Peers with Disabilities as Partners in Clinical Practice: Responding - - PowerPoint PPT Presentation

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Peers with Disabilities as Partners in Clinical Practice: Responding - - PowerPoint PPT Presentation

Jun 05, 2023 180 likes •809 views

Peers with Disabilities as Partners in Clinical Practice: Responding to Patient Needs Julie Gassaway, MS, RN Susan Magasi, PhD Christina Papadimitriou, PhD Director Health & Wellness Assistant Professor Associate Professor

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Peers with Disabilities as Partners in Clinical Practice: Responding to Patient Needs

Julie Gassaway, MS, RN Director Health & Wellness julie_gassaway@shepherd.org Pete Anziano Peer Support Lead Instructional Designer pete_anziano@shepherd.org Christina Papadimitriou, PhD Associate Professor cpapadimitriou@niu.edu Susan Magasi, PhD Assistant Professor smagas1@uic.edu Judy Panko-Reis jreis@accessliving.org

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Peer supported interventions

  • Important adjunct to clinical care
  • Counteract barriers to health, health care, and

community reintegration

  • Opportunity to share experiential learning and

empathetic understandings of living with a disability

  • Foundation of person-centered care
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Affordable Care Act

  • Puts greater choices and accountability in the hands
  • f the consumer.
  • PCORI – fund research that provides information patients can

use to make better choices about their care

  • Consumers take greater responsibility for

understanding healthcare options and choose wisely to maintain health and wellness

  • Reliance on technology
  • Peer-to-peer support for healthcare decision making
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Three innovative peer-to-peer models

  • Shepherd Center, Atlanta, GA
  • Peer mentorship during inpatient rehabilitation for spinal cord injury
  • Funded by Patient Centered Outcomes Research Institute (PCORI)
  • University of Illinois at Chicago
  • Peer health navigator program helping people with newly acquired

physical disabilities negotiate the healthcare system

  • Funded by The American Occupational Therapy Foundation (AOTF)
  • Our Peers-Empowerment and Navigational Support (OP-ENS)

tailored to be primary healthcare needs of Medicaid beneficiaries with physical disabilities

  • Funded by National Institute on Disability, Independent Living and

Rehabilitation Research (NIDILRR)

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Who we serve at Shepherd Center

  • Individuals with significant neurologic injury or

disease (spinal cord injury, brain injury).

  • ~1,000 newly-injured SCI/TBI patients

admitted annually.

  • All have neurologic impairment resulting in

severe disability.

  • Most will face life-long challenges in managing

their own care.

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Who we serve at Shepherd Center

  • Challenges for community re-entry:
  • Complex care needs
  • Limited expertise in home communities
  • Employment
  • Challenges for personal life re-entry:
  • Sense of self
  • Relationships
  • Bowel / bladder / other ADL issues
  • Caregiving needs
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2011 Strategic Objective –

… Improve patient/family engagement in the care process and minimize hospital readmissions …Where to start?

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Input from patients and families

Patients and families do not feel prepared for the first few days after discharge. Patient and family education is essential but also

  • verwhelming.

Peer mentoring is important and should be available early in recovery. Almost all patients rely on technology for all aspects of life

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  • Three interventions to promote self-efficacy
  • One-to-one peer mentoring
  • Peer-directed patient/family education
  • Patient engagement portal for post-discharge

support

Patient Centered Outcomes Research Institute (PCORI) Improving Health Systems grant

Contract CE-12-11-5106

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One-to-One Peer Mentoring

  • Intervention
  • Patients matched with mentors based on injury,

demographic, other characteristics and preferences

  • Patients met for a minimum of one hour/week

throughout rehabilitation stay (5-6 weeks) and titrated calls for 90 days post discharge

  • 150+ peer mentors trained and certified by Christopher

Reeve Foundation (now >200 mentors)

  • Randomized Trial
  • 158 patients randomized to experimental or control

group

  • Control participants received usual care (enhanced

peer support program)

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Rehospitalization after discharge – patient level analysis

0% 5% 10% 15% 20% 25%

30 Days Post Discharge Period p = 0.85 90 Days Post Discharge Period p = 0.01 180 Days Post Discharge Period p = 0.27 Cumulative 180 Days Post Discharge p = 0.20

Control = 81 Experimental = 77

p=.02

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Rehospitalization after discharge – visit level analysis

0% 5% 10% 15% 20% 25% 30% 35% 40% 30 Days Post Discharge Period p = 0.74 90 Days Post Discharge Period p = 0.01 180 Days Post Discharge Period p = 0.71 Cumulative 180 Days Post Discharge p = 0.08

Control = 81 Experimental = 77

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  • Confidence in one’s ability to execute actions required to

achieve desired outcomes.

  • A powerful mediator in self-management of chronic health

conditions*

  • Three strategies known to improve self-efficacy:

1) mastery of skills (not just practice), 2) modeling of desired behavior by someone living with the same condition or circumstance, and 3) social reinforcement to encourage improvement beyond current performance.

Importance of self-efficacy

*Lorig K, Ritter P, Stewart A, Sobel D, Brown B, Bandura A, Gonzalez A, Laurent D, Holman H. Chronic Disease Self- Management Program: 2-Year Health Status and Health Care Utilization Outcomes. Medical Care, 2001;39(11):1217-1223. *Lorig K, Sobel D, Stewart A, Brown B, Bandura A, Ritter P, Gonzalez V, Laurent D, Holman H. Evidence Suggesting that a Chronic Disease Self-Management Program Can Improve Health Status While Reducing Hospitalization: A Randomized Trial. Medical Care, 1999;37(1):5-14.

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Patient reported Self Efficacy

(p=0.017)

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Peer-Directed Education

  • Intervention
  • Library of short videos to illustrate points and serve as

conversation starters

  • Changed classroom model to focus on problem

identification and solving led by peer mentor

  • Nurse educator served as content expert
  • Stepped wedge implementation
  • Across three classes – bladder, skin, special health

concerns (e.g., autonomic dysreflexia, DVTs, muscle spasms)

  • Differences in engagement and impact on PROs
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Bladder Management Class

Peer-Directed Education

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(p<.001)

Peer-Directed Education Engagement

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Significant differences in engagement

What do our patients say?

Peer-Directed Education Engagement

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  • 1. Because they (peers) talk with you instead of at you.
  • 2. Because it encourages engagement
  • 3. Because of having someone teach the class who I can relate to.
  • 4. The teachers provided great examples of real life experiences
  • 5. It touched me more by having my peers teach it rather than

nurses talking over slideshows

  • 6. The overall set-up of the information was more engaging
  • 7. It brought up a lot of things I hadn’t thought about.
  • 8. Games force me to participate
  • 9. Because it was more of an open forum.
  • 10. I feel like it was more one-on-one and peer-to-peer.

Why were your more engaged in the peer-led classes/discussions?type

classes?

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Engagement Portal

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Engagement Portal –invite providers/caregivers

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Implications / Opportunities

  • Participatory research is relevant and impacts interventions

and outcomes

  • Nature of systems changes supports implementation and

sustainability:*

  • Culturally compatible (patient-centered)
  • Ask consumers what is important
  • Observable benefits ( engagement/satisfaction)
  • Participation increases with response to requests
  • Low in complexity (and ongoing cost)
  • Relative advantage ( cost-effectiveness)
  • Potential for reinvention

*Greenhalgh, Robert, McFarlane, Bate, Kyriakidou, 2004

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Opportunities – here’s what is possible

  • Peer role model of productivity
  • Adjunct to case management
  • Easier to believe what you SEE than what you HEAR
  • Counteracts feelings of entitlement / compensation for life
  • All people want to be happy
  • Happy people tend to be productive people
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Peer Supported Education

Research Partners

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T/12 T/12 -16y

16yrs

T/12inc T/12inc -11y

11yrs

C/ C/6 6 -18y

18yrs

C/7 C/7 -5y

5yrs

C/ C/5inc 5inc -12y

12yrs

C/7inc C/7inc -32y

32yrs

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WHEN

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Peer Support to Promote Healthcare Justice

Susan Magasi and Judy Panko Reis

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Objectives

Highlight 2 community engaged projects aimed at promoting healthcare justice for people with disabilities. OP-ENS Peer Health Navigator Study Negotiating the Healthcare System as a Person with a Disability

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ARCC

  • People with Disabilities Speak Out on Healthcare Disparities
  • 2 year-pilot study (actually 16-months), (Sept. 2011-Dec. 2012)

ACS-IL

  • Screen-ABLE – Understanding and Enhancing Women with Disabilities use of Breast and Cervical Cancer

Screening

  • 2-year, (Jan. 2013-Dec. 2015)

NIDRR

  • Development of Peer Health Navigator Program for Medicaid enrollees with physical disabilities
  • 5-year, part of RRTC on health and function (Oct. 2014-Sep. 2019)

IPCE

  • Development of KT Collaboratives to Promote Healthcare Justice for People with Disabilities
  • 9-month, (Sept. 2014-Jun. 2015)

AOTF

  • Negotiating the Healthcare System as a Person with a Disability – An OT-Peer Led Intervention
  • 18-months, (Apr. 2015-Dec. 2016)

NIH

  • we CanConnect: mHealth application to promote peer-to-peer support among PWD & cancer
  • 3-year, (Oct. 2015-Sept.2018), part of U54 Chicago CHEC ($17 million infrastructure grant)

NIDILRR

  • mENTER - knowledge translation of a mHealth peer support intervention for people with disabilities returning

to community living

  • Under review as part of RRTC on Community Living for People with Disabilities
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Healthcare Access For People with Disabilities

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Different Ways of Understanding Disability

Credit C. Gill, PhD

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Our Peers – Empowerment and Navigational Support

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OP-ENS Intervention

  • Build Rapport
  • Communication
  • Cultural Competence
  • Identify Needs/Priorities
  • Consumer-Directed Care
  • Dignity of Risk
  • Motivational Interviewing
  • ID Barriers & Supports
  • Barrier and Support Identification
  • Co-create Goals
  • Goal Writing
  • Co-create Action Plan
  • Action Planning
  • Provide Support
  • Advocacy
  • Asset mapping

Knowledge

  • Health Disparities
  • Disability Rights Movement
  • Disability Etiquette
  • Medicaid Managed Care
  • Context of Care (CCAI)

Job Skills

  • Documentation
  • HIPAA and confidentiality
  • Boundary Setting
  • IRB – “Citi-fication”
  • Basic Office Skills

Resources

  • Understanding the ADA
  • Resource Packets
  • Getting to Know Community

Resources

Project Overview

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Status and Preliminary Outcomes

About to launch pilot testing (n=20) Trained a cohort of 10 peer navigators Findings from training:

  • Quality and commitment of applicants
  • Training made explicit tacit skills and knowledge
  • High value on strengths-based components
  • Dynamic and supportive relationship amongst

peers

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Negotiating the Healthcare System as a Person with a Disability

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Negotiating the Healthcare System as a Person with a Disability

  • A collaboration of researchers, occupational

therapists and self-advocates with disabilities

  • Emphasizes barrier identification, client needs,

goal setting and action planning

  • The 5 sessions that last 90 minutes each
  • Will be recruiting individuals with onset of

disabilities of < 12 months

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Project Overview

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Reflections on the Collaborative Partnership

Community Perspectives Academic Perspectives

  • Timelines
  • Priorities
  • Funding Issues
  • Access and Credibility
  • Credit
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Acknowledgements

90RT5027 Other Members of Our Team

  • Jennifer Thomas
  • Tom Wilson
  • Marilyn Martin
  • Sharon Lamp
  • Laura van Puymbrouck
  • Becky Sax
  • Kayla Smith
  • Kim The
  • Samantha Torres
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Hea ealth lth se services ices res esea earch ch impl plications ications of pe peer er pa partner tnershi ships ps

Chris ristina tina Pa Papad adim imitriou, itriou, PhD

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  • Are peer-to-peer interventions sustainable?

– Most programs are contingent on grant funding – What is the necessary evidence base?

  • Payment reimbursement

– What can we (as researchers, practitioners, advocates) recommend

Policy licy que uestion stions

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  • What team dynamics should we be aware of?

How do we create and sustain collaborative exchanges? Who should be involved in these teams??

  • What are sustainability issues for grant-funded

programs?

  • What to do to inform policy and or argue for the

implementation of these and interventions as a best practice in the USA?

Di Disc scussion ussion que uestion stions/ s/ topi pics cs

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  • Can we replicate these interventions?
  • Challenges of unique community, advocacy and

hospital collaborations

  • Opportunities to learn from across successful programs
  • Need to study these interventions nationally, across

institutions, and compare them – Challenges of constantly evolving programs – No evidence-base standards on what constitutes an effective program

Meth ethodological

  • dological impl

plications ications

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Thank You!

Julie Gassaway julie_gassaway@shepherd.org Pete Anziano pete_anziano@shepherd.org Susan Magasi smagas1@uic.edu Judy Panko-Reis jreis@accessliving.org Christina Papadimitriou Christina_papadimitriou@niu.org