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Emergency Department: Caring for Patients with ID/DD (Clinical) Presented by: APS Healthcare Southwestern PA Health Care Quality Unit (HCQU). April 2011 ak. Disclaimer.
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Emergency Department: Caring for Patients with ID/DD (Clinical)Presented by: APS HealthcareSouthwestern PA Health Care Quality Unit(HCQU) April 2011 ak
Disclaimer Information or education provided by the HCQU is not intended to replace medical advice from the consumer’s personal care physician, existing facility policy or federal, state and local regulations/codes within the agency jurisdiction. The information provided is not all inclusive of the topic presented. Certificates for training hours will only be awarded to those who attend a training in its entirety. Attendees are responsible for submitting paperwork to their respective agencies.
Note of Clarification While mental retardation (MR) is still recognized as a clinical diagnosis, in an effort to support the work of self-advocates, the APS SW PA HCQU will be using the terms intellectual and/or developmental disability (ID/DD) to replace mental retardation (MR) when feasible.
Objectives Define the term intellectual and developmental disability and diagnostic criteria needed for clinical diagnosis. Recognize unique health considerations and researched based evidence that impacts individuals with ID/DD in the medical setting. Identify communicative ways of expression in individuals with ID/DD and discuss tools that can be used to improve communication efforts. Recall therapeutic techniques that can be utilized, within the DEM, to provide comfort to individuals with ID/DD and reduce frustration in providing care.
Intellectual and Development Disabilities (ID/DD) Quality Health Care Access Knowledge Advocacy
Emergency Nurse Experience and Perception Qualitative Research Study Emergency nurse experience and perceptions Urban and suburban hospitals Emergency nurse volunteers *International Journal of Nursing in Intellectual and Developmental Disabilities
Emergency Nurse Experience and Perception Study Results The ED nurses expressed: Lack of knowledge and experience in providing care Communication challenges including difficulties in sending and receiving messages Lack of comfort and frustration in providing care
ED Nurse Perception Study: A Closer Look Knowledge Quotes “You know I honestly don’t remember. They probably touched on it in like psychology and stuff like that.” “My experience is so limited; I don’t even know what I don’t know!”
ID/DD: Terminology Intellectual and Developmental Disability (ID/DD) vs Mental Retardation (MR) “Words Do Matter”
ID/DD - Definition Intellectual / Developmental Disability (ID/DD) A disability characterized by significant limitations in both the intellectual and adaptive behavior as expressed in conceptual, social and practical adaptive skills. Originates before age of 18 (22 in PA).
ID/DD: Diagnostic Criteria Intellectual IQ score of 70 or below in intelligence tests Adaptive Impairments in adaptive functioning as identified in standardized tests Conceptual Social Practical Onset prior to the age of 18 (22 in Pennsylvania)
ID/DD: Causes • Prenatal • Inherited disorders • Chromosome abnormalities • Maternal malnutrition • Infections • Toxins • Drugs • Perinatal • Hypoxia • Extreme prematurity • Postnatal - Brain Infections - Malnutrition - Severe emotional abuse or neglect - Toxins - Brain tumors and their treatment
ID/DD: Prevalence Approximately 7.2 million people in the US have an intellectual disablity Conservative Number
Myths About People with ID/DD The “Eternal Child” Can not learn Need to be “protected” Want to be fixed Can not have a mental illness Do not require relationships
ID/DD: Learning from the Past Institutionalization Overcrowded No privacy No personal belongings Restraints Some individuals seen in the DEM today lived this life for many years
ID/DD: Reshaping the Future Deinstitutionalization Efforts – 1980’s Community Residential Programs Education and Awareness Positive Approaches People First Language “Everyday Lives” – Self Determination Adaptive technology
ID/DD: Medical Issues Seizure disorders Congenital heart disorders Musculoskeletal conditions Endocrine disorders Gastro-intestinal disorders Premature aging Modified pain syndromes Sensory issues
ID/DD: Mental Health Issues / Dual Diagnosis 75% of individuals with ID/DD have a dual psychiatric diagnosis. Diagnoses may include Mood disorder Anxiety disorder Impulse control disorder Psychotic disorder Personality disorder
ID/DD: Trauma History and Risk “Victims who have some level of intellectual Impairment are at the highest risk of abuse.” (Sobsey & Doe, 1991) “More than 90% of people with ID/DD will experience sexual abuse at some point in their lives.” (Valenti-Hein & Schwartz, 1995)
Emergency Nurse Perception Study – A Closer Look Communication Challenges ED Nursing Quotes: “I had to determine if she was truly in pain which was very challenging because she was moaning. She is very verbal but her answers aren’t always appropriate. So determining whether or not she was really in pain was really difficult and I don’t know if I was good at it.”
Ways of Expression: Forms of Communication Forms of Communication Verbal Nonverbal Behavioral
Ways of Expression: Verbal Verbal Communication Direct Indirect Echolalia
Ways of Expression: Non-Verbal Non-verbal Facial Grimacing Crossing of arms over chest Rolling of eyes Curling into a fetal position
Ways of Expression: Behavioral Behavioral Head banging Intense rocking/ preoccupation Untypical masturbation Fecal smearing Physical aliment accounts for 70% of new behaviors.
Challenging Behaviors Anyone can display challenging behaviors All behavior has meaning People have good reason to do what they do
Nursing Considerations Speak directly to the person Explain in simple terms, avoid complex 18 second rule Listen Give 18 seconds for person to answer Communication partners Adaptive Communication Sign Language/Communication technology Always use People First Language
Emergency Nurse Perception Study – A Closer Look Providing Comfort – Reducing Frustration “Well the fact that they don’t always understand exactly what you’re doing to them, and then it takes a lot more time just so you are not rushing into anything with them to scare them or to get them upset.”
Reducing Frustration: Information Gathering “Get to Know Me” Consent Significant other Security Item
Reducing Frustration: Waiting Periods Sensory box Activity apron Escape room
Reducing Frustration: Physical Examination Personal space considerations Distal to proximal exam Step by step instructions Concrete / avoid abstract Role play Remember trauma history
Reducing Frustration: Treatments / Intervention Story Boards Medical Stories Significant other
Reducing Frustration: Pain Assessment Verbal Numeric Scale (1- 10) Nonverbal Pain Story Boards Wong - Baker Facial Scale Behavioral Manifestations
Reducing Frustrations: Avoidance of Restraints Negative consequences of restraint use: Can cause not only physical harm, but also psychological harm Can re-traumatize individuals by reminding them of past experiences, particularly when restraints were used inappropriately Can induce fear and powerlessness because a person’s choice and control are lost Do not teach the person how to maintain control of self
Continuity of Care: Hospital Admission Communication Tools – Inter-departmental “Get to Know Me” Significant other Security item Roommate selection
Continuity of Care: Discharge to Community Communication to Community Family Living Provider agencies (Group homes, ICF, Life sharing etc.) Institutions Specific regulations
Thank You I expect to pass through life but once. If therefore, there be any kindness I can show, or any good thing I can do to any fellow being, let me do it now, and not defer or neglect it, as I shall not pass this way again. William Penn
References A Qualitative Study of Emergency Nurse’s Perceptions and Experience in caring for individuals with Intellectual and Developmental Disabilities, Fisher, K. Frazer, C. Hasson, Orkin , F. International Journal of Nursing in Intellectual and Developmental Disabilities. (2004). Retrieved April 8, 2011 from www.journal.ddna.org Guidelines for Managing the Client with Intellectual Disability in the Emergency Room, Bradley, E. University of Toronto. Intellectual Disabilities Psychiatry Curriculum Planning Committee. (2002). Retrieved March 8, 2011 from www.camh.net/path_home/pdfs/guidelines_manageclient_emerg2003.pdf Autism information for Paramedics and Emergency Room Staff, Autism Society. Autism Source.. Retrieved June 26, 2010 from www.autism.org “Words Do Matter”Senate Bill 1443 Changes Name of Mental Health and Mental Retardation Act of 1966, Indars, M. Pennsylvania State Senator – Andy Dinniman, Representing the 19th district.Retrieved March 30, 2011 from http://www.senatordinniman.com/Releases/2010/July15
References Dignity in health care people with learning disabilities, Royal College of Nursing, Dignity. (2009). Retrieved April 20, 2011from www.rcn.org.uk Care of Patients with Disabilities: An important and often ignored Aspect of Family Medicine Teaching, Huang, W. Family Medicine. (2006) Retrieved on April 7, 2011 from http://wichita.kumc.edu The Unfinished Promise of Willowbrook: Twenty Five Years of Unnecessary Despair, Mental Health Association of New York (2002). Retrieved April 20, 2010 from http://www.mhanys.org/policy/pp_willowbrook.htm Sobsey, D. & Doe, T. (1991). Patterns of sexual abuse and assault. Sexuality and Disability, 9 (3), 243-259. Retrieved from Trauma Beyond Words Valenti-Hein, D. & Schwartz, L. (1995). The sexual abuse interview for those with developmental disabilities. James Stanfield Company. Santa Barbara: California. Retrieved from Abuse. Non Wheelchair User Etiquette, Apparelyzed, Spinal Injury Support Program. Retrieved March 30, 2011 from apparelyzed.com.
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