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 julie_gassaway@shepherd.org smagas1@uic.edu cpapadimitriou@niu.edu Pete Anziano Judy Panko-Reis Peer Support Lead jreis@accessliving.org Instructional Designer pete_anziano@shepherd.or g
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
Affordable Care Act • Puts greater choices and accountability in the hands of 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
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)
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.
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
2011 Strategic Objective – … Improve patient/family engagement in the care process and minimize hospital readmissions …Where to start?
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 overwhelming . Peer mentoring is important and should be available early in recovery. Almost all patients rely on technology for all aspects of life
Patient Centered Outcomes Research Institute (PCORI) Improving Health Systems grant • Three interventions to promote self-efficacy • One-to-one peer mentoring • Peer-directed patient/family education • Patient engagement portal for post-discharge support Contract CE-12-11-5106
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 Tria l • 158 patients randomized to experimental or control group • Control participants received usual care (enhanced peer support program)
Rehospitalization after discharge – patient level analysis 25% 20% p=.02 15% Control = 81 10% Experimental = 77 5% 0% 30 Days Post Discharge 90 Days Post Discharge 180 Days Post Discharge Cumulative 180 Days Post Period Period Period Discharge p = 0.85 p = 0.01 p = 0.27 p = 0.20 11
Rehospitalization after discharge – visit level analysis 40% 35% 30% 25% 20% Control = 81 Experimental = 77 15% 10% 5% 0% 30 Days Post Discharge 90 Days Post Discharge 180 Days Post Discharge Cumulative 180 Days Post Period Period Period Discharge p = 0.74 p = 0.01 p = 0.71 p = 0.08 12
Importance of self-efficacy • 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. *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.
Patient reported Self Efficacy (p=0.017)
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
Bladder Management Class Peer-Directed Education
Peer-Directed Education Engagement (p<.001)
Peer-Directed Education Engagement Significant differences in engagement What do our patients say?
Why were your more engaged in the peer-led classes/discussions? type classes? 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.
Engagement Portal
Engagement Portal – invite providers/caregivers
Implications / Opportunities • Participatory research is relevant and impacts interventions and outcomes • Nature of systems changes supports implementation and sustainability: * o Culturally compatible (patient-centered) o Ask consumers what is important o Observable benefits ( engagement/satisfaction) o Participation increases with response to requests o Low in complexity (and ongoing cost) o Relative advantage ( cost-effectiveness) o Potential for reinvention *Greenhalgh, Robert, McFarlane, Bate, Kyriakidou, 2004
Opportunities – here’s what is possible • Peer role model of productivity o Adjunct to case management o Easier to believe what you SEE than what you HEAR o Counteracts feelings of entitlement / compensation for life o All people want to be happy o Happy people tend to be productive people
Peer Supported Education Research Partners
T/12 -16y T/12 C/ C/6 6 -18y 16yrs 18yrs T/12inc T/12inc -11y 11yrs C/ C/5inc 5inc -12y 12yrs C/7inc -32y C/7inc C/7 C/7 -5y 5yrs 32yrs
WHEN
Peer Support to Promote Healthcare Justice Susan Magasi and Judy Panko Reis
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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