3/9/2018 Disclosures Dr. Raymaker and Dr. Kripke and our families have no relationships with commercial interests. AASPIRE Healthcare Toolkit DORA M RAYMAKER, PHD, PORTLAND STATE UNIVERSITY CLARISSA KRIPKE, MD, UNIVERSITY OF CALIFORNIA SAN FRANCISCO Introduction AASPIRE Healthcare Toolkit Dora: Research Assistant Professor @ Portland State University Academic Autism Spectrum Partnership in Research and Education Service/intervention research with disability populations (AASPIRE) - founded 2006 Dora & Dr. Christina Nicolaidis Co-director Academic Autism Spectrum Partnership in Team of academic researchers, autistic individuals, family members, Research and Education (aaspire.org) healthcare providers, disability professionals Autistic self-advocate / disability rights advocate Partnership with Portland State University, Autistic Self Advocacy Network, Autism Society of Oregon, Syracuse University, Indiana Clarissa: University, Oregon Health & Science University, members of the Autistic community at large Clinical Professor, Family and Community Medicine @ University of Mission: equitable inclusion, community relevance, positive change California San Francisco for people on the autism spectrum AASPIRE Academic partner AASPIRE Healthcare Toolkit: multi-year research project to improve healthcare access and quality for adults on the spectrum Director of Office of Developmental Primary Care/CART Services 1
3/9/2018 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 CBPR Principles Community Based Participatory Research 1 Acknowledge the community as a unit of identity. 2 Build on strengths and resources in the community. An approach, not a method Facilitate a collaborative, equitable partnership in all phases Can be used with any research methods 3 of the research. Response to problems of traditional research: 4 Foster co-learning and capacity building among all partners. Ethics / power / trust Balance knowledge generation and intervention for the Inclusion of marginalized populations 5 mutual benefit of all partners. Validity of methods / results 6 Attend to both local and ecological perspectives. Interpretation of data Implications / usefulness of findings 7 Develop systems using a cyclical and iterative process. Equal partnership between academics and community members Disseminate results to all partners, and involve all partners in 8 Approach can be used outside of research! dissemination. 9 Commit to long-term processes and group sustainability. 2
3/9/2018 Community Based Participatory Considerations for Equitable Research 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 Nicolaidis, C., Raymaker, D.M., et.al. (2011) Shared how Call for all Communication Processes for Discussion Passed many? Decision- fingers 1 or 2 Making AASPIRE any 3, 4, or Process 5 Discuss / List serve 1) I love it! Explain any 3, 4, or 5 Text-based group chat 2) it’s fine. KEY Structured communications 3) I have more Generate Start/Stop questions. (and Jargon-free—or at least jargon-explained! new ideas what they are) Process 4) I don’t like it, but I Call for won’t block it. (and Decision fingers why) relationship 5) I dislike it so much I can’t live with it. (and why) how any 3 or 5 all 1, 2, or 4 many? 3
3/9/2018 Feedback Processes Accommodations Provide what people need to work; a few examples: ASL interpreter Keep / Change exercise at the end of meetings One-on-one meetings Check-in discussion at the end of meetings, at project Personal assistance during meetings milestones, or when there’s been a change Sensory accommodations (lights, sounds, providing External evaluation / formal evaluation 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 Attending to Inclusion Pays Off 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 4
3/9/2018 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 Toolkit Development to accessing healthcare Emotional regulation BARRIERS TO HEALTHCARE AND RESEARCH FINDINGS Patient-provider communication Sensory sensitivity Healthcare navigation Top Barriers to Healthcare AASPIRE Qualitative Study Fear or anxiety Semi-structured, open-ended individual interviews Not being able to process information fast enough to participate in 39 autistic adults and 16 supporters real-time discussions about healthcare Focus on understanding healthcare experiences and Concern about cost how to improve them. Facilities causing sensory issues Conducted in person, via telephone, email, or IM chat Difficulty communicating with providers Considered accommodations for these and other top barriers in the toolkit. 5
3/9/2018 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.” Nicolaidis et al, JGIM 2015 Patient-Level Factors: Sensory Patient-Level Factors: Challenges Sensitivities With Body Awareness “The lights in the office are very bright and that is exacerbated by “Like when they ask if pain is shooting or stabbing or burning, it's like, the white walls. Sometimes the waiting rooms are crowded and I I don't know, it just feels funny.” Another explained: “The problem is it cannot filter out the background of people talking or shuffling is difficult for me to isolate specific sources of pain and identify magazines. I feel disoriented by being led down long hallways to duration and intensity. It's sort of like the equivalent to white noise.” 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.” 6
3/9/2018 Other Patient Level Factors Provider-Level Factors: Providers’ Lack of Knowledge Need for consistency “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 Slow processing speed should change how they treat me.” Atypical non-verbal Communication “I thought doctors would understand my autism. I thought saying, Challenges with organization: ‘well, I have autism’ would be a suitable explanation for why I have age-inappropriate troubles with managing my healthcare, but it's “with my autism it is very difficult for me to understand and follow not.” all the different appointments and procedures I have to schedule and how to do it, and no one will help me since “People attribute behaviors to the autism rather than looking for an apparently people magically become competent at these illness first. Oh that's her autism, she's banging her head against the things before they turn 21.” 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 Provider Level Factors: Willingness about Patients’ Skills or Needs to Communicate in Writing “I have used my Alphasmart [portable communication device] “I prefer and find it easier to communicate in text.... But with every when my speech is too slow or difficult to understand for medical doctor I speak to, they wave away the note-card and look at me to appointments. Some of the doctors have been really great, but ask the same question I have just answered and interpret my others have acted really condescending when I used it, also confusion as my being non-compliant with the medicine. I wish immediately assuming I couldn't be alone, had to have had parents health care providers would read the notes I make for them.” 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 out.” 7
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