Pediatric Consumer Health Information
A core bibliography prepared for a workshop November 16, 1999
Updated and expanded December 21, 2005
by Brenda Pfannenstiel, MALS, MA
Coordinator
Kreamer Family Resource Center
Children's Mercy Hospital & Clinics
2401 Gillham Road
Kansas City, MO 64108
816-234-3900
bpfannenstiel@cmh.edu
http://www.childrens-mercy.org/fr/
There are many parenting books (e.g., Parenting that works by Edward Christophersen and Susan Mortweet, 2002), which I won't list here. I would only suggest that you include parenting books that acknowledge different ethnic groups (e.g., Black Parenting Book), multiple births (e.g., Twins!, or Multiple Blessings), and different family configurations (e.g., To Grandmothers' House We . . . Stay).
A good medical dictionary is vital to any consumer health collection. Consider Mosby's Medical, Nursing, & Allied Health Dictionary which is written more accessibly than a Stedman's or Taber's and which includes many color pictures and illustrations, along with appendices covering pediatric developmental milestones, nutritional content of foods, Spanish-French-English equivalents of common medical terms and phrases, conversion charts, etc.
If you have one shelf for pediatric consumer health, consider these:
Child Health and Development:
Caring For Your Baby and Young Child: Birth to Age 5 Steven P. Shelov, MD, Editor-in-Chief (NY: Bantam Books, 2004) available in English and Spanish from the AAP Bookstore at http://www.aap.org/
Caring For Your School-Age Child: Ages 5 to 12 Edward L. Schor, MD, Editor-in-Chief (NY: Bantam Books, 1999) available from http://www.aap.org/
Caring For Your Teenager Donald E. Greydanus, MD, Editor-in-Chief (NY: Bantam Books, 2003) available from http://www.aap.org/
Baby & Child Health: the Essential Guide from Birth to 11 Years Jennifer Shu, MD, Editor-in-Chief (NY: DK Pub., 2003) available from http://www.aap.org/
American Medical Association Complete Guide to Your Children's Health Edward S. Traisman, MD, Editor (NY: Random House, 1999)
Illness
KidsHealth Guide for Parent: Pregnancy to Age 5 Steven A. Dowshen, et al.( Chicago: Contemporary Books, 2002)
What to Do When Your Child Gets Sick Gloria Mayer and Ann Kuklierus. ( La Habra, CA: Institute for Healthcare Advancement, 2003) Low literacy book available in English, Spanish, and Vietnamese from http://www.iha4health.org/
What to Do for Teen Health by Gloria Mayer and Ann Kuklierus ( La Habra, CA: Institute for Healthcare Advancement, 2003) Low literacy book available in English and Spanish from http://www.iha4health.org/
Children's Hospital of Philadelphia Guide to Common Childhood Infections Louis M. Bell, MD (NY: Macmillan, 1998)
This book tells the parent how to take care of the child, when to call the doctor, how long the child is contagious, etc. The same thing can be done online at http://www.kidshealth.org/parent/infections/
Columbia University Department of Pediatrics Children's Medical Guide Dr. Steve Z. Miller and Dr. Bernard Valman (NY: DK Publishing, 2002)--entries are brief, but with excellent illustrations.
The Children's Hospital Guide to Your Child's Health and Development Alan D. Woolf, M.D. editor (Perseus Publishing, 2002)
American Academy of Pediatrics Guide to Your Child's Symptoms: The Official, Complete Home Reference, Birth Through Adolescence Donald Schiff, MD and Steven P. Shelov, MD, editors (NY: Villard, 1997) available from http://www.aap.org/
Your Child in the Hospital: A Practical Guide for Parents Nancy Keene (O'Reilly, 1997) also available in Spanish from http://www.patientcenters.com/
Immunizations & Infectious Diseases Margaret C. Fisher, editor-in-chief (AAP, 2005) available from http://www.aap.org/
Breaking the Antibiotic Habit: A Parent's Guide to Coughs, Colds, Ear Infections, and Sore Throats Paul A. Offit, MD et al. (NY: John Wiley & Sons, 1999)--an area of controversy as parents sometimes demand antibiotics for viral illnesses, resulting in overuse of antibiotics and the development of antibiotic-resistant strains of bacteria.
Drugs. Nutrition, Feeding:
American Academy of Pediatrics Guide to Your Child's Nutrition William H. Dietz, MD and Loraine Stern, MD, Editors (NY: Villard, 1999) available from http://www.aap.org/
USP DI Advice for the Patient: Drug Information in Lay Language --annual--for all ages but includes information specific to children and adolescents; also online at http://www.nlm.nih.gov/medlineplus/druginformation.html
Child of Mine: Feeding with Love and Good Sense Ellyn Satter (Bull Pub., 2000)–a classic for a reason!
Disabilities and Special Needs:
Encyclopedia of Genetic Disorders and Birth Defects James Wynbrandt and Mark D. Ludman, M.D. ( New York: Facts on File, 2000) and/or
NORD Guide to Rare Disorders ( Philadelphia: Lippincott Williams & Wilkins, 2003) Both books describe the more uncommon health conditions of children, and list directory information for associations that provide information and support.
Health-Related Disorders in Children and Adolescents edited by LeAdelle Phelps (Washington, DC: American Psychological Association, 1998)--this book has brief chapters on a variety of disorders, ranging from ADHD to Williams syndrome, with a brief overview, a discussion of psychoeducational implications, and a discussion of outcomes, with a brief resource list--often just what a newly diagnosed child's parents, grandparents, or teacher wants to know: what does this diagnosis mean for my child's future?
The Educator's Guide to Medical Issues in the Classroom edited by Frank M. Kline, Larry B. Silver, Steven C. Russell. ( Baltimore : Paul H. Brookes, 2001)--covers the effects of medical, neurological, sensory processing, emotional and behavioral disorders on the child's success in school.
That's My Child: Strategies for Parents of Children with Disabilities Lizanne Capper (Washington, DC: Child & Family Press, 1996)--working with the healthcare team, working with school systems, day care, family support, etc.
When Your Child Has a Disability Mark L. Batshaw, M.D. ( Baltimore: Paul H. Brookes, 2001)
Parenting Your Premature Baby and Child: The Emotional Journey by Deborah Davis and Mara Tesler Stein (Golden, CO: Fulcrum Pub., 2004)
Newborn Intensive Care: What Every Parent Needs to Know Jeanette Zaichkin ( Santa Rosa, CA: NICU Ink, 2002)
Pediatric Tracheostomy Home Care Guide Cynthia M. Bissell ( Grafton, MA: Twin Enterprises, 2000)
Injury Prevention and Emergency Response:
The Perfectly Safe Home Jeanne Miller (Hartville, OH: William Gray Publishing, 1991)–still a great resource for child-proofing one/s home.
Home Safe Home Debra Lynn Dadd (Tarcher, 1997)–safe alternatives to toxic household products.
First Aid for Children Fast Johns Hopkins Children's Center (NY: DK Publishing, 1994)--really an example of a book parents should have at home; if the child is bleeding, choking, or not breathing it is not the time to visit the library for a book! This book has very clear illustrations and instructions; a good learning resource.
Remember also family health guides which include information for children; such guides are available from Johns Hopkins, Harvard Medical School, AMA, Mayo Clinic, American College of Physicians.
Also consider:
Caring for the Mind: the comprehensive guide to mental health Dianne R. Hales and Robert E. Hales (NY: Bantam, 1996)--not exclusively a pediatric reference work, but includes excellent lay language explanations of children's behavioral and psychiatric disorders, as well as mental illnesses that commonly reveal themselves in adolescence (bipolar disorder, schizophrenia, etc.)
If you have the space and $, consider collecting books on common, long-term medical problems such as asthma, autism, hydrocephalus (Toporek, Chuck--Hydrocephalus), juvenile diabetes, epilepsy, cerebral palsy, cystic fibrosis (Orenstein, David--Cystic Fibrosis), congenital heart disease (Neill, Catherine--Heart of a Child and Wild, Cheryl--Heart Defects in Children), Down's Syndrome, neuromuscular disorders (Thompson, Charlotte--Raising a Child with a Neuromuscular Disorder), premature babies (Manginello, Frank--Your Premature Baby and others), etc. See information on publishers and vendors, below.
Books for kids:
Consider books about how the human body works, and picture books that promote acceptance of children with medical differences, e.g., Be Good to Eddie Lee, Andy and the Yellow Frisbee, My Friend Emily, Nick Joins In, Rolling Along with Goldilocks and the Three Bears) and describe common medical experiences (Going to the Hospital by Fred Rogers, A Visit to the Sesame Street Hospital, Chris Gets Ear Tubes, When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children).
The Disease Book: A Kids' Guide Margaret O. Hyde and Elizabeth H. Forsyth, MD (NY: Walker, 1997)
Healthy Me Michelle O'Brien-Palmer (Chicago: Chicago Review Press, 1999)--health and safety activities for children 5-8.
The Healthy Body Cookbook Joan D'Amico and Karen Eich Drummond (NY: John Wiley, 1999).
Food and Nutrition for Every Kid Janice VanCleave (NY: John Wiley, 1999).
The Safe Zone: A Kid's Guide to Personal Safety by Donna Chaiet and Francine Russell (NY: Morrow Junior Books, 1998)
Anything from JayJo Books "Special Books for Special Kids" series (Taking Asthma to Camp, ZooAllergy, Taking Seizure Disorders to School, Taking Diabetes to School, etc.)
Publishers:
Woodbine House (www.woodbinehouse.com, 800-843-7323) Excellent books for children and for adults on disabilities, some also in Spanish. If you have a population coping with lifelong disabilities this collection is a great resource: ADD, autism, cerebral palsy, deafness, Down syndrome, spina bifida, etc.
Patient-Centered Guides (www.patientcenters.com) for a growing list of books on childhood cancers, wheelchair selection, mental health, etc.
JayJo Books (http://www.jayjo.com/) --Special Kids in School Series, mostly for ages 5-10.
American Diabetes Association (http://www.diabetes.org/shop-for-books-and-gifts.jsp) is a great source for books such as Sweet Kids. See also the
Juvenile Diabetes Research Foundation bookstore http://www.jdrf.org/index.cfm?page_id=100250
Epilepsy Foundation of America (www.efa.org) has a catalog/marketplace of affordable books and videos in English and Spanish, for children and adults.
Paul H. Brookes Publishing (http://www.brookespublishing.com/) for books on child development, education, and disabilities with a more advanced reading level.
Magination Press (www.maginationpress.com/) American Psychological Assn. has children's picture books on fears, therapy, etc.
National Cancer Institute (https://cissecure.nci.nih.gov/ncipubs/ )--some printed booklets also available on CancerNet, includes smoking cessation, nutrition, and cancer treatment.
Boys Town Press http://www.girlsandboystown.org/products/btpress/index.asp
Boulden Publishing (counseling resources) http://www.bouldenpublishing.com/
Centering Corporation (grief resources) http://www.centering.org/
Childswork Childsplay http://www.childswork.com/
Western Psychological Services (compare prices to Childswork Childsplay) http://www.wpspublish.com/
Brain Injury Association phone 800-565-0668 http://orders.balmar.com/store/entrance.asp
Kids with Heart http://kidswithheart.org/ (congenital heart defects, etc.)
Baby Hearts Press http://www.babyheartspress.com/ (congenital heart defects, etc.)
NCES (Nutrition Counseling Education Services) http://www.ncescatalog.com/
Johns Hopkins Press Health Books http://www.press.jhu.edu/books/ (few pediatric consumer health titles, but worth checking)
Zero to Three (multimedia resources) http://www.zerotothree.org
National Braille Press http://www.nbp.org/
Special Needs Books http://www.specialneedsbooks.com/index.html
If you have space and $, consider these children's book series: My Health series of children's books from Franklin Watts at http://librarypublishing.scholastic.com/, the popular books at Kane/Miller (Everyone Poops, The Gas We Pass) http://www.kanemiller.com/, or series like the Twenty-First Century Medical Library from Lerner at http://www.lernerbooks.com.
Omnigraphics--think twice! Expensive titles, which in authority, currency, and readability do not often improve upon what can be readily found on the more responsible WWW sites. Be selective when considering this series. Phone 800-234-1340. http://www.omnigraphics.com/
Medical Book Vendors who carry consumer health titles:
Majors http://www.majors.com/ (Now owned by Baker & Taylor)
Matthews http://www.matthewsbooks.com/
There are also a vast array of suppliers for brochures on child care, safety, disease and drug topics, but brochures and pamphlets are a headache to keep organized and current so you may elect not to keep that information. They are intended as give-aways rather than as part of your permanent collection, so keep them in mind to purchase for health fair exhibits. Increasingly, such information is available on the World Wide Web to be printed as needed; see web site listings below.
Journals:
Parenting magazines such as Parenting, Child, etc. have columns on health, safety, and nutrition. Many children's magazines such as Child Life, Humpty Dumpty, and Turtle have a regular column called "Ask Dr. Cory." There are many magazines and newsletters devoted to specific disorders. If your shelf space and funds are limited, consider these:
Exceptional Parent (www.eparent.com) --for parents of disabled children
Current Health 1 and 2 (www.weeklyreader.com) – health education for middle school and high school children.
Good General WWW Consumer Health Information:
MedlinePlus http://medlineplus.gov/ (doctor/hospital/consumer health library directories, growing list of health topics including many relevant to children's health, e.g., asthma, teenage pregnancy, etc., links to authoritative resources, interactive tutorials, drug information, a medical encyclopedia with pictures, in English and Spanish)
HealthFinder http://www.healthfinder.org/ (has a section on children but you can also search to find a wide array of useful information, e.g., hydrocephalus; also searches in Spanish)
Mayo Clinic Health Oasis http://www.mayohealth.org/
Med Help http://www.medhelp.org/ (patients can ask questions of doctors--unlike some "ask the doctor" sites, this one meets high standards--HON code approved)
NOAH http://www.noah-health.org/ (includes lots of pediatric brochures in English and Spanish; can be searched in either language then toggled to other language)
Family Village http://www.familyvillage.wisc.edu/ (a global community of disability-related resources, note its shopping mall for adaptive clothing and assistive technology, its links to recreation and travel resources, and its search feature which enables you to pull up quality-filtered resources for a given diagnosis. Scoliosis, Apert's syndrome, Down syndrome, ADHD--any kind of birth defect or disability might be found here, with contact information for support, online FAQs and brochures, and web sites.)
Genetic Alliance Directory http://www.geneticalliance.org/
NORD (National Organization for Rare Disorders) http://www.rarediseases.org
Genetics Home Reference http://ghr.nlm.nih.gov/
Medem Medical Library http://www.medem.com/MedLB/medlib_entry.cfm
CDC Health & Safety Topics http://www.cdc.gov/
Internet Mental Health http://www.mentalhealth.com/ or Mental Health Net http://mentalhelp.net/
CAPHIS http://caphis.mlanet.org/ (Consumer and Patient Health Information section of the Medical Library Association)
RXlist http://www.rxlist.com (drug information with a forgiving search engine for spelling-challenged searchers)
Pediatric WWW CHI for parents:
KidsHealth http://www.kidshealth.org/ (The Parent's section is especially good for infectious diseases, but also has excellent safety information and even information on subjects such as urinalysis.)
American Academy of Pediatrics http://www.aap.org/ (Especially the Parenting Corner, which includes online brochures on topics concerning children and teens.)
National Information Center for Children & Youth with Disabilities http://www.nichcy.org/publist.htm (Includes lots of online publications concerning education and disabilities, in English and Spanish)
Internet Resources for Special Children
http://www.irsc.org/
American Academy of Child & Adolescent Psychiatry Facts for Families http://www.aacap.org/info_families/index.htm (multiple languages)
LD Online (learning disabilities)
http://www.ldonline.com/
Pocket Child Health Guide (AHRQ, PDF file in English or Spanish) http://www.ahrq.gov/clinic/ppipix.htm
Parents' Common Sense Encyclopedia http://www.sleeptight.com/EncyMaster/index.html
CancerNet Childhood Cancers http://cancernet.nci.nih.gov/cancerinformation/cancertype/childhood/
Good WWW for kids:
Neuroscience for Kids http://faculty.washington.edu/chudler/neurok.html
KidsHealth for Kids http://www.kidshealth.org/kid/index.html
KidsHealth for Teens http://www.kidshealth.org/teen/
My Pyramid for Kids http://www.mypyramid.gov/kids/index.html
BrainPOP Health Movies http://www.brainpop.com/health/seeall/ (most require subscription)
Innerbody (human anatomy and automobile construction!) http://www.innerbody.com/
Tutorials for Children and Families (asthma, cerebral palsy, chronic constipation and encopresis, cleft lip and palate, GERD, ADHD) http://www.healthsystem.virginia.edu/internet/pediatrics/patients/Tutorials/home.cfm http://www.healthsystem.virginia.edu/internet/pediatrics/patients/Tutorials/home.cfm
Virtual Children's Hospital for Kids http://www.vh.org/VCH/Patients/ForKids.html
Children With Diabetes http://www.childrenwithdiabetes.com
Bandaids & Blackboards (kids with medical problems go to school) http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
Kidd Safety (games!) http://www.cpsc.gov/kids/kidsafety/index.html
Mercy Bear's Big Adventures http://www.childrens-mercy.org/mercybear/index.htm
Space Doctor Game http://www.bbc.co.uk/science/space/playspace/games/spacedoctor/
Nobel Prize in Medicine http://nobelprize.org/medicine/educational/
American Dental Association Gameshttp://www.ada.org/public/games/index.asp
DigiTeeth - the zany oral hygiene game http://www.gamezero.com/gamezero/games/1998/teeth/
A Science Odyssey: You Try It: Doctor Over Time Activityhttp://www.pbs.org/wgbh/aso/tryit/doctor/shockwave-nojs.html
Jump Into a Healthy Life (jump rope skills and heart health) http://library.thinkquest.org/5407/index.shtml
FDA Kids' Home Page http://www.fda.gov/oc/opacom/kids/default.htm
FDA Health Information for Teens http://www.fda.gov/oc/opacom/kids/html/7teens.htm
CDC Tobacco Tips 4 Youth http://www.cdc.gov/tobacco/tips4youth.htm
Human Body "Blending In But Staying Special" (organ donation, body systems) http://library.thinkquest.org/5777/
FEMA for Kids http://www.fema.gov/kids/
LD Online KidZone (learning disabilities) http://www.ldonline.org/kidzone/kidzone.html
Cool the Burn (types of burns and how they heal) http://www.cooltheburn.com/
Activteen (website for disabled teens) http://www.disabilitycentral.com/activteen/
WOW Online (Winners on Wheels interactive learning for wheelchair-bound kids) http://www.wowusa.com/
Learn About Genes and DNA http://www.genecrc.org/site/ko/index_ko.htm
Remember, many web sites for associations that support families with particular diseases or disorders have a kids' corner or teen "room" for their younger members. Use Family Village (www.familyvillage.wisc.edu) to find the appropriate web site. There are many sites devoted entirely to children with specific disorders (Alopecia Kids, Teens with Crohn's), of varying quality.
CD-ROM
Books are often more convenient than CD-ROMs, particularly if your collection is not already mounted in a CD tower. In my personal experience, CD-ROM health information is underused, and parents often find that information is available in more depth, with more convenience, and is more easily printed from book sources. Some children's CD-ROM health software to consider includes: My Amazing Human Body CD-ROM (Ages 6-10, from DK Multimedia, c1997, ISBN 0-7894-2240-9, Mac or Windows), Kidz with Leukemia: A Space Adventure (for children, teens, and parents, from the Degge Group, c2000, ISBN 0-963202-02-2, http://www.kidzwithleukemia.com, Windows), Air Academy: The Quest for Airtopia (asthma education for kids and teens, from Merck c1999, for Mac or Windows), and the Starbright Explorer series (http://www.starbright.org/).
Jr. Doctor Game (I have not tried this one) http://www.terragame.com/educational/1000000456.html
Pediatric CHI software:
These are actually commercial sources of patient education handouts for pediatricians to give to patients.
Pediatric Advisor from Clinical Reference Systems
http://www.patienteducation.com/B7.htm
Patient Education for Children, Teens, and Parents (English or Spanish)
http://www.aap.org/
Videos:
Choose videos for common problems and issues first; depend on access rather than ownership to provide your clientele with videos on less common subjects, e.g., brachial plexus injuries or progeria. What follows are suggestions for relatively inexpensive (under $100) films.
Baby Talk: the video guide for new parents (Poly Health Media, 60 min., 1997)
Begin with Love (in Spanish and English, AAP/Civitas, http://www.aap.org/family/beginwithlove.htm)
Caring for Your Newborn: a parent's guide to the first three months (AAP, 40 min., 1997)
Your Child's Anesthesia (Nemours Foundation, 22 min., 1996)
What am I, chopped liver? (& other titles from Starbright Foundation, 15 min., 1998)
It's potty time (Learning Through Entertainment, 25 min., 1991)
It's sleepy time (Learning Through Entertainment, 30 min., 1993)
Shaking, Hitting, Spanking: What to do instead (Learning Seed, 30 min., 1995; Spanish version also)
Survival Tips for Teens from Dysfunctional Families (TMW Media Group, 22 min., 1998; for grades 7-12)
Small Differences (LMD, 19 min., 1995)
Kids Under the Influence (Films for the Humanities & Sciences, 58 min., 1997)
Fetal Alcohol Syndrome and Other Drug Use During Pregnancy (Films for the Humanities & Sciences, 19 min., 1994)
Why Can't Michael Pay Attention? Understanding Attention Deficit Hyperactive Disorder (Learning Seed, 21 min., 1998)
Mastering Asthma: a family's guide to understanding and living with childhood asthma (Nemours Foundation, 20 min., 1998)
Dangerous Game: Major League baseball players tell teens why smokeless tobacco users are playing a dangerous game (National Cancer Institute, 6 min., 19??)
Never Shake: Preventing Shaken Baby Syndrome (multiple languages, 11 min., 2001)
Babysitting 101 (includes baby care, CPR, etc., 47 min., 2005)
Down Syndrome: the First 18 Months (108 min., 2003)
Successfully Parenting Your Baby with Special Needs (56 min., 1999)
Video Sources:
I have not purchased videos from all these sources, so--buyer beware. One of my ongoing frustrations about many video catalogs is their failure to indicate copyright dates. These video sources are primarily for consumer health/health promotion/health & safety education, rather than patient education videos that demonstrate and teach specific procedures and patient care.
Aquarius Health Care Videos http://www.aquariusproductions.com/
At-Risk Resources http://www.at-risk.com
Attainment Company(videos, software, equipment for children & adults with special needs) http://www.attainmentcompany.com/
Child Development Media http://www.childdevmedia.com/
Fanlight Productions http://www.fanlight.com/
Films for the Humanities and Sciences http://www.films.com/
Injoy Videos (birth and parenting videos for teens and adults) http://www.injoyvideos.com/
Learning Seed http://learningseed.com/
Library Video http://www.libraryvideo.com/ (note the power search feature!)
MarshMedia (all health titles available in English or Spanish) http://www.marshmedia.com/
Miller-Fenwick Patient Education Library http://www.milner-fenwick.com/
Pyramid Media http://www.pyramidmedia.com/
Starbright Videos with Attitude http://www.starbright.org/
Sunburst (K-12 health education/risk aversion) http://www.sunburst.com/
United Learning http://www.unitedlearning.com/
Vida Health Communications http://www.vida-health.com/
Patient Education Sources and Miscellaneous:
NIMCO, Inc. (videos, charts, books, CD-ROMs, models) http://www.nimcoinc.com
Channing L. Bete (health education brochures) http://www.channing-bete.com
Krames (patient education brochures, database) http://shop.krames.com/
ETR Associates (brochures, charts, videos) http://www.etr.org
Parlay International (health education resources) http://www.parlay.com/
Denoyer Geppert International (models, charts, CD-ROMs, books, videos) http://www.denoyer.com/
3B Scientific (models, charts) http://www.3bscientific.com/
Beyond Play (Early Intervention books, tapes, toys) http://www.beyondplay.com/
Tash! (assistive technology) http://www.tashinc.com/
Technology for Education, Inc. (assistive technology, books, videos) http://www.tfeinc.com
Crestwood Company (communication aids) http://www.communicationaids.com/
Abilitations (physical therapy and playground equipment) http://www.abilitations.com
FlagHouse (therapeutic recreation) http://www.flaghouse.com/
Toys 'R' Us Toy Guide for Differently-Abled Kids http://www.toysrus.com
Playscapes (children's environments) http://www.playscapes.com
MediBadge (stickers, novelty toys, etc.) http://www.medibadge.com
I make no guarantee that this list of pediatric consumer health resources is complete, but it is a place to start. If you have a favorite resource that I have overlooked, please let me know.