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 what’s 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

• OT’s 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 children’s 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 child’s diagnosis and being overwhelmed from having to be in charge of your child’s 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/Asperger’s/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?pagen

ame=ntlc8_autism101

• http://en.wikipedia.org/wiki/Autism

What Type of Information Is Out There?

• Blogs• http://www.heartsthatfeel.com/2011/05/its-not-what-you-th

ink-it-is.html

• http://dearestoz.wordpress.com/2012/04/02/embracing-the-weird/

• http://theautistartist.com/• http://missmollyandaspergers.blogspot.com.au/2012/05/int

roduction-aspergers-me.html

What Type of Information Is Out There?

• Discussion Forum type pages• http://www.wrongplanet.net/• https://www.facebook.com/

ASPERGERSSUPPORTNETWORK• https://www.facebook.com/aspergersawarenesspage• https://www.facebook.com/AspergersAdultSupport

What Type of Information Is Out There?

• Podcasts• http://www.blogtalkradio.com/autistic-people-• http://www.blogtalkradio.com/autism-womens-network• http://sayitproductions.com/category/aw/• http://thecoffeeklatch.com/blogtalkradio/

What Type of Information Is Out There?

• YouTube• http://www.youtube.com/watch?v=WAfWfsop1e0• http://www.youtube.com/watch?v=3tVEEfOGQhs• http://www.youtube.com/watch?v=5TwFfMv1JU0• http://www.youtube.com/watch?v=7q0tBQPbUD0

What Type of Information Is Out There?

• Autism Consultants• http://www.donnawilliams.net/consultancy.0.html• http://www.autismhangout.com/myhangout/blog.asp?id=7

97&blogid=1452

• http://alysonbeytien.com/about-alyson/• http://sunshineboatright.com/home/services-offered/

What Type of Information Is Out There?

• Books• http://www.amazon.com/Not-My-Boy-Familys-Journey/dp/B

003WUYRMC/ref=sr_1_1?ie=UTF8&qid=1338596926&sr=8-1

• http://www.amazon.com/The-Best-Kind-Different-Aspergers/dp/B004E3XI7G/ref=sr_1_1?s=books&ie=UTF8&qid=1338597144&sr=1-1

• http://www.amazon.com/The-Complete-Guide-Aspergers-Syndrome/dp/1843106698/ref=sr_1_1?s=books&ie=UTF8&qid=1338597183&sr=1-1

• http://www.amazon.com/The-Way-Revised-Expanded-Edition/dp/193527421X/ref=sr_1_1?s=books&ie=UTF8&qid=1338597213&sr=1-1

What Do You See?

• 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 Theory- Confounding Variable(s) (cont.)

• Change Theory• Precontemplation• Contemplation• Preparation• Action• Maintenance

Disability Participation and Disability Orientation

• Disability participation = a person’s access to and engagement with activities

• Disability orientation = a person’s 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

Normalization Disability is undesirable

A lifestyle is similar to non-disabled individuals

Embraces rehab, technology, and support of others

Don’t wish to embrace disability culture

Resignation Disability is undesirable

A lifestyle is similar to non-disabled individuals

Don’t have resources to normalize

Don’t have knowledge to embrace disability culture

Crusader Disability is undesirable

Social inclusion within society

Don’t have resources to normalize

Have knowledge and access to disability culture. Strive to promote social change and inclusion in majority culture.

Affirmation Disability is viewed in positive terms

Society is to recognize disability as a facet of human diversity, not necessarily social inclusion

Don’t wish to normalize. Embrace disability instead.

Have knowledge of and access to disability culture. Take pride in disability and see disability culture as something to celebrate.

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 OT’s do client and/or family education about autism.

• Without this element, our interventions won’t be considered as authentically client centered. (McCormack & Collins, 2012)

My Family and I’s 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 I’s 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

• Don’t 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)

ReferencesAmerican Occupational Therapy Association (2011). AOTA’s 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, 94–104.

ReferencesGriffin, 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), 170-176.

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.

ReferencesSabo, 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), 367-369.

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.