The Accessibility of Community Environmentsfor Adults with Aphasia

Tami Howe, Linda Worrall, & Louise HicksonCommunication Disability in Ageing Research Centre, School of Health & Rehabilitation Sciences

Introduction

• The United Nations (UN) states:

“In all societies of the world there are still obstacles preventing persons

with disabilities from exercising their rights and freedoms and making it difficult for them to participate fully in the activities of their societies. It is the responsibility of States to take appropriate action to remove such obstacles.”1

• ASHA Scope of Practice in Speech Pathology states:

“Speech-language pathologists work to improve quality of life by

reducing…environmental barriers of the individuals they serve.”2

• Many aphasiologists recommend identifying and reducing barriers for clients with aphasia.3,4

• However, what are these barriers and what facilitators are needed to overcome these barriers?

• To date, most research in this area has been on physical disorders.

Results

Examples of Barriers Related to Other People:• Lack of familiarity with other person: “If it was a new doctor,…I’d have to

explain…just too hard”• Other people’s attitudes about them: “Stupid,” “Mentally deranged,”

“Like a child,” “Drunk”

Examples of Physical Barriers:• Objects: “Every one of them (automated teller machines) are different…They’re really

there just to …struffle (stifle).”• Visual aspects: “In the coffee shop…if there’s a lot of movement on the street… more

difficult to concentrate on the conversation…I could cope with anything like that (before the stroke).”

Examples of Societal Barriers:• Procedures: Use of recorded telephone messages in businesses: “Phoning, number

1, number 2, number 3. Hope someone says (hope an operator comes on)…” “If they don’t come…put the phone down and that’s…nothing.”

Examples of Facilitators Related to Other People:• Actions: “(Gets) information out of me so he (bus driver) could produce a ticket… by…

asking questions (when she has difficulties finding words on the bus).”

Examples of Physical Facilitators:• Objects: “I think have the names (of movies) written up on them (on a list right at the

movie ticket counter) would be much better…Then we could see it…We could say it. (If person had difficulties saying the words), well you you say, ‘Number 3.’”

Examples of Societal Facilitators:• Services: “Should have a speech therapist …(present when you are meeting) with your

solicitor. They will make sure that…I am...laying out…the conversation how I want it…like an at atcavat (advocate).”

• Procedures: “Since I’ve had them (the bank manager) put the word ‘stroke’ (on my banking computer file), it’s been easier. Much.”

Results (continued) • Some factors were identified as both a facilitator AND a barrier (e.g. support of other people) • Some participants reported factors related to their physical AND communicative difficulties “Stairs without handrails (is a barrier)”- “Balance is a problem with

aphasia too, isn’t it?”

Method

Participants

• 25 adults with aphasia caused by CVA living in community sampled by maximum variation sampling

Research Paradigm & Design

• Interpretive paradigm with a qualitative descriptive design5

Method of Data Collection

• Semi-structured in-depth interviews with topic guide:

• What places do you go to?• What is it like at these places?• What makes it harder at these places?• What makes it easier at these places? • What places have you stopped going to?/What places would you like to go to?/What stops you?

Method of Data Analysis

• Qualitative content analysis

Societal Barriers

What environmental factors hinder community participation?

Barriers Related to Other People

Physical Barriers

Conclusions

• Wide range of barriers and facilitators identified that policy makers and clinicians may need to consider

• Different from some World Health Organization International Classification of Functioning, Disability, and Health6 (ICF) Environmental Factor codes; Future versions of ICF may need to incorporate these factors

• Data along with findings from a participant observation study will contribute to development of an audit tool (e.g. for banks and government departments)

References 1United Nations (1993). Standard rules on the equalization of opportunities for persons with disabilities. Retrieved December 12/2003 from http://www.un.org/documents/ga/res/48/a48r096.htm; 2American Speech-Language-Hearing Association. (2001). Scope of practice in speech-language pathology. Rockville, MD: American-Speech-Language-Hearing Association; 3Byng, S., Pound,C., & Parr, S. (2000). Living with aphasia: A framework for therapy interventions. In I. Papathanasiou (Ed.), Acquired neurogenic communication disorders: A clinical perspective (pp.49-75). London: Whurr Publishers; 4Chapey, R., Duchan, J.F., Elman, R.J., Garcia, L.J., Kagan, A., Lyon, J.G., & Simmons-Mackie, N. (2001). Life participation approach to aphasia: A statement of values for the future. In R. Chapey (Ed.), Language intervention strategies in aphasia and related neurogenic communication disorders (4th ed., pp. 235-245). New York: Lippincott Williams & Wilkins; 5Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing and Health,23,334-340; 6World Health Organization. (2001). International classification of functioning, disability, and health: ICF. Geneva: World Health Organization.

Acknowledgement: Queensland Government’s Growing the Smart State: A Ph.D. Research Funding Program

Research Questions

1. What environmental factors are perceived by adults with aphasia to hinder participation of people with the communication disorder in the community?

2. What environmental factors are perceived by adults with aphasia to support participation of people with the communication disorder in the community?

Age 34 – 85 years

Gender 15 males/ 10 females

Time post-onset 10 – 137 months

Western Aphasia Battery Aphasia Quotient

34.8 – 92.5

Education 5 – 18 years

Living situation 7 alone/ 18 with others

Current working status compared to pre-aphasia

14 changed/ 11 unchanged

Current driving status compared to pre-aphasia

11 changed/ 14 unchanged

Self-reported presence of moderate or severe physical disorder

13 present/ 12 absent

Self-reported satisfaction with current community participation

14 satisfied/ very satisfied11 unsatisfied/ very unsatisfied

Societal Facilitators

What environmental factors support community participation?

Facilitators Related to Other People

Physical Facilitators