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Hospital program for adult patients with intellectual disabilities:

Hospital program for adult patients with intellectual disabilities:. Improving the patient experience July 25, 2011 Sarah Ailey, PH.D. RN APHN-BC Robyn Hart, M.Ed., CCLS Some information is from research funded by: Center for Clinical Research and Scholarship: Rush University

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Hospital program for adult patients with intellectual disabilities:

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  1. Hospital program for adult patients with intellectual disabilities: Improving the patient experience July 25, 2011 Sarah Ailey, PH.D. RN APHN-BC Robyn Hart, M.Ed., CCLS Some information is from research funded by: Center for Clinical Research and Scholarship: Rush University Gamma Phi Chapter of Sigma Theta Tau

  2. Purpose • Discuss the program at Rush University Medical Center to improve the hospital experience for adults with intellectual and developmental disabilities (I/DD)

  3. Objectives • Describe ways in which services to assist persons with I/DD can be implemented using the example of Rush University Medical Center

  4. Scope of Issue • In a study done in two regions in NY State among adults with ID age 40-79 and living in community residential facilities of 4-15 people • 16% hospitalized in one year • 30% visited the emergency department * *Janicki et al., 2002 ©2009 Rush University Medical Center

  5. AGENDA • Overview of the Rush Adults with IDD Committee • Origins • Identification of Mission and Goals • Staff and consumer input/involvement • Overview of work • Information gathering • Survey of Illinois DDNA nurses • Information from chart reviews • Examples • Plans for the future

  6. Origins of the Committee • Staff concerns raised at town hall meeting • Felt not prepared well enough - no training • Not sure how to communicate • Safety concerns for patients • Safety concerns for staff- at least few reports of injury to staff

  7. Overview of committee • Formed in 2007 • Multidisciplinary/multi role • Seeks community representation and input

  8. Assembling the team- multidisciplinary/multi-role • Nursing (neurology, psychiatry, community and mental health nursing) • Child Life • Medicine • Occupational Therapy • Social Work (inpatient & older-adult outpatient) • Special Education Teacher • Employee & Organizational Development • Visitor and Guest Relations • Patient satisfaction • Out-patient Administration • Information Services • Library Services • Representatives from agency serving people with IDD

  9. Mission Statement: “To foster awareness, sensitivity and skills related to individuals with intellectual and developmental disabilities in order to promote partnership in the healthcare experience. “

  10. Goals • Improve hospital care • Improve outpatient care • (For both) • Elicit consumer input • Creation of work groups • Gather information • Develop education for staff • Provide improved programming

  11. Input/Involvement • Invited family and agency representatives to serve on committee • Consulted experts in the field • RRTC at University of Illinois • Coordinated with hospital ADA committee • Representatives from many departments/sectors of medical center

  12. Creation of Three Work Groups 1. Building an administrative structure 2. Gathering data and external support 3. Changing the Rush Culture

  13. Work group 1: Building Administrative Structure • Identify key players and create partnerships (e.g. ADA taskforce, diversity taskforce, information services. interpreters’ services, unit directors, outpatient services, patient satisfaction) • Obtain executive leadership support • Address • Length of stay (LOS) and adverse events • Regulations • Systems issues

  14. Workgroup 2: Gathering data & external support Gathering data • Survey among staff • Other hospitals • Obtained grant for chart review of adult clients with ID over 2 year period (not psych admissions)* • Survey among DDNA nurses in Illinois *Funded by: Gamma Phi Chapter Sigma Theta Tau Center for Clinical Research and Scholarship RUMC

  15. Gathering support • Elicited internal and external family input • Collaborated with Autism Resource Center • Conferred with community agencies • Presentations at conferences • AHRQ Innovation Exchange - we have been in contact with • Other hospitals • Agencies serving people with IDD • Governmental DD agencies • Many others

  16. Changing the culture Link the program to the ongoing efforts at the medical center to promote • I CARE (innovation, collaboration, accountability, respect and excellence)/ I CONNECT • Reinforce the mission statement of the Medical Center

  17. Survey of employees Contact with adult clients with intellectual and developmental disabilities • 12% frequent contact (daily or almost daily) • 18% regular contact (at least once per week) • 70% occasional contact (once a month or less)

  18. Employee-identified issues: • Inadequate social histories • Communication problems • Assessing pain levels • Discharge planning/LOS • Legal issues • Patient safety/staff safety • Calming upset patients

  19. Community Agency/Family Identified Issues: Inpatient • Patient/staff communication • Negative attitudes from caregivers • Sensitivity to unique emotional & physical needs • Preserving patient dignity • Agency staff not able to stay with patients - therefore hospital staff can not just rely on them

  20. Community Agency/Family Identified Issues: Outpatient • Lengthy waiting times for appointments • Need for written orders and instructions- misconceptions that staff with person can transmit orders/instructions • Staff at times do not talk to client (when able) • Need areas for repositioning/personal care

  21. Programs developed: I CARE/I CONNECTPatient/Family Education Resources • Development of step-by-step pictorial preparation materials for visual learners • Provision of prehospitalization tours http://www.rush.edu/rumc/page-1234554423845.html • Creation of personalized communication boards • Information for families on Rush web page • Help Line • Special Needs Buddies

  22. Special Needs Buddies New program: Student volunteers buddy with patients • Student volunteers volunteer with patients with special needs • Medical students, nursing students, OT students • Act as advocate and friend • Answer questions • Familiarize them with medical personnel • Teach to use phone, TV or bed • Help fill out forms, meal card • Spend time • Students gain experience with patients with IDD

  23. Changing the Rush culture:Identified Staff Training Opportunities • Disability Awareness Month programs • Unit-specific inservices • New employee orientation • Patient-care technician training • Individual consultation services • Special Needs Buddies

  24. Changing the Rush Culture:Staff Training Topics • Understanding autism and other developmental disabilities • Fostering family-centered, respectful interactions • Promoting positive health-care encounters • Non-verbal or behavioral communication techniques • Procedural preparation • De-escalation techniques • Illinois state services • Open-forum discussions: participant identified topics

  25. Consultation Service Examples: • Mark: 40 year old patient with Down syndrome and deafness diagnosed with cancer • Annie: 22 year old patient with a developmental disability diagnosed with leukemia

  26. Additional information in EPIC admission Communication Issues Expressive • Verbal/Non-verbal • Complex/simple communication • Alternate communication means • Signs • Gestures • Other • How do they communicate • Hunger • Thirst • Stop • Fear • Need for bathroom • Pain

  27. Communicaton (cont.) Receptive • Verbal/Non-verbal • Complex/simple communication • Alternate communication means • Signs • Gestures • Other • How do they receive communication • Hunger • Thirst • Stop • Fear • Need for bathroom • Pain

  28. Additional information in EPIC admission Behavioral issues; Self-injurious; Wanderer Antecedents to behavior/What is provoking for patient? • Light/Firm touch • Noise/Quiet • Light/No light • Disruption of routine • Other What is calming for patient? What is provoking for patient?

  29. Care plans • Starting with existing care plans and deciding whether to revise/ develop some new • Determining whether issues that should have a care plan are covered

  30. Two year chart review* • Describe results of a two year chart review of adult patients with intellectual disabilities and controls and discuss implications * Funded by: Center for Clinical Research and Scholarship RUMC Gamma Phi Chapter Sigma Theta Tau

  31. Previous research on hospital experiences of adults with ID • Length of stay (LOS) longer, including longer than individuals with other disabilities* • Patients with ID report feelings of • Vulnerability • loss of control • fear of what was going to happen to them** • difficulty communicating their needs to hospital staff*** * (Walsh, Kastner, & Criscione, 1997). ** (Parkes, Samuels, Hassiotis, Lynggaard, & Hall, 2007) ***(Iacono & Davis, 2003). ©2 009 Rush University Medical Center

  32. Demographics • Information collected on 217 adult admissions individuals with ID • 85% insured by Medicare or Medicaid • Mean age 41.1 (15.7) Range18-82 • Mean LOS 7.16 (12.1) Range 1-113 • 49% male/ 51 % female

  33. Demographics (cont.) • 30% of patients went to a neuroscience unit • 20% to medical units • 15% to intensive care units- of these 45% went to PICU • 14% to surgical units • 11% to pediatric units (including PICU) • 4% to oncology units.

  34. Two year chart review In depth review of 70 charts • Advanced directives • Admission source • ER/ambulance • Admitting/final diagnosis • Other health hx • Level of ID • In hospital events • Standards of care initiated • In patient referrals • Post discharge referrals • sitter • And other data • Discharge location

  35. Two year chart review • In depth reviews on 70 records • 33% of patients came through ER • Approximately 43% came by ambulance • 60% had a decision maker noted on chart

  36. Admission source* • Home- 41.2% • Community Living facility – 25% • Nursing home – 5.9% • Other hospital – 25% • *From 70 intensive review charts ©2009 Rush University Medical Center

  37. Previous health history • Seizures – 70.6% • Cerebral palsy – 36.8% • GI - 39.7% • Respiratory – 30.9% • Autism spectrum – 10.3% • Aggressive behaviors – 7.4% ©2009 Rush University Medical Center

  38. In hospital events • Hospital Acquired(HA) decubitus ulcer 4.4% • HA infection 7.4% • Post-op complications – 4.4% • Medication reactions – 5.9% • Fall – 2.9% ©2009 Rush University Medical Center

  39. Other hospital events • Pulled IV or other tubing – 5.9% • Medicated for agitation or aggression – 14.7% ©2009 Rush University Medical Center

  40. Common precautions initiated Fall precautions Seizure precautions Aspiration precautions Skin integrity 4 side rails up

  41. Common referrals • Nutrition -64.7% • Neuro - 39.7% • Case management 26.5% • Surgical -29.4% • Pain/Palliative care – 5.9% • Social work 13.2% • PT/OT/ST 19.1% • GI -20.6% • Pulmonary – 20.6% • Psych 10.3% • Child life - 4.4% • Chaplain 7.4% • Other 27.9%

  42. Two year chart review (cont) • Information collected on adults similar diagnoses but without ID over same period.

  43. Comparison data Neuroscience Adults with ID – N=68 (14) Adults without ID N=640 (13) Age- 38.5 (14.2) LOS 3.1 (2.2) Decision maker – 0% ER – 46.2% Ambulance – 7.7% Admission Source Home – 85% • Age – 39.6 (13.5) • LOS – 3.5 (3.6) • Decision maker – 57.1% • ER – 14.3% • Ambulance- 28.6% • Admission source • Home 28.6% • Community facility – 35.7% • Other hospital -21.4% • Nursing home – 14.3% ©2009 Rush University Medical Center

  44. Previous health history Adults with ID N=14 Adults without ID N=13 CP – 0% GI – 23.1% Respiratory – 30.8% Autism spectrum – 0% Aggressive behavior – 15.4% • CP - 21.4% • GI – 14.3%% • Respiratory -14.3% • Autism spectrum- 14.3% • Aggressive behavior -14.3% ©2009 Rush University Medical Center

  45. Hospital incidents Adults with ID N=14 Adults without ID N=13 Medicated for agitation/aggression 7.7% (N=1) • Fall – 7.1% (N=1) • HA decubitus 7.1% • Pulled IV/other tubing 7.1% • Medicated for agitation/aggression 7.1% ©2009 Rush University Medical Center

  46. Comparison – care plans Adults with ID N=14 Adults without ID N=13 Seizure – 93% Fall precautions- 61.5% Skin integrity – 0% DVT- 23.1% Aspiration – 0% 4 side rails up – 93% Isolation – 0% Mean 2.7 • Seizure – 93% • Fall precautions- 93% • Skin integrity – 21.4% • DVT- 14.3% • Aspiration – 21.4% • 4 side rails up – 93% • Isolation – 0% • Mean SOC 3.4 (1.22) ©2009 Rush University Medical Center

  47. Pediatric units – General Pediatric Adults with ID N=9 (7) Adults without ID N=356 (9) Age 22.9 (5.1) LOS 5.5 (7.8) Decision maker – 44.4% ER – 12.5% Ambulance – 12.5% Admission Source Home – 66.7% Other hospital 22.2% • Age 22.2 (3.5) • LOS 16.8 (32.5 N=9 ) • Decision maker – 71.4% • ER – 71.4% • Ambulance – 28.6% • Admission Source • Home – 57.1% • Community facility 14.3% • Nursing home 14.3% • Other hospital 14.3% ©2009 Rush University Medical Center

  48. Previous history – General Pediatrics Adults with ID N=7 Adults without ID N=9 Seizures 11.1% CP- 11.1% GI- 100% Respiratory -33.3% • Seizures -57.1% • CP 85.7% • GI 57.1% • Respiratory 42.9%% • Autism spectrum 14.3% ©2009 Rush University Medical Center

  49. Hospital incidents Adults with ID N=7 Adults without ID N=9 None noted • Post- op complications – 14.3% (N=1) • HA infection 14.3% (N=1) ©2009 Rush University Medical Center

  50. Precautions- General Pediatrics Adults with ID N=7 Adults without ID N=9 DVT – 11.1% • Isolation- 28.6% • Fall 42.9% • Skin integrity – 71.4% • Seizure – 57.1% • 4 side rail up – 42.9% ©2009 Rush University Medical Center

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