Talk to Me Treat me as an individual , not as a diagnosis

1. Talk to MeTreat me as an individual, not as a diagnosis Click to Begin

2. Introduction Developmental disability (DD): A deficit or impediment in the way a person grows and changes over time that deprives him or her of accomplishing specific things. It stems from many factors that prevent typical development, which involves physical and/or cognitive development. It is often assumed that the person has lower intellectual functioning, which is not always the case. People with Down’s syndrome, autism spectrum disorder, and cerebral palsy are often classified as having a DD. Intellectual disability (ID): Limitations in mental functioning, communication, self care skills, and social skills. These limitations cause people with ID to develop more slowly, and to have difficulty learning. Both DD and ID can be caused by many factors, such as genetics, difficulties during pregnancy, difficulties at birth, health problems. It is important to know that not everyone with a physical impairment may have intellectual difficulties, and not everyone with intellectual disabilities may have physical impairments. Each person is an individual, and is capable of learning, though maybe at different rates. Click to Continue

3. Types of Intellectual Disabilities Down’s syndrome: Caused by an extra chromosome 21. Characteristics may include variable cognitive abilities, speech and language difficulties, larger tongue, high arched palate, visual problems, cardiac problems. Autism spectrum disorder: A huge variety of manifestations, all involving pervasive difficulties in reciprocal social interaction, and in communication (may not talk, may use pictures or signs, may echo words of others). Also, these individuals may display repetitive and unusual behaviour and may have a hard time coping with change. Cerebral palsy: A group of motor disorders, can be caused before, during, or after birth. It is a non-progressive but a permanent decreased control of movement, coordination and/or balance. There is an abnormality in muscle tone (stiff, spastic, dystonic and/or inconsistent muscle control). These individuals can have normal intelligence, but damages to the brain increases the risk of slowness to learn. Articulation of words can be difficult, making it hard to understand them. FetalAlcohol Syndrome: Characteristics include growth retardation, developmental delay and abnormalities in neurology, mental health and facial characteristics (e.g. small eyes, long thin upper lip, flattened midface). Dual diagnoses: This could include any number of diagnoses at the same time. A person with Down’s syndrome may also have autism like behaviours. A person with cerebral palsy may have depression. Click to Begin Case Studies

4. Case Study #1 Rob is a 27 year old male, who was diagnosed with Down Syndrome. Rob injured his ankle during a soccer game. He has already been assessed and the physiotherapist is currently advising self-care management (e.g. ice regime) and prescribing exercises for him to perform at home. While explaining these exercises to Rob, Rob nodded constantly and responded with “um hm,” “okay,” and “yes.” After the therapist has finished giving instructions, she asked Rob to repeat what she said. Rob was silent. The therapist then asked Rob, “How and when would you apply the ice?” He responded, “Every hour. “ Because Rob did not completely answer the question, the therapist then asked, “How long?” He replied, “Fifteen minutes.” She then asked him, “What do you do to the ice?” He replied, “Put it in the bag and put it on my ankle.” She sent home written instructions in small print and medical jargon. • What communication strategies were effective? • What communication strategies were not effective? • What barriers were present in this case study? • What could have been done differently? Answer Introduction Case Study 1 Case Study 2 Case Study 3 Conclusion

5. Case Study #1Answers It is important to treat each patient as a unique individual, regardless of the diagnosis. Although Rob has Down Syndrome, it does not always mean he is illiterate, unable to speak and understand, cannot learn and follow instructions, or need a caregiver to be at an appointment with him. Despite having the same diagnosis, the levels of function in individuals with Down Syndrome vary greatly. Examples of effective communication strategies: • The therapist identified that there may be barriers to learning and addressed this by asking Rob to repeat the instructions. Rob responded well and demonstrated his understanding when prompted. • She could have kept her questions simpler in this case and addressed one issue at a time because Rob was only able to answer one part of the question. E.g. She could have asked, “When do you apply the ice?” After Rob has answered, she could then ask for how long. • Repetition and recall are effective ways to facilitate learning. • Her intentions were well and sent Rob home with written instructions. And made sure the print was bigger and simpler in language. Back Continue

6. Case Study #2 Betty is a 40 year old female. She was born with cerebral palsy, which causes muscles spasms in her face and throat. She is able to communicate but her words may become garbled at times. With her caregiver, Sally, Betty is seeing a new family doctor for the pain in her back. The doctor introduced himself to Betty and Sally and commenced the assessment by asking Betty about the purpose of the visit. As Betty tried to explain her back pain, the doctor nodded and said “okay” when in reality he did not understand most of the words Betty said but did not clarify because he was afraid of hurting Betty’s feelings. The doctor was also rushed for the next appointment. When there was a pause in Betty’s reply, the doctor immediately talked again, thinking Betty was finished. The doctor performed her physical assessment without fully knowing what Betty’s complaint was. Sally noticed how the doctor was not assessing Betty’s back and pointed it out. As a result, the doctor just talked directly to Sally instead of Betty for the rest of the visit. • What communication strategies were effective? • What communication strategies were not effective? • What barriers were present in this case study? • What could have been done differently? Answer Introduction Case Study 1 Case Study 2 Case Study 3 Conclusion

7. Case Study #2Answers Communication Strategies: Don’t assume: When talking to someone with cerebral palsy, be aware that cerebral palsy Does not mean the individual is developmentally delayed. The individual may struggle with musculoskeletal problems, which can be manifested as poor speech due to difficulty in moving muscles around the mouth and throat. Examples of effective communication strategies: • Pretending to understand what the patient is saying is a form of disrespect and devalues communication. The doctor in this case study could have asked Betty to slow down in her speech and repeat what she said. • If the doctor allocated more time for seeing Betty, he could have had more time to converse with Betty to understand her health history. • The doctor also should have asked Betty for permission to talk directly to Sally about her health. • Furthermore, he could also have asked Betty and Sally for more effective ways to talk to Betty, such as slowing down his speech, asking Betty to repeat, providing enough time for Betty to reply, talking to Betty at her eye level, asking the question in a different way if he could not get an answer. Back Continue

8. Case Study #3 Marvin is a 37 year old male, nonverbal and is presented in the ER, extremely agitated. The triage nurse was initially unaware of what was wrong with him and attributed his lack of response to his mood and attitude. She asked many questions about Marvin’s reason for visit but Marvin could not reply. After a while, Marvin pulled out a card that identifies him and his inability to speak. The nurse asked Marvin to wait while she retrieved a diagram of the human body. She asked Marvin to point to where he felt pain and provided him with a pen to write, in case he could write. She maintained the same tone of voice and did not talk louder. • What communication strategies were effective? • What communication strategies were not effective? • What barriers were present in this case study? • What could have been done differently? Answer Introduction Case Study 1 Case Study 2 Case Study 3 Conclusion

9. Case Study #3Answers Although Marvin is ‘nonverbal,’ Marvin can produce sounds. The nurse did well when she used other resources to communicate with Marvin. She also did not assume that Marvin could not hear and speak louder. Examples of effective communication strategies: • She could have simplified her questions to yes and no questions, to which Marvin could have shaken or nodded his head. • Other things that the nurse could have done are asking Marvin if he could speak and determining whether Marvin had a family member she would verbally communicate with as well. • If Marvin arrived at the ER with someone who can speak, it is important for the nurse to maintain eye contact with Marvin, speak to Marvin and allow Marvin to communicate in whichever way Marvin is comfortable with. Back Continue

10. Conclusion These are only some of the most common presentations, and should not be over generalized. Remember, each person is an individual, and will present as such. No two people are alike. Discover how each individual communicates best. Take the time to learn about the person, not the syndrome. Introduction Case Study 1 Case Study 2 Case Study 3 Conclusion Acknowledgements

11. Acknowledgements Many thanks to H’art School of Smiles for the directors, volunteers and students, who welcomed us and showed us how to communicate, to dance, to paint, to sing and to appreciate those around us. Press Esc to End Module Developed by nursing students of Queen’s University: Cindy Leung, NiloferMomin and Rachel Cerre