COLLEGE OF HEALTH & HUMAN SCIENCES DEPARTMENT OF … Strengthening Goal Directed Behaviour Ad… · ----6 trials post6 trials post6 trials post- ---switchswitch----12 trials border

COLLEGE OF HEALTH & HUMAN SCIENCES DEPARTMENT OF HUMAN DEVELOPMENT AND FAMILY STUDIES

STRENGTHENING GOAL-DIRECTED

BEHAVIOUR FOR ADULTS WITH DS

IN POST-SECONDARY SETTINGS

DEBORAH J FIDLER, PHD

COLORADO STATE UNIVERSITY

FUTURE DIRECTIONS FOR CHHS:

BEHAVIORAL PHENOTYPES IN NEUROGENETIC SYNDROMES

BEHAVIORAL PHENOTYPES IN NEUROGENETIC SYNDROMES

Behavioral OutcomesBehavioral OutcomesBehavioral OutcomesBehavioral Outcomes(Cognitive, Linguistic, Social, Emotional,

Psychopathology, Motor)

Down syndrome

BEHAVIORAL PHENOTYPES

Syndrome Etiology Phenotype

Down syndrome Trisomy 21 Moderate ID, social strength, language deficits,

visual >verbal processing

Williams syndrome 7q deletion Moderate ID, outgoing, sociable, fears, anxiety,

verbal strengths, poor visual spatial

Prader-Willi syndrome 15q deletion

(paternal)

Mild ID, hyperphagia, hoarding, compulsive

behavior, tantrums, skin picking,

simultaneous>sequential processing

Smith-Magenis

syndrome

17p deletion Moderate-severe ID, self-injury, hyperactivity,

stereotypies, sleep disturbances

5p- syndrome deletion 5p Severe ID, atypical cry, hyperactivity, stereotypies,

self-injury

DOWN SYNDROME BEHAVIORAL PHENOTYPE

• Expressive Language

• Verbal Processing

• Motor Development

• SelfSelfSelfSelf----regulationregulationregulationregulation

– Goal-Directed Behavior

– Executive Function

Relative challenges:

Relative strengths:

• Receptive Language

• Visual processing

• Social Relatedness*

OVERVIEW OF DD LAB PROJECTS


EXECUTIVE FUNCTION IN

DOWN SYNDROME

FUNDED BY U.S. DEPARTMENT OF EDUCATION,

NATIONAL INSTITUTE FOR DISABILITY AND

REHABILITATION RESEARCH (H133G100197)

FUNDED BY U.S. DEPARTMENT OF EDUCATION,

INSTITUTE OF EDUCATIONAL SCIENCE, SPECIAL

EDUCATION RESEARCH GRANTS (R324A110136)

EXECUTIVE FUNCTION

Cognitive Cognitive Cognitive Cognitive

Processes Processes Processes Processes

integral to integral to integral to integral to

adaptive and adaptive and adaptive and adaptive and

goal directed goal directed goal directed goal directed

behaviorbehaviorbehaviorbehavior Working Memory, Inhibitory Control,

Cognitive Flexibility (Shifting), and

Planning

EXECUTIVE FUNCTION: COMPONENT PROCESSES

Working MemoryWorking MemoryWorking MemoryWorking Memory

Inhibitory ControlInhibitory ControlInhibitory ControlInhibitory Control

Cognitive FlexibilityCognitive FlexibilityCognitive FlexibilityCognitive Flexibility

PlanningPlanningPlanningPlanning

Holding and manipulating

information while completing a

task

Control of pre-potent

responses

Ability to modify thinking

and/or strategies across

contexts

Means-end behavior reliant on

some or all of the other

constructs

Will, Fidler, Daunhauer, & Gerlach-McDonald (2017)

Ex: MultiEx: MultiEx: MultiEx: Multi----step step step step

Instructions Instructions Instructions Instructions

Ex: Raising Ex: Raising Ex: Raising Ex: Raising

HandHandHandHand

Ex: Changing Ex: Changing Ex: Changing Ex: Changing

behavior based behavior based behavior based behavior based

on settingon settingon settingon setting

Ex: Ex: Ex: Ex: morning morning morning morning

routines, routes routines, routes routines, routes routines, routes

to workto workto workto work

EXECUTIVE FUNCTION

Executive Executive Executive Executive

Function Function Function Function

Adaptive Adaptive Adaptive Adaptive

BehaviorBehaviorBehaviorBehavior

Social SkillsSocial SkillsSocial SkillsSocial Skills

Academic Academic Academic Academic

AchievementAchievementAchievementAchievement

Academic Academic Academic Academic

ReadinessReadinessReadinessReadiness

Health Health Health Health

OutcomesOutcomesOutcomesOutcomes

(Blair & Razza, 2007; Bornstein et al., 2013; Diamond et al., 2007; McClelland et al., 2000; 2007; Riggs,

2012)

EF MEASUREMENT

Proxy Report

Laboratory

Assessment

PARENT BRIEF-P REPORTS:

% CLINICALLY ELEVATED [T SCORE > 65]Perc

enta

ge

BRIEF-P Domains

Total Indexes Scales

BRIEF-P: ↑ scores, ↑ EF symptoms

* * *

*

EF RESEARCH I: LABORATORY BASED MEASURES

WORKING MEMORY/INHIBITION

----Form of Simon Says

-Child must remember

rule to respond correctly

-Language check

-4 practice trials

-10 experimental trials

-Coding : Total correct

responses

-Kappa M=.89; .62-1.0

Pony & GatorPony & GatorPony & GatorPony & Gator

INHIBITORY CONTROL

-Snack placed under

cup

-Retrieve snack when

bell rung

-4 trials:

-5-, 10-, 15-, 20-s

-Coding : Total

disinhibited behaviors

-Kappa M=.78; .61-.94

Snack DelaySnack DelaySnack DelaySnack Delay

COGNITIVE FLEXIBILITY/SHIFTING

----Cards sorted on what shape Cards sorted on what shape Cards sorted on what shape Cards sorted on what shape

dimensiondimensiondimensiondimension

----1 practice1 practice1 practice1 practice

----6 trials first rule6 trials first rule6 trials first rule6 trials first rule

----Rule is changedRule is changedRule is changedRule is changed

----6 trials post6 trials post6 trials post6 trials post----switchswitchswitchswitch

----12 trials border version12 trials border version12 trials border version12 trials border version

----Coding : Total correct Coding : Total correct Coding : Total correct Coding : Total correct

responsesresponsesresponsesresponses

----Kappa Kappa Kappa Kappa MMMM=.85; .64=.85; .64=.85; .64=.85; .64----1.01.01.01.0

DCCSDCCSDCCSDCCS

PLANNING

-Children are told Here

are some toys for you

-Play with unusual

group of objects

-2 minutes

-Coding : Total new

objects explored; total

functional acts

-Kappa M=.77; .63-1.0

GenerativityGenerativityGenerativityGenerativity

METHODS

N = 42N = 42N = 42N = 42NVMA=49.98 NVMA=49.98 NVMA=49.98 NVMA=49.98 mosmosmosmos

CA=91.07 CA=91.07 CA=91.07 CA=91.07 mosmosmosmos

N = 38N = 38N = 38N = 38NVMA= 50 NVMA= 50 NVMA= 50 NVMA= 50 mosmosmosmos

CA= 40.52 CA= 40.52 CA= 40.52 CA= 40.52 mosmosmosmos

DSDSDSDS TDTDTDTD

Daunhauer, Gerlach-McDonald, Will & Fidler (2017)

LABORATORY MEASURES OF EF

DSDSDSDS

n= 42n= 42n= 42n= 42

TDTDTDTD

n= 38n= 38n= 38n= 38

M (SD) M (SD)

Raw Score Z-Score Raw Score Z-Score p

Working Working Working Working

memorymemorymemorymemory 5.81(2.17) -.29(.83) 7.16(2.39) .23(.92) .05

InhibitionInhibitionInhibitionInhibition .76(1.26) .14(1.10) .23(.77) -.33(.68) .131

Shifting Shifting Shifting Shifting .495(.44) -.06(1.0) .68(.42) .35(.97) .163

Planning Planning Planning Planning 5.10(2.41) -.18(.78) 7.0(3.0) .43(.97) .01

OVERVIEW OF DD LAB PROJECTS

How does the emerging EF profile in DS impact

adaptation and achievement in home and

community settings?

What are the implications for intervention?

EXECUTIVE FUNCTION

EF and EF and EF and EF and

Functional Functional Functional Functional

PerformancePerformancePerformancePerformance

Daunhauer, Gerlach-McDonald, Will

& Fidler (2017)

EF AND FUNCTIONAL PERFORMANCE

Functional Performance:

The self-care, mobility, and social function that one needs in order to be effective in their daily environment

METHODS

DS DS DS DS = = = = 30303030NVMANVMANVMANVMA= 49.98 = 49.98 = 49.98 = 49.98 mosmosmosmos

CACACACA= 91.07 = 91.07 = 91.07 = 91.07 mosmosmosmos

ParticipantsParticipantsParticipantsParticipants


LeiterLeiterLeiterLeiter----RRRR

PEDI PEDI PEDI PEDI ((((The Pediatric Evaluation of The Pediatric Evaluation of The Pediatric Evaluation of The Pediatric Evaluation of

Disability Disability Disability Disability Inventory (PEDI; Haley, Inventory (PEDI; Haley, Inventory (PEDI; Haley, Inventory (PEDI; Haley,

et et et et al., al., al., al., 1992)1992)1992)1992)

EF BatteryEF BatteryEF BatteryEF Battery

BRIEFBRIEFBRIEFBRIEF----PPPP

MeasuresMeasuresMeasuresMeasures

FINDINGS: EF AND FUNCTIONAL PERFORMANCE

Self-Care (PEDI)

Planning Planning Planning Planning ((((Generativity)Generativity)Generativity)Generativity)

Working Working Working Working MemoryMemoryMemoryMemory(BRIEF(BRIEF(BRIEF(BRIEF----P)P)P)P)

F (3, 27) = 4.41; p = .012; R2 = .25


EXECUTIVE FUNCTION

EF and EF and EF and EF and

School Function School Function School Function School Function

Daunhauer, Fidler, & Will (2014)

WHAT IS SCHOOL FUNCTION?

A student’s ability to perform

important functional

activities that support or

enable participation in the

academic and related social

aspects of an educational

program (Coster et al., 1998, p. 2)

SCHOOL FUNCTION

Coster et al., 1998

using school-related

materials appropriately

requesting assistance when needed the ability to move around the school

environment independently

ability to manage

self-care and

personal needs

SCHOOL FUNCTION

School function and academic

aspects of schooling are

different

School function skills enable

students to engage in

academic activities without

assistance or

accommodations

Which factors are important for

competent school function in DS?

SCHOOL FUNCTION

To identify school function profile in

primary school-aged students with Down

syndrome

Predictors of School Function Outcomes:

• Language

• IQ

• Executive Function

FUNDED BY U.S.

DEPARTMENT OF

EDUCATION, NATIONAL

INSTITUTE FOR DISABILITY

AND REHABILITATION

RESEARCH (H133G100197)

FUNDED BY U.S.

DEPARTMENT OF

EDUCATION, INSTITUTE OF

EDUCATIONAL SCIENCE,

SPECIAL EDUCATION

RESEARCH GRANTS

(R324A110136) DAUNHAUER, FIDLER, & WILL (2014)

METHODS

DS DS DS DS = = = = 29292929CA=94.35 (months)

NVMA=47.88 (months)

20 male

90% Caucasian


School Function Assessment

(SFA)

Leiter-R

Oral and Written Language

Scales (OWLS)

Teacher report BRIEF-P


DAUNHAUER, FIDLER, & WILL (2014)

SCHOOL FUNCTION: RESULTS

bbbb SE(b)SE(b)SE(b)SE(b) BBBB pppp

Intercept 134.34 20.32 <.001

MA -.30 .33 -.18 .385

Lang. -.04 .23 -.03 .867

EF ----.86.86.86.86 .19.19.19.19 ----.74.74.74.74 <<<< ....001001001001

Cognitive-Behavioral Tasks

emerged as most

problematic area for

students with DS:

– Compliance

– Task

Behavior/Completion

– Safety

– Social Conventions

– Positive Interaction

Profile

Predictors of School Function

DAUNHAUER, FIDLER, & WILL (2014)

Adjusted R2 = .55; F = (3, 17), p < .001

IN OTHER WORDS…

Executive function skills (especially

planning and working memory) are critical

for both school function and functioning in

daily life

EXECUTIVE FUNCTION

EF and Adult EF and Adult EF and Adult EF and Adult

EmploymentEmploymentEmploymentEmployment

Gerlach-McDonald, Fidler, Telapatra

& Riley (in press)

METHODS

EF AND EMPLOYMENT IN ADULTS WITH DS

----Vineland Adaptive Vineland Adaptive Vineland Adaptive Vineland Adaptive

Behavior ScalesBehavior ScalesBehavior ScalesBehavior Scales----IIIIIIII

----BriefBriefBriefBrief----Adult versionAdult versionAdult versionAdult version

----Employment Employment Employment Employment

informationinformationinformationinformation


Gerlach-McDonald, Fidler, Telapatra & Riley (in press)

- 31 Young Adults 31 Young Adults 31 Young Adults 31 Young Adults

with DSwith DSwith DSwith DS- 55%male

- 84% Caucasian

- M FSIQ = 47

- M CA=25.9 yrs


ASSOCIATIONS WITH EMPLOYMENT STATUS (POINT BISERIAL

CORRELATIONS)

Domain NameDomain NameDomain NameDomain Name Employment StatusEmployment StatusEmployment StatusEmployment Status

Communication (VABSCommunication (VABSCommunication (VABSCommunication (VABS----2)2)2)2) .223

Daily Living Skills(VABSDaily Living Skills(VABSDaily Living Skills(VABSDaily Living Skills(VABS----2)2)2)2) .545*

Socialization (VABSSocialization (VABSSocialization (VABSSocialization (VABS----2)2)2)2) .281

Working Memory (BRIEFWorking Memory (BRIEFWorking Memory (BRIEFWorking Memory (BRIEF----A)A)A)A) -.575*

Shift (BRIEFShift (BRIEFShift (BRIEFShift (BRIEF----A)A)A)A) -.489*

Plan/Organize (BRIEFPlan/Organize (BRIEFPlan/Organize (BRIEFPlan/Organize (BRIEF----A)A)A)A) -.369

Task Monitor (BRIEFTask Monitor (BRIEFTask Monitor (BRIEFTask Monitor (BRIEF----A)A)A)A) -.403

Full Scale IQ (SBFull Scale IQ (SBFull Scale IQ (SBFull Scale IQ (SB----5)5)5)5) .283

PREDICTING EMPLOYMENT STATUS

Currently

employedWorking Working Working Working MemoryMemoryMemoryMemory

VABSVABSVABSVABS----Daily Living Daily Living Daily Living Daily Living

SkillsSkillsSkillsSkills

OVERVIEW OF PRESENTATION

SYNDROME-INFORMED INTERVENTION

PLANNING

�Behavioral phenotype research may

make it possible to ‘‘know where to

look’’ for potential vulnerabilities

�Parents/practitioners use information

regarding phenotypic predispositions to

monitor potential areas of vulnerability

SYNDROME-INFORMED INTERVENTION

PLANNING (FIDLER, PHILOFSKY & HEPBURN, 2007)

If interventions are natural and without harm,

then potential ‘‘over-employment’’ is of low risk,

while the gains may be of high benefit

SMALL GROUP DISCUSSION QUESTIONS

• What are some common ways that we use executive function skills

during adult life?

– Working memory

– Inhibitory Control

– Shifting

– Planning

• How might you work to practice these skills in naturalistic ways?

Identify one idea for each construct.

OVERARCHING STUDY GOALS

• ADULT ED SERIES ADULT ED SERIES ADULT ED SERIES ADULT ED SERIES funded by the Global Down

Syndrome Foundation

• Identify new ways to continue to support

adaptation/EF growth and development

throughout the lifespan

• Enhance adult education experiences by

shaping curriculum and instruction to meet

needs of individuals with DS

STUDY MODULES

• Dance and Physical Activity

• Nutrition and Healthy choices

• Social Communication

• Personal Safety

PROJECT RATIONALE

• All activities aimed to enhance adaptation and goal-

directed behavior in adults with DS to support growth

and well-being

• Each activity was an opportunity to practice more

basic aspects of goal-directed behavior and cognitive

underpinnings

– Specific opportunities were given to practice aspects

of EF

PHENOTYPE INFORMED EF TARGETS

• Working memory: “updating” necessary for following

recipes, remembering steps to a dance

• Inhibitory control: group participation, resisting the

urge to quit during more challenging exercise, waiting

for recipe information before adding ingredients

• Shifting: natural transitions during each part of a

class session (group discussions/warm

up/exercise/group discussions)

• Planning: organizing steps of activities; integration of

activities at home with homework

KEY FEATURE OF PROJECT

Phenotype informed modifications

• Visual supports for instructions and planning

• Activities embedded in socially rewarding contexts

• Supports to enhance/accommodate for working

memory needs

• Minimizing expressive language demands

• Token economy

WELLNESS I: PHYSICAL ACTIVITY

• Week 1 Defining Exercise

• Week 2 Stretching

• Week 3 Exercises Targeting Core

• Week 4 Exercises Targeting Upper Body

• Week 5 Nutrition During Exercise

• Week 6 Exercises Targeting Lower Body

• Week 7 Group and Team Exercise

• Week 8 Benefits of Exercise

• Week 9 Selecting and Planning for Exercises

• Week 10 Review

SAMPLE LESSON

• Opening

– Social greeting and Warm Up song and Dance

• Group Discussion

– Review of material from previous sessions by asking students questions regarding content (e. g. “Who can tell me some of the steps to exercise?”)

• Warm up and Stretching

– Warm up song video and Personal Trainer lead stretching session

• Lecture

– Introduction to new content (e .g. What positive changes happen when you exercise?”) and visual power point lecture slides to accompany material

• Exercise

– Personal Trainer demonstrates various circuit stations and divides group into smaller groups (2-3 individuals per 1 course assistant)

– Cool Down

• Dance and Stretching

COOKING AND NUTRITION MODULE TOPICS

• Food groups,

• Food for fuel,

• Portion sizes,

• Nutrition label,

• Types of cooking,

• Building a pantry,

• Food allergies,

• A field trip to the grocery store,

• Planning a dinner party,

• Having a dinner Party

PARTICIPATION RATE AT EACH SESSION BY MODULE

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Physical Activity Nutrition Safety Communication

Perc

enta

ge o

f Adults P

art

icip

ating in L

essons a

nd A

ctivi

ties

Module

Participation by Module

SOCIAL ENGAGEMENT

69%

75%

83%

76%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Module 1 Module 2 Module 3 Module 4

Perc

ent Engaged

Module

Engagement with Peers & Course Materials by Module

Trendline

PRELIMINARY FINDINGS

VABS DomainVABS DomainVABS DomainVABS Domain BaselineBaselineBaselineBaseline

M(SD)M(SD)M(SD)M(SD)

PostPostPostPost----InterventionInterventionInterventionIntervention

M(SD)M(SD)M(SD)M(SD)

Receptive vReceptive vReceptive vReceptive v----ScaleScaleScaleScale 9.38(3.49) 10.0(4.16)

Expressive vExpressive vExpressive vExpressive v----ScaleScaleScaleScale 7.23(3.66) 7.45(3.92)

Written vWritten vWritten vWritten v----ScaleScaleScaleScale 6.97(2.42) 7.55(2.48)

Communication SSCommunication SSCommunication SSCommunication SS 44.7(22.2)44.7(22.2)44.7(22.2)44.7(22.2) 48.9(19.5)48.9(19.5)48.9(19.5)48.9(19.5)

Personal vPersonal vPersonal vPersonal v----ScaleScaleScaleScale 7.55(3.23) 8.36(2.66)

Domestic v scoreDomestic v scoreDomestic v scoreDomestic v score 8.32(2.86) 9.10(2.90)

Community v scoreCommunity v scoreCommunity v scoreCommunity v score 6.26(2.57) 6.41(3.05)

Daily Living Skills SSDaily Living Skills SSDaily Living Skills SSDaily Living Skills SS 55.5(14.8)55.5(14.8)55.5(14.8)55.5(14.8) 57.8(14.7)57.8(14.7)57.8(14.7)57.8(14.7)

Interpersonal Interpersonal Interpersonal Interpersonal

RelationshipsRelationshipsRelationshipsRelationships

9.03(2.50) 8.77(2.94)

Play and LeisurePlay and LeisurePlay and LeisurePlay and Leisure 9.45(2.42) 9.64(2.08)

CopingCopingCopingCoping 11.2(1.94) 11.9(2.59)

Socialization SSSocialization SSSocialization SSSocialization SS 64.0(13.7) 65.0(15.2)

Adaptive Behavior Adaptive Behavior Adaptive Behavior Adaptive Behavior

Composite SSComposite SSComposite SSComposite SS

52.9(15.4)52.9(15.4)52.9(15.4)52.9(15.4) 55.3(15.3)55.3(15.3)55.3(15.3)55.3(15.3)

First round of piloting complete, working to

identify additional sources of funding for scaling

up and additional curriculum development

BROADER EF SKILL DEVELOPMENT

• Divide tasks into smaller parts, then plan

order of actions

• Embed EF practice in fun, pleasurable

activities

– Games, sports, mindfulness activities


• Card games, board games

– working memory: Concentration, Go Fish

– processing speed: Speed

– Strategizing: Sorry!, Battleship, Mancala, Checkers

• Physical Activities/games

– Monitoring, rule following, decision making, self-control :

Four Square, Tetherball

– Organized sports—attention skills

– Mindfulness activities (yoga, Tae Kwon Do)


• Strategy games

– Attention, working memory, cognitive flexibility:

Puzzles, brain teasers, matching games

– Working memory, flexible thinking: Guessing

games

• Music, singing, dance

– Attention, self-monitoring--Playing an instrument

GENERAL IMPLICATIONS

• Bridging behavioral phenotype science and

intervention practice will strengthen education and

intervention for individuals with Down syndrome

across the lifespan

• We can continue to support growth and

development of goal-directedness skills into

adulthood through engaging and phenotype-

informed educational opportunities

ACKNOWLEDGEMENTS

� Lisa Daunhauer, ScD

� Karen Riley, PhD

� Brianne Gerlach-McDonald, PhD

� Susan Hepburn, PhD

� Amy Needham, PhD

� Sally Rogers, PhD

� Laura Hahn, PhD

� Elizabeth Will, PhD

� Nancy Raitano Lee, PhD

� Audrey Blakely-Smith, PhD

� Amy Philofsky, PhD

� Cordelia Robinson, RN, PhD

� David Most, PhD

DD LAB @ CSU

� Emily Schworer, MS

� Mackenzie Howshar, BS

• Emily Legatski

• Bailey Geisen

• Hayley Lewis

• Anna Pritchard

• Lauren Carlson

• Mariah Hancock

• Kathryn Gerken

• Emily Pennington

• Aimee Wakeman

With gratitude to the families, children, and adults

who participated in this research


QUESTIONS?

[email protected]

Documents

COLLEGE OF HEALTH & HUMAN SCIENCES DEPARTMENT OF … Strengthening Goal Directed Behaviour Ad… · ----6 trials post6 trials post6 trials post- ---switchswitch----12 trials border