The document discusses health literacy in the autism context. It defines health literacy and identifies key stakeholders, such as caregivers of individuals with autism and autistic individuals capable of independent living. It also discusses why these stakeholders need health information, including to understand diagnoses, access services, and assist with self-care. The document then examines various sources of health information available online and their potential shortcomings. It identifies factors like stages of grief and orientations to disability as variables that can impact health literacy. Finally, it discusses strategies professionals can use to improve health literacy, such as using simple language, pictures, and involving family.
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The document discusses health literacy in the autism context. It defines health literacy and identifies key stakeholders, such as caregivers of individuals with autism and autistic individuals capable of independent living. It also discusses why these stakeholders need health information, including to understand diagnoses, access services, and assist with self-care. The document then examines various sources of health information available online and their potential shortcomings. It identifies factors like stages of grief and orientations to disability as variables that can impact health literacy. Finally, it discusses strategies professionals can use to improve health literacy, such as using simple language, pictures, and involving family.
The document discusses health literacy in the autism context. It defines health literacy and identifies key stakeholders, such as caregivers of individuals with autism and autistic individuals capable of independent living. It also discusses why these stakeholders need health information, including to understand diagnoses, access services, and assist with self-care. The document then examines various sources of health information available online and their potential shortcomings. It identifies factors like stages of grief and orientations to disability as variables that can impact health literacy. Finally, it discusses strategies professionals can use to improve health literacy, such as using simple language, pictures, and involving family.
Copyright:
Attribution Non-Commercial (BY-NC)
Available Formats
Download as PPTX, PDF, TXT or read online from Scribd
The document discusses health literacy in the autism context. It defines health literacy and identifies key stakeholders, such as caregivers of individuals with autism and autistic individuals capable of independent living. It also discusses why these stakeholders need health information, including to understand diagnoses, access services, and assist with self-care. The document then examines various sources of health information available online and their potential shortcomings. It identifies factors like stages of grief and orientations to disability as variables that can impact health literacy. Finally, it discusses strategies professionals can use to improve health literacy, such as using simple language, pictures, and involving family.
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Health Literacy in the Autism Context
By: Bill Wong, MA, OTD (cand.)
Presentation Overview What is health literacy? Key stakeholders and why? Hands on activity Orientation to whats information are out there and there shortcomings Confounding variables to consider Case Study: Experiences with me and my family What can we do?
Health Literacy Health Literacy = to the degree individuals have capabilities to process and understand basic health information in order to make appropriate health decision for themselves and/or family members, and enables individuals to have control over and improve their health conditions (Schubert & Barenkow, 2011)
Health Literacy (cont.)
Consumers and caregivers may or may not have done prior research coming into meeting health professionals (Voltz, 2006) Consequences of inadequate health literacy = increased likelihood for adverse health related outcomes Can be considered as a risk or asset (Nutbeam, 2008)
Health Literacy (cont.)
Functional Health Literacy Interactive/Communicative Health Literacy
Critical Health Literacy
OTs have a role in promoting these 3 types of health literacy. (Schubert & Barenkow, 2011)
Main Stakeholders of Health Literacy in Autism Context
Caregivers of children and/or adults who are incapable of living independently
Adults on autism spectrum who are capable of living independently
Caregivers who maybe undiagnosed, but suspects that they may be on autism spectrum after learning their childrens diagnoses
Stakeholders Need Info Because
Understand what is wrong
Gain a realistic idea of prognosis
Make the most of consultations/visits
Understand the processes and likely outcomes of possible tests and treatments Assist in self-care
Stakeholders Need Info Because (cont.)
Learn about available services and sources for help Providing reassurance and help with coping Help others to understand Confirm seeking help and the caregivers and/or consumers concerns Prevention of secondary diagnoses
Stakeholders Need Info Because (cont.)
Identify further information and self help groups Identify the best healthcare providers. (Coulter et. al, 1999)
(Nutbeam, 2008)
Quotes i need help?? i have asperger syndrome and bipolar and now having whats called tonic seizures my muscles stiffin up and i used to have grand mal seizures when i was little but almost every day at work i do go into these type of seizures at work almost daily now had 1 saturday im so tired still i want to drive one day but if i go into a seizure like this i would istantly wreck. its often frustarting im agitated a lot
Quotes (cont.) Hey all, just a question. If you are an aspie and a parent, how do you handle the need of "me" time? I can't get any at all and the husband tries but my NT child is getting clingy and my aspie is fine with it. Being an aspie seems to have given me and my aspie a be bond and a wedge between my NT making him try to spend more time with or around me. Not that I don't love him, I do with all my heart but he is driving me bananas
Quotes (cont.) Today is our second day of summer vacation. I guess its just the change in schedule, but these 2 days have been one meltdown running into the next meltdown. The stress is spreading to the rest of us and my other 2 children are now acting up too. We're still adjusting to the diagnosis that my 9 year old has aspergers and I'm overwhelmed. Any tips, advise will be greatly appreciated.
Hands On Activity Imagine if what place(s) you will first go to to find information about your diagnosis? Why? 1. A single parent who just learned of your childs diagnosis and being overwhelmed from having to be in charge of your childs IEP plans and/or arranging therapy services
Hands on Activity (cont.)
2. A teen on the autism spectrum (middle or high school aged) who just learned of your diagnosis through your parents and/or psychologist. (You may have several friends just like you.)
Hands on Activity (cont.)
3. An adult with high functioning autism/Aspergers/PDD-NOS who has just learned of your diagnosis. You are complaining about the lack of services around where you live. You are lonely even though you felt you made a genuine effort to make friends.
What Type of Information Are Out There?
Public Websites http://www.autismspeaks.org/ http://www.cdc.gov/ncbddd/autism/index.html http://www.easterseals.com/site/PageServer?pagename= ntlc8_autism101 http://en.wikipedia.org/wiki/Autism
Discussion Forum type pages http://www.wrongplanet.net/ https://www.facebook.com/ASPERGERSSUPPORTNETWORK https://www.facebook.com/aspergersawarenesspage https://www.facebook.com/AspergersAdultSupport
Lots of web sites with different types of information across different mediums Quality of information varies Divergent viewpoints
Shortcomings of Information on the Internet
Valid but incomplete information Information is not tailored to target audience Potentially inaccurate and misleading info
Consumers and caregivers overoptimistic about particular treatment interventions
(Benigeri & Pluye, 2003; Coulter et. al, 1999)
Stages of Grief & Change Theory- Confounding Variable(s)
One or both can be explained as confounding variable(s) to health literacy
Kubler-Ross Stages of Grief
Denial Anger Bargaining Depression Acceptance
Stages of Grief & Change TheoryConfounding Variable(s) (cont.)
Change Theory Precontemplation Contemplation Preparation Action Maintenance
Disability Participation and Disability Orientation
Disability participation = a persons access to and engagement with activities Disability orientation = a persons interpretation of his/her disability experience and his/her perceptions of the meaning of being disabled.
Disability Participation and Disability Orientation (cont.)
4 types of disability orientations Normalization Resignation Crusadership Affirmative
(McCormack & Collins, 2012)
Orientation
Norms Accepted
Wishes for Own Lifestyle
Access to Normalization
Access to Disability Culture Dont wish to embrace disability culture Dont have knowledge to embrace disability culture
Normalization
Disability is undesirable
A lifestyle is similar to non-disabled individuals A lifestyle is similar to non-disabled individuals
Embraces rehab, technology, and support of others Dont have resources to normalize
Resignation
Disability is undesirable
Crusader
Disability is undesirable
Social inclusion within society
Dont have resources to normalize
Have knowledge and access to disability culture. Strive to promote social change and inclusion in majority culture. Have knowledge of and access to disability culture. Take pride in disability and see disability culture as something to celebrate.
Affirmation
Disability is viewed in positive terms
Society is to recognize disability as a facet of human diversity, not necessarily social inclusion
Dont wish to normalize. Embrace disability instead.
What Does This Mean in the Autism Context
All consumers and caregivers will fall into one of these categories. Can be different within each family
This can also affect how OTs do client and/or family education about autism. Without this element, our interventions wont be considered as authentically client centered. (McCormack & Collins, 2012)
My Family and Is Experiences
Summer 2009 to Summer 2010
When I failed first my level 2 FW (Summer 2010)
The day of learning my diagnosis to Student Conclave 2010 Student Conclave 2010 to last fall Last fall to present
Analysis of My family and Is Experiences
Interaction variables within the experience Me in OT community Severity of my symptoms My support system
My family- Normalization Me- Normalization -> Affirmation
What Can We Do?
Slow down Use simple language Ask for verification of essential points Repeat instructions Ask caregivers and/or consumers to attempt to summarize what you said
What Can We Do?
Invite caregivers and/or consumers to demonstrate if appropriate. Provide instructions in bits and pieces Picture can be more effective than words Include family members Dont be afraid to go outside the box
What Can We Do?
Be aware of possible cultural differences
Be aware of little things in communication
Aware of gender roles
Consider content, format, layout, language, legibility, and illustrations of written materials (Davis et. al., 1996; Davidhizar & Brownson, 2000; Griffin et. al., 2003; Smith & Gutman 2011)
References American Occupational Therapy Association (2011). AOTAs societal statement on health literacy. American journal of occupational therapy, 65, S78-S79. Benigeri, M., & Pluye, P. (2003). Shortcomings of health information on the internet. Health promotion international, 18(4), 381-384. Coulter, A., Entwistle, V., & Gilbert, D. (1999). Sharing decisions with patients: is the information good enough. British medical journal, 318(7179), 318-322. Davidhizar, R. E., & Brownson, K. (2000). Literacy, cultural diversity, and client education. Home health care management & practice, 12(2), 38-43. Davis, T. C., Meldrum, H., Tippy, P. K. P., Weiss, B. D., & Williams, M. V. (1996). How poor literacy leads to poor health care. Patient Care, 30, 94104.
References Griffin, J., McKeena, K., & Tooth, L. (2003). Discrepancy between older clients ability to read and comprehend and the reading level of written educational materials used by occupational therapists. American journal of occupational therapy, 60(1), 70-79. Griffin, J., McKeena, K., & Tooth, L. (2003). Written health education materials: making them more effective. Australian occupational therapy journal, 50(3), 170176. Nutbeam, D. (2008). The evolving concept of health literacy. Social science & medicine, 67, 2072-2077. Parikh, N. S., Parker, R. M., Nurss, J. R., Baker, D. W., & Williams, M. V. (1996). Shame and health literacy: the unspoken connection. Patient education and counseling, 27, 33-38.
Sabo, R. M. (2010). Autism consumer health web sites: are readability levels too high?. Journal of consumer health on the internet, 12(4), 337-346.
References Sabo, R. M., & Lorenzen, J. M. (2008). Consumer health web sites for parents of children with autism. Journal of consumer health on the internet, 12(1), 37-47. Schubert, L. (Producer), & Barnekow, K. (Producer) (2011, May 6). Health literacy: Identifying a role for occupational therapy. Living life to its fullest podcast. [Audio podcast]. Retrieved from http://www.aota.org/Consumers/consumers/Podcasts.aspx Smith, D. L., & Gutman, S. A. (2011). Health literacy in occupational therapy practice and research. American Journal of Occupational Therapy, 65(4), 367369. Voltz, J. D. (2006). Health literacy: occupational therapists have a responsibility to communicate effectively with their clients. Advance for occupational therapy practitioners, 22(4), 54-56.
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