If you’ve ever walked into a meeting with a family, beautifully written evaluation report in hand, and thought, “Now what?” this one’s for you! In this tutorial, Tighe & Namazi walk us through the SPICES framework for disclosing a diagnosis of developmental language disorder (DLD) to caregivers.
 

BUT WAIT, school-based SLPs, don’t go! Although we don’t provide diagnoses in the school setting but rather determinations of educational eligibility, this info still applies! As we’ve discussed before, it’s possible to walk the line by providing an eligibility determination, then describing what we see that is consistent with DLD without stating a medical diagnosis. Plus, we owe it to parents to be clear about what we are seeing in their child, and to connect them to resources and information that can help.

Before we get SPICY, let’s step back and discuss DLD for a moment. If you recall, the term DLD came from the work of the CATALISE Consortium as a diagnostic label for language difficulties that emerge during development and are not associated with some other primary diagnosis, such as autism, TBI, or intellectual disability. The hope is that by adopting this term we can minimize confusion and inconsistency and better advocate for individuals with DLD and their families. It also allows families to more easily access information about their child’s disorder. Basically, when we have a consistent diagnostic term that is communicated clearly, the SLP, child, and family all benefit.

Ok, let’s get into it! Tighe & Namazi’s SPICES framework lays out six steps for effective diagnosis disclosure. Good news—many of these steps are likely things you’re already doing, so skim this for a quick review and read on for key issues we should consider specifically for the diagnosis of DLD.

1. Set up: Be sure you have sufficient time and a comfortable space where you can have the conversation and answer questions. With our busy schedules, this simple step can sometimes be one of the toughest ones, but it has a huge impact.
2. Perceptions: Address the caregivers’ perceptions. Ask for parents’ thoughts on their child’s communication skills and use this information to inform your discussion.
3. Inform: This is the moment! Our job here is to clearly state the diagnosis and explain what it means. That means defining important terminology in ways others can understand, as well as talking about the impact of DLD for the child now and in the future. (We'll dig deeper into this below!)
4. Connect: Connect the caregivers to sources of support and information. Two great resources you might share with parents include DLD and Me and Raising Awareness of DLD. If there are support groups in your area, help parents to get connected.
5. Empathize and Extend: Make space for caregivers’ emotions and listen to their questions and concerns with compassion. Because a diagnosis like DLD is a lot to process, consider planning a second meeting to share more details and prevent information overload.
6. Strategize and Summarize: Again, because caregivers may feel overwhelmed, briefly summarizing the most critical information before wrapping up the meeting is important. This is also where we share our recommendations for support moving forward, including our plans for speech therapy and what the parent can do to support their child at home.

Thought of a couple of ways you can improve your disclosure conversations? 

You probably noticed that Step 3: Inform is where we need to do some specific preparation. Consider providing handouts the families can take away and read later, since it can be hard to absorb information in the moment in these situations. We've put together a printable educational handout for you to share with families (download here in English and Spanish!), and you can also download DLD fact sheets in a bunch of other languages from RADLD’s website.

“These are our goals for children with DLD and their families—greater understanding, stronger connection, and effective advocacy.”

 

– Tighe & Namazi, 2022

Then, when informing parents about their child’s DLD, consider these three things:

1. Defining important terminology: We know how important it is to use plain language and avoiding “SLP-ese” (all that jargon and terminology we learned in grad school!) when communicating our evaluation results with stakeholders. Simply breaking down each term in the label “Developmental Language Disorder” can do a lot to provide clarity for families:
   • Developmental: Many assume this means something that occurs early in life and that a child will grow out of. But it really signifies “a condition that is present from early childhood and persists throughout the person’s life span, with effects that will shift over time (McGregor et al., 2019).”
   • Language:  Non-SLPs will likely hear this and think “speech.” Be prepared to define language in a way that highlights meaning rather than intelligibility and encompasses listening, speaking, reading, and writing.
   • Disorder: Explain that a disorder is something we don’t expect will resolve on its own, and that will affect everyday functioning, including socializing and learning. This loading term can trigger worry and guilt in parents, but we can help by explaining that a disorder is not something we can cause by lack of support at home or learning opportunities. Also, it’s not related to hearing or learning more than one language. With intervention and support, we know their child is capable of learning and growth.
2. DLD’s daily impact: We need to connect the strengths and weaknesses we identify in our evaluation with implications for the child’s daily life. Consider highlighting a few areas that the family has expressed particular concern about. Literacy concerns are an obvious and common one, but some families might benefit from learning about how learning new math concepts and navigating social interactions are heavily influenced by our language skills.
3. The long-term view of DLD: Conversations about long-term impact can be emotionally challenging, but view this as your opportunity to build an authentic alliance with the family. And while we need to be honest and realistic about the child’s prognosis, there is good news to share! This review study found no large differences in the level to which children with and without DLD engage in education, employment, or get married. Also, language and literacy abilities were not the only or strongest predictors of positive life outcomes; prosociality was just as important. So, highlight those positive aspects of a child’s personality! Are they a great friend? A caring older sibling? Are they patient and cooperative with their classmates? If they’re not there yet, can we as a team work to praise and encourage these skills alongside all the language skills we’ll target in intervention? Let the family know that the loving relationship they have with their child is one of the most important things they can give them for a healthy and successful life.

If you'd like a more thorough resource to share with families, check out this FREE e-book from author Jeanne Tighe!

Tighe, J. M., & Namazi, M. (2022). SPICES: Disclosure practices to help caregivers digest a diagnosis of Developmental Language Disorder. American Journal of Speech-Language Pathology. https://doi.org/10.1044/2022_ajslp-21-00295 [available to ASHA members]

Disclosure: Jeanne Tighe, the first author of this article, is a paid research scout for TISLP. She was not involved in the selection or preparation of this review, except through our usual author audit process.