General Health-Related Sites
Agency for Healthcare Research and Quality: Getting Safer Care: This US-Government website has a collection of materials that can help you prevent errors, get quality care and use hospitals and clinics to stay safe when you or a family member are a patient. http://www.ahrq.gov/consumer/safety.html
The American Academy of Pediatricians (AAP): The website of the American Academy of Pediatrics holds a wealth of knowledge for the parent or guardian of a child with a medically complex condition. The site is built for physicians primarily but it is simple and straightforward and offers the parent much potential referral information. You can also visit the NY State Chapter’s site. http://www.ny3aap.org/home/default.htm
AAP also has a new website dedicated to parenting needs and if you register (which is free), you can receive pediatric health information specially customized for you and your family.
CAPS–Consumers Advancing Patient Safety: This site has a wide variety of consumer tools and toolkits regarding quality care, hospitalization, medication and more. http://patientsafety.org/
Children Who are Technologically Dependent and Medically Fragile: Medical Issues and Health Concerns: A site by by two Registered Nurses that describes the medical and health concerns for service providers, and as such is an excellent guide for parents and families. http://www.csun.edu/~hfedu009/innovations/html/medicalresource.html
Cincinnati Children’s Hospital’s website offers a Special Needs Resource Directory that includes Medical Terms and Definitions. http://www.cincinnatichildrens.org/svc/alpha/c/special-needs/resources/community.htm
Mattress and Bedding Guide for People with Disabilities: Latest findings show that over 56 million disabled adults and children reside in the US and sleep can be an extremely difficult issue for that population. This site is a comprehensive guide to help increase awareness about disabilities and sleep including expert advice for sleep products and bedroom setup for those with disability, curated resources for all of the five disability categories, caregiver resources and much more. https://www.bestmattressreviews.com/mattress-and-bedding-guide-disabilities/
Autism Spectrum Disorder and Sleep: Studies have shown upwards of 80% of young people diagnosed with autistic spectrum disorder (and that number is equally bad for adults) aren’t getting the necessary amount of sleep. This guide covers everything from a comprehensive overview of ASD, how it affects sleep, expert sleep management information for people with ASD and much more. https://www.tuck.com/autism-spectrum-disorder-and-sleep/
KidsHealth Comes From Nemours: The award-winning KidsHealth comes from Nemours, one of the largest nonprofit organizations devoted to children’s health. This is an outstanding site with all manner of information about medical matters, health, social services and more. http://kidshealth.org/parent/kh_misc/nemours.html
The Medically Fragile Child/Foster Care Training Manual: A website/blog by a Registered Nurse that includes the “Medically Fragile Training Manual” for foster parents. This manual is directed to the basic level of care that is needed for the child who is medically fragile provided by foster parents and adoptive parents. Written by a Registered Nurse with a licensed home for children with medically fragile conditions in Southern California. http://medicallyfragilechild.com/
MedlinePlus: A Federal government website with searchable medical information on 700+ diseases and conditions, a medical encyclopedia and dictionary. http://www.nlm.nih.gov/medlineplus/%20Medline
National Transitions of Care Coalition: Taking Care of my Health Care: This guide will help you or your caregiver be active in either your own healthcare or as you help care for someone else. Take this with you each time you meet with a healthcare provider (such as a doctor, nurse, pharmacist, or social worker); visit a hospital, nursing center, or other healthcare facility; or receive care in your home. Using this guide can help you keep track of your health information, and may prevent other health problems. http://www.ntocc.org/Portals/0/Taking_Care_Of_My_Health_Care.pdf
Planning for Your Discharge: A checklist for patients and caregivers preparing to leave a hospital, nursing home, or other healthcare setting. http://www.medicare.gov/Publications/Pubs/pdf/11376.pdf
Seattle Children’s Hospital Center for Children with Special Needs: The Center for Children with Special Needs provides information to families and professionals focusing on children who have chronic physical, developmental, behavioral or emotional conditions such as asthma, cancer, autism, or cerebral palsy. While this site primarily serves families in the Pacific Northwest, much of the information on the site is helpful. The site has an extensive list of diagnoses that are chronic conditions in children that will link you to multiple reliable web sites that contain valuable information. http://cshcn.org/
In the Physician’s Office, In the Hospital
This selection of links will support your ability to access quality healthcare. The section’s links also touch on access to information, involving your family members in your care, and other aspects important to a hospital stay.
Ask Me Three: A patient education program of the National Patient Safety Foundation designed to “promote communication between health care providers and patients in order to improve health outcomes” with three important questions to ask when you are visiting a physician. These simple questions are useful and help you obtain the information you need from your physician or nurse. http://www.npsf.org/askme3/index.php
The Joint Commission: A not-for-profit organization that accredits and certifies more than 18,000 health care organizations and programs in the United States. This site provides information concerning follow-up care plans once you leave the hospital in their “Speak-Up” Series. http://www.jointcommission.org/
MyMedSchedule.com: This is a site that can be linked to a cell phone to receive reminders to take your medications by text or to your email, as well as providing such prompts as refill reminders, record of daily medications—strengths, dosage and purpose and medicine schedules for your child or young adult. https://secure.medactionplan.com/mymedschedule/
National Alliance for Caregiving: Offers resources for caregivers and helps family members and patients themselves prepare for a smooth discharge process. http://immn.org/nac/resources/publications
United Hospital Fun Resources for Family Caregivers: An excellent site that also has resources on long-term care. http://www.uhfnyc.org/initiatives/family-caregiving
Who’s Who in the Hospital: TeensHealth: Written for teens, this site provides descriptions of the professionals they’ll encounter in the hospital. Part of the KidsHealth websites by The Nemours Foundation that provides teens with up to date information on health issues. http://kidshealth.org/teen/your_body/medical_care/in_hospital.html