Guidelines For Explaining Results
The process of explaining results requires finding a shared understanding of each child’s challenges. This means finding a way to get parents to agree with professionals about the possibility of delays. When professionals and parents are “on the same page”, parents are far more likely to follow-through with recommendations.
Professionals, meanwhile, need to remember that “Screening tests sort children who probably have problems from those who probably do not.“ We are dealing with probabilities—but strong probabilities those are when using quality screens.
Assessment level tools produce more deﬁnitive information about strengths and weaknesses but do not offer “a name for the problem.” The absence of a diagnosis, and parents’ difficulties understanding terms like “delay” (which parent often think means their child will inevitably catch up… when that may not be the case) must be kept in mind when explaining results.
Helping parents’ and professionals come to a shared perspective is the first step. Here several ways:
1. Eliciting parents’ concerns. It is advisable to use a tool like PEDS so that you ask parents whether they have concerns about their child’s learning and behavior. When parents express concerns, explaining screening results is substantially simpliﬁed. The conference can begin with genuine regard for the parents’ observations and appraisals (e.g., “I am impressed with how carefully you have observed Maria’s development and by your sense that she may be having some difficulties. In working with her today, I also thought she had more trouble with certain tasks than most other children have. I want to recommend that she receive more in-depth testing to see if she is having trouble and if so, why, and what we can do to help her.”
2. Other ways to help parents understand:
a) Start by describing the child’s strengths (e.g., “She seems to be doing well in___”
b) Next mention area(s) of probable weakness, (e.g., …but she seems to be having trouble with_______ (use family-friendly terms to describe the broad area of delay such as “using his hands and fingers to do things”).
c) Next, prompt the parent to comment, and ideally affirm your concerns (e.g., “Have you ever noticed him having difficulties with ____?
d) If the parent has not noticed difficulties, provide a bit more description. For example with fine motor delays in a two-to-three year-old ask, “Have you noticed him having trouble using a fork or spoon, holding a crayon, or picking up small toys or food?” [For suggestions about descriptions of skills within domains, please go to the Background pages under Training and read the pages called “Domains” You can also refer to the informal milestones checklist under Training Materials.
e) You can also try, “Have you been able to watch him do ___? (supplying a broad list of skills) Have you been able to watch how other children do with ___? (again offering broad descriptions of age appropriate tasks), and similarly “How do you think he does ____ compared to other children?”
f) If you are working in a classroom or conducting group well-visits, you can also try guided observation where you sit with a parent and discuss differences between their child’s development and that of similar age peers.
3. Avoid discussing speciﬁc items/skills children had trouble demonstrating. Parents may have seen children perform skills at home and may disagree about whether the child knows the skill or not. If such discussion cannot be avoided, it is helpful to say things like, “When we test children we have to present things in a certain way. Your child might have been able to answer if we had reworded it, but the hundreds of children on whom this test was developed all had to answer the questions in exactly the same way so we could compare their performance. When children cannot answer a question if it is worded a little differently, it means they are still learning the skill and need more practice to master it.”
Having, hopefully, gotten parents “on the same page” with you, here’s what to do next:
4. Explain the need for further evaluation in a positive way (e.g., “There are lots of programs that can help _____ do his best. So lets talk about the best ways to help him.“)
5. Use euphemisms rather than diagnostic labels when interpreting screening tests. Phrases like “seems behind other kids in ______,”; “In some areas she may be learning more slowly than others her age,” and “He appears to be having difﬁculty with _____” all include terms that do not connote a child in a wheelchair or one with multiple genetic anomalies (which is what most people think of when the word “disabilities” is used). The phrases above are effective terms but not devastating ones. They encourage families to seek additional evaluations without causing paralytic fear and distress. Avoid using terms such as “positive” or “negative” results to describe screening tests. These terms are confusing to parents (and to most adults as well).
6. Acknowledge emotions. When parents appear to be anxious, depressed, or disbelieving, it is helpful to state, “This is surely hard to hear.” Then pause for a minute to allow parents to express their fears or reluctance. This will help them move forward and follow through with recommendations.
7. Avoid false assurances. It is natural to want to comfort parents and assure them that nothing is the matter. However, since screening results probably do reﬂect a problem, false assurances may make parents’ adjustment more difficult in the long run. Simply continue to say, “We need to look further to decide if ______ needs more help learning.”
8. Put recommendations for parents in writing. Make sure parents have a summary of results and referrals to take home with them. Templates for explaining to parents the results of PEDS, PEDS:DM, and the ASQ are available in the manuals for each measure. PEDS Online provides a “parent information sheet” that can be printed out for parents. Also, if using PEDS Tools you can also photocopy the scored longitudinal recording form so that parents can see how their child has performed over time and where delays are appearing. You can update the parents’ copy at future visits.
9. Assist parents with referrals, and better still, make appointments for families. Making appointments for families increases the likelihood that they’ll follow through and this is especially important when families have psychosocial risk factors (e.g., limited literacy, language barriers, etc.). Some referral services require that families themselves make appointments. In either case, provide telephone numbers, descriptions of programs, brochures, and the purpose of the recommendations. Descriptions of services help parents visualize their child participating and thus increases their willingness to make this happen.
10. Learn about the services to which you are referring so you can field questions from parents and provide adequate answers. Preferably professionals, and certainly all trainees, should visit referral sources to best understand the services offered and thus how to describe them effectively to families. Snag brochures while you are there to share with families.
11. Send a referral letter to the services you are recommending. If you are a health care provider, be aware that in some States, referrals for further testing (through IDEA programs, i.e., Early Intervention or public schools, often require information on the status of a child’s vision, hearing and health (including lead levels) before testing can proceed. So be sure to screen/ document these findings in your referral letter, or, note that you have made referrals for sensory/health screening (e.g., to an audiologist). Sometimes programs can provide vision and hearing screening—another good reason to know lots about the programs to which you refer.
In addition, if the results of the measures you’ve administered suggest the need for certain kinds of evaluations (e.g., speech-language, physical therapy), be sure to mention in your referral letter the types of testing seemingly needed. If autism-specific referrals are needed, send your referral letter to ASD services, but also to IDEA services-- autism-specific evaluations/treatments usually have long, long, long waiting lists. Intervention needs to start pronto even if it is not specialized.
Most early intervention/public school services comply with the mandates of IDEA--to provide evaluations and placement within 30 – 40 school days. But some States are woefully non-compliant. For this reason it is wise to mention your awareness of the IDEA mandate (e.g., “I understand that your program is required to provide testing within 30 – 40 school days.”
Referral letter templates are included in the PEDS, PEDS:DM and ASQ manuals. PEDS Online generates referral letters for you that cover sensory/health documentation, identify the types of testing needed, and acknowledge IDEA mandates.
12. Establish two-way consent (meaning that when you ask parents for permission to send your results, that you get parents’ consent to allow referral sources to send you their results/updates). This is important because professionals, especially health care providers may be asked in the future to prescribe additional services (e.g., occupational therapy). It will feel like a “runaway train” if you don’t know the results of further testing.
Establishing two-way consent requires working with each referral service (since they have to agree to this too). Yet another good reason to get to know the programs to which you refer.
12. Offer ongoing support to families. Most will follow through with referrals if you use the advice above. But why don’t some families seek services? There are many understandable reasons:
- Parents may return home with your news, have difficulty explaining it, and are dissuaded by family members who weren’t present when you explained your results and recommendations. This is one reason that giving parents a summary report is important;
- Parents, even if they observe a problem, may rationalize its meaning (e.g., “His dad was just like that as a boy and he’s doing ﬁne now.” “It’s just a phase, she’ll grow out of it.”). It may take them (and other family members) time to realize that a problem may well exist;
- Some parents hear your message but think they can address the problems on their own and want to try that first (a good reason to give information about what parents can do to help);
- A few parents worry about what others will think and that participation in special services will stigmatize their child or isolate him/her from typically developing peers.
So what to do once you given your recommendations?:
a) Ask parent(s something like, “Do you think other members of your family will try to talk you out of this?” If the answer is yes, acknowledge parent(s) fears and then talk about strategies-- including your willingness to meet with the entire family to discuss the results.
b) Be sure to give parents a summary report to take home so that your results and recommendations are in “black and white”.
c) Be sure to give guidance on ways to help at home
d) Let the parent(s) know that if they get “cold feet” and don’t follow through with your recommendations, that you want them to talk with you about this-- that you’ll be happy to re-screen/assess their child’s development, check on his/her progress, and talk again what to do next.
e) Either make a follow-up appointment before the parent(s) leaves or call in a few months to see what happened and to strategize further.
Sometimes parents don’t seek recommended treatment but they are far more likely to follow-through, if we’ve elicited their concerns and if we state our recommendations positively. When they don’t follow-up, it is sometimes because they want to work on their challenges first or need additional evidence and support from professionals.
If you click “Next” at the bottom of this page, you will see a list of parenting information resources (suitable for written handouts to families about specific child issues.