5. Public Awareness of Aphasia
International face-to-face
survey of the public
(Simmons-Mackie et al., 2002)
- England, USA, Australia
- N = 978
- 14% had “heard of aphasia”
- Only 5% had “basic
knowledge of aphasia”
(speech, language, and/or
communication problem &
related to brain damage)
6. Public & Healthcare Awareness of
Aphasia in NZ
(McCann, Tunnicliffe, & Anderson, 2013)
Public Healthcare
- N = 200 (“urban centres
throughout NZ”)
-11% of the public had
awareness of aphasia
-1.5% of the public had
knowledge of aphasia
-estimates lower than that of
Simmons-Mackie et al. (2002)
N = 100 (“healthcare centre at
a metropolitan city hospital”)
-Doctors, nurses, therapists,
pharmacists
-68% in health sector had
awareness of aphasia
-21% met basic knowledge of
aphasia
7. Awareness of Aphasia in
Healthcare
•Murphy (2006) •Taylor (2013)
•focus groups with GP staff &
people with communication
disabilities
•General lack of awareness of
communication difficulties among
GP staff
•Clinical and non-clinical primary
healthcare staff
•68% had heard of aphasia
•20% reported basic knowledge
•33% reported knowing strategies
for communicating with people with
aphasia
Limitations:
•Did not ask for suggestions
•Small sample size (N = 12 PWA;
6 people with learning disability)
Limitations:
•questionnaire not validated or
tested for reliability
8. Aphasia and Access to healthcare
• Barriers to communicative access in
healthcare
• Communicative access to everyday activities
(Aphasia Institute)
9. Current Research Project
What is my study?
“Collaborating with People with Aphasia to
explore perspectives of Primary Healthcare
services”
• Similar to Murphy (2006); Related to Taylor
(2013)
• Rodney Aphasia Group
10. Research questions and
predictions
1) What are the experiences of PWA in primary healthcare?
2) When does communication break-down? What happens?
3) What do they suggest we do to improve services for them?’
Prediction: PWA will have a more negative experience at the GP
because awareness of aphasia is low
11. Focus Groups
• 2 groups; 12-15 participants in total
• Based on Murphy’s (2006)
13. References
• American Speech-Language-Hearing Association. (2009). Treatment efficacy summary:
Cognitive-communication disorders. Retrieved from
http://www.asha.org/uploadedFiles/public/TESCognitiveCommunicationDisordersfromRightHe
misphereBrainDamage.pdf
• Americans with Disabilities Act (ADA). (1990). Americans with Disabilities Act (ADA).
Retrieved from http://www2.ed.gov/about/offices/list/ocr/docs/hq9805.html
• Brown, K., Worrall, L., Davidson, B., & Howe, T. (2011). Living successfully with aphasia:
Family members share their views. Topics in Stroke Rehabilitation, 18(5), 536-548.
• Byng, S., Farrelly, S., Fitzgerald, L., Parr, S., & Ross, S. (2003). Having a say: Involving
people with communication difficulties in decisions about their health care. Retrieved from
http://webarchive.nationalarchives.gov.uk/+/dh.gov.uk/en/policyandguidance/researchandde
velopment/healthinpartnership/thestudies/dh_4127355
• Flynn, L., Cumberland, A., & Marshall J. (2009). Public knowledge about aphasia: A survey
with comparative data. Aphasiology, 23(3), 393-401.
• Kagan, A., & Gailey, G.F. (1993). Functional is not enough: Training conversation partners for
aphasic adults. In A.L. Holland and M.M. Forbes (Eds.), Aphasia treatment: World
perspectives (pp. 199-225). Springer.
• Kagan, A. (1995). Revealing the competence of aphasic adults through conversation: A
challenge to health professionals. Topics in Stroke Rehabilitation, 2(1), 15-28.
• Kagan, A. (1998). Supported conversation for adults with aphasia: Methods and resources for
training conversation partners. Aphasiology, 12(9), 816-830.
14. References
• Le Dorze, G., & Brassard, C. (1995). A description of the consequences of aphasia on aphasic
persons and their relatives and friends, based on the WHO model of chronic diseases.
Aphasiology, 9(3), 239-255.
• Le Dorze, G., Tremblay, V., & Croteau, C. (2009). A qualitative longitudinal case study of a
daughter’s adaptation process to her father’s aphasia and stroke. Aphasiology, 23(4), 483-
502.
• Legg, C., Young, L., & Bryer, A (2005). Training sixth-year medical students in obtaining
case-history information from adults with aphasia. Aphasiology, 19(6), 559-575.
• McCann, C., Tunnicliffe, C., & Anderson, R. (2013). Public awareness of aphasia in New
Zealand. Aphasiology, 27(5), 568-580.
• Murphy, J. (2006). Perceptions of communication between people with communication
disability and general practice staff. Health Expectations, 9(1), 49-55.
• O’Connor, K., & McCann, C. (2010). The effectiveness of conversation training for general
practitioners when consulting with a person with aphasia: A single case pilot study. New
Zealand Journal of Speech-Language Therapy, 65, 41-54.
• Royal College of Speech & Language Therapists. (2009). Resource manual for commissioning
and planning services for SLCN. Retrieved from
http://www.rcslt.org/speech_and_language_therapy/commissioning/aphasia_plus_intro
• Simmons-Mackie, N.N., Code, C., Armstrong, E., Stiegler, L., & Elman, R.J. (2002). What is
aphasia? Results of an international survey. Aphasiology, 16(8), 837-848.
15. References
• Simmons-Mackie, N.N., Kagan, A., O’Neill, C.C., Huijbregts, M., McEwen S., & Willems, J.
(2007). Communicative access and decisions making for people with aphasia: Implementing
sustainable healthcare systems change. Aphasiology, 21(1), 39-66.
• Stroke Foundation of New Zealand. (2013). Facts about stroke in New Zealand. Retrieved
from http://www.stroke.org.nz/node/16
• Taylor, R. (2013). Perspectives of primary healthcare teams of aphasia and services available
to people with aphasia: Results of a New Zealand questionnaire (Unpublished master’s
thesis). The University of Auckland, Auckland, New Zealand.
• http://www.claiminghumanrights.org/unesco.html
• World Health Organization [WHO]. (2008). Primary health care: Now more than ever.
Retrieved from http://www.who.int/whr/2008/whr08_en.pdf
Editor's Notes
My presentation is entitled, ‘perspectives, people with aphasia, and, general practice’.
- “The opportunity to communicate is a basic human right”. This is a quote from the website of the International Communication Project.
In 1978, UNESCO stated that communication is a human right (along with education, science and culture).
Communication is a means of expressing ourselves and connecting with others.
People with aphasia can be less effective and efficient at communicating with others... Those with severe forms of aphasia may feel that their ‘right’ to communicate has been taken away from them it’s so hard to convey their thoughts
PWA may experience restrictions in their communication. Common communication restrictions faced by people with aphasia are:
Talking on the phone
watching tv
writing a grocery list
and talking to the GP
Going to the GP is an important part of life. General practice (or primary healthcare) is usually the first port of call when you have concerns about your health; for most people, it’s the first place you go to when you need medical advice.
People with aphasia often struggle to tell the GP their health problems.
I’ll now show you an example of the difficulties a person with aphasia may face when visiting the GP (play from 18:20 – play 1-2 minutes of the bad one).
The man with aphasia is called Gerry. He was 60-years-old in that video. He had aphasia for almost 35 years. Sadly, he passed away recently.
He indirectly affected the lives of many people with aphasia by appearing in this video and raising the awareness of the difficulties they face.
- Unfortunately, the awareness of aphasia is low in the public and in healthcare.
Simmons-Mackie and colleagues conducted an international survey in 2002. They approached people in public places in England, the states, and Australia.
They found that 14% of the participants had “heard of aphasia” (answer is a simple yes/no)
From this survey, they found that only 5% had ‘basic knowledge of aphasia’
A yes/no/not sure from a list of statements, supposedly about aphasia. E.g. “trouble with speech or pronunciation” and “trouble with thinking or intelligence”.
The researchers classified someone as having ‘basic knowledge if aphasia’ of they selected ‘speech’, ‘language’ and/or communication problems, and identified that aphasia is related to brain damage (e.g. stroke)
McCann et al. (2013) replicated the survey by Simmons-Mackie et al. (2002) and they sought to do this in a NZ context. They also included healthcare members in the survey.
Same survey questions as Simmons-Mackie et al. (2002)
(As with Simmons-Mackie et al) McCann et al. conducted quick face-to-face surveys with members of the public in 6 “urban centres” throughout NZ.
McCann and colleagues scored the survey by giving 1 score for every correct answer, and deducting 1 score for every incorrect answer. If the answer was ‘not sure’, there was no change to the score => ADEQUATE knowledge was when at least half of the descriptors were correct.
These estimates were lower than that of Simmons-Mackie et al for both awareness of aphasia and basic knowledge of aphasia.
A study by Murphy in 2006 found that there was a general lack of awareness of communication difficulties among GP staff.
GP staff also admitted to relying on communication with the carer instead of talking to the person with comm. difficulties directly – this is concerning as the people with communication and intellectual disabilities object to this
no probe for suggestions – what do people with communication disabilities suggest we can do to improve their experiences at the GP?
Taylor (2013) conducted a survey and found that 68 % of clinical and non-clinical staff had heard of aphasia
while only 20% reported basic knowledge of the expression and comprehension language difficulties observed in aphasia.
33% reported knowing appropriate strategies for communicating with people with aphasia, but Taylor’s study/research project didn’t report what these strategies were.
primary healthcare = professional care received in the community; health promotion; disease prevention (WHO, 1978)
Not surprisingly, people with aphasia often experience barriers to communicative access in healthcare. This means that they have difficulty receiving relevant healthcare information and conveying messages.
Communicative access is also related to the two-way transaction of information and making educated decisions.
The Aphasia Institute has stated that people with aphasia should always have communicative access to everyday activities.
And going to the GP is an everyday activity, especially for people who have had a medical event such as PWA.
My research project is called ‘collaborating with people with aphasia to explore their perspectives of primary healthcare services’
Murphy (2006) is currently the sole study to explore the perspectives of people with communication difficulties in primary healthcare. They recruited people with aphasia and people with intellectual difficulties.
I’d like to do a similar study but use a more specific population (PWA).
My study is related to Taylor’s study about awareness of aphasia in primary healthcare settings as they found that the awareness of aphasia is relatively low among clinical and non-clinical GP staff. I’d like to see how this low awareness impacts on the experiences of PWA at the GP.
I plan to recruit from the Rodney Aphasia Group – I’m attending a meeting tomorrow to pitch this project and hopefully recruit some participants.
