We are finally here, the module you've all been waiting for. In this module, we describe the Back-to-School roadmaps that have been created with input from affected parents and other stakeholders. We present key features of the roadmaps, and the major milestones they reflect. You will also learn about the major types of content that each one covers. Used consistently, the roadmaps can help support parents to support their children. Using roadmaps to support families. Becoming familiar in planning dissemination. Our parents' stakeholders have children diagnosed with cancer, and they identified roadmaps as a familiar, and trusted approach to delivering guidance about what to expect, and what actions to take during their child's cancer journey. They recommended leveraging the reputation, and efficacy of a roadmap approach, and our own materials. From our nationwide survey, parents reported they don't have adequate resources that are universally used, and that in spite of the available resources, they still have many unanswered questions about vocabulary, relevant processes for receiving services, and other issues. Our findings about inadequate access to this information from health care providers, school professionals, or the internet is what inspired us to work with their parents stakeholders to develop a resource to help fill these gaps. It became our goal to create roadmaps that both provide knowledge, and help parents to take action. It's not enough just to tell a parent what the treatment risks are, and what might happen to their child. In addition to supplying this information, we need to give them actionable advice on dealing with potential cognitive issues as they navigate the challenges we have discussed in prior modules. The Agency for Healthcare Research, and Quality defines actionability as information that persons of diverse backgrounds, and varying levels of health literacy can use to identify what they can do in response to a health condition. This is really at the core of how we want to support our parents, and the benchmark we use to develop content for these roadmaps. Another parent-informed element that we considered, is the timing when roadmaps are distributed is a critical consideration. The treatment trajectory, school milestones, and the child's age will all play a role in determining the timing. As previously introduced, those milestones are diagnosis, home and hospital, going back to school part-time, going to school full-time, and continuing into survivorship. For those who are not yet in school, preschool toddler roadmaps were developed. The roadmaps must easily map onto treatment schooling milestones for a school-aged child diagnosed with acute lymphoblastic leukemia. You will need to adapt your roadmap dissemination plan for younger children, and those with other diagnosis such as brain tumor. Still, the information is applicable to all children with pediatric cancer who go on to school at some point after diagnosis. The roadmaps provide information, and also support parents to take action. We make decisions about what to include based on multiple information sources. You have already learned about the information related to the interviews, survey, and also the basic educational landscape knowledge. We were also guided by a study we did of the Internet resources that were available. Because parents that participated in this research told us that they don't get enough information from us, they're going online, and Dr. Google comes into play. This means that parents are out there on the Internet trying to find information for themselves, and their children. We decided we would do the same thing, but a bit more systematically in order to evaluate currently available Internet resources. We wanted to make sure our roadmaps weren't reinventing the wheel. Across multiple search engines, we inputted search terms that participants informed us that they had used. In doing this, we identified 56 patient education sites that provide information relevant to schooling after diagnosis. To evaluate them, we use the patient education materials assessment tool. This tool, the PEMAT, guided us to evaluate each of these sites across two categories. First, understandability, and second, actionability. In addition, we separately evaluated the reading difficulty level because it is important that our materials be accessible to parents with a range of literacy abilities. Takeaway was actually bad news. Good resources are hard to find. When we completed our evaluation of the 56 sites, their PMAT scores were pretty low. On a scale of zero to a 100 on understandability, the sites averaged a score of 54 percent, or basically the sites as a whole earned a D or an F on the criteria, being understandable to parents with low literacy levels. This is further supported by our evaluation of their reading levels. The average across the sites was that they were written at a 10th grade level and the mode was 12th grade, so even little higher. As we know, the recommendation is any information we provide be on an 8th grade level, so they are a higher grade level than they should be. However, there are some good news, as we did find some high-quality materials on some of the topics. Some of those are referenced in the road-maps, so that it's easier for affected families to benefit from them. Now we begin your orientation to the specific road-maps that have been created. First, we want to draw your attention to the structure of the road-maps. Each includes two checklists, one health care, and one school community related. These address the communication gaps that we found in our research. As parents take these actions, they will learn more about the processes that are critical for getting their child needed supports. Parents indicated that they are unfamiliar with the processes and that this is a source of stress and frustration. On the reverse side of beach road-map, there is informational section that fills in the knowledge gaps we learned during our interviews and surveys. For example, parents conveyed that school-related vocabulary was often unfamiliar. The road-maps provide this information along with other resources that were identified through our PMAT study as being especially useful and actionable. Now let's walk through the road-maps together and consider how to use them in the clinical setting. First step on the journey to survivorship: Diagnosis. You may remember that our research found that diagnosis is the most frequently identified time point for parents to report having received information about cognitive effects from their provider. Hopefully, you also recall that they indicated that this was the least helpful time. With that in mind, why do we have a diagnosis road-map? Two reasons. First, parents let us know that it is important to get information at multiple visits throughout the entire course of treatment. Second, introducing the road-maps now helps you and the parents establish a relationship that includes discussion of school-related issues. What is covered in the diagnosis road-map and how might you talk about it with parents? For this road-map, the health and school community checklist both focus on establishing lines of communication between parent, health care team, and education professionals. Creating the team and having a meeting will help parents get to know the people who they can go to regarding school-related issues. Taking new steps with the school and the health care providers plants a seed for ongoing dialogue. Critical vocabulary and knowledge introduced on this road-map include, what are neurocognitive skills or abilities? It also explains that cancer or its treatment can influence those skills and abilities. Finally, it explains what neuropsychological testing is and provide some links to additional resources that may be helpful. Second step on the journey to survivorship: starting home and hospital teaching. This road-map is designed to help the family make the transition to home and hospital schooling. For most families, this will be a very foreign way to think about their child's schooling and learning. Additionally, at this stage, their anxiety about health concerns are paramount. Parents will want your guidance on how to make this learning environment safe for their child. In this case, you'll note that going through the checklist with the family will help you communicate some home and hospital basics, like scheduling time for learning, assessing their child's ability to participate in one-on-one instruction, and safety concerns like infection risk reduction. The checklist for the community on this road-map continues to emphasize communication needs. For example, it can help the family establish necessary communication links with the home and hospital program in their area. Remember, childhood cancer is a relatively rare disease and the home and hospital teacher may have limited knowledge about educating a child during treatment. This checklist can help the family and teacher get on the same page and develop a safe and productive experience for the child. The knowledge component on the reverse of this road-map provides information for understanding home and hospital basics, like definitions and how to access this support. It also introduces ideas about maintaining the child's connection to their class during home and hospital teaching, and consideration for neuropsychological testing to better inform the supports needed. Third step on the journey to survivorship. Return to school part-time during treatment. At this point, families have likely gotten, over the initial shock of cancer, and made adjustments to many of the, lifestyle changes that have taken place. It is time to start thinking about, returning to some normalcy in the learning environment. This can mean getting back to the classroom. At least part-time. This is a great time to revisit the conversations. About the disease, and treatment effects on learning. The roadmap checklist will remind you, in the family to have conversations, about how the safety concerns evolve. As the child returns to school. As with home and hospital, the school personnel may have no or limited experience, with having a child undergoing treatment, for cancer on campus. The checklists on this roadmap, will help the family communicate vital information. That will be reassuring to the teachers and parents. Helping them to know and communicate, about what to do and expect. This will help make return to school, safe and allow the child to reunite with their peers. The knowledge section of this roadmap, focuses on 504 plans and will help the family, understand some of the options available to their child, under this protection. Fourth step on the journey into survivorship. Returning to school full-time after treatment. We heard a lot from our stakeholders, about the challenges at this point on the journey. Many families felt, the health care team didn't prepare them well, for returning to school full time. While finishing treatment is a cause for celebration. It is also a time of anxiety. The health care-related checklist on this roadmap, will enhance the communication you have with families, about lingering or developing late effects. That may impact school. Talking with families about school at this point, will help to relieve anxiety, and reassure them, that the oncology team is still engaged, with this important component of the care. We heard from our parents, stakeholders, the school misconceptions about their child's health, neurocognitive function are common during this phase. This can be an issue each time the child moves up a grade. As parents to need to communicate with new teachers. Every year, new teachers, may assume that if treatment is complete, the child is recovered and everything goes back to normal. The checklist on this roadmap, will help the family confront this misconception, and transition the child back, to a full-time classroom education. While ensuring important supports continue. For children who need specialized instruction. As they return to school, an IEP may be necessary. In a previous video, we discussed how, Complicated and frustrating this process can be. The Knowledge portion of this roadmap, Will help families understand, the basics of federal mandates. From IDEA, and introduce the vocabulary that will be necessary, to navigate these challenges. Beyond the fourth step survivorship. The journey continues. Once again, we learned some important lessons from our stakeholders. About the survivorship journey in school. The oncology providers, are not seeing these children in clinic as often. It is important not to overlook, schooling issues during these intervals, and reestablish that, you are still interested in discussing, school and neurocognitive issues. The checklist on this roadmap will help families, prepare for clinic visits, and consider other quality of life issues, that may be impacting the child's ability to fully, reintegrate to a post-cancer paradigm. This is also a great time to consider referral, for neuropsychological testing, and coming up with a plan to follow up, on testing recommendations. Our stakeholder families told us, that keeping an eye on the ball while schooling, is a challenge at this point. For example, parents are the cornerstone of the IEP process. Advocating for their child can be a never-ending process. The school community checklist, draws on the sage wisdom appearance that came before them, and will help prepare families for what may lie ahead. Neurocognitive late effects, often have evolving and lifelong impacts, on school and later adult life function. The knowledge component of the survivorship roadmap, will help to explain why we might expect late effects, and offers advice, on where to go should these challenges occur. Including legal resources that may be helpful as, they transition to adult life. As indicated above, these roadmaps must easily map onto the trajectory, for a school-aged child. To address needs of younger children, we have created the, What About Children Who Are Not In School Yet, Preschool and toddlers. This is particularly important. Because parents and providers, are often unaware of the services, available for infants, toddlers, and preschoolers. These can be critical for helping ensure, affected children are supported, in these important developmental windows. This roadmap explains to parents that even before their child has begun elementary school, there are resources that they can benefit from. In the health-related section, it can guide you and the parent to discuss treatment effects on development and the value of having someone on the treatment team being the designated point person for developmental concerns. It also provides action recommendations for setting up communication with infants and toddlers, or early intervention programs. Remember, even a very young child can have neuropsychological testing as well. Because these children are not yet school-age, the second action oriented section focuses on home and community. Action items focus on establishing communication norms, and a point person in a daycare or preschool setting, if applicable. This includes creating a triangle of communication between parents, health care providers and the daycare or preschool point person. The reverse side provides basic information about how cancer ARS treatment can affect development, with an emphasis on school-related impacts. It further explains what infants, toddlers or early intervention program can provide and provides appropriate links to support families to find such resources. My biggest aha moment was when Anne-Marie was five. Remember that she began treatment for her brain tumor when she was two. So when she was five, an oncologist brought up schooling for the first time. He brought up the words, individualized education program. He said it in an off-handed way like I might want to explore IPs with the school. I had a very good rapport with him at the time so I said, "Well, you've taught me a lot over the past few years and now I'm going to teach you something. She has had an IP for three years now and she's been in early intervention. So she's had three years worth of services already. Just so you know, children can get services from the time they're born so she started when she was two.". I really hoped I had an impact on that Doctor. So subsequently he did ask that question of other families and might help them get early intervention services. This led me to understand that the doctor had no idea that Anna could have been getting services all along. She did, but only because I got them for her and not because the oncology team let me know that. My daughter is in her 20s now and just like then, I still work in special education within a public school system. Recently I had an experience that made me fear things haven't gotten any better because I had a student who had cancer when he was 18 months and the parents didn't come to us until he was five. This child was blind and didn't get any early intervention services. Now typically, blind preschoolers start doing pre-braille work so that by the time they are in kindergarten with other kids who are reading words they are reading too, just in braille. He got nothing because his mom was never told she could get services. So this child, in essence, lost three years of services that he could have gotten. It reinforced for me that this is continuing to happen, and this has been many years later that this family also wasn't notified about early intervention services. In earlier modules, we discussed the parents survey results in depth. We alluded to a provider survey as well. For example, describing that while most providers indicate they give information at diagnosis, this is the time parents indicate is least helpful. We also learned in our provider survey that there are a few educational and training opportunities related to these issues. If you'd like more information about provided perceptions, You can continue your reading on your own by accessing the paper cited here. Thank you for taking the time to complete this CME. We know from our research that this area of patient-. provider communication needs improvement. Changing how you communicate with families is challenging. Learning about the need and being familiar with the roadmaps is the first and important step. We hope you will take time to review the roadmaps on your own and consider how to use them to facilitate brief discussions with your families on a regular basis throughout the treatment period. Doing this can help ensure parents are better prepared to effectively support their child to meet school challenges. Thank you again for participating in this CME. We hope this experience has convinced you to start taking small steps now so that using the parent roadmaps, kids with cancer still need school, becomes a routine part of your medical appointment protocol. We know you have a lot of information to cover with parents. Providing the roadmaps and letting parents know that schooling is important to you will help parents take actions themselves that can help their children succeed, after you have helped them survive.
