Responding to a Diagnosis

Within the Medical Home and the Portal

Although the Medical Home Portal is not designed to help with making a diagnosis, it does offer resources for the steps that come after learning your child’s diagnosis. Your child’s primary care physician or medical home provider should be the best resource for determining your child’s diagnosis. When you have a child whose development is delayed or who has chronic medical problems, not knowing the cause or not having a diagnosis can be frustrating, but once your child has a diagnosis, there will be new emotions to deal with, as well as new roles for parents and other family members.

Reactions to and Coping with Diagnosis: An Overview

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 have questions about how to cope with their child’s diagnosis on an emotional level, and sometimes the emotional impact of a child’s medical problems can be challenging for parents and family members.

Common Reactions

Though each child’s situation is unique and parents’ reactions will vary, some common feelings include anger, sadness, disappointment, fear, denial, rejection, guilt, and sometimes even a feeling of complete lack of control. No matter what emotions family members may experience, it’s important to know that those reactions are normal.
Depending on their age, children may experience many of these feelings. Remember to acknowledge the importance of self-expression to them and that it is normal to have these feelings.
Each family member may have a different reaction, which is why it’s important to be patient and understanding with spouses, siblings, 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.
Siblings of a child with a 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 may 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.
Talking about reactions and experiences with support groups or professionals can be very helpful, not only for parents, but also for siblings, and even extended family members. The first step in accepting a diagnosis 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.

Coping and Thriving

Adult woman holding child in a waiting room
No matter the reaction you and your family may have to your child’s diagnosis, your child is still your child, not just a diagnosis. Never give up hope for your child. While the initial plans you had may change with a diagnosis, that doesn’t mean you can’t have new plans, dreams, and goals for your son or daughter.
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. Although life has changed and taken an unexpected direction, there are still positive outcomes to be expected for you and your child. 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.
For more information, go to Taking Care of Yourself and Your Family

The Relationship between You and Your Child’s Primary Care Physician

The role of the primary care physician for a child with special health care needs is exceptional. It is important to establish a working relationship with your child’s physician, as he or she will be responsible for providing health care, information on your child’s diagnosis and treatments, coordinating the care provided by others, and supporting you as parent and caregiver. Make sure you are comfortable with your child’s primary care physician as a medical expert and as someone you can communicate with and trust. Building a Medical Home involves collaboration among parents, physicians, and other care providers on the child’s behalf.
It’s essential that you take an active role in your child’s health care. 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 his or her attention before expecting an in-depth discussion. Your physician and other health care providers should welcome the information you share and be appreciative of your willingness to help them help your child.

Resources for Medical Information

Much information about specific conditions and their care is offered in the Medical Home Portal’s “Diagnoses and 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.
In addition to the Medical Home Portal, the links below can be trusted to offer high quality information on various levels - the first 5 are best for those just beginning to learn about a diagnosis and the last is for those seeking a more extensive understanding of the condition.
  • MedlinePlus Understanding Medical Words
    Tutorial created by the National Library of Medicine to learn about medical words with examples.
  • 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
  • Healthy Children (AAP)
    Offers information and advice about child development, health topics, safety and injury prevention, various medical conditions and educational issues, and parenting; American Academy of Pediatrics.
  • National Organization of Rare Disorders (NORD)
    Provides advocacy, education, and other services for people affected by rare diseases.
  • KidsHealth
    KidsHealth is the largest and most-visited site on the web, providing doctor-approved health information about children from before birth through adolescence. This site offers numerous easy-to-read articles on kids' health, written for parents, teens and kids.
  • Genetic and Rare Diseases Information Center (GARD)
    GARD provides access to experienced information specialists with current and accurate information - in both English and Spanish. 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).
  • Genetics in Primary Care Institute (AAP)
    Contains health supervision guidelines and other useful resources for the care of children with genetic disorders; American Academy of Pediatrics.

Where to Go from Here

Parents who are equipped with good information about their child's diagnosis and condition are better able to actively participate in the medical home team, ensuring that their child receives the best care possible. The Finding Quality Information page will help in understanding how to find quality information about how to move along with caring for your child with special needs.

Authors & Reviewers

Initial publication: December 2003; last update/revision: May 2016
Current Authors and Reviewers:
Author: Chuck Norlin, MD
Reviewers: Tina Persels
Alfred N. Romeo, RN, PhD
Authoring history
2010: first version: Rachel M. HansonA
AAuthor; CAContributing Author; SASenior Author; RReviewer