Maximising Community Connec6on a7er Brain Injury: A Mul6-component - - PowerPoint PPT Presentation

▶
maximising community connec6on a7er brain injury a mul6
SMART_READER_LITE
LIVE PREVIEW

Maximising Community Connec6on a7er Brain Injury: A Mul6-component - - PowerPoint PPT Presentation

Dec 04, 2022 252 likes •590 views

Maximising Community Connec6on a7er Brain Injury: A Mul6-component Program Professor Jacinta Douglas Allen Mar>n Memorial Lecture 23 Nov 2016 CRICOS Provider 00115M latrobe.edu.au CRICOS Provider 00115M Overview Rela>onships and

slide-1
SLIDE 1

latrobe.edu.au

CRICOS Provider 00115M

CRICOS Provider 00115M

Maximising Community Connec6on a7er Brain Injury: A Mul6-component Program

Professor Jacinta Douglas Allen Mar>n Memorial Lecture

23 Nov 2016

slide-2
SLIDE 2

2 La Trobe University

Overview

  • Rela>onships and community belonging aMer brain injury
  • Developing a mul>-component community connec>on program
  • Components of the program
  • Program logic
  • Knowing the evidence
  • INCOG Guidelines (2014)
  • Efficacy of community-based, leisure/social ac>vity programs (Tate et

al., 2014)

  • Applying the evidence to maximise community connec>on
  • Michael and Samantha
slide-3
SLIDE 3

3 La Trobe University

Family Leisure Partner Workmates Friends Community

slide-4
SLIDE 4

Rela>onships and community belonging aMer brain injury

slide-5
SLIDE 5

5 La Trobe University

TBI and social outcome: the figures

61 49 63.2 54.4

20 40 60 80 100 6 months 3-5 yrs 6 yrs 23 yrs

6 months (Wade et al., 1998) (n=314) ̶ Social disability (RHFUQ, Rivermead Head injury Follow Up Ques>onnaire) ̶ UK 3-5 years (Dikman et al., 2003) (n=210) ̶ ↓ Social integra>on (FSE, Func>onal Status Examina>on) ̶ USA 6 years (Tate et al., 1989) (n=100) ̶ Restricted rela>onships (SPRS, Sydney Psychosocial Reintegra>on Scale) ̶ Aus 23 years (Tate et al., 2006) ̶ Restricted rela>onships (SPRS) ̶ Aus

slide-6
SLIDE 6

6 La Trobe University

TBI and social outcome: the feelings

Rachel (22 yrs of age, 2.9 yrs aMer injury): I only see mum in the a0ernoons when she comes home from work or on the weekend. So I just get a bit lonely some<mes in the house or some<mes when I’m at [university], some%mes a loneliness sort of washes over me and I just want somebody to talk to. Chris (24 yrs of age, 4.2 yrs aMer injury) So that’s the way it is for me - always being le: out. Dave (30 yrs of age, 15 yrs aMer injury) I’m very much a one off sort of, or, whereas there’s a big group here and a big group there and I’m sort of in the middle, sort of one on my own.

slide-7
SLIDE 7

7 La Trobe University

TBI and social outcome: friends (Douglas, in prep)

No of friends

M 3.4 SD 2.2 R 0-7 35% (8) no friends 13% (3) pre-injury friends sig r QOL & STS

Exc family/ paid carers

M 1.5 SD 1.4 R 0-4

Sources of new friends

Rehab Work Leisure Shared living

Themes

Experience of Loss Lack of understanding Desire to share

  • 23 adults with severe TBI (20 men)
  • On average 10 years since injury (Range 2-20)
  • Majority between 25 and 45 years old (Range 19-55)
  • All living in the community
slide-8
SLIDE 8

8 La Trobe University

Health Mortality Emotional Wellbeing & Support

Social Rela6onships

  • Cohen & Wills (1985): buffer or

aienuate the effects of stress

  • Douglas & Spellacy (2000) predict

depression in people with TBI & family

The power of social rela>onships

  • House et al. (1957): less likely to die
  • Seeman (1996): live longer
  • Cohen & Janicki-Deverts (2009): more

resistance to disease (common cold, cardiovascular disease incl stroke)

  • Fra>glioni et al. (2004): less age-related

cogni>ve decline including demen>a

  • The evidence linking social

rela6onships to health, mortality & morbidity, is as strong as evidence linking smoking, obesity, blood pressure & physical ac6vity to health. (Umberson et al., 2006)

slide-9
SLIDE 9

Developing a mul>-component community connec>on program: project in progress

Douglas, Bigby, Iacono, Knox, Winkler & Callaway

slide-10
SLIDE 10

10 La Trobe University

Aim

  • To implement and evaluate the efficacy of a mul>-

component community connec>on program (M- ComConnect) for people with severe TBI living in a variety of accommoda>on sejngs in the community

  • Living at home with family with paid support
  • Living alone with paid support
  • Living in a group home with shared support
slide-11
SLIDE 11

11 La Trobe University

Components of the program

  • M-ComConnect is designed around 3 domains:
  • func>oning in the community (skills and behaviours)
  • developing and maintaining rela>onships (family, friends

and members of the community)

  • being involved in the community (ac>vi>es and services)
slide-12
SLIDE 12

12 La Trobe University

ISSUE

  • People with

severe TBI have:

  • Reduced

social functioning

  • Few or no

close & casual relationships

  • Little or no

involvement in their community (activities & services)

ACTIVITIES

  • Develop client

profile:

  • Functioning
  • Close &

casual relationships

  • Community

involvement (activities & services)

  • Implement &

evaluate client program (SCED):

  • Functioning
  • Relationships
  • Community

involvement (activities & services)

OUTPUTS

  • Program will

produce:

  • Innovative

evidence- based interventions

  • Training

resources

  • Toolkits
  • Practice

guidelines

  • Policy

development

  • Publications
  • Presentations
  • Workshops

OUTCOMES

  • People with

severe TBI will:

  • Function

effectively in their community

  • Develop &

maintain close & casual relationships

  • Participate

in activities and access services in their community

Mul>-component Community Connec>on Program Logic

slide-13
SLIDE 13

13 La Trobe University

Focus of the program

  • Implements interven>on principles, strategies and

prac>ces that have been shown to promote social connec>on and community inclusion

  • Focuses on up to 5 people/players:
  • the person with TBI
  • family members
  • paid carers
  • established friends
  • people in the community (local business people, service

providers, co-par>cipants in community ac>vi>es)

slide-14
SLIDE 14

14 La Trobe University

Interven>on

  • The interven>ons within the program have been

shown to have at least sufficient clinical and/or theore>cal evidence to indicate that they should work with this popula>on

  • All beyond phase 0 evalua>on on the Medical Research

Council framework (Campbell et al. 2007)

  • Substan>al number have been subjected to proof of

concept evalua>ons and have been found to work (i.e. beyond phase 1 evalua>on)

slide-15
SLIDE 15

Knowing the evidence

slide-16
SLIDE 16

16 La Trobe University

INCOG Guidelines for Cogni6ve Rehabilita6on Following TBI (Journal of Head trauma Rehabilita<on, 29, 2014)

  • Methods and Overview (Bayley, Tate, Douglas, Turkstra,

Ponsford, Stergiou-Kita, Kua, & Bragge, on behalf of the INCOG Expert Panel, 2014)

  • Previously published cogni>ve rehabilita6on recommenda6ons were

iden6fied and tabulated.

  • An expert panel met to select appropriate recommenda6ons.
  • The team enhanced the recommenda6ons by reviewing available

literature.

  • Decision algorithms incorpora>ng the recommenda>ons were developed.
  • Recommenda6ons were priori6sed for implementa>on.
  • Audit criteria were developed to evaluate adherence to best prac>ce.
slide-17
SLIDE 17

17 La Trobe University

INCOG Guidelines for Cogni6ve Rehabilita6on Following TBI: 5 Parts

Part I: Post trauma6c amnesia (Ponsford, Janzen, McIntyre, Bayley, Velikonja, Tate, on Behalf of the INCOG Expert Panel, 2014) Part II: ARen6on and Informa6on Processing Speed (Ponsford, Bayley, Wiseman-Hakes, Togher, Velikonja, McIntyre, Janzen, Tate, on Behalf of the INCOG Expert Panel, 2014) Part III: Execu6ve Func6on and Self-Awareness (Tate, Kennedy, Ponsford, Douglas, Velikonja, Bayley, Stergiou-Kita, on Behalf of the INCOG Expert Panel, 2014) Part IV: Cogni6ve Communica6on (Togher, Wiseman-Hakes, Douglas, Stergiou- Kita, Ponsford, Teasell, Bayley, Turkstra, on behalf of the INCOG Expert Panel, 2014) Part V: Memory (Velikonja, Tate, Ponsford, McIntyre, Janzen, Bayley, on behalf

  • f the INCOG Expert Panel, 2014)
slide-18
SLIDE 18

18 La Trobe University

Evidence for community-based ac>vity programs

  • Tate, Wakim & Genders (2014). A Systema>c Review
  • f the Efficacy of Community-based, Leisure/Social

Ac>vity Programmes for People with Trauma>c Brain

  • Injury. Brain Impairment, 15, 157-176.
  • Conclusions: interven>ons for this area need to be

planned and specific, structured and goal-driven, intensive and conducted over a period of months.

slide-19
SLIDE 19

Applying the evidence to maximise community connec>on: Michael and Samantha

slide-20
SLIDE 20

20 La Trobe University

Michael: I don't like being alone….I get sad

  • At 20 years of age
  • living with his family
  • about to complete his appren>ceship as an electrician.
  • lots of friends.
  • in a steady rela>onship with his girlfriend
  • ac>ve in his local cricket club.
  • sustained a severe brain injury (GCS admission: 3, PTA dura>on: > 120

days)

  • At 27 years of age
  • con>nued to live at home
  • significant levels of depressive symptomatology and anxiety
  • minimal social involvement
slide-21
SLIDE 21

21 La Trobe University

M-ComConnect: Michael

Develop Profile

  • Functioning
  • Relationships
  • Community

Set Goal

(Community)

  • Increase participation

by 1 activity per week

Deliver Intervention

  • Community

Leisure Program* *Douglas et al. (2006); Mitchell et al. (2014); Tate et al. (2003)

slide-22
SLIDE 22

22 La Trobe University

Social Ac6vity Social Ties Social Support Emo6onal Wellbeing

Expressive Instrumental

Most activities (shopping, movies) with carers; weekly computer lesson; weekends - not much going on. Mum and also the carers. Can talk to Mum, if I have a problem - maybe Keith (cousin) I’d like to be happy again

Michael: Before Group Community Program

slide-23
SLIDE 23

23 La Trobe University

Social Ac6vity Social Ties Social Support Emo6onal Wellbeing

Expressive Instrumental

Enjoys: DS stuff - billiards, woodwork, dinner, indoor cricket team. … met one person with similar interests Most activities (shopping, movies) with carers; weekly computer lesson; weekends - not much going on. One or two friends I can talk to .. (Keith- cousin & ‘new’ cricket friend) .. mainly positive but get a bit down because of tiredness.. Mum and also the carers. Can talk to Mum, if I have a problem - maybe Keith (cousin) I’d like to be happy again

Michael: Before Group Community Program AMer 6 Months in Group Community Program

slide-24
SLIDE 24

24 La Trobe University

Michael’s pre and post test scores

10 20 30 40 50 60 NFI-Dep SFv2-MH pr-STS pr-LOI CIQ-SI QOL

R a w S c

  • r

e s

Measures Time 1 Time 2

slide-25
SLIDE 25

25 La Trobe University

M-ComConnect: Michael

Develop Profile

  • Functioning
  • Relationships
  • Community

Set Goal

(Community)

  • Increase participation

by 1 activity per week

Deliver Intervention

  • Community

Leisure Program* *Douglas et al. (2006); Mitchell et al. (2014); Tate et al. (2003)

slide-26
SLIDE 26

26 La Trobe University

Samantha: I’d like to be able to start talking to people…

  • At 22 years of age
  • had completed high school & part of a university degree
  • was working full >me
  • living at home with her family
  • ‘social buierfly’
  • sustained a very severe TBI (loss of consciousness > 4 weeks).
  • At 30 years of age
  • Con>nued to living at home with her family
  • High social anxiety & psychological distress (73 percen>le - DASS)
  • Social communica>on problems (frequency > 3 standard devia>ons

above the norma>ve mean - LCQ)

  • Accessing community with paid care support
slide-27
SLIDE 27

27 La Trobe University

M-ComConnect: Samantha

Develop Profile

  • Functioning: social

communication

  • Relationships
  • Community

Set Goal

(Functioning)

  • Increase use of

productive communication strategies

Deliver Intervention

  • Comm-

Cope I*

*Douglas et al. (2014,in press); Togher et al., 2013

slide-28
SLIDE 28

28 La Trobe University La Trobe University

Samantha: DCS baseline, treatment & follow-up

* Corrected highest baseline ra>ng = 4.7

1 2 3 4 5 6 7 8 9 10

Baseline 1 Baseline 2 Baseline 3 Tx 1 Tx 2 Tx 3 Tx 4 Tx 5 Tx 6 Post 1 week Follow- up 1 month Follow- up 3 months

Discourse Coping Scale Rating

!!!!"PNCD"Line"

!Corrected"Data"Series"

*

PNCD 100% at the end of interven>on & follow up sessions

slide-29
SLIDE 29

29 La Trobe University

Pre, Post, Follow up

CommCope-I

êNon-prod strategies éProd strategies (expression)

êFunctional Communication Problems éDiscourse Coping ê DASS (47%ile, 51%ile)

slide-30
SLIDE 30

30 La Trobe University

M-ComConnect: Samantha

Develop Profile

  • Functioning: social

communication

  • Relationships
  • Community

Set Goal

(Functioning)

  • Increase use of

productive communication strategies

Deliver Intervention

  • Comm-

Cope I*

*Douglas et al. (2014,in press); Togher et al., 2013

slide-31
SLIDE 31

31 La Trobe University

Review

ü Rela>onships and community belonging aMer brain injury ü Developing a mul>-component community connec>on program ü Knowing the evidence ü Applying the evidence to maximise community connec>on ü Currently recrui>ng par>cipants to start the program beginning 2017

  • J.Douglas@latrobe.edu.au or L.Dixon@latrobe.edu.au
slide-32
SLIDE 32

Thank you

latrobe.edu.au

CRICOS Provider 00115M

Ques>ons and/or Comments