AASPIRE Healthcare Toolkit DORA M RAYMAKER, PHD, PORTLAND STATE - - PowerPoint PPT Presentation

3/9/2018 1

AASPIRE Healthcare Toolkit

DORA M RAYMAKER, PHD, PORTLAND STATE UNIVERSITY CLARISSA KRIPKE, MD, UNIVERSITY OF CALIFORNIA SAN FRANCISCO

Disclosures

 Dr. Raymaker and Dr. Kripke and our families have no

relationships with commercial interests.

Introduction

 Dora:  Research Assistant Professor @ Portland State University  Service/intervention research with disability populations  Co-director Academic Autism Spectrum Partnership in

Research and Education (aaspire.org)

 Autistic self-advocate / disability rights advocate  Clarissa:  Clinical Professor, Family and Community Medicine @ University of

California San Francisco

 AASPIRE Academic partner  Director of Office of Developmental Primary Care/CART Services

AASPIRE Healthcare Toolkit

 Academic Autism Spectrum Partnership in Research and Education

(AASPIRE) - founded 2006 Dora & Dr. Christina Nicolaidis

 Team of academic researchers, autistic individuals, family members,

healthcare providers, disability professionals

 Partnership with Portland State University, Autistic Self Advocacy

Network, Autism Society of Oregon, Syracuse University, Indiana University, Oregon Health & Science University, members of the Autistic community at large

 Mission: equitable inclusion, community relevance, positive change

for people on the autism spectrum

 AASPIRE Healthcare Toolkit: multi-year research project to improve

healthcare access and quality for adults on the spectrum

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Agenda

 Approach – community based participatory research  Toolkit development – barriers to healthcare and research findings  Toolkit content – using the toolkit / demo and recommendations

Approach

COMMUNITY BASED PARTICIPATORY RESEARCH

Community Based Participatory Research

 An approach, not a method  Can be used with any research methods  Response to problems of traditional research:  Ethics / power / trust  Inclusion of marginalized populations  Validity of methods / results  Interpretation of data  Implications / usefulness of findings  Equal partnership between academics and community members  Approach can be used outside of research!

CBPR Principles

1 Acknowledge the community as a unit of identity. 2 Build on strengths and resources in the community. 3 Facilitate a collaborative, equitable partnership in all phases

• f the research.

4 Foster co-learning and capacity building among all partners. 5 Balance knowledge generation and intervention for the mutual benefit of all partners. 6 Attend to both local and ecological perspectives. 7 Develop systems using a cyclical and iterative process. 8 Disseminate results to all partners, and involve all partners in dissemination. 9 Commit to long-term processes and group sustainability.

3/9/2018 3 Community Based Participatory Research

Nicolaidis, C., Raymaker, D.M., et.al. (2011)

Considerations for Equitable Practice

 Power-sharing  Shared leadership  Trust  Processes and structures for  Communication  Shared decision-making  Feedback and adjustments  Other accommodations  Will look different for each group

Communication Processes for AASPIRE

 List serve  Text-based group chat  Structured communications  Jargon-free—or at least jargon-explained!

Shared Decision- Making Process

Discussion Call for fingers how many? Passed Discuss / Explain any 3, 4, or 5 Generate new ideas Call for fingers how many? all 1 or 2 any 3, 4, or 5 all 1, 2, or 4 any 3 or 5 Process Decision Start/Stop relationship KEY

1) I love it! 2) it’s fine. 3) I have more

• questions. (and

what they are)

4) I don’t like it, but I

won’t block it. (and why)

5) I dislike it so much I

can’t live with it. (and why)

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Feedback Processes

 Keep / Change exercise at the end of meetings  Check-in discussion at the end of meetings, at project

milestones, or when there’s been a change

 External evaluation / formal evaluation

Accommodations

 Provide what people need to work; a few examples:  ASL interpreter  One-on-one meetings  Personal assistance during meetings  Sensory accommodations (lights, sounds, providing

fidgets, etc.)

 Extra processing time  Alternate formats for materials or communication  Money for child care, transportation  Ask your collaborators what they need and be willing to

make changes based on feedback over time

These Processes Work Outside of Research!!

 Community Advisory Boards – Example: Early Assessment

and Support Alliance (EASA) Young Adult Leadership Council

 Product development (like the AASPIRE Healthcare

Toolkit website!)

 Person-centered planning  Healthcare settings

Attending to Inclusion Pays Off

3/9/2018 5 Toolkit Development

BARRIERS TO HEALTHCARE AND RESEARCH FINDINGS

Barriers to Healthcare

 66 yes/no items: transportation, availability and access

to services, insurance, access and accommodations in facilities, social/family/care-giver support, individual, communication

 Online survey, Autistic (N=209), non-autistic with

disabilities (N=55), non-autistic / no disabilities (N=173)

 Autistic group experienced different and greater barriers

to accessing healthcare

 Emotional regulation  Patient-provider communication  Sensory sensitivity  Healthcare navigation

Top Barriers to Healthcare

 Fear or anxiety  Not being able to process information fast enough to participate in

real-time discussions about healthcare

 Concern about cost  Facilities causing sensory issues  Difficulty communicating with providers

Considered accommodations for these and other top barriers in the toolkit.

AASPIRE Qualitative Study

 Semi-structured, open-ended individual interviews  39 autistic adults and 16 supporters  Focus on understanding healthcare experiences and

how to improve them.

 Conducted in person, via telephone, email, or IM chat

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Nicolaidis et al, JGIM 2015

Patient-level Factors: Verbal Communication

 “They asked him, ‘On the level of one to ten, where is your pain?’

...He said, ‘Um, how do you weigh your pain?’”

 “It is always hard for me because I don't have the words that normal

people have to communicate with. I don't always know how to respond properly to questions from health care providers.”

Patient-Level Factors: Sensory Sensitivities

 “The lights in the office are very bright and that is exacerbated by

the white walls. Sometimes the waiting rooms are crowded and I cannot filter out the background of people talking or shuffling

• magazines. I feel disoriented by being led down long hallways to

different rooms.... I am not able to bring up my concerns because it is all I can manage to figure out what the doctor is saying so I can respond to his questions. But he refills my usual meds and I go on my way.”

Patient-Level Factors: Challenges With Body Awareness

 “Like when they ask if pain is shooting or stabbing or burning, it's like,

I don't know, it just feels funny.” Another explained: “The problem is it is difficult for me to isolate specific sources of pain and identify duration and intensity. It's sort of like the equivalent to white noise.”

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Other Patient Level Factors

 Need for consistency  Slow processing speed  Atypical non-verbal Communication  Challenges with organization:  “with my autism it is very difficult for me to understand and follow

all the different appointments and procedures I have to schedule and how to do it, and no one will help me since apparently people magically become competent at these things before they turn 21.”

Provider-Level Factors: Providers’ Lack of Knowledge

 “I have gotten the distinct impression that all of the physicians I have

seen have had no clue what autism means or entails or how that should change how they treat me.”

 “I thought doctors would understand my autism. I thought saying,

‘well, I have autism’ would be a suitable explanation for why I have age-inappropriate troubles with managing my healthcare, but it's not.”

 “People attribute behaviors to the autism rather than looking for an

illness first. Oh that's her autism, she's banging her head against the wall because that's her autism. Nobody thinks, ‘Oh gosh! Maybe she has a migraine!’ ...They forget to realize that she can't verbally express it so she uses behavior instead.”

Provider-Level Factors: Assumptions about Patients’ Skills or Needs

 “I have used my Alphasmart [portable communication device]

when my speech is too slow or difficult to understand for medical

• appointments. Some of the doctors have been really great, but
• thers have acted really condescending when I used it, also

immediately assuming I couldn't be alone, had to have had parents there too ... So I try to go without, even when my speech is in a poorer shape.”

 “Usually when I demonstrate a large vocabulary or some

fundamentals, my needs especially around communication are then ignored. My choice is then to pretend to be less intelligent and accept their infantilism, or to be confused, frustrated, and stressed

• ut.”

Provider Level Factors: Willingness to Communicate in Writing

 “I prefer and find it easier to communicate in text.... But with every

doctor I speak to, they wave away the note-card and look at me to ask the same question I have just answered and interpret my confusion as my being non-compliant with the medicine. I wish health care providers would read the notes I make for them.”

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Provider-Level Factors: Accessible Language

 “But they talk to him in the same words that they'd use if they were

talking to me.... If they're gonna talk to him... they need to say it how he can understand it.”

 “Just because I might need more information to understand things,

it doesn't mean they can or should just talk to me like a child or leave me without knowledge of my own health. My body is my body, and my experiences and wishes about my body are MINE TO MAKE!”

Provider-Level Factors: Willingness to Accommodate

 “And they were very happy to accommodate all of her sensory and

communication needs, including communicating with her by email ahead of time, and giving her descriptions of who would be there, what the process would be, how long it would take... I believe that they even supplied her with photographs of all of the staff and their names.”

Provider Level Factors: Skill in Incorporating Supporters

 “The triage person kept speaking to the person who brought me

rather than me. The lady could have spoken directly to me.”

 “[my mother] would say the things, or answer the things that I don't

know--like insurance things--and I would answer other things”.

System-Level Factors: Availability of Supports / Complexity of HC System

 “I wish they understood how easy it is to get confused with all the

administrative hoops a patient has to jump through to get help. It sounds pathetic at my age, but I need someone to hold my hand. I don't know what I am doing. But nobody understands that I need that, and there is definitely nobody willing to do it.”

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System Level Factors: Accessibility

• f Facilities

 “It really doesn't take a whole lot to modify things so that you can

meet the needs for most of the people on the spectrum. Right now, those offices are set up for the physicians. They are not set up for the patients.”

System-Level Factors: Discrimination and Stigma

 “I am very careful when it comes to disclosing my [autism] diagnosis

to my healthcare providers, because I fear it's gonna affect my healthcare.”

System-Level Factors: Other Social Determinants of Health

 Poverty  Health insurance  Employment inequity

Additional input from PCPs

 Brief survey of 129 PCPs:  73% felt uncomfortable in their ability to provide

quality care for adults on the spectrum

 84% no plans to seek additional training on ASD  88% would accept autistic adult in their practice If new autistic pt, <50% would attend CME 82% would search information on the Internet 98% would read customized report about pt

needs

99% would appreciate patient’s effort  Qualitative interviews with 9 PCPs

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AASPIRE Healthcare Toolkit

 Developed collaboratively by the AASPIRE team  Content and form based on our study findings and input

from community-academic team: informed what to target and the types of tools and resources to include; CBPR iterative development process.

 Web site for providers and patients with

worksheets/checklists/resources/information & Autism Healthcare Accommodations Tool (AHAT)

 Development and Testing of the Autism Healthcare

Accommodation Tool (AHAT)

 Cognitive interviews  Test re-test reliability study

37

Toolkit Evaluation

 Quantitative and qualitative, one group of participants,

pre-post intervention (using AHAT and web site), in real- life setting.

 Autistic patients completed pre-survey (either directly

• r via a supporter).

 Used the AHAT to create personalized report.  Could choose whether to have us send to PCP.  Access to toolkit  One month later –post-survey of autistic participant,

and if applicable, PCP

Participants in Toolkit Evaluation

Autistic Adults N=170

Study Participation Participated directly, independently Participated directly with support Participated via proxy

70.2% 10.2% 19.4%

Age: mean (range; std)

36.5 (18-68; 12.9)

Gender - Male

44%

Living Situation Own place (rent or own) With family Group home Other

56.9% 34.5% 6.3% 2.3%

Requires assistance to receive healthcare Always or often Sometimes Rarely or never

32.3% 31.1% 36.6%

Patient and Provider Impressions

Evaluation Item Autistic Adults (N=126)

Easy to understand – most or almost all items

95%

Important – Somewhat or very important

97%

Useful – Somewhat or very useful

95%

Would you recommend Toolkit to a friend - Yes

92%

Would you recommend Toolkit to healthcare provider - Yes

95% Evaluation Item PCPs (N=41)

Useful – moderately or very useful

82%

Would you recommend Toolkit to other patients - Yes

87%

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Change in Outcomes between Pre- and Post-Intervention

Outcome N Pre- Post- P- Value

Barriers to healthcare

108 4.07

2.82

<0.0001

Healthcare self- efficacy

98 37.92 39.39 0.016

Patient-provider communication

43 30.91 32.63 0.027

Data only shown for autistic adults who participated directly (with or without support) in both pre- and post-tests and did not have any missing data on the outcome measure. Pt-Provider communication only asked if saw PCP.

Qualitative Themes - Patients

 A means to clarify and communicate needs  “Filling out the survey helped me clarify some things of

which I was only vaguely aware. It also helped put into words things I am unable to communicate because I cannot think of the right words.”

Qualitative Themes - Patients

 Validated their experience and empowered them to

better self-advocate

 “It was validating. Previously, I felt that some of the

things I was doing, like bringing support with me, was a sign of weakness. Now, I view it as part of

• accommodation. It also gave me some ideas of

things to try that I hadn't thought of.”

Qualitative Themes - Patients

 Improved their self-efficacy, especially by helping them

prepare for visits

 “It takes away a lot of my uncertainty about the

• appointments. Whether I'll bring up everything I want

to bring up, whether I asked the right questions about follow up care, and being prepared for talking to new

• doctors. It's a game changer for me.”

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Qualitative Themes - Patients

 Most – enthusiasm about effect on provider:  “Y'all sent things to the doctor so MAYBE THIS TIME

he'll listen to me.”

 Minority voiced concerns about PCP response:  “When I asked my psychiatrist to not use air

fresheners she said she had to or else her office smelled, and she acted like it was a really big burden on her. I think that if I handed your nice letter to my physicians … they would think I am asking too much of them. I already stand out; I don't want to stand out more.”

Examples of Actual Changes

 “I brought a copy of the accommodation letter in case

he had not received it. He had and it was already scanned into his computer. He went over it with me and did what had been recommended.… I was reassured by the doctor taking the accommodation letter seriously…. I felt like some of the difficulties I experience were addressed and that they wouldn't have been had I not made use of the Healthcare Toolkit.”

 “I think the Toolkit validated that my concerns and my

daughter's ‘issues’ (sensory, behavioral, etc.) which often presented during medical appointments were typical for ASD patients and should be accommodated.”

Qualitative Themes - PCPs

 Most appreciated Toolkit Utility  “Extremely helpful. What I needed were specific, but

concise suggestions regarding how to make my patient more comfortable. The report will be in her chart and I will use it at each visit.”

 Some felt they didn’t need it (knew pt well)  Two providers said they didn’t have time for it.

Toolkit Content

USING THE TOOLKIT / DEMO AND RECOMMENDATIONS

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Toolkit Demonstration

http://autismandhealth.org

Home Page

50

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Autism Healthcare Accommodations Tool (AHAT)

 Fill out a survey  Computer uses answers to create a

personalized and healthcare provider-friendly report of accommodations

Sample AHAT Item

54

Office of Developmental Primary Care

http://odpc.ucsf.edu

Communication Access

Communication is the foundation of

patient care

Everybody communicates Find a way! http://odpc.ucsf.edu/communication

s-paper

3/9/2018 15 http://odpc.ucsf.edu/communications-paper

Conclusions

 CBPR process resulted in a highly accessible and usable

healthcare toolkit.

 Toolkit has the potential to decrease barriers to

healthcare and improve healthcare self-efficacy and patient-provider communication.

 Changes may have been driven by changes in self-

awareness and self-advocacy, as well as changes in patient and provider behaviors.

Implications

 Please use the toolkits! – Available for free at

www.autismandhealth.org; http://odpc.ucsf.edu/communications-paper

 Tools may also be helpful to other patients with

disabilities or low health literacy.

 Healthcare systems should find ways to incorporate such

tools into clinical practice.

 Other groups attempting to develop interventions for

marginalized populations should consider using a CBPR approach.

Thank You

 AASPIRE Team Members  Autistic Self Advocacy Network  The Oregon Commission on Autism Spectrum Disorders

Healthcare Subcommittee

 All the study participants and supporters  Funding was provided via a grant from the National

Institute of Mental Health (R34MH092503)

 Thank you to Golden Gate, Alta California, Far Northern,

Redwood Coast and North Bay Regional Centers, and the WITH Foundation

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Thank You!

 AASPIRE Healthcare Toolkit: http://autismandhealth.org  AASPIRE: http://aaspire.org  Office of Developmental Primary Care:

http://odpc.ucsf.edu

 Dora M Raymaker  draymake@pdx.edu  http://doraraymaker.com  Clarissa Kripke  Clarissa.Kripke@ucsf.edu