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

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 community belonging aMer brain injury • Developing a mul>-component community connec>on program o Components of the program o Program logic • Knowing the evidence o INCOG Guidelines (2014) o Efficacy of community-based, leisure/social ac>vity programs (Tate et al., 2014) • Applying the evidence to maximise community connec>on o Michael and Samantha La Trobe University 2

Partner Community Family Leisure Friends Workmates La Trobe University 3

Rela>onships and community belonging aMer brain injury

TBI and social outcome: the figures 6 months (Wade et al., 1998) (n=314) Social disability (RHFUQ, Rivermead ̶ 100 Head injury Follow Up Ques>onnaire) UK ̶ 80 63.2 3-5 years (Dikman et al., 2003) (n=210) 61 54.4 ↓ Social integra>on (FSE, Func>onal ̶ 49 60 Status Examina>on) USA 40 ̶ 6 years (Tate et al., 1989) (n=100) 20 Restricted rela>onships (SPRS, Sydney ̶ Psychosocial Reintegra>on Scale) 0 Aus ̶ 6 months 3-5 yrs 6 yrs 23 yrs 23 years (Tate et al., 2006) Restricted rela>onships (SPRS) ̶ Aus ̶ La Trobe University 5

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 . La Trobe University 6

TBI and social outcome: friends (Douglas, in prep) • 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 No of Exc family/ Sources of Themes friends paid carers new friends M 3.4 M 1.5 Experience of SD 2.2 SD 1.4 Rehab Loss R 0-7 R 0-4 35% (8) no Lack of Work understanding friends 13% (3) Desire to Leisure pre-injury share friends Shared sig r QOL & STS living La Trobe University 7

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) Health • Fra>glioni et al. (2004): less age-related Mortality cogni>ve decline including demen>a • The evidence linking social Social rela6onships to health, mortality & Rela6onships morbidity, is as strong as evidence linking smoking, obesity, blood pressure & physical ac6vity to health. (Umberson et al., 2006) Emotional Wellbeing & • Cohen & Wills (1985): buffer or Support aienuate the effects of stress • Douglas & Spellacy (2000) predict depression in people with TBI & family La Trobe University 8

Developing a mul>-component community connec>on program: project in progress Douglas, Bigby, Iacono, Knox, Winkler & Callaway

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 o Living at home with family with paid support o Living alone with paid support o Living in a group home with shared support La Trobe University 10

Components of the program • M-ComConnect is designed around 3 domains: o func>oning in the community (skills and behaviours) o developing and maintaining rela>onships (family, friends and members of the community) o being involved in the community (ac>vi>es and services) La Trobe University 11

Mul>-component Community Connec>on Program Logic ISSUE ACTIVITIES OUTPUTS OUTCOMES • People with • Develop client • Program will • People with severe TBI profile: produce: severe TBI have: will : • Reduced • Function • Functioning • Innovative social effectively in evidence- • Close & functioning their based casual community • Few or no interventions relationships close & • Develop & • Training • Community casual maintain resources involvement relationships close & (activities & • Toolkits casual • Little or no services) • Practice relationships involvement guidelines in their • Participate • Implement & • Policy community in activities evaluate client development (activities & and access program services) services in (SCED): • Publications their • Presentations community • Functioning • Workshops • Relationships • Community involvement (activities & services) La Trobe University 12

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 o family members o paid carers o established friends o people in the community (local business people, service o providers, co-par>cipants in community ac>vi>es) La Trobe University 13

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 o All beyond phase 0 evalua>on on the Medical Research Council framework (Campbell et al. 2007) o 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) La Trobe University 14

Knowing the evidence

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. La Trobe University 16

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 of the INCOG Expert Panel, 2014) La Trobe University 17

Evidence for community-based ac>vity programs • Tate, Wakim & Genders (2014). A Systema>c Review of 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 . La Trobe University 18

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

Michael: I don't like being alone …. I get sad • At 20 years of age o living with his family o about to complete his appren>ceship as an electrician. o lots of friends. o in a steady rela>onship with his girlfriend o ac>ve in his local cricket club. o sustained a severe brain injury (GCS admission: 3, PTA dura>on: > 120 days) • At 27 years of age o con>nued to live at home o significant levels of depressive symptomatology and anxiety o minimal social involvement La Trobe University 20

M-ComConnect: Michael • Functioning Develop • Relationships Profile • Community Set Goal • Increase participation by 1 activity per week (Community) • Community Deliver Leisure Intervention Program * * Douglas et al. (2006) ; Mitchell et al. (2014); Tate et al. (2003) La Trobe University 21

Michael: Before Group Community Program I ’ d like to be Most activities (shopping, Mum and Can talk to movies) with carers; also the Mum, if I have a happy again weekly computer lesson; carers. problem - maybe weekends - not much Keith (cousin) going on . Instrumental Social Social Social Emo6onal Ac6vity Ties Support Wellbeing Expressive La Trobe University 22