The effects of communication intervention during mealtime in Rett syndrome

1
The effects of communication intervention during
mealtime in Rett syndrome

• Theresa Bartolotta PhD CCC-SLP
• Kean University, Union NJ
• Patricia Remshifski MS CCC-SLP
• Seton Hall University, So Orange, NJ
• Abra Laznovsky BS
• Kean University, Union, NJ

2
What is Rett syndrome?

• Rett syndrome (RS)
• A neurodevelopmental disorder
• Affects primarily females
• (Amir Zoghbi, 2000 Cass et al., 2003)
• Cause - mutation in MeCP2 gene on X chromosome
  gene critical in brain development
• (Amir Zoghbi, 2000)
• Incidence 110,000 - 123,000 births
• (International Rett Syndrome Association, 2006)

3
Characteristics of RS

• Common features
• Severe to profound cognitive impairment and motor
  impairment apraxia
• Typically nonverbal
• Limited use of alternate communication modalities
  gestures, sign, symbol systems
• Nonfunctional hand use
• (Ellaway Christodoulou, 2001 Johnston,
  Mullaney Blue, 2003 Koppenhaver, Erickson
  Skotko, 2001)

4
New research

• Improved awareness leading to accurate
  diagnosis of girls with RS
• Displaying a range of abilities in cognition,
  motor communication
• (Johnston et al., 2003)
• Girls with RS capable of
• intentional communication using a variety of
  strategies
• (Bartolotta, 2005 Hetzroni et al., 2002 Skotko
  et al., 2004)

5
Communication partners interpret meaning

• Individuals with severe disabilities rely on
  communication partners for successful interaction
• Partner uses inferences intuition to give
  meaning to signals
• (Grove et al., 1999)
• Girls with RS are reported to use the following
  behaviors to signal meaning
• Vocalizations, head body movements, gestures,
  facial expressions, eye gaze, AAC devices
• (Bartolotta, 2005 Ryan et al., 2004)

6
Hypothesis

• Training feeders to recognize behaviors produced
  by girls with RS as communicative will have the
  following effects
• Girls will produce more bids for communication
• Feeders will be more responsive to the behaviors
  produced by the girls

7
Method

• Single-subject design
• replicated across 4 girls with RS and their
  feeders at mealtime in school
• 4 part intervention study
• Pre-intervention
• Intervention
• Post-intervention
• Maintenance
• Sessions videotaped during pre-intervention,
  post-intervention maintenance
• Participants
• 4 girls with RS between the ages of 5-15 years
• Eat by mouth
• Medically stable

8
Pre-intervention phase

• Videotaped typical mealtime at school with feeder
  girl with RS
• Reviewed tapes and identified behaviors produced
  by girls that were
• Potentially communicative
• Acknowledged by the feeder as communicative
• Developed a training protocol for each dyad that
  included strategies to improve communication

9
Individualized training protocol

• Strategies
• Attribute meaning to girls behavior even if
  meaning was unclear/uncertain
• Provide sufficient wait time support after
  asking a question
• Consistently ask questions provide comments
  during a meal
• Using available AAC techniques

10
Intervention Phase

• Met individually with each feeder
• Reviewed pre-intervention videotape with the
  feeder
• Introduced individualized training protocol
• Reviewed protocol and provided examples for
  implementation of strategies

11
Post-Intervention Maintenance

• Post-Intervention Phase
• Returned to school 2 weeks post-intervention to
  videotape a typical mealtime
• Maintenance Phase
• Returned 4 weeks later (6 weeks
  post-intervention) to videotape a mealtime

12
Data analysis

• Transcribed videotapes
• Middle 10 minutes of each mealtime were used for
  analysis
• Coded videotapes separately using operational
  definitions
• Consensus reached for any disagreements

13
Coding of behaviors Operational definitions

• Student bid requires a response from the feeder
• Feeder bid requires a response from the student
• Student response produced in response to a
  feeder bid
• Feeder response produced in response to student
  bid/acknowledgement of student response
• No response required rhetorical questions,
  statements, comments or encouragers
• (Adapted from Ryan et al., 2004)

14
Results

• Student bids for communication increased for all
  girls
• All feeders produced increased responses to the
  girls
• Feeder comments that did not require a response
  from the girls decreased for 2 dyads increased
  for 2 dyads
• Student responses increased for 3 of the girls
  and decreased for 1
• Feeder bids increased for 2 dyads and decreased
  for 2 dyads

15
(No Transcript)
16
(No Transcript)
17
(No Transcript)
18
So What?

• Feeders can be trained to recognize bids for
  communication by girls with RS
• Girls with RS can initiate communication
• Feeders will respond to communication bids as a
  result of training
• Future research directions
• Replicate study with larger sample using a
  control group
• Provide intervention in other settings with other
  partners
• Home, classroom
• Explore ways to document communicative behaviors
  over time to improve the evidence for
  communicative intent in RS

19
References

• Amir, R.E. Zoghbi, H.Y. (2000). Rett syndrome
  Methyl-CpG-binding protein 2 mutations and
  phenotype-genotype correlations. American Journal
  of Medical Genetics, 97,147-152.
• Bartolotta, T. (2005). Communication skills in
  girls with Rett syndrome Perceptions of parents
  and professionals. Unpublished doctoral
  dissertation. Seton Hall University, South
  Orange, NJ.
• Cass, H., Reilly, S., Owen, L., Wisbeach, A.
  (2003). Findings from a multidisciplinary
  clinical case series of females with Rett
  syndrome. Developmental Medicine and Child
  Neurology, 45(5), 325-337.
• Ellaway, C., Christodoulou, J. (2001). Rett
  syndrome Clinical characteristics and recent
  genetic advances. Disability and Rehabilitation,
  23(3/4), 98-106.
• Grove, N., Bunning, K., Porter, J., Olsson, C.
  (1999). See what I mean? Interpreting the meaning
  of communication by people with severe and
  profound intellectual impairment. Journal of
  Applied Research in Intellectual Disabilities,
  12(3), 190-203
• International Rett Syndrome Association. (2006).
  RS Facts. Retrieved 11/04/2006 from
  http//www.rettsyndrome.org/content.asp?pl147con
  tentid447
• Johnston, M.V., Mullaney, B. Blue, M.E. (2003).
  Neurobiology of Rett syndrome. Journal of
  Clinical Neurology, 18(10), 688-692.

20
References

• Koppenhaver, D.A., Erickson, K.A., Skotko, B.G.
  (2001). Supporting communication of girls with
  Rett syndrome and their mothers in storybook
  reading. International Journal of Disability,
  Development and Education, 48(4), 395-410.
• Hetzroni, O., Rubin, C., Konkol, O. (2002). The
  use of assistive technology for symbol
  identification by children with Rett syndrome.
  Journal of Intellectual and Developmental
  Disability, 27(1), 57-71.
• Ryan, D., McGregor, F., Akermanis, M., Southwell,
  K., Ramke, M. Woodyatt, G. (2004). Facilitating
  communication in children with multiple
  disabilities Three case studies of girls with
  Rett syndrome. Disability and Rehabilitation, 26
  (21/22), 1268-1277.
• Sandberg, A.D., Ehlers, S., Hagberg, B.,
  Gilberg, C. (2000). The Rett syndrome complex
  communicative functions in relations to
  developmental and autistic features. Autism The
  International Journal of Research and Practice,
  4(3), 249-267.
• Skotko, B.G., Koppenhaver, D.A., Erickson, K.A.
  (2004). Parent reading behaviors and
  communication outcomes in Rett syndrome.
  Exceptional Children, 70(2), 1-22.