coming from and help them understand what’s happening to them. So, our Kentucky Children’s Hospital child life program is based in both the inpatient units. All of our inpatient units, we have specialists, we have specialists in our pediatric sedation program. We have specialists that work our pediatric emergency department and in our neonatal intensive care unit and also with our hematology oncology population. We also are consulted anywhere within Kentucky Children’s Hospital where a child could possibly be touched. So, we go to radiology procedures, we work with our cardiology program and sometimes we even help children of adult patients that are struggling with what’s happening to their parent.
Melanie: So, as a parent, how do we prepare our children for what to expect while hospitalized? How honest should we be with them about what they can expect if something might hurt? Tell us a little bit how you work with the family, parents and even the siblings about what to expect at how to talk to that child about that?
Jennifer: That’s a great question and a very long question for me to try to answer. So, when we work with a child and we work with a family and a family says so tell me what am I supposed to share with my child; the first thing that I always tell parents is that they need to think about what their child wants to know. Some children may be the type - have the type of personality where they want to know everything that’s going to happen to them and they will do better and they will cope better and they will understand better if they are given a lot of details. And then some children do better when things are very simple. They get just this is going to happen right now and we are going to get through it and we are going to help you get through it and they are distracted from it. So, it’s really individual-based. So, for a parent, if a parent is asking me how much do I tell my child and what do I tell my child; the first thing that I always say is ask your child what they want to know and start very slow and simple. Most children will give you a que as to whether they have either had too much information or they want to know more. If they have had too much information; as you start talking to them about a visit to the hospital or what they are going to experience, they will distract themselves. They will start talking about something else or they will move off to some other topic and you know that that’s kind of your que to say okay, they have gotten the information, they are processing it and we will move forward. Other children that need to know a lot of information will start asking more questions. I always tell parents that it’s important for you to be honest. Don’t tell a child if something is not going to hurt, if you don’t know whether it will or not. So, being honest and saying it may hurt, it may not hurt but most thing sonly hurt for a little while and we will figure out how to get through it and we’ll help – I’ll help you be there and I’ll hold your hand and we will cope through it.
So, I think even with children, the best thing is to be honest. And also, always give them an explanation as to why this is happening. This is happening because we are trying to help your body heal and we are trying to help you feel better. This is not anything that the child has done. There is no blame to place on the child for this. But we are here to help them and even though some of the things that we have to do as physicians and our physicians and our nurses have to do, and we have to do in the hospital can sometimes be painful; everything has a goal behind it. We are trying to help the child’s body heal and to help them see the positive that they can do.
One of the other things that we always talk about is when they are doing something and when they are experiencing hospitalization, or they are experiencing a treatment that’s painful and they are struggling with it is just to let them know that it’s okay for them to hurt. It’s okay for them to feel the way that they are feeling because this is a – this can be a scary place, it can be very stressful and what they are experiencing can be painful. So, to give them the opportunity to be able to express their feelings the way the need to express them and tell them that that’s okay, that they are still doing a really good job of helping and they are still doing a good job being present and being here.
Melanie: What items should or can kids bring to help them with some of this integration into the hospital situation to make them feel more comfortable? Can they bring blankets and stuffed animals and things?
Jennifer: Absolutely. I think that is the very first thing to always tell a parent if they are going to bring their child to the hospital, brings those comfort items. Anything a child sleeps with, anything a child uses when they are feeling sad or when they are sick. Absolutely bring those things. If the child knows or if a family knows they are going to come and stay for a long time; or are anticipating a couple of days or two or three days, bring that favorite pillow, bring your pillow case. Kind of make the room more child friendly and more comfortable for that child. We all know that we all sleep better when we are in our own bed so if that child has those familiar items with them; they are going to be able to help comfort themselves in an appropriate way.
Melanie: And what about kids that might have to miss school? As this program, are there school, are there tutors, what about kids that are hospitalized for quite a bit of time?
Jennifer: So, through Kentucky Children’s Hospital we do have school services. Our school services are homebound based, and it is through Fayette County. So, any child that’s going to miss five or more days of school can refer to our school teacher that’s here through Fayette County and get a homebound application started and can be seen while they are in the hospital for a couple hours a week to try to make sure that they are up to date on their assignments and that they get the proper paperwork filed in order to be counted for school.
Melanie: What about children in isolation Jennifer? Are they – do they have a special circumstance and how do you as a child life specialist work with children in isolation, so they don’t feel quite so isolated?
Jennifer: Sure so, we have entered into this world where there are some illnesses and those kinds of things when children are experiencing them that they can’t be out, and they can’t come to our playroom and they can’t have normal activities like some of our other children. So, we try to make sure that those kids that can’t leave their rooms because of their illness don’t miss out on those experiences that other kids would get. So, as I said earlier, we are sort of – we start in the playroom. So, play is our core and we move from there. So, if a child is on isolation, the very first thing that we try to do is make sure that they have some normal items in their room. Depending on their age, it could be musical instruments, it could be rattles, it could be toys of all kinds, Barbies, cars, all of those great things or for teenagers, it could be expressive things. It could be video game systems. So that they have first of all something that makes them feel normal and second of all, something to kind of decrease their stress and give them the opportunity to just play and be diverted from all the hospital things.
The other thing that we do for kids that are on isolation is sometimes we will even schedule private playtimes in the playroom so that we can actually make sure that the child gets the opportunity to get up, move around, get out of the room, but they are not exposed to anything that could make them more sick. And so, we will shut doors and shut our playroom doors and provide those private playtimes for those kids. And again, like I said earlier, our job is to help children cope with being in the hospital and help them understand so as child life specialists, if we know that a patient needs more explanation or is having a hard time coping with a procedure or something that’s happening to them; we go in the room and we do play sessions with them in the room. Our play sessions are very medical based in the sense that we will bring in a medical play doll, we will bring in all the medical equipment they may see and let the child just feel it, touch it, manipulate it, understand it and work through some of those things that may be causing them stress, causing them fear and try to figure it out.
Melanie: Wrap it up for us and what a wonderful job that you have helping children make the hospital a little bit less scary. So, give us your best advice, what you would like the listeners to take away from this as far as the child and family life program at Kentucky Children’s Hospital and including siblings and parents, getting them all involved to help the child understand what’s going on.
Jennifer: I think that my best advice to parents that are bringing children into the hospital or are experiencing that is to ask questions and ask for services such as child life, music therapy, we have a canine companion program, a canine counselor program here at Kentucky Children’s Hospital. Those kinds of things that will just make life a little bit normal for them. Look for those opportunities to ask for those services. We do our very best to try to see every patient bur of course we have lots of patients and not a lot of child life specialists to go around to see every patient so asking for those things and advocating for your child. Be your child’s voice, not only the child that is in the hospital, but the siblings. If you need support and you are having some issues, please ask for those things. We do have those available and we are very happy to make sure that children get out of the hospital as fast as possible with the least stress and anxiety as they can have while they are here.
Melanie: Thank you so much Jennifer for that great information and for your expertise and sharing it with us today so that parents and siblings and children can understand what’s going to happen at the hospital and get involved in some of that play. Thank you again for joining us. This is UK HealthCast with the University of Kentucky Healthcare. For more information, you can go to www.ukhealthcare.uky.edu, that’s www.ukhealthcare.uky.edu. I’m Melanie Cole. Thanks so much for listening.
UK Child and Family Life Program
Melanie Cole (Host): Bringing your child to the hospital can be stressful for you and your family. Here to help us understand the difficulties a child may experience while being hospitalized is my guest Jennifer Guilliams, she’s the child and family life coordinator for Kentucky Children’s Hospital with UK Healthcare. Jennifer, first tell us what is a child life specialist?
Jennifer Guilliams, CCLS (Guest): So, a child life specialist is a professional that has been trained both from a developmental standpoint and from a medical standpoint to understand how children see and view the hospital and to help children get through it – get through their experience in the hospital in a way that decreases their anxiety, helps them cope better and helps them understand what is actually happening to them when they are in the hospital.
Melanie: Then tell us about the child and family life program at KCH and how it helps patients and families.
Jennifer: So, our program at Kentucky Children’s Hospital is – we started off based in the playroom, because children learn about the world around them and they process the world around them through play. So, we use play as sort of our tool. I often say it’s our stethoscope to get us to be able to understand first of all where a child is coming from and help them understand what’s happening to them. So, our Kentucky Children’s Hospital child life program is based in both the inpatient units. All of our inpatient units, we have specialists, we have specialists in our pediatric sedation program. We have specialists that work our pediatric emergency department and in our neonatal intensive care unit and also with our hematology oncology population. We also are consulted anywhere within Kentucky Children’s Hospital where a child could possibly be touched. So, we go to radiology procedures, we work with our cardiology program and sometimes we even help children of adult patients that are struggling with what’s happening to their parent.
Melanie: So, as a parent, how do we prepare our children for what to expect while hospitalized? How honest should we be with them about what they can expect if something might hurt? Tell us a little bit how you work with the family, parents and even the siblings about what to expect at how to talk to that child about that?
Jennifer: That’s a great question and a very long question for me to try to answer. So, when we work with a child and we work with a family and a family says so tell me what am I supposed to share with my child; the first thing that I always tell parents is that they need to think about what their child wants to know. Some children may be the type - have the type of personality where they want to know everything that’s going to happen to them and they will do better and they will cope better and they will understand better if they are given a lot of details. And then some children do better when things are very simple. They get just this is going to happen right now and we are going to get through it and we are going to help you get through it and they are distracted from it. So, it’s really individual-based. So, for a parent, if a parent is asking me how much do I tell my child and what do I tell my child; the first thing that I always say is ask your child what they want to know and start very slow and simple. Most children will give you a que as to whether they have either had too much information or they want to know more. If they have had too much information; as you start talking to them about a visit to the hospital or what they are going to experience, they will distract themselves. They will start talking about something else or they will move off to some other topic and you know that that’s kind of your que to say okay, they have gotten the information, they are processing it and we will move forward. Other children that need to know a lot of information will start asking more questions. I always tell parents that it’s important for you to be honest. Don’t tell a child if something is not going to hurt, if you don’t know whether it will or not. So, being honest and saying it may hurt, it may not hurt but most thing sonly hurt for a little while and we will figure out how to get through it and we’ll help – I’ll help you be there and I’ll hold your hand and we will cope through it.
So, I think even with children, the best thing is to be honest. And also, always give them an explanation as to why this is happening. This is happening because we are trying to help your body heal and we are trying to help you feel better. This is not anything that the child has done. There is no blame to place on the child for this. But we are here to help them and even though some of the things that we have to do as physicians and our physicians and our nurses have to do, and we have to do in the hospital can sometimes be painful; everything has a goal behind it. We are trying to help the child’s body heal and to help them see the positive that they can do.
One of the other things that we always talk about is when they are doing something and when they are experiencing hospitalization, or they are experiencing a treatment that’s painful and they are struggling with it is just to let them know that it’s okay for them to hurt. It’s okay for them to feel the way that they are feeling because this is a – this can be a scary place, it can be very stressful and what they are experiencing can be painful. So, to give them the opportunity to be able to express their feelings the way the need to express them and tell them that that’s okay, that they are still doing a really good job of helping and they are still doing a good job being present and being here.
Melanie: What items should or can kids bring to help them with some of this integration into the hospital situation to make them feel more comfortable? Can they bring blankets and stuffed animals and things?
Jennifer: Absolutely. I think that is the very first thing to always tell a parent if they are going to bring their child to the hospital, brings those comfort items. Anything a child sleeps with, anything a child uses when they are feeling sad or when they are sick. Absolutely bring those things. If the child knows or if a family knows they are going to come and stay for a long time; or are anticipating a couple of days or two or three days, bring that favorite pillow, bring your pillow case. Kind of make the room more child friendly and more comfortable for that child. We all know that we all sleep better when we are in our own bed so if that child has those familiar items with them; they are going to be able to help comfort themselves in an appropriate way.
Melanie: And what about kids that might have to miss school? As this program, are there school, are there tutors, what about kids that are hospitalized for quite a bit of time?
Jennifer: So, through Kentucky Children’s Hospital we do have school services. Our school services are homebound based, and it is through Fayette County. So, any child that’s going to miss five or more days of school can refer to our school teacher that’s here through Fayette County and get a homebound application started and can be seen while they are in the hospital for a couple hours a week to try to make sure that they are up to date on their assignments and that they get the proper paperwork filed in order to be counted for school.
Melanie: What about children in isolation Jennifer? Are they – do they have a special circumstance and how do you as a child life specialist work with children in isolation, so they don’t feel quite so isolated?
Jennifer: Sure so, we have entered into this world where there are some illnesses and those kinds of things when children are experiencing them that they can’t be out, and they can’t come to our playroom and they can’t have normal activities like some of our other children. So, we try to make sure that those kids that can’t leave their rooms because of their illness don’t miss out on those experiences that other kids would get. So, as I said earlier, we are sort of – we start in the playroom. So, play is our core and we move from there. So, if a child is on isolation, the very first thing that we try to do is make sure that they have some normal items in their room. Depending on their age, it could be musical instruments, it could be rattles, it could be toys of all kinds, Barbies, cars, all of those great things or for teenagers, it could be expressive things. It could be video game systems. So that they have first of all something that makes them feel normal and second of all, something to kind of decrease their stress and give them the opportunity to just play and be diverted from all the hospital things.
The other thing that we do for kids that are on isolation is sometimes we will even schedule private playtimes in the playroom so that we can actually make sure that the child gets the opportunity to get up, move around, get out of the room, but they are not exposed to anything that could make them more sick. And so, we will shut doors and shut our playroom doors and provide those private playtimes for those kids. And again, like I said earlier, our job is to help children cope with being in the hospital and help them understand so as child life specialists, if we know that a patient needs more explanation or is having a hard time coping with a procedure or something that’s happening to them; we go in the room and we do play sessions with them in the room. Our play sessions are very medical based in the sense that we will bring in a medical play doll, we will bring in all the medical equipment they may see and let the child just feel it, touch it, manipulate it, understand it and work through some of those things that may be causing them stress, causing them fear and try to figure it out.
Melanie: Wrap it up for us and what a wonderful job that you have helping children make the hospital a little bit less scary. So, give us your best advice, what you would like the listeners to take away from this as far as the child and family life program at Kentucky Children’s Hospital and including siblings and parents, getting them all involved to help the child understand what’s going on.
Jennifer: I think that my best advice to parents that are bringing children into the hospital or are experiencing that is to ask questions and ask for services such as child life, music therapy, we have a canine companion program, a canine counselor program here at Kentucky Children’s Hospital. Those kinds of things that will just make life a little bit normal for them. Look for those opportunities to ask for those services. We do our very best to try to see every patient bur of course we have lots of patients and not a lot of child life specialists to go around to see every patient so asking for those things and advocating for your child. Be your child’s voice, not only the child that is in the hospital, but the siblings. If you need support and you are having some issues, please ask for those things. We do have those available and we are very happy to make sure that children get out of the hospital as fast as possible with the least stress and anxiety as they can have while they are here.
Melanie: Thank you so much Jennifer for that great information and for your expertise and sharing it with us today so that parents and siblings and children can understand what’s going to happen at the hospital and get involved in some of that play. Thank you again for joining us. This is UK HealthCast with the University of Kentucky Healthcare. For more information, you can go to www.ukhealthcare.uky.edu, that’s www.ukhealthcare.uky.edu. I’m Melanie Cole. Thanks so much for listening.