Learning About Diagnoses
Each parent and family member may have a different reaction, which is why it’s important to be patient and understanding with spouses, grandparents, and others. Single parents may find it difficult to wade through the emotions surrounding the diagnosis process alone, but it’s important to know that support is available. There are many support groups for parents of children with disabilities, some of which are specifically for single parents.
The initial period of evaluation for a suspected chronic health care condition is often very difficult for parents and family members. It may take weeks or months of testing and subspecialist evaluations before a diagnosis is made. In some cases, testing does not provide a formal diagnosis. When a diagnosis is made, parents and family members often experience shock and disbelief. Most physicians make every attempt to deliver sensitive diagnoses in a compassionate manner, but some styles of communication may lead to misunderstanding of a child’s condition and increase family stress. Caregivers may misinterpret written materials presented to them. Parents should review information they have read with their physician or specialist before making assumptions regarding a potential complication or prognosis. Parents may also realize that the “normal” goals and dreams they have had for their child may never happen – while this may be true, it also represents an opportunity for families to come together to create new goals and dreams.
Mothers often assume the role of primary caretaker for their chronically ill child, which can be exhausting and may create difficulties for both parents. Fathers may not feel included in their child’s daily routine, which can lead to feelings of distance between family members. While parents typically form a strong bond to their child regardless of the diagnosis, they may still struggle with the idea that their child may never experience certain milestones like prom, wedding, or even having a family of their own.
Siblings of a child with chronic or terminal illness often experience much of the same reactions as parents. Siblings have a special bond with one another and when one isn’t well the other(s) may be deeply affected. Siblings also experience a kind of loss when they realize the expectations they have for life with their sibling will have to give way to new expectations.
The first step in accepting a diagnosis of a chronic childhood illness in the family is the realization that parents and family members are not alone in their experiences. The next step is learning how to cope and thrive.
There are many mechanisms of coping that involve multiple aspects of life, including the psychological and physical. Good mental coping skills may sound simple, but when faced with a tough diagnosis it can be easy to forget these everyday tools, such as using your imagination and looking for the humor in complicated or overwhelming situations. Approach problems head on, and realize that sometimes you may have the answer but, if you don’t, it’s never a bad idea to seek out help.
Much information is available (see Internet Resources and Information Support sections) on coping with a new diagnosis, but less is written on how to thrive despite the diagnosis. Although life has changed and taken an unexpected direction, there are still positive outcomes to be expected for you and your child. Sometimes positive outcomes can be as simple as recognizing the everyday joys in life and appreciating the love you and your child have for each other.
It’s essential that you take an active role in your child’s healthcare. Ask questions and make it a point to stay informed about your child’s condition and treatment options. It is a good idea to ask your child’s physician about information you’ve read concerning the diagnosis, treatments, and other related problems. Even the most committed physician faces difficulties in keeping up with the latest scientific and practical information, especially about conditions that are uncommon. Give your physician time to review material you bring to their attention before expecting an in-depth discussion. Your physician and other healthcare providers should welcome the information you share and be appreciative of your willingness to help them help your child.
Much information about specific conditions and their care is offered in the Medical Home Portal's "Diagnoses & Conditions" section. Although that section is written primarily for physicians, we hope that families will also take advantage of its information. The menu of the diagnoses for which Modules have been developed can be viewed at Diagnoses & Conditions.
- Is the material free of spelling, grammatical, or typographical errors? These types of errors are a clue to a lack of quality control on the site.
- Are the sources of information listed so that you could cross-reference them from another site or published literature?
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This site provides authoritative and up-to-date health information from the world's largest medical library, the National Library of Medicine. Click on 'Health Topics' to find an extensive list of valuable links to reliable sources of information on your condition of interest. The 'Medical Encyclopedia' provides a brief summary of relevant information on each condition, and the 'Dictionary' offers definitions of many medical and other health related terms.
MedlinePlus Medical Dictionary
Comprehensive dictionary created by the National Library of Medicine and Merriam-Webster.
MedlinePlus Medical Encyclopedia
From the National Library of Medicine and A.D.A.M.; a comprehensive medical encyclopedia aimed at consumers, with lots of photographs and illustrations
- MedlinePlus Medical Dictionary
From the American Academy of Pediatrics, offers information and advice about child development, health, and parenting.
Children's Hospital Boston
To learn more about many pediatric conditions and the treatment options, visit the Children's Hospital Boston home page and click on 'Child's Health A-Z' for user-friendly information.
National Organization of Rare Disorders (NORD)
Provides information about many uncommon conditions, including rare "orphan" diseases, and links to organizations that provide services to individuals with rare diseases.
Click on 'Parents', 'Kids' or 'Teens' to use the Nemours web site 'search' box where you can enter the terms you are researching. The results are listed and marked with 'Parents', 'Kids', or 'Parents' to indicate the level at which the information is written.
This is an award-winning Federal Web site for consumers, developed by the U.S. Department of Health and Human Services together with other Federal agencies. Enter your term in the search box for easy to use definitions and current information.
Genetic and Rare Diseases Information Center (GARD)
Created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) - two agencies at the National Institutes of Health (NIH) - to help people find useful information about genetic and rare diseases. GARD provides access to experienced information specialists who provide current and accurate information - in both English and Spanish - about genetic and rare diseases.
Finding Reliable Health Information Online (genome.gov)
focused on finding reliable information about genetics and genetic conditions; from the National Institutes of Health, National Genome Research Institute
A User's Guide to Finding and Evaluating Health Information on the Web (MLA)
from the Medical Library Association; includes a brief guide and lists of recommended sites.
Consumer and Patient Health Information Section (MLA)
from a section of the Medical Library Association, provides a "Top 100 List" of health websites you can trust.
Evaluating Health Information (MedlinePlus)
gives an overview of finding and judging health information on the web, with links to more resources, including tutorials; from the National Library of Medicine.
Guide to Health Web Surfing (MedlinePlus)
offers a brief guide to judging the reliability of health information found on the web; from the National Library of Medicine
provides quackery-related information in an effort to improve the quality of health information on the Internet.
Health On the Net Foundation (HONcode)
is the website for an organization that certifies web sites that comply with their Code of Conduct aimed at standardizing reliability of health information on the web. Sites that meet the criteria and have been certified will display the HONcode symbol.
Alternative Therapies Fact Sheet
( 49 KB)
offers information, tips, and resources from the Utah Family Voices Health Information & Support center.
Intermountain Healthcare Clinical Genetics Institute
provides clinical medical genetics services and genetic couseling at two outreach clinics in Salt Lake City and Logan.