Neuro Connect Summit 2019 Adriene Burroughs, MHS

Neuro Connect Summit 2019 Adriene Burroughs, MHS



so as you mentioned I am with National Institute of Nursing Research which is part of NIH Nursing Research works to improve patient care at the bedside in the clinic and in the community nursing research can improve people's quality of life whatever their age of stage of illness and kind of care is a good example of that so that's what I'm going to talk about today is some of the resources that ninr has developed for palliative care so a lot of people most people maybe have never heard the term palliative care or if they have they might associate it only with end-of-life care and there are a lot of misconceptions about palliative care that I just wanted to address first one is that it's only for patients at the end of life and that's not the case height of care can be incorporated into a person's treatment plan alongside of other treatments that they might be receiving or other types of care and that patients and families can receive palliative care not only at the end of their life but throughout the course of an illness so a lot of people think it's the same as hospice care and while Hospice does include palliative care it's focused on a person's final months of life whereas pilot of care is for chronic illnesses and serious diseases that can last many many years the other misconception of that it means giving up hope so some people think that discussing tide of care with their family or with their health care provider means that they are giving up hope on either a cure or an improvement in their condition and that's not the case because palliative care can improve a person's quality of life it does not mean you're giving up hope it means you're offering a different strategy for managing symptom and that the other misconception is that families will become fearful so a lot of people are very hesitant to bring up the subject to Pyatt of care if you're a provider or families are hesitant to hear about it because they do have these misconceptions and these associations only with end of life but once the topic is brought up a lot of families are actually very receptive to height of care and incorporating into the treatment for either themselves or their child if their child is ill so what is palliative care some people may ask what it is and ninr developed a brief video to explain pediatric palliative care but most of the same principles apply whether it's pediatric or adult so I thought it might be good to just show this video to give an overview of palliative care and what it is and we can start with that pediatric palliative care is a unique type of care that addresses symptoms and stresses of serious illness while focusing on quality of life for children and their families it's available at any age of childhood ranging from newborns to young adults and at any stage of an illness a child's illness affects the entire family so palliative care supports parents siblings grandparents and other family members as well as the patients the added layer of carrot provides to reduce stress during Comfort in a variety of ways and palliative care providers can ease pain of our emotional support address family concerns communicate with other providers explain terms and care options and coordinate care and my and locate important resources for the whole family it's different from hospice care because it's available at any time during a serious illness and regardless of prognosis and effective care can begin as soon as a family learns about the illness and care can be provided at the same time as other treatments working alongside a child to primary medical care teens healthcare providers will often refer patients to palliative services but families can request them as well every palliative care team is different and may include doctors nurses Child Life specialists respite providers art and music therapists chaplains and counselors nutritionists and pharmacists and care can be provided wherever the patient needs it in a hospital a clinic or a the palliative care team can even help facilitate smooth transitions between settings care is customized to meet the needs of each patient and family that offers or based on their beliefs culture and preferences parents say that palliative care benefits families because it they need more focusing on quality of life emphasis on living life to the fullest CAIR so special talk to your loved one providers adopted conversations matter start one today for more information and free resources for families providers and organizations visit the National Institute of Nursing Research part of the National Institutes of Health shaka slash conversations so that video was something that nir created as part of our piloted care conversations matter campaign it's a health communications campaign that focuses on pediatric palliative care and developing resources that providers can use and also families can access we also have resources for adult populations as well so I'm just going to go through kind of what's available I did bring samples of almost all of our materials there on the table outside you're welcome to take copies with you these are also things that if you want to use them in your practice or you want to use them for your organization and get them out to people you can order them free of charge or you can download them from our website as well so I'll just go over some of what we developed and kind of how we developed them this is the campaign that I mentioned so some of the things that this campaign encourages but that ninr encourages in general is that we conducted extensive form of research we talked to a lot of parents we talked to providers we talked to healthcare professionals and a lot of researchers so everything we do is evidence-based for part of nih we want to base this in you know the studies that are out there but then also talk to the people who are using our materials or who could be using our materials and make sure that it's something that they want they need that it's something that fills a gap so the campaign encourages that kind of care be recommended early on in the course of an illness and along with other types of care that it's something that's continued as a dialogue throughout someone's illness that patients and families understand palliative care and encourages a conversation between healthcare providers and patients and their families the of piece of tide of care is kind of listening to the unique needs of patients because obviously everybody's different every illness is different and what works for one might not work for another the other piece is access to palliative cares so some places don't have formal palliative care teams in place but there are components of Pyatt of care that could be incorporated into a treatment plan that could be beneficial for a patient and then to provide easy to understand information that really resonates with the people that could potentially use it so this shows just a screenshot of our campaign webpage on pediatric palliative care there's different sections the for families and patients those are information that directly relates to families it's written in a way that can be used by anybody there are brochures fact sheets resource cards videos the healthcare provider section very short videos because health care providers told us they don't have a lot of time so we did a couple minute just kind of like what I showed we have that was our animated one the other one that a lot of providers really like is it's a mother talking about her family's experience with tidav care because families told us they want to hear from others who have used kind of care and what their experience was like and some providers have told us that they actually show that to their patients or they'll show it to like new staff coming in or at Grand Rounds or something to share the idea of height of care with others the provider perspectives box that goes through very brief interviews that shows the interdisciplinary nature of a diet of care teams so it interviews kind of members of a team and who's on the team and what they do and what their role is the outreach and media those are things that can be used by organizations so there's web bi errors and badges drop in articles there's a social media calendar and social media content that anybody it's free to use if they'd like to so those are the resources that we have available and if you go to the next this is when you go to the campaign materials page you'll see at the top we just last week launched a shopping cart so we're a little bit more like Amazon now where you don't have to send us an email or call us what you're welcome to do but you can actually order materials through a shopping cart and you can put in how many you need everything that we do is available in English and Spanish so that these are all things we tested with parents and also with providers and I'll go through an example of one of the interesting things that we learned when we are testing one of our materials in Spanish and so the different categories are things that we went over there's a spanish-language button on this page that can access all the spanish-language materials there's also a Spanish button at the top of our campaign page that has all the information in Spanish as well that was one of the gaps you really identified is that there weren't many materials and other languages about palliative care and it's a tough subject to actually translate and have it resonate in a positive way so for providers the main piece we have for providers is a tear off pad and this shows the front of the tariff pad I have examples out in the hallway we recently redesigned it so it's a spiral-bound – a pad that providers can use the purpose of it is to guide a conversation with the family about palliative care and the front of it is just an explanation of kind of how to use it and then some Q&A is that patients and families might have some suggestive responses so this shows the front how to use it again available in English and Spanish the interior pages are for the patients so this is something that they're customizable so it doesn't matter what the illnesses or diagnosis it doesn't matter what the prognosis is these can be customized based on the conversation that a provider is having with that patient or family to say these are parts of palliative care that might really benefit this patient and here's what we recommend here's some members of the team that we would recommend here are some suggestions about when we can talk about this again so it's not a one-time conversation the other thing is parents told us understandably they are completely overwhelmed when they have discussions with nurses and doctors and other health care professionals that they don't retain any of the information that they talked about and so the nice thing about this is you can tear it off give it to the patient a lot of providers told us that when they use this they make a copy of it and stick it in the patient file so that they have a record of the conversation discussion as well sorry this keeps making that sound I don't know what I should do about I'm trying to stay away to see if that would help so the materials for patients and families there's a brochure there's a family perspectives book which profiles a couple different families a fact sheet a resource card frequently asked questions on our website and then a couple videos as well so if you go I'll go through each one briefly this is the brochure the brochure goes through common questions that families might have and some responses to those general information about pediatric palliative care one thing that I'll mention about this and their copies out there if you want to take them with you is when people are using these in hospitals and clinics a lot of people have told us that they've made like a sticker or a label that they can put on the back with their local contact information so that a patient has that when they go home so that this is general but then you can customize it a bit for your own practice the finding family support card this is double-sided this gives some general ideas because families told us they don't know where to start in these illnesses these are suggestions for types of support that might be available in their community it's fairly general because we had to develop something that can be used nationwide across the country but the interesting thing of this is when we translated this into Spanish we tested it with spanish-speaking parents and this just shows kind of the health communications piece and why it's important to ask the audience that you're actually doing these things for so we showed it to him and the parents said the translation was fine you know the information was good but they did not like these icons okay at all and they actually thought they were a turn-off and they wanted to see pictures of real people and families so the Spanish version of this card looks different because we had to redesign it to include real pictures but it's the same content so if you see it out there same information just different formats so I thought that was interesting and it shows like why we actually talk to people about what we're doing and ask them we don't want to turn anyone off so that was fascinating so this family perspectives this is again coming out of parents telling us they want to hear about others and so we ask people to send us their stories of their experiences with tide of care this profiles for different families the nice thing about it is it's a range of Ages so its newborn up to I think the one person is 19 and he's been receiving palliative care for 7 years at the time that this was written so it kind of gives a good overview people that are maybe reluctant to talk about palliative care can see what maybe it's done for somebody else and then they're a little bit more open to it this brochure is our adult Bosher it's available in English and Spanish again it's kind of a really nice summary and overview of diet of care and what it does this is for any type of disease it's written in a very general way a lot of positive care information is focused on cancer ours is specifically not focused on any one disease and there are copies of this out there as well so a couple things if you're wondering what you can do depending on your wolf if you're a patient a family member a provider is to show identify the need for Pyatt of care if you see one sharing information about palliative care and the information from the pediatric campaign starting discussions and learning about services in your community you can access materials online or like I said you can order them if you'd like and share them with others especially bringing them back to your colleagues and team members so I think we'll have questions later but I wanted to mention one question that a lot of people ask me how can they find palliative care services in their community right so we couldn't do that with our materials but there is a place that does it and they do a good job so it's called it the website is get palliative care org and you can search by zip code city or state to find local pilot of care programs in your area it's a great website in general we don't because we're part of NIH we don't have a lot of different websites on our materials but they do a great job of having this provider directory that's very helpful this is my information you're welcome to contact me if you think of other things that you'd want to know about or you have questions or you'd like to hear more about how we developed the materials and kind of our next steps and what we're doing with all this but a big part of what we're doing is making sure that people are aware of what we did so we spent a lot of time and effort developing these and now we're at the point where we trying to share them as widely as possible so thanks very much for having me and I guess you

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