Communication Tool for Children Experiencing Pain: Spotlight on “My Pain Alert”
Child Inspired is proud to feature “My Pain Alert” in this special blog post. Many thanks to Gail Goldstein, CCC-SLP, Founder and Speech and Language Pathologist for creating a resource that helps children communicate pain more effectively with their care teams, particularly when facing medical challenges.
Along with May flowers, and time spent celebrating & appreciating nurses, teachers and mothers, each May provides an opportunity to raise awareness about communication disorders with Better Hearing & Speech Month (BHSM). We have an opportunity to learn more about the inspiring work of so many Speech and Language Pathologists, and the impact they make in the lives of pediatric and adult clients and families working towards improved feeding and swallowing, speech articulation, communication, social skill development, and cognitive development and rehabilitation.
All of us will experience physical and emotional pain at different times in our lives. What seems like a simple process of identifying the location or source of pain, and describing and communicating it to a parent, adult or medical professional, is actually a complex process that we often over simplify and take for granted. It involves body awareness, labeling, and non-verbal and verbal expression. Most children are taught about their 5 senses, but there are 3 more, including one that is critically important for the identification of pain…Interoception. This is our internal sense, which includes any sensations that originate from within the body, like the feeling of hunger and thirst, sickness, pain, sleep, heart rate, and the feeling that one needs to use the bathroom. So this complex process of identifying and communicating pain, becomes even more challenging when the child is very young, or with children and adults that have challenges with communication and sensory regulation. For parents and family members… There is often nothing more difficult than watching your loved one suffer with acute or chronic pain, and feeling unsure of how to help.
After finding inspiration from her niece, Gail Goldstein, CCC-SLP developed “My Pain Alert” as an alternative tool to help children and families better identify and more effectively communicate pain…
My name is Gail Goldstein and I have been a speech, language and swallowing therapist since 1972. I consider myself a consulting speech language pathologist at this point in my career. I’ve worked in rural and urban school systems. I have held a Kentucky SLP license since they were first issued. In the 1980s, I started a private practice serving individuals from five counties in the foothills of the Appalachian mountains. I am a big fan of integrative and multimodal healthcare. I see use of a wide range of therapies as essential to healthcare progress, particularly for children. I am also a big fan of intermediate technology to solve problems. Multimedia apps are exciting, but not reasonably available to everyone in the United States given limited broadband access and cost. Books, cards and games still work to educate, entertain, and comfort individuals. I have treated many patients who highlighted the need for a better way to communicate pain relief needs. One was a young woman with severe spastic cerebral palsy who when given her first communication board indicated, “Pee Hurts”. Her family caregiver was shocked. Pain just had not occurred to the caregiver as a possibility.
Everyone experiences pain from birth. The most commonly used picture pain scale has directions requiring a literate vocabulary and a significant level of experience with pain. Will medical practices be able to make significant advancements in children’s health, if research studies in the field of pain control and management are limited to children over age 8? These are things that drove my thinking process. Then my niece shared the story of her preschool child with Chiari picking the green face, his favorite color, when asked about his pain by the nurse. At that point I recruited my very talented niece and my artist sister saying, “We can do better.”
My Pain Alert(TM) Scale Communication Tool is an huge improvement in understandability over the faces scale. I recommend just reading the stories to your loved one. They can skip over the “How to” section one reads in the bookseller’s online preview. I wrote the “How to” with three populations in mind: young toddlers; adults with severe autism preparing for major surgery; and providers in other therapy specialties like Physical therapy, Occupational therapy or Child Life to give them the best approach with a patient with communication challenges.I am a researcher by nature, publishing and presenting my findings on local and national, and recently, international levels. Our field trial of My Pain Alert presented as a poster session at the 17th International Forum on Pediatric Pain demonstrated that EVERY participating family who read their child My Pain Alert(TM)…experienced less stress with the child’s next pain event. Once the children understand it, they run with it: from the six year old explaining that what he was experiencing wasn’t NSAID type pain; to the Mom who listened to her daughter after one reading of the book and promptly took her to urgent care. Reading My Pain Alert(TM)…puts families on the same page when it comes to interpreting pain. It also has very clear instructions as to what to do if one is not sure how much pain the child is experiencing.
Parents, caregivers and healthcare professionals can download the 4.3Mb book on their tablets to read to their loved ones while waiting in the doctor’s office for only $2.99 on Amazon. Thank you for making a difference in child and family-centered healthcare initiatives.
I find inspiration from the following child-centered works and reference sources:
- Dr Carl von Baeyer’s articles: “Can preschool-age children reliably report the intensity of their pain?”
- Von Baeyer, C.L. “Children’s self-reports of pain intensity: Scale selection, limitations, and interpretation.” Pain Research and Management, 2006; 11(3): 157-162.
- Dr. Kenneth Craig’s article: “Updating the definition of pain.” Pain, 2016; 157 (11) 2420-2423.
- Li’l’ Engine: The Little Engine That Could by Watty Piper, George Hauman, Doris Hauman, published by Grosset & Dunlap, New York,2001.
- Mouse Dentist treating Fox: Doctor DeSoto by William Steig, published by Farrah, Straus & Giroux (BYR) New York, 1982.
Gail Goldstein, CCC-SLP has been working with children for over 45 years specializing in speech, language and swallow dysfunction. Her extensive experience includes working as a speech and language pathologist in both rural and urban school systems in Kentucky. In the 1980’s Gail began a private practice serving individuals from five counties in the foothills of the Appalachian mountains, and more recently has enjoyed her work as a consultant and entrepreneur. Pictured below is Gail completing her poster presentation at the 17th Forum on Pediatric Pain.
Tags: autism, child life specialists, communication, communication disorders, medical communication, my pain alert, pediatric healthcare, pediatric nursing, pediatric pain, speech and language pathologist