April 2011 ak Emergency Department: Caring for Patients with ID/DD (Clinical) Presented by: APS Healthcare Southwestern PA Health Care Quality Unit (HCQU)

April 2011 ak

Emergency Department: Caring for Patients with ID/DD (Clinical)

Presented by: APS HealthcareSouthwestern PA Health Care Quality Unit(HCQU)

© 2009 APS Healthcare, Inc. 2

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

KNOWLEDGE


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)

COMMUNICATION


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

PROVIDING COMFORT


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, 2011 from 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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Documents

April 2011 ak Emergency Department: Caring for Patients with ID/DD (Clinical) Presented by: APS Healthcare Southwestern PA Health Care Quality Unit (HCQU)