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- Other Resources | DATCH Education
Top of Page Ages 0-2 Ages 2-7 Ages 7-11 Ages 11-17 All Ages Other Resources This is a compiled list of existing educational resources not developed by DATCH, which provides support for people with hemophilia, their families and caregivers. The goal is to improve the health and quality of life for people with hemophilia. Resources highlight basic information and the topics of treatment, physical activity, inhibitors, pain, emergency, independence, and travelling. All resources are affiliated with an organization based in Canada. All resources are available online in the format of a downloadable PDF document, book, game, app, video, or PowerPoint. All resources are also free or cost a low fee. This list of resources is not comprehensive. All resources were evaluated on a list of criteria. The criteria evaluated the topics of currency and timeliness, authority, organization affiliations, purpose, quality of the information, representativeness/applicability, ability to obtain/access, and accessibility. It consists of 40 questions. Resources deemed high quality were included in this compiled list. DISCLAIMER! Resources and information are provided for your general information only. It is not medical advice and is not a substitute for visits with healthcare professionals. Tips for finding childcare: A Guide for parents of children with bleeding disorders A booklet that provides information to help parents of children with bleeding disorders find the right childcare for their child by assessing their childcare needs and suitable options. It also outlines basic medical, health and safety information that caregivers must know. Ages 0-2 Click Here All About Me A storybook that helps school-age children talk with their classmates about their bleeding disorder. The Story of Miko - A Cheeky Little Dog with Hemophilia A picture book that supports children’s treatments by enabling parents to introduce and familiarize their child with simple treatment terms, explanations, and more painful forms of treatment. It offers pictorial support, and aims to encourage collaboration and development of parent’s support strategies alongside their children. Ages 2-7 Click Here Click Here Ages 7-11 Medikidz Xyntha Solofuse Explained A comic book part of the Medikidz comic book series of superhero adventures inside the human body. Medikidz is an initiative that aims to help children learn about health and disease in an exciting and fun way. In this book, the Medikidz explain xyntha, a medicine used to treat bleeding in people with hemophilia A. HemoAction Online Games Online games for children with hemophilia that teaches about how to prevent bleeds, manage hemophilia while learning about the clotting process, types of bleeds, factor infusions, and suitable physical activities. It features a memory game, fill-in-the-blanks race, picture matching game, and web-book that explains each card. In-HemoAction Card Game A card game for children with hemophilia, that is educational, fun, easy to understand, and interactive. It is an update of the HemoAction game and features additional topics of prophylaxis, inhibitors, bypassing agents, immune tolerance induction, and physiotherapy. Click Here Click Here Click Here Ages 11-17 Me - Period Flow Assessment An app for assessing menstrual flow and presenting quantified evidence to the doctor. It uses components of Pictorial Blood Assessment Chart (PBAC) and automatically calculates your menstrual scores. It also warns of a risk of possible menorrhagia and advises communication with your doctor. It is available in Apple and Google Play stores. MyCBDR An app for people with bleeding disorders to record and report home treatments and bleeds to their health care team. It is available in Apple and Google Play stores. Self-Infusion: Confidence, Autonomy, Freedom A video starring real-life young people with bleeding disorders, who describe their journey to learning self-infuse clotting factor concentrates and the impact of this on their life. Playing it Safe - Bleeding Disorders, Sports & Exercise A booklet for parents of children with hemophilia, that describes the safest and riskiest ways for people with hemophilia to participate in sports and exercise. Me and My Genes An interactive animated video that provides pre-teens and teenagers who are carriers of hemophilia A or B information about carrier inheritance, testing, and bleeding symptoms management. It also includes interactive buttons for viewers to test their knowledge and access tips, myths, and fun facts. *This resource requires a DVD player and must be ordered using the online order form: www.hemophilia.ca/request-a-publication/. MyWAPPS An app that allows users to view real-time estimates of their factor level based on their individual pharmacokinetic information, which is linked by a healthcare professional. It also comes with an estimator function that allows forecasting of the user’s predicted factor levels. *Please note that you will have to contact your physician to set this application up. WeThrive WeThrive is the first app that can identify heavy menstrual bleeding in adolescents. It can be used for period tracking, period predictions, symptom tracking, as a resource to find clinics, and period summaries and scores can be shared with users’ health care providers. Further, with a user's consent, anonymized period tracking data may be collected by researchers to further advance knowledge. It is available for free download on Google, Android, and Apple stores. Click Here Click Here Click Here Click Here Click Here Click Here All ages Click Here All About Hemophilia - A Guide for Families, Second Edition A comprehensive guide for families of children with hemophilia. It contains 16 Chapters: cause, comprehensive care, management of bleeds, clotting factor therapy, prophylaxis, home infusion, complications, mild and moderate hemophilia, staying healthy, physical activity, transition to independence, symptomatic carriers, family perspectives, and future of care. Challenges, Choices, Decisions A guide to help families and their children with hemophilia understand orthopedic surgery, a procedure which may be necessary in some cases. Home Treatment Guide, Second Edition A booklet designed to assist in the safe home treatment of bleeding disorders by providing basic information. It contains 4 sections: introduction to home treatment, assessing bleeds, treating bleeds, and special considerations. Information Booklet on Mild Hemophilia An information booklet about mild hemophilia for families and people affected. It contains chapters on inheritance of hemophilia, hemophilia treatment centre (HTC), recognizing a bleed, treatment options, first aid, inhibitors, and healthy lifestyle. Hemophilia from Diagnosis to Homecare: Support for the Journey An educational package of two activity books to help children with hemophilia and new parents work through the challenges that come with hemophilia. It is very personalized, interactive, and colourful. All About Inhibitors A booklet about inhibitors for families of people with hemophilia. It covers basic information about inhibitors, treatment with inhibitors, bleeding episodes, physical activity, daycare and school, traveling, dental care, and pain management. PAIN – The Fifth Vital Sign A guide on managing pain for people with bleeding disorders. It contains 9 chapters that cover topics of impact on family, role of the care team, advocacy, opioid and non-opioid analgesics, physiotherapy, orthopedics and surgery, women with bleeding disorders, and alternative approaches. FactorFirst wallet card A card for people with hemophilia to carry in their wallet, to present to staff when accessing emergency care. It contains patient information including diagnosis details, treatment guidelines, and contact information of the patient’s bleeding disorder treatment centre. This resource can only be obtained by contacting the patient’s bleeding disorder treatment centre. It goes with the CHS Wallet Travel Card. Passport to well‐being A program that provides people with bleeding disorders with information, skills, and strategies. It contains five modules which focus on fitness, independence, managing pain, navigating the emergency department, and travelling. These modules are presented as educational booklets and workshops with PowerPoint presentations. CHS Wallet Travel Card A card for people with hemophilia to carry in their wallet. It contains information about how to access care and treatment when travelling and 16 key phrases in English, French, and Spanish that are helpful in emergency situations. It goes with the FactorFirst wallet card. Acquired Hemophilia A pamphlet that provides information for people with acquired hemophilia and their families. It contains basic information, signs and symptoms, and available treatments. All About Carriers A guide for people who are carriers of hemophilia A or B. It contains 10 chapters that cover the topics of care, inheritance, symptomatic carriers, testing, reproductive issues, treatment, alternatives, and quality of life. A Home Treatment Guide and Notebook A guide and interactive notebook for people with bleeding disorders that provides basic information to ensure safe home treatment practices. It is in a format that is easy to use and includes engaging images. Click Here Click Here Click Here Click Here Click Here Click Here Click Here Click Here Click Here Click Here Click Here Click Here Click Here
- About | DATCH Education
Our Story DATCH was born out of a students' undergraduate thesis project in her specialization in Child Health. At the time, the student was also volunteering in McMaster's hemophilia clinic. After learning about the different developmental milestones during a child's typical development and the importance of ensuring that resources were accessible and inclusive, she set out to find resources that were suitable to children with hemophilia depending on their developmental milestones. The idea of the DATCH project was created. DATCH aims to develop appropriate resources to children with hemophilia of various developmental stages where gaps exist by collaborating with a child's care team, compile good resources together to ensure accessibility, provide learning opportunities for students to utilize their skills to contribute to the project, and ensure the materials that DATCH develops are inclusive . Why is DATCH Important? DATCH stands for Developmentally-Appropriate Tools for Children with Hemophilia . As you may know, most resources in hemophilia are not designed for children. Of the available resources that are actually designed for children, a lot of the content isn't specifically tailored to what your child should be learning at their age. This means that children with hemophilia lack the opportunity to better understand their condition, and therefore cannot engage in conversations that would otherwise reduce fear, improve self-confidence and improve patient outcomes. Visual Examples of DATCH Projects
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- DATCH Resources | DATCH Education
Top of Page Ages 0-2 Ages 2-7 Ages 8-11 Ages 11-17 DATCH Resources DATCH stands for Developmentally-Appropriate Tools for Children with Hemophilia . DATCH aims to develop effective educational materials for children with hemophilia based on their developmental stages to help them learn more about their disease and treatments, ultimately becoming advocates in their own care. Various members from the hemophilia care team have been a part of the development and consultation process. Learn with Teddy, who has hemophilia, and his family by following his journey throughout all the DATCH resources. Please note that many of our resources below have already been developed, but are not yet readily accessible to the general public. Although our resources have already been created, we are still studying them through a research ethics approved study to ensure that they are effective. If you are a healthcare professional who would like to use these resources or if you have any questions, please email us at DATCH@mcmaster.ca . Ages: 0-2 My Hemophilia A-B-Cs In this hemophilia alphabet book, follow along Teddy as he learns his ABCs. In this book, Teddy learns about the clinic, bandages, and how to take good care of himself. Ages: 2-7 Hemophilia Cartoon Animation Videos Join Teddy as he explores his hemophilia, goes to the clinic and meets his care team, uses his new sticker calendar, and gets a treat from the treasure box for taking care of himself! There are 4 episodes in this series. Episode 1: Teddy has a Bruise Episode 2: Teddy Learns About Hemophilia Meet Teddy and his sister Zoe! Teddy has a bruise and learns that his bruise is different than Zoe's. Teddy learns about blood and is introduced to the 'helpers' in his blood (called 'factors'). Teddy starts to understand the importance of taking care of his bruise. Teddy goes to the clinic to check on his bruise. Teddy meets Doctor Daisy and learns that another name for the helpers in his blood is called factors. Teddy learns that he has hemophilia. Doctor Daisy answers a lot of Teddy's questions about hemophilia. Episode 3: Teddy's Checkup Teddy goes back to the clinic for a routine checkup. Teddy meets his care team at the hemophilia clinic such as Nurse Nate and Physiotherapist Phil. Teddy learns about physical exams and is introduced to his sticker calendar. Physiotherapist Phil also encourages Teddy to continue playing with his friends. Episode 4: Teddy's Sticker Calendar Teddy and Zoe go biking in the park. Teddy remembers to wear a helmet while he rides his bike. Now, he can get a care sticker for being safe. Teddy and Dad put some stickers on Teddy's sticker calendar. During Teddy's checkup visit, Teddy brings his sticker calendar. Teddy chooses a firetruck from the treasure box. Ages: 2-7 My first hemophilia colouring Sheets This collection of educational and interactive colouring pages aims to familiarize the child with hemophilia. It addresses concepts such as how to improve their health and quality of life and reduce bleeding. Have a little fun learning about living with hemophilia or practice mindfulness with a colouring page that resonates with you! Ages: 2-7 Sticker Calendar This is a sticker calendar that children with hemophilia can use to record their care. This encourages children to be involved in their own care. Bandaid stickers = bruise, cuts and scrapes Needle stickers = factor treatment Blood drop sticker = care sticker (when children take care of themselves such as eating healthy and wearing a helmet) Ages: 8-11 Hemoworld: hemophilia video game Hemoworld is an action packed adventure for anyone seeking to learn about the inner workings of hemophilia. Join Dr. Daisy as we traverse through the body to learn about the circulatory system, the clotting cascade, safe practices for kids with hemophilia, recommended exercises for those with hemophilia, and many more important lessons. While recommended for kids aged 8-11, anyone can join this motivating, reassuring and most importantly fun adventure! Ages: 11-17: Menstruation Know your flow Know Your Flow is an informational resource for individuals with a bleeding disorder (not limited to hemophilia) who already or will menstruate. This booklet was developed with input from a multidisciplinary group of 27 health care providers . It includes perspectives from pediatric and adult hematology, obstetrics and gynecology, nursing, physiotherapy, social work, child life care, primary care and emergency medicine. Importantly, it was also shaped by the lived experiences and advice shared by 19 girls and women with bleeding disorders and their caregivers from across Canada. The resource covers topics ranging from what a period is to period products to tips and tricks. A French translation and print copies will also be available soon. We will be expanding this booklet globally, across multiple languages and cultures in the upcoming future. DOWNLOAD ENGLISH VERSION DOWNLOAD FRENCH VERSION Ages: 11-17: Menstruation You've got this. Period. Similar to Know Your Flow, You’ve Got This. Period. is a self-reflection guided informational resource for individuals with a bleeding disorder (not limited to hemophilia) who menstruate or expect to begin menstruation. Topics covered in the booklet include typical menstruation, atypical menstruation, medical management, self-management, support, and empowerment. In addition, there are interactive reflection prompts throughout the booklet. Please note that this resource is not recommendation-oriented and is not a substitute for professional medical care. Ages: 11-17 Navigating sexual health & Hemophilia The goal of this resource is to sensitively and meaningfully navigate the potential sexual health-related questions, concerns, and experiences of individuals living with hemophilia and other bleeding disorders. Through both content covered and delivery of information, this resource aims to be inclusive of intersectional identities, considerate of historical and present contexts, and different attitudes toward sex-related topics.
- Team | DATCH Education
Meet The Team Co-Founder, Medical Student Casey Li Casey is a medical student at the University of British Columbia, and a graduate from the Bachelor of Health Sciences program at McMaster University, with a specialization in Child Health. She is passionate about health equity, innovations in healthcare, and child health. During Casey's undergraduate senior thesis, she started the DATCH hemophilia education program. Outside of DATCH, she loves spending time with Kai, her golden retriever puppy. She also enjoys kayaking, baking, and photography. Co-Founder, Pediatric Hematologist Consultant Anthony Chan Dr. Chan is a Professor/Pediatric Hematologist and holds a McMaster Children's Hospital/Hamilton Health Sciences Chair in Pediatric Thrombosis and Hemostasis (second term). He is recognized nationally and internationally as an expert in the field of pediatric thrombosis and bleeding disorders. He shares his expertise in thrombosis by providing around-the-clock free consultation, through the 1800NOCLOTS service, to pediatric healthcare professionals worldwide seeking assistance with the treatment of children with complex problems. He also enjoys spending time with his family and reading books. Educator & Learner Teddy Hi my name is Teddy! I help teach everybody about hemophilia. I like playing sports such as swimming. I also like riding my bike, but I make sure that I am safe by wearing my helmet and kneepads. I am always learning about my hemophilia from my amazing healthcare team and I am excited to share what I learn with you! Child Life Specialist Consultant Nate Seroski Nate is a Certified Child Life Specialist at McMaster Children’s Hospital in the pediatric Hematology/Oncology department. In his practice, Nate is passionate about supporting kids with chronic illnesses understand and cope with difficult hospital experiences through the use of specialized play activities. Outside of the hospital, Nate is a rock climbing instructor, taking groups of all ages on climbing courses. He enjoys knitting gifts for his friends and playing board games. Child Life Specialist Consultant Allison Sohanlal Allison is a Certified Child Life Specialist with 18 years of experience advocating for the psychosocial care of children, youth and families in both clinical and academic environments. Her clinical experience in pediatrics involves both community and healthcare settings. For the past 10 years, Allison has held a faculty position as an assistant professor at McMaster University as part of the child life graduate program within the Department of Pediatrics. Physiotherapist Consultant Karen Strike Karen Strike currently works as a physiotherapist in the bleeding disorders program at McMaster University Medical Center, Ontario, Canada. She completed her degree in Kinesiology and Masters in Physiotherapy at McMaster University. Karen is an Assistant Clinical Professor (Adjunct) at McMaster University and a part-time faculty member at Mohawk College. In addition to her clinical role as the physiotherapist with the Hamilton Niagara Hemophilia Treatment Centre, Karen is a PhD Candidate in Rehabilitation Science at McMaster University. Her principal research areas include best practices for the assessment and management of the musculoskeletal implication of a bleeding disorder, point of care ultrasonography, patient engagement and physiotherapy scope of practice. Social Worker Consultant Linda Waterhouse Linda Waterhouse has her Master of Social Work from the University of Toronto. She has worked as the social worker with the Hamilton Bleeding Disorders Clinic at Hamilton Health Sciences since 1991, covering both the pediatric and adult bleeding disorders clinic. She has twice been the Co-Chair of the Canadian Social Workers in Hemophilia Care (CSWHC) and is also the Co-Chair of the Social Work Professional Practice Committee at Hamilton Health Science. Pediatric Hematologist Consultant Mihir Bhatt Pediatric Hematologist/Oncologist with a special interest in bleeding and clotting disorders; Consultant in the first provincial Young women’s blood clinic at McMaster Hobbies: Cricket, Travelling, Foodie Nurse Consultant Rebecca Goldsmith . Nurse Consultant Kay Decker . 9 Student Learners Master's Student at Stanford University YaJing Liu YaJing is passionate about improving child health and interested in clinical research. She aspires to become a healthcare professional and an expert in the scientific field. Some of her hobbies are swimming, reading, journaling, arts and crafts, and volunteer work. Project: Resource Compilation Medical Student at Queen's University Ranmeet Dulai My name is Ranmeet and I was in the Child Health Specialization in the Bachelor of Health Sciences Program at McMaster University. During my time at DATCH, I’ve primarily worked on the Menarche Project You’ve Got This. Period. booklet. Some of my hobbies include art, karate, and reading. In the future, I hope to pursue a career where I get to work with children. Project: Menarche Booklet Law Student at Harvard University Farzam Karimi Farzam is a graduate of the McMaster Health Sciences program with a specialization in child health and is attending Harvard Law School in the fall. He began his journey with DATCH through his practicum placement, and transitioned Hemoworld into his senior thesis. His hobbies are Martial Arts and meditation and his experience includes Reservist Soldier for the Canadian Army and the North American Focal Point for the United Nations Major Group for Children & Youth. Project: Video Game Medical Student at McMaster University Josephine Kearney Hi, I’m Josie! I started with DATCH as a third-year practicum student in the Child Health Specialization in the BHSc program at McMaster. I am now a first-year medical student at McMaster and excited to continue my involvement with DATCH as a volunteer. In my free time, I love to knit, bake, and play Animal Crossing! Project: Menarche Booklet Undergraduate Student at McMaster University Keshvi Bhatt My name is Keshvi Bhatt and I have just completed my first year in Life Sciences at McMaster University, and will be entering my second year in BioPsych this September! I am currently working on a project for DATCH to create physical activity videos for children with hemophilia aged 2-7. In my pastime, I enjoy cooking, hiking, and spending time outdoors when possible. I also love to dance and listen to music to relax! Project: Exercise Videos Project: Research (Tool Validation) Undergraduate Student at McMaster University Julia Habashy Julia Habashy is pursuing her fourth-year Bachelor of Health Sciences degree, specializing in Child Health at McMaster University. She is a collaborator with the DATCH project, developing an educational colouring book for children with hemophilia to learn about living with hemophilia. Julia continues to use art to advocate for accessible health care, improve students’ educational outcomes, and more! In her spare time, she enjoys running, creating videos, travelling, and fam-time. Project: Colouring Sheets Undergraduate Student at McMaster University Muhammad Rashid Muhammad is an undergraduate student at McMaster university, currently in his 3rd year in the Bachelor of Health Sciences program, with a specialization in Child Health. He hopes to pursue a career in pediatric medicine, with interests in orthopaedics and internal medicine. Outside of academics, he loves spending his time through videography, graphic design and following soccer. Project: Research (Tool Validation) Project: Comic Book on Port Infections Undergraduate Student at McMaster University Nicholas Lum Nicholas is a 3rd-year undergraduate student who is attending McMaster University as part of the Bachelor of Health Sciences Program, where he is enrolled in the Child Health Specialization. He aspires to pursue a career in medicine, where his interests lie in pediatrics and neurology. Outside of the classroom, you can find him closely following his favourite sports (soccer and hockey), playing guitar or piano, listening to old vinyl records, and spending time with his family Project: Comic Book on Dental Care Undergraduate Student at McMaster University Nick Teller Hi, I’m Nick! I am a third-year student in the Child Health Specialization in the BHSc program at McMaster University. I am currently a practicum student working on bringing resource awareness to the hemophilia community. In my free time, I enjoy running, listening to music, and playing chess. Project: Communications LOOKING TO VOLUNTEER? Our team is always open to providing learning opportunities. A lot of our work and ideas come from our wonderful volunteers. If you are interested in volunteering your time, please send us an email with your CV attached to DATCH@mcmaster.ca
- Contact Us | DATCH Education
Connect with us! Contact Do you have any questions or feedback about the materials DATCH has produced? Do you have any ideas on the content you want to see DATCH make? Do you have any material formats that you would like produced? Are you looking to get involved with the DATCH project? Have questions and want to learn more about our work? We would love to hear from you to make sure that we are producing great educational content and to continue improving our materials! Email DATCH@mcmaster.ca First Name Last Name Email Message Send Thanks for submitting!