Care plans, visit notes, medical history, doctors’ names, and caregiver information in one place for easier sharing of care instructions for your child with complex health issues.
Families of kids with complex health care needs get information and paperwork from many sources. This Care Notebook organizes the information in one place to help families and providers share information.
The entire Care Notebook can be downloaded or personalized by choosing just the pages you need. The PDFs are fillable, so you can enter your child’s information on a computer or smartphone and save it online, or you can print out the pages and enter it by hand. The forms are available in English and Spanish.
Steps to Set Up Your Child’s Care Notebook (English)
Step 1: Gather information you already have
- Gather any health information about your child you already have. This may include reports from recent doctor’s visits, recent summary of any hospital stays, this year’s school plan, test results, or informational pamphlets.
Step 2: Download the entire care notebook or just the pages you want.
- Full notebook: Care Notebook.
- Picking the pages you want
- Which of these pages could help you keep track of information about your child’s health or care?
- Consider printing extra of the pages you will use more. If you do not have access to a printer, contact your state’s Family Voices (FVAO) or Health Information (F2F) Center.
Step 3: Decide which information about your child is most important to include
- What information do you look up often?
- What information do people caring for your child need?
- Consider storing other information in a file drawer or box where you can find it if needed.
Step 4: Put the Care Notebook together
Everyone has a different way of organizing information. The only important thing is to make it easy for you to find again. Here are some suggestions for supplies used to create a Care Notebook:
- Three-ring notebook or large accordion envelope to hold papers securely
- Tabbed dividers to create your own information sections
- Pocket dividers to store reports
- Plastic pages to store business cards and photographs
Steps to Set Up Your Child’s Care Notebook (Español) – Siga estos pasos para configurar el Cuaderno de Cuidado de su hijo
El Cuaderno de Cuidado está disponible para descargar o puede crear su libro personalizado eligiendo solo las páginas que necesita. Los formularios PDF se pueden completar, por lo que puede ingresar la información de su hijo en una computadora o teléfono inteligente si lo desea y guardarla en línea, o puede imprimir las páginas e ingresar la información de su hijo a mano.
- Paso 1: Reúna la información que ya tiene
- Reúna cualquier información de salud sobre su hijo que ya tenga. Esto puede incluir informes de visitas médicas recientes, resumen reciente de estadías en el hospital, plan escolar de este año, resultados de exámenes o folletos informativos.
- Paso 2: Revisa las páginas del Cuaderno de Cuidado (ver abajo)
- ¿Cuál de estas páginas podría ayudarlo a realizar un seguimiento de la información sobre la salud o el cuidado de su hijo?
- Imprima todo el Cuaderno o elija solo las páginas que desee. Considere imprimir más de las páginas que usará más.
- Si no tiene acceso a una impresora, comuníquese con el Centro de información de salud de familia a familia (F2F) o la Organización afiliada de Family Voices (FVAO) de su estado.
- ¿Cuál de estas páginas podría ayudarlo a realizar un seguimiento de la información sobre la salud o el cuidado de su hijo?
- Paso 3: Decida qué información sobre su hijo es más importante incluir
- ¿Qué información busca con frecuencia?
- ¿Qué información necesitan las personas que cuidan a su hijo?
- Considere almacenar otra información en un cajón o caja de archivos donde pueda encontrarla si es necesario.
- Paso 4: Arme el Cuaderno de Cuidado
- Cada quien tiene una forma diferente de organizar la información. Lo único importante es que te sea fácil encontrarlo de nuevo. Estas son algunas sugerencias de materiales utilizados para crear un Cuaderno de Cuidado:
- Libreta de 3 anillas o sobre grande tipo acordeón para sujetar papeles de forma segura.
- Separadores tabulados. Crea tus propias secciones de información.
- Separadores de bolsillo. Almacenar informes.
- Hojas de plástico. Almacenar tarjetas de presentación y fotografías.
- Cada quien tiene una forma diferente de organizar la información. Lo único importante es que te sea fácil encontrarlo de nuevo. Estas son algunas sugerencias de materiales utilizados para crear un Cuaderno de Cuidado:
Completo Cuaderno de Cuaderno (Complete Care Notebook Spanish)
Use páginas seleccionadas o todo el cuaderno: personalice.
Sections of the Care Notebook (English and Español)
Clicking the links below will download PDFs of the forms.
| Pages to keep track of child and family information | Páginas para realizar un seguimiento de la información del niño y la familia |
| Child Information Page 1 (Care Notebook) Child Information Page 2 (Care Notebook) | Página de Información del Niño 1 (Child Info Page 1 Care Notebook Spanish) Página de Información del Niño 2 (Child Info Page 2 Care Notebook Spanish) |
| Family Information Page (Care Notebook) | Página de Información Familiar (Family Info Page Care Notebook Spanish) |
| Scheduling Calendar (Care Notebook) | Calendario de Programación (Scheduling Calendar Care Notebook Spanish) |
| Notes Page (Care Notebook) | Página de Notas (Notes Care Notebook Spanish) |
Apps and Technology
Cell phones and tablets have changed the way we keep and view information. These days, not many people leave the house without a cell phone, which makes them a great tool. Many families are using app technology instead of paper to keep track of their complex child’s needs and information. By searching your app store, you may find more are being developed all the time.
There is a standard medical ID built into newer smartphones (Apple IOS and Android models) that could be used for teens and young adults. It has an area for medications, doctors, and emergency contacts. While this will not be a complete medical record, there is a surprising amount of information available, including a link to medical records. The information is for the owner of the smartphone, so this option would be for teens and young adults and might encourage them to take a more active role in their health.
Resources
Family Voices
A national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Locate your Family-to-Family Health Information Center by state.
Parent Training and Information Centers (PTI)
Provide training and information to parents of infants, toddlers, children, and youth with disabilities and to people who work with parents to enable them to participate more fully and effectively with professionals in meeting the educational needs of their children with disabilities. See the link for Download a List of Parent Centers across the USA to find the parent center in your state; U.S. Department of Education.
Family Voices (FVAO) or Health Information (F2F) Center
Family-to-Family Health Information Centers are nonprofit, family-staffed organizations that assist families of children and youth with special health care needs (CYSHCN). Locate state-based F2F HICs, providing support, information, resources, and training.
Article History
The Medical Home Portal last published this in April 2022. Topical Reviews in Pediatrics republished it in November 2024. The Medical Home Portal, retired in July 2024, provided diagnosis and management information for pediatric conditions, guidance for immediate steps after a positive newborn screen result, and in-depth family education to improve outcomes for children with complex medical care needs.
The full archive can be found at the Medical Home Portal Archive.
Topical Reviews in Pediatrics (TRIP) includes archival and updated content from the Medical Home Portal and features new, contemporary topics in pediatrics.
Initial publication: June 2008; last update/revision: April 2022
- 2022 revision: Tina PerselsA
- 2008 revision: Gina Pola-MoneyA
- 2007 first edition: Barbara Ward, RN BSA; Juan Carlos VasquezA
AAuthor; CAContributing Author; SASenior Author; RReviewer
