Hello, my name is Stacey Williams and I am a nurse practitioner at Vanderbilt Children's Hospital in the Pediatric Cardiac ICU and the Pediatric ICU. Today we're going to talk about care and comfort of a critically ill infant and child. We're going to look at ways to engage the family to help provide the best care for our patients. Here I've listed my financial disclosures. Learning objectives for today will include being able to determine the meaning of family-centered care, discover ways of transitioning from presence of family to true engagement and empowerment of family, and also discover how families can be utilized in each bundle element of the A-F ICU liberation bundle. This quote comes from a mother whose child has been in the ICU multiple times. As a mother to a child in the ICU, you are unsure of how to comfort the child, what's allowed, what would cause more harm than good. You don't know what to ask for, how to advocate for your child, and collaborate with a medical team. You assume they know better than you because they have the degrees and experience. The lack of sleep and anxiety makes you feel crazy and stuck in the most helpless situation. True torture. This quote from this mom has resonated with me throughout the years because it shows you the true torture that this mom and most of our parents go through. They don't know how to care for their child even though they're that child's parent. This is a way that we can hopefully start re-engaging the family and give them a little bit more empowerment of taking care of their child and also having that connection between the parent and the child for better care for our patients. So what is family-centered care? It's the integration and collaboration of family members and the patient care team, especially in the care of dependent infants, children, or adults with complex or continuing health care needs. This is a very basic definition of family-centered care. This is a definition where each institution can start with and then they can build upon what family-centered care is to them and also what it means for their families. So what are the critical components of family-centered care that an institution needs to think about when starting this process? Mutual respectful partnership between the family, patient, and all components of the health care team are crucial. It's not just between the family, the bedside nurse, the nurse practitioner, or the attending physician for the day. It is every single team member that is involved in that patient's care. And the family is seen as being a part of that team. Family must be seen as having importance in the patient's life and care. This is sad because, yes, family is important, but one thing we also need to take a step back and think about is who in this family is important to this patient. Just because birth mom may be at bedside does not necessarily mean that that is the most important person in the patient's life. So we need to break down and figure out who is the most important and have them involved because they can be a key component of helping improve this patient's care. Family must be informed and allowed to have input and ask questions in the planning, delivery, and evaluation of care. This includes open communication. And finally, medical team members must acknowledge that emotional, social, and developmental support are integral components of health care. So how do we involve families outside of just having an open visitation policy? We know that there is a very distinct difference between families being present and actually being present in rounds. What institutions can do is go ahead and set expectations for the families, what they are going to do, what they can do, what they can be involved in. And this helps kind of set those boundaries and expectations and kind of starts that process of knowing that they can be involved in giving them that pass of, hey, we want you guys as a part of our care team. One of the first ways that it can be done is having families present in rounds. There's one study that looked at 161 PICUs from the U.S., Canada, Brazil, and Europe. Eighty-eight percent of the PICUs had one family member present for the majority of the time. Ninety-four percent of the PICUs in the U.S. and 100 percent of the PICUs in Canada invited families to participate in rounds, but only 40 percent in Europe and 33 percent in Brazil. Now the best location to have these rounds is at the patient's bedside. That said, the families do not have a step away from their child. One thing to think about, though, is when a family member is present in rounds day one of ICU admission versus day four or their fourth ICU admission, unfortunately, it's going to be different. The first day, family members are in shock. They don't really know how to act. They don't know the questions to ask, and so one of the best things the care team can do is invite them to rounds, but then follow up in the early afternoon or after rounds or whenever someone from the care team has time because this will allow the family to have time to think, get their questions that they may have that they may not have thought about in the moment, and it allows them to have a space to ask those questions, to maybe say, hey, I noticed this. What does it mean? And they can bring four little pearls that we may be missing because they know their child so well, but we don't know them and their little nuances. Now as time goes on, family may get a little more comfortable and be more engaged in rounds. Their comfort increases. This helps also increase their trust in the care team. It is important to have open communication and listen. Listen to the families. Listen to what they're saying, their questions, their, hey, I noticed this. Those little things can be so important, but also the family listening to the care team and the care team speaking on a level that the families understand. The families can also be a second set of eyes when we're in the middle of rounds. They are going to be focused on their child, but they can be a second set of hands while the nurse is listening or if the nurse has to step away. Now COVID presented a very unique challenge for all of us in healthcare. We've all heard the stories from the adult side of not allowing family members to be present at bedside. In the pediatric world at Vanderbilt, we were able to allow one caregiver at bedside for 24 hours. This presented the unique challenge of having not only to keep the family member up to date and engaged, but also the family members who could now not be present. The family members have lost this support system that they had in place before COVID. And so the care team really did take on a very unique role now as not only the caregiver to the patient and in pediatrics, the care team has been kind of in a supportive role of family members, but it even increased and became more important during COVID when these family members had no one else at bedside but them. Now there are still thoughts that having family present in rounds increases the time in rounds and decreases the time of teaching that learners have. Studies have shown that this is absolutely not true. One study actually showed that there was an actual decrease in preventable adverse effects by 38% when families were present in rounds. It did not change the amount of teaching and it did not increase the length of rounds. Another way that we can involve families is having them present during procedures and CPR. Now this seems scary to a lot of people. The thoughts are that they may get in the way, they may have increased anxiety watching a procedure or watching their loved one have CPR performed on them, and also increased anxiety for the medical team. Well studies actually show that none of this is true. During CPR, families don't get in the way, but it actually increased their trust and it increased their way that they see how the care team is doing everything they can for their family member. It decreases their anxiety for the most part. Now during procedures, the concern of the family getting in the way, data has shown that that is not true and that if you're comfortable enough with the family members, they can be sterile and be present and actually help comfort the patient. Another concern is that it may increase the number of attempts of a procedure and studies have shown that that is not true also. Now a third way is having family conferences and these are more for patients who have been here for a couple of days in your unit. It needs to be in a private room with open communication and you can invite different services involved in the patient's care. This allows for questions to be asked and not only just to the ICU team, but to the different services involved. And this is a time where emotional support can happen. The family can see everything that the child is being given care wise, but also the steps that still need to be taken. Now to dive into family presence and how it can be utilized during each part of the A-F bundle. We'll start with A, assessment and management of pain and anxiety. Research shows that family presence actually has lower stress scores with parental presence during painful procedures for the patients. Not only does the patient have lower stress scores, the parents also have less anxiety when they're allowed to participate. Parents also have more trust and confidence in the care team when they're able to participate in the patient's care. Parents with parental presence during painful procedures are noted to have lower pain scores, which we all know that that can lead to lower medication administration. And then also, I touched on this a little earlier, the little pearls of knowledge. The family members at bedside know the patient better than any single person on the medical team. They know their little quirks, their nuances, and they can bring those little things that we may not see and notice to our attention that will help this patient's care. Here I've combined elements B and C, spontaneous awakening trials and breathing trials, and choice of analgesia and sedation. Family member presence can be crucial in actually allowing the patient to receive less sedation in analgesia. Some ways that this could happen is that they can be an extra set of hands. If a nurse needs to step away to another patient's room, the family member at bedside can help the patient by holding his hand, making sure the patient is not pulling at anything that shouldn't be pulled at. They also provide that familiarity. The patient knows their family member. They don't know the nurses. They don't know the doctors. And that can help decrease anxiety, so less sedation. The family members also know the child's favorite shows and can bring in favorite toys. And again, like I touched on earlier, the little pearls of knowledge that the family has about the little things with the patient that the medical team doesn't know and can be helpful in their care. For element D, delirium assessment, prevention, and management, familiarity is key. The patient knows their family member's voice, their face. They don't know the nurse's face, the doctor's voice, or even the room that they are in, the odd sounds that they hear around them. So having that family member there at bedside is key in this element. If your institution uses the PSCAM or the PCAM for delirium monitoring and assessments, the family members can actually get involved here and do feature two of the assessment. They can have a toy, a stuffed animal, a blanket, whatever, and they can be involved in doing the delirium assessment with their child. They have an insight on sleep patterns. We all do not sleep the same. We all have very different things that we like that help us sleep, and the parents can provide insight into this. Also important for delirium prevention is a schedule. Does a patient have a schedule at home that they are used to, and how can we help get them on this schedule to maybe help prevent delirium? For element E, early mobility and exercise, family members can be the motivator, the cheerleader, the extra set of hands, the let's get up and go. They know the things that can motivate them. Hey, let's take two steps to this, or even they can be the motivator. In the PARCC-PICU study, family engagement actually increased mobility for those less than three years in age, and is associated with increased therapists providing mobility. Here are two pictures that show family presence. It's important to note that her mother was at bedside throughout the patient's entire hospitalization, but that is not who you see in the pictures here. This patient's grandmother was her biggest motivator. This is why it's important to have these interactions and these conversations with the families, because we were able to use this motivator kind of relationship that they had to help improve her care. Now, if a team member or mom or dad asked the patient to do anything and she didn't want to, she was 15, she had her own mind, and she would give us a look if she didn't want to do it. However, if grandmom asked her to do something, there were no questions asked. She did it, whether that was sitting up, helping roll over, standing at bedside, or even going to a chair. So we honed in on knowing this to help motivate her to do things that were hard, but it pushed her and it improved her care. Now, the picture you see on the left is of her getting a respiratory treatment, and she had a lot of anxiety, but what is important to see is she's not getting medication because she's anxious in this picture. You see her grandmother with her arm around her, holding her hand, talking to her, and this helps decrease the amount of medication that she needed. So when all of these elements are put together, family-centered approaches lead to better health outcomes for our patients, wiser allocations of resources, as well as greater patient and family satisfaction.

family-centered care

integration

collaboration

patient care team

family conferences

patient satisfaction