Adapted Email for Individuals with Cognitive Disabilities: A Longitudinal Report

1
Adapted Email for Individuals with Cognitive
DisabilitiesA Longitudinal Report

• Laurie Ehlhardt, Ph.D.
• The Teaching Research Institute
• McKay Sohlberg, Ph.D.
• University of Oregon

2
Presentation Goals

• To share research results showing how email can
  be used to facilitate social communication
  
• To inspire clinicians to identify how they might
  use electronic communication modalities with
  their own caseload.

3
Scope of Practice in Speech Language Pathology
(ASHA, 2001)

• The overall objective of speech-language
  pathology services is to optimize individuals
  ability to communicate and/or swallow in natural
  environments, and thus improve their quality of
  life. This objective is best achieved through the
  provision of integrated services in meaningful
  life contexts.

4
The World Health Organization ICF

• Provides guiding principles for assessment and
  treatment
  
• ICF website
• http//www3.who.int/icf
• includes the full ICF as well as an introduction
  and beginners guide

5
The ICF Framework

• Part I functioning and disability
• body function/structure
• ( e.g., speech-language, hearing, swallowing,
  cognitive impairments)
  
• activities/participation
• (e.g., cant talk on the phone no longer
  participates in family decision making)

6
The ICF Framework

• Part II contextual factors
• environmental factors
• (e.g., physical barriers to access others
  perceptions/reactions)
  
• personal factors
• life background and features not related to
  health
  
• (e.g., personality characteristics)
• not classified in the ICF

7
Examples of treatment programs with documented
social participation outcomes

• Weekly Support Groups
• Elman, R. Bernstein-Ellis. E (1999b).
  Psychosocial aspects of group communication
  treatment Preliminary findings. Seminars in
  Speech and Language, 20(1), 65-72.
• Residential-Stroke Camp
• Fox, L.E., Ginley, S., Poulsen, S. (2004). A
  Residential Approach to Conversational
  Intervention. Special Interest Division 2
  Newsletter Neurophysiology and Neurogenic Speech
  and Language Disorders, 14 (4), 4-10.
• School-based
• Glang, A., Todis, B., Cooley, E., Wells, J.,
  Voss, J. (1997). Building social networks for
  children and adolescents with ABI A school-based
  intervention. Journal of Head Trauma
  Rehabilitation, 12 (2), 32-47.

8
Examples of treatment programs with documented
social participation outcomes

• Community
• Lyon, J., et al. (1997). Communication Partners
  enhancing participation in life and communication
  for adults with aphasia in natural settings,
  Aphasiology,11(7), 693-708.
• Email
• Sohlberg, M. M., Fickas, S., Ehlhardt, L.,
  Todis, B (2005). The longitudinal effects of
  accessible email for individuals with severe
  cognitive impairments. Aphasiology, 19(7), 651-81.

9
Why email?

• 72 million adults on-line email most common
  activity (Pew Internet Study, 2004)
  
• Time to think about what to say
• Time to edit
• Can use it anytime
• Member of the digital society
• Social connection

10
Challenges for individuals with severe
cognitive-linguistic impairments

• Commonly used email programs are not universally
  designed (e.g., OutLook, Hotmail)
  
• Difficult to learn
• Difficult to remember all the commands
• Too many distracting items on the screen
• Typing addresses is tedious
• Not safe (scams, viruses, etc.)
• (Elman, 2001 Sohlberg et al, 2003)

11
(No Transcript)
12
Think-and-Link/CogLinkProject Description

• National Institute on Disability and
  Rehabilitation Research
  
• Oct 2001 Sept 2006
• Collaboration between the participants with
  cognitive disabilities and researchers in
  cognitive rehabilitation and computer science
  
• Goal To modify email for people with cognitive
  disabilities resulting from brain injury in order
  to successfully access this technology

13
Research Questions

• Research questions included
• Can people with severe cognitive impairments
  learn to email independently using an adapted
  interface?
  
• What types of supports are needed to maintain
  long-term use of email?
  
• What, if any, are the psychosocial effects of
  long-term email participation?

14
Methodology-Overview

• Focus groups longitudinal-case study
  single-subject designs
  
• 10 adult participants (23-65 yrs) with
  moderate-severe cognitive impairments due to ABI
  
  
• primarily memory and executive function
  impairments basic reading/writing intact
  
• At least 1 year post
• No prior computer/email experience or attempted
  use but abandoned
  
• Socially isolated unemployed
• (4 participants described in detail in Sohlberg
  et al, 2005)

15
Basic Features
Base interface forces users to reply to email and
utilizes only a Send button.
16
Additional Features
Additional features may be added to the system
interface at anytime and in any combination.
Archive of old email
Save message for later
Delete message
Export message to Windows folder for printing
17
(No Transcript)
18
(No Transcript)
19
(No Transcript)
20
Outcomes-Research Question 1Learning the email
program

• All participants learned to use the email program
  and became more proficient users over time.
  
• However, participants required systematic,
  explicit training BEFORE starting to use email.
  
• Automated email training program developed based
  on direct instructional principles
  
• (Ehlhardt et al 2005)

21
Automated Training
22
Automated Training
23
Automated Training
24
Email How to design instruction

• First Evaluate/train pre-requisite skills (e.g.,
  mouse, basic keyboarding)
  
• Then
• Prioritize training email procedures from simple
  to complex (e.g., read-reply to short message
  read-reply to long email that requires
  scrolling).
• Develop task analysis for email procedure.
• Develop multiple training messages and a system
  for delivering these messages.

25
EmailHow to deliver instruction

• Chaining procedure 1-2 steps at a time, chain to
  previous steps
  
• Model step(s) 2-3x
• High amounts of correct, distributed practice.
• Ehlhardt, L.A., Sohlberg, M.M., Glang, A.,
  Albin, R. (2005) TEACH-M A pilot study
  evaluating an instructional sequence for persons
  with impaired memory and executive functions.
  Brain Injury, 19 (8), 569-584.

26
Longitudinal Data following 11 training
27
Longitudinal Data following 11 training
28
ApplicationSo, you have a socially-isolated
client who would like to learn email?

• Profile
• 63 year old female 1-yr post TBI language
  visual-motor skills intact mild-moderate memory
  impairments could potentially use regular
  email never used email, but has used computer
  mouse keyboard for games, letter composition.
• Design of instruction
• What email procedure/task will you start with?
• What are the steps in the task (i.e., task
  analysis)?
  
• How many training examples will you have and how
  will you deliver these?

29
ApplicationSo, you have a client who would like
to learn email?

• Delivery of instruction
• What will a typical training session look like?
  (beginning, middle, end)
  
• What will you do to keep mistakes to a minimum?
• What is a minimum number of practice trials per
  step/step sequence?
  
• What will you do if the client makes a mistake?
• Lets say the client consistently gets Steps 1-3
  correct but misses Step 4, what will you do?

30
Outcomes-Research Question 2Our showstoppers!

• Technical support
• (e.g., setting up email program, modifications
  to program, system updates, troubleshooting)
  
• Building community support
• (e.g., contacting email partners training
  volunteer email partners)

31
Technical Support

• Support person (e.g., caregiver, family member)
• 1-800 number
• Email HelpDesk
• Staffed by a technology
• person who knows
• brain injury

32
Common Technical Problems

• Internet Connectivity
• Client modem router (50)
• ISP problem
• Hardware
• Needs help using hardware
• Malfunctioning hardware (all house calls)
• Software
• Request of feature or interface change (30)
• Reporting a malfunction/bug

33
Tech Data

• HelpDesk Ticket System came online September
  2005.
  
• In 9 month period 47 tech support initiations
• 38 Phone calls
• 9 Email messages (customer using helpdesk email
  buddy)
  
• 6 House calls (ISP or malfunctioning hardware
  related)

34
Building Email Community

• Identify clients goals centered around building
  email community (e.g., reunite with estranged
  daughter participation in an advisory board)
  
• Cultivate/contact with this community of email
  partners (e.g., email address, phone,
  background)
  
• Provide education/coaching on appropriate
  content/length of emails to client
  
• Regular check-ins with partners

35
Building CogLink Email Community

• Participant-selected friends, family, caregivers
• High school volunteer email partner program
• The Daily Gazette question of the day
• CogBlog

36
Outcomes-Research Question 3Psychosocial effects

• All participants reported increased social
  connectedness with their email partners some
  also reported increased self-esteem.
  
• Many achieved their more than expected level of
  success on their Goal Attainment Scale
  
• (Sohlberg et al, 2005)

37
Goal Attainment Scaling (GAS)

• Most disappointing outcome
• Less than level of expected success
• Expected level of Success
• More than expected level of success
• Most successful outcome
• Malec, J. (1999). Goal attainment scaling in
  rehabilitation. Neuropsychological
  Rehabilitation, 9 (3-4), 253-275.

38
Dereks GoalsI want to feel more connected with
my e-mail partners, particularly my son

• Most disappointing outcome
• Responses to my emails will be negative. They
  will hate what I say.
  
• Less than expected level of success
• Email will be mostly superficial.
• Expected level of Success
• Sharing meaningful content with at least one
  person.
  
• More than expected level of success
• Sharing meaningful content with at least one
  friend and one family member.
  
• Most successful outcome ACHIEVED
• I want to feel like Im sharing interesting
  information with everyone, especially my son.

39
Dereks Goals (cont.)I want to expand my list
of email partners.

• Most disappointing outcome
• I will not be able to establish email with the
  five people on the list
  
• Less than expected level of success
• I would only email the five people you have
  contacted.
  
• Expected level of Success
• I will have a couple more partners besides those
  on the list
  
• More than expected level of success
• I will double the number of partners on the list
  
  
• Most successful outcome ACHIEVED
• I will more than double the number of partners on
  the list.

40
Derek-Partner Survey

• Yes. I think several positive things have
  happened. Dereks spelling and grammar have
  improved since we began the program. He
  frequently talked about suicide when we first
  began and he hasn't mentioned it in a long time.
  We have both had fun remembering things about our
  common father that have been so amusing. I was a
  toddler when Derek was a teen. He tells me
  stories about Dad that occurred sometime before I
  was born and I tell him stories about Dad way
  after Derek and his other brother had left home.
  I think sharing such stories has helped Derek's
  memory. Finally, I get the feeling that this
  project has done a lot for Derek's self esteem
  (hard to describe that one).

41
Dereks Impressions

• Thank you very much for this opportunity for the
  last few years of exploration, through the "Think
  Link" project. It has and still does help the
  return of an ability to speak, and use a
  dictionary.
• Aphasia can be difficult, and can also be a way
  of finding new paths through E-Mail.
  
• I feel very much closer to my email partners, not
  only to them, but to the general public in a way.
  

42
Summary

• Email is an activity that can lead to increased
  social participation.
  
• Systematic instruction is critical for learning
  to email.
  
• Comprehensive support (technical/community
  building) is essential for maintaining email use.

43
Application

• Think about how email can be used in your
  clinical setting
  
• Outpatient/residential to communicate with
  friends, family, staff
  
• Inpatient (ST, OT, PT as partners)
  evaluative-therapeutic tool e.g.,
  reading/writing assessment clinician-delivered
  prompts to complete therapy tasks, such as range
  of motions exercises
• Fill out attached worksheet

44
Future Research

• Stepping Stones TeenMail (NIDRR 10/1/06)
  evaluating CogLink email with adolescents with
  TBI
  
• SBIR Why Go it Alone? (NIDRR 10/1/06)
  evaluating CogLink loaded onto an adapted USB
  drive for use in public settings

45
Resource List

• AbleLink
• www.ablelinktech.com/_desktop/webtrekconnect.asp
  
• Egan, Worrall, Oxenham (2005). An Internet
  training intervention for people with traumatic
  brain injury Barriers and outcomes, Brain
  Injury, 19 (8), 555-568.
• Egan, Worrall, Oxenham (2004). Accessible
  Internet training package helps people with
  aphasia cross the digital divide. Aphasiology,
  18(3), 265-280. www.shrs.uq.edu.au/cdaru/aphasiagr
  oups

46
Resource List

• Linebarger, Schwartz, Kantner, McCall (2002).
  Promoting access to the Internet in aphasia,
  Brain and Language, 83, 169-172.
  
• www.sentenceshaper.com
• Sohlberg, Fickas, Ehlhardt, Todis (2005).
  CogLink.
  
• www.coglink.com

47
THANK YOU!!!!

• For more information, contact
• Laurie Ehlhardt
• ehlhardtl_at_wou.edu
• McKay Moore Sohlberg
• mckay_at_uoregon.edu
• Toll free number
• 1-800-716-9695