What I Now Know:
Communicating with Caregivers
by: Ana-Maria Jaramillo, M.S., CCC-SLP
YES, we know that the overuse of the Internet can be detrimental to our mental and physical health, but when used for just the right amount of time (and the right information), it can be a gift. Being an SLP today is so different than when I graduated 5 years ago or even 10 years ago, when blogging wasn’t really as trendy as it is today. Bilinguistics, a company made up of bilingual SLP’s that provide therapy, resources and CEU’s based in Austin (my hometown woop), released a blog post several months ago called “How do I tell my Spanish-Speaking Parents that their child has an Impairment?” Woah, was my initial reaction.
I had never really even stopped to ask myself this question for the parents of my monolingual clients, let alone for the parents of my bilingual clients. After two intense years of grad school, I left with more knowledge that I thought my brain could ever soak up, but still felt uneasy when I would have to share the news to caregivers that their child was not developing like the others for that particular age. Sure, I had an undergraduate degree in psychology which helped, but no amount of knowledge can prepare you for the conversations you have with these families. No one taught me how to approach the subject during those two years of grad school or when I got thrown into 5 different schools at once as a CF, many times leading IEP meetings and translating for every provider there. Side note: Remember translating is NOT part of your job description as an SLP! More times than not, I found IEP meetings to be frustrating and draining for the parents – a bunch of providers sitting around a stuffy conference room taking turns focusing and listing off what the child can’tdo rather than what the child can do.
Once I received my CCC’s, I left the schools and began working for a pediatric home health company. The majority of my caseload was made up of Spanish speaking families with limited access to resources. Typically, I was the first professional assigned to work with the child, so I found myself constantly sharing the news that their child was “impaired and presenting with signs of X, Y, Z that are consistent with a diagnosis of X, Y, Z.” I dreaded having these conversations, not because I didn’t know enough about the diagnosis, but because I knew the one of the first steps of the grieving process was anger. Rightfully so. I once read somewhere that withholding a diagnosis, like Autism Spectrum Disorder in a child, is like withholding a diagnosis of cancer. The sooner the diagnosis, the more access to care, therapy and services are offered, which leads to a much better prognosis in the end.
As the years went on, it never got easier, but my approach in delivering this uncomfortable news seemed to help caregivers process it in a way that was easier.
- Read and research. Come prepared to answer all and any questions – clarifying, of course, that you are not a doctor (I’ll get to that in the next couple of steps). Print descriptions, examples of behaviors and checklists of symptoms characterized by the disorder. Visuals such as charts, graphs and tables are even better. Make sure the information, descriptions and checklists are free of clinical medical/speechie lingo and stick to simple terminology that you can easily explain to the caregivers. Fill out all checklists, graphs and charts together – CAREGIVERS are the EXPERTS and know their child best!
- Spend time talking about the child’s strengths (notice I said strengths not areas of weakness) to determine a baseline and plan of action. A formal evaluation will determine areas of weakness. This is NOT the time for that, assuming an evaluation has already been done at this point. After going through these strengths, develop a plan of action to seek a formal diagnosis from a specialist (unless it is childhood apraxia of speech because an SLP is the only professional that can diagnose this). Recommend your most trusted developmental pediatrician/neurologist/ENT/GI doctor, discuss different types of therapy (OT, PT, ABA, play therapy, etc.) and provide phone numbers/websites for caregivers to contact all of these providers. Make it EASY for them. It can be VERY overwhelming typing “developmental pediatrician near me” or “ABA services” on a Google search and narrowing it down to one. More importantly, provide caregiver with local support groups and online chats/forums to engage in. The information provided in these groups is invaluable.
- Remember to be culturally sensitive. The American Psychological Association (1993) guidelines acknowledge the necessity of assessing individuals in the context of their ethnicity and culture, respecting their indigenous beliefs and practices (including those involving religion and spirituality), assessing the patients’ support systems, evaluating the patients in their primary language, and taking a history that accounts for immigration and acculturation stresses.Even if you are unfamiliar with that particular culture, be mindful that it is different than your own. If you are working with a family whose first language is not your own, have a translator come out with you – it is important that any information like this be presented in their native language.
- Be available: emotionally and physically. Remain professional, but be a friend. Be human. Be a shoulder to cry on and a body to hug. Offer words of encouragement and success stories of other children you have worked with. It is important to give caregivers TIME. Time to feel angry, sad and frustrated, but NOT lost. They have you! Once the grieving period has ended, it’s time to get to work. After all, clinician, you change lives.