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CO-OP is …

“a client-centred, performance- based, problem solving, Enabling Performance approach that enables skill acquisiFon through a process of Success through CO-OP strategy use and guided discovery”

(Polatajko & Mandich, 2004, p. 2).

RaFonale for CO-OP CO-OP

• Originally developed to enable skill acquisiFon in children with Client’s need to succeed developmental coordinaFon disorder (DCD) is: – Founded on theory – Supported by evidence originally from studies of children with DCD Performance focused and now several other child and adult populaFons

Evidence-based CO-OP

PracFce context

Contemporary motor theories An excellent DCD resource is: hYp://canchild.ca/elearning/dcd_workshop/index.html

CO-OP … CO-OP …

engages the client at a Four major objecFves meta-cogniFve level in an iteraFve process of dynamic performance 1. Skill acquisiFon analysis and soluFon creaFon and 2. Strategy use evaluaFon 3. GeneralizaFon -Interna)onal CO-OP Academy Execu)ve, 2014 4. Transfer

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FoundaFons of CO-OP The CO-OP ApproachTM

Client Centred

CO-OP Skill acquisiFon 7 key Performance Problem Strategy use Based Solving Motor Learning and Performance GeneralizaFon features Learning Theory Transfer EBP ICF

Key Features CO-OP: DPA

• Dynamic performance analysis (DPA) – ObjecFves • To idenFfy performance problems

COGNITIVE ORIENTATION to daily OCCUPATIONAL PERFORMANCE • To idenFfy potenFal strategies to enable CO-OP performance

Client-chosen Dynamic Cognitive Guided Enabling Parent Intervention Occupation- Performance Strategy Use Discovery Principles Significant other Format based Goals Analysis involvement

Key Features Why Use Strategies?

COGNITIVE ORIENTATION to daily OCCUPATIONAL PERFORMANCE CO-OP • Learners should know more about how to Client Chosen Dynamic Cognitive Guided Enabling Parent Intervention Goals Performance Strategy Use Discovery Principles Significant other Format Analysis involvement manage their own cogniFve strategies, and

Setting Motivation Global One thing Make It fun! Program how to analyse themselves and the the Problem Solving at a time! Structure Parameters Strategy situaFonal demands in order to improve Daily Activity Task Domain Ask, Promote Session Log Knowledge Specific don't tell! Learning! Structure Strategies learning and performance

Pediatric Activity Performance Good Coach, Work Towards MATERIALS Card Sort Competence Strategy doin't adjust! Independence! Use

COPM Make it Promote obvious! Generalization and Transfer!

PQRS

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Why Use Strategies? CO-OP: CogniFve Strategies

ABILITY SKILL Types

• Global Strategy

• Domain Specific Strategy (DSS) STRATEGY

CO-OP: Strategy Use GPDC: Problem Solving Framework (Mandich et al., 2001)

GOAL - What do I want to do? Task Knowledge Domain Specific Strategies: VG(BATs For 2V’s) PLAN - How am I going to do it? G Body posiFon DO - Do it (carry out the plan) V U AYenFon to task CHECK - Did I do my plan; did it work? E I Task specificaFon/modificaFon Self-interrogaFon D SupplemenFng task knowledge R A Self-monitoring Feeling the movement N Self-observaFon B 2V’s Verbal motor C Self-evaluaFon E Verbal rote script A

L

Key Features Guided Discovery…

COGNITIVE ORIENTATION to daily OCCUPATIONAL PERFORMANCE CO-OP

Client Chosen Dynamic Cognitive Guided Enabling Parent Intervention A means of providing both instrucFon and Goals Performance Strategy Use Discovery Principles Significant other Format Analysis involvement feedback during the learning process in which Setting Motivation Global One thing Make It fun! Program the Problem Solving at a time! Structure Parameters Strategy the learner is encouraged to solve problems

Daily Activity Task Domain Ask, Promote Session Log Knowledge Specific don't tell! Learning! Structure independently, but is guided by a Strategies knowledgeable instructor who quesFons, Pediatric Activity Performance Good Coach, Work Towards MATERIALS Card Sort Competence Strategy doin't adjust! Independence! Use coaches, cues or hints

COPM Make it Promote obvious! Generalization and Transfer!

PQRS

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Instructor Control ConFnuum

Try to do it out on your own – but I will help you if you get stuck. CO-OP Key Features: High: Explicit Enabling Principles Mid: Instruc8on Guided Discovery Low: I will tell you Discovery what to do! Learning

Figure it out on your own!

Key Features Enabling Principles

COGNITIVE ORIENTATION to daily OCCUPATIONAL PERFORMANCE CO-OP ü Make it fun

Client Chosen Dynamic Cognitive Guided Enabling Parent Intervention Goals Performance Strategy Use Discovery Principles Significant other Format Analysis involvement ü Promote learning

Setting Motivation Global One thing Make It fun! Program the Problem Solving at a time! Structure ü Work towards independence Parameters Strategy

Daily Activity Task Domain Ask, Promote Session ü Promote generalizaFon and transfer Log Knowledge Specific don't tell! Learning! Structure Strategies

Pediatric Activity Performance Good Coach, Work Towards MATERIALS Card Sort Competence Strategy doin't adjust! Independence! Use

COPM Make it Promote obvious! Generalization and Transfer!

PQRS

CO-OP: The DCD Evidence CO-OP: DCD The Evidence

Since 1994 Since 1994…. • Early exploraFon of cogniFve approach (Polatajko et al., 2001) • Secondary analyses – 10 single case experiments (Wilcox, 1994) – Strategy use (Sangster et al, 2005) – 4 systemaFc replicaFons (MarFni, 1994) – Self-efficacy (Mendes & Polatajko, 2004) – Informal 2 yr. follow-up (Polatajko et al., 1996) – Compared with task specific (Corcoran et al., 2005) – Domain specific strategies (Mandich, 1997) – Informal replicaFons (Polatajko et al., 2001) • Independent studies • CO-OP trial (Miller et al., 2001) – Strategy use (Rodger & Liu, 2008) – • In-depth interviews with parents (Segal et al., 2002) Group (Green, Chambers, & Sugden, 2008; Thornton et al., 2016) – Parents’ group (Chan, 2007) • In-depth interview with families and children (Mandich et al., 2002) – Meta-analysis (Chen, et al., 2003) – – Self-regulaFon (Jokic et al., 2013) Self-regulaFon (Jokic et al., 2013) – Summer camp (Zwicker et al., 2015)

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CO-OP: The Evidence CO-OP: Evidence Summary

Studies with other populaFons Published studies provide evidence that: – Pre-schoolers (Taylor, Fayed, & Mandich, 2007; Ward, & Rodger, 2004) • CO-OP meets its objecFves: – TBI (Samonte, Solish, Delaney, & Polatajko, 2004) – Skill acquisiFon – Asperger’s Syndrome (Rodger et al., 2007; Rodger & Brandenburg, 2009; Rodger et al., – GeneralizaFon of skills 2008). – Skill transfer – (Cameron et al., 2009) CP – CogniFve strategy use – Child ABI (Missiuna et al., 2009) • CO-OP is associated with improvements in – Adult ABI (Dawson et al., 2009; secondary outcomes: – Adult ABI – via Internet (Ng et al., 2013) – ParFcipaFon – Elements of – Adult (McEwen et al., 2009a, 2009b, 2010; Henshaw et al., 20011; Skidmore et al., 2011, 2014; Polatakjo et al., 2012 ) – Elements of cogniFon, including cogniFve flexibility and self regulaFon – Drooling (Senecal, 2012) – Self-efficacy – Adult stroke RCT (McEwen et al., 2013) – Older adults with subjecFve cogniFve complaints (Dawson et al., 2014)

CO-OP: Evidence Summary

• PopulaFons with supporFng evidence include: – DCD – Asperger’s – Cerebral palsy – Dystonia – Stroke – TraumaFc injury – And more…

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ProDo Research team

Marie Peny-Dahlstrand project manager, PhD, reg.OT Oueen Silvia’s Children's Hospital and University of Gothenburg Can the CO-OP ApproachTM be beneficial for Ann-Marie Öhrvall PhD, reg.OT Karolinska InsGtutet, Stockholm young adult’s with spina bifida or cerebral palsy? Lena Bergqvist PhD-student, reg.OT, HabilitaGon Västra Götaland and University of Gothenburg Caisa Hofgren PhD, neuropsychologist, HabilitaGon Västra Götaland and University of Gothenburg Marie Peny-Dahlstrand, University of Gothenburg, Sweden Ann-Marie Öhrvall, Karolinska InsGtutet, Sweden The study was financially supported by Promobilia, The Folke Bernado[e foundaGon, The RBU research foundaGon, The Sunnerdal FoundaGon and the Norrbacka Eugenia foundaGon

When thinking about difficulGes for person’s with CP or SB the issue is oHen about the lack of experience… However, a person cannot have experience for Why CO-OP for young adults with every life situaGon – the importance is to be able cerebral palsy (CP) or spina bifida (SB)? to solve problems

Spina bifida Cerebral Palsy

DifficulGes in planning, iniGaGon and Growing evidence shows that execuGve funcGons problem-solving are described as the most oHen are affected such as problem-solving, hindering factors in daily life, regardless of decision making, self-regulaGon which influence IQ-level, more hindering than their motor the compleGon of everyday novel, goal-directed dysfuncGons. and complex acGviGes. Bo[cher el al 2016, Bo[cher 2010, Bo[cher et al, 2009, Bodimeade et al 2013 Dennis and Barnes 2010, Heffelfinger et al 2008, Tarazi et al 2008, Peny- Widngham et al 2010, Weierink et al, 2013 Dahlstrand et al 2012, Stubberud and Reimer 2012

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Pilot - study Methods and participants

To invesGgate if the CO-OP approach is effecGve A mulGple case, pilot study with an embedded design (SB for achieving self-idenGfied goals and improvement and CP), using mixed methods. in self-perceived community parGcipaGon and execuGve funcGons for young persons with Spina Bifida • 10 young persons 16-28 years old or Cerebral Palsy in a Swedish context § 5 with Spina Bifida • 3 men, 2 women

§ 5 with Cerebral Palsy, MACS I-II • 3 men, 2 women

Study flow-chart Was CO-OP the right way?

Interven,on (10 sessions)

T2 T3 T1

1st session prepara,on phase Goal sedng COPM

Post assessment T3 Follow-up

6 months afer end of intervenGon AMPS COPM Baseline assessment T1 Post assessment T2 OSA-S AMPS AMPS DEX OSA-S COPM D-KEFS DEX OSA-S Interview YES! D-KEFS Interview

Preliminary results Preliminary results Did the CO-OP Approach fit the young adults Goals chosen by the participants with SB or were adaptions needed? (15 goals)

• Few minor adaptaGons; • Hygiene reminders and significant others § CiC –procedure in due Gme § Bowel emptying • The parGcipants expressed a wish for follow up sessions • EducaGonal related – goals

• OrientaGon - finding my way • The chosen goals had high complexity • Cooking meals • Structure of the day

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Preliminary results Preliminary results Goals chosen by the participants with CP High level of goal achievement (15 goals) • COPM performance scale - the median of the raGngs increased 5 levels on a 10-level scale • Work related – goals • before and post intervenGon • before and 6 months follow-up • Cooking meals • 29/30 goals improved 2 or more points (14/15 SB) • Structure of the day • Structure of my home • COPM SaGsfacGon - the median of the raGngs increased 6 levels on a 10-level scale • before and post intervenGon • before and 6 months follow-up • 29/30 goals improved 2 or more points (14/15 SB) A difference of 2 points is a meaningful clinical difference

Preliminary results Preliminary results Was participation affected? Gains in executive functions/groups

Self rated parGcipaGon in everyday occupaGons Spina Bifida group Cerebral Palsy group • The majority did not change significantly but 33% of the parGcipants rated higher everyday parGcipaGon both • All improved in DEX • 3 out of 5 improvement in DEX, direct aHer and 6 month aHer the treatment 2 did experienced more period compared to baseline. execuGve problems Response • Response shiH? shiH??

AcGvity Performance skills (AMPS) • All improved in Tower test • 4 out of 5 improved in Tower test • a tendency to increased process skills but only 2/10 changed more than 2 SEM

Preliminary results Preliminary results How did the participants perceive Qualitative interview the CO-OP ApproachTM The participants experiences of the intervention with CO-OP Approach CO-OP enhanced my self-efficacy • All the parGcipants found CO- • 40 % found it hard work but OP meaningful 100% expressed that it was • CO-OP – a different way of learning worth the effort • CO-OP – supports my way of thinking and doing • AHer 6 month 8/10 expressed that they use the global • CO-OP – someGmes put a strain on me strategy when they encounter • CO-OP – boosts me new performance problems.

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Preliminary results Preliminary results CO-OP CO-OP – a different way of learning – supports my way of thinking and doing

• Global strategy was crucial Thinking before • working towards a goal was the same as in other Thinking while DOING treatments, Thinking aHer but • Global strategy use - a part of me • The global strategy use support the problem-solving the way of doing it was extremely different

Preliminary results Preliminary results CO-OP CO-OP – sometimes put a strain on me – boosts me

• The changed thinking was not just a changed mindset • Physically and mentally challenging but a whole new dimension, not thought of

before…..It was the thinking about thinking and this ………..but worth it boosted them

Preliminary results Preliminary results CO-OP Conclusions enhanced my self-efficacy • The CO-OP ApproachTM improved the parGcipants problem- • CO-OP ApproachTM is feasible for adolescents and young solving in daily life by using meta-cogniGve thinking skills. adults with spina bifida and with cerebral palsy, to achieve • Using COOP ApproachTM in daily life increased their personal goals . confidence about their own ability, which enhance their self- • CO-OP ApproachTM can improve planning and problem- efficacy. solving ability as well as self-perceived execuGve funcGon and increased self efficacy …..If I have trouble doing something, it is not a failure, I just make a new plan • Limita0on: small scale pilot study • Larger RCT-studies are needed and planned, with start 2017 (younger age groups)

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References • Bodimeade H, Whikngham K, Lloyd O, Boyd R. ExecuGve funcGon in children and adolescents with unilateral cerebral palsy. Dev Med Child Neurology, 2013, 55(10), pp.926-33 • Boncher L, Meulengracht Flachs E, Ulldal P. AnenGonal and execuGve impairments in children with spasGc cerebral palsy Dev Med & Child Neurology, 2010, 52(2),.e42-e47 • Boncher L. Children with spasGc cerebral palsy, their cogniGve funcGoning, and social parGcipaGon: a review. Child neuropsychology. 2010, . 16(3), 209-28 • Boncher L, Stadskleiv K, Berntsen T, Christensen K, Korsfelt Å, Kihlgren M, Ödman P. SystemaGc cogniGve monitoring of children with cerebral palsy – the development of an assessment and follow-up protocol, Scand J of Disability Research,2016 18:4, 30415 • Dennis M, Barnes M. The cogniGve phenotype of spina bifida meningomyelocele.Developmental disability research reviews 2010;16:31-39 • Heffelfinger AK, Koop JI, Fastenau PS, Brei TJ, Contenant L, Kazenstein J, Cashin S E, Sawin K. The relaGonship of neuropsychological funcGoning to adaptaGon outcome in adolescents with spina bifida . J Int Neuropsychol Soc. 2008 Sep; 14:793-804. • Peny-Dahlstrand M, Krumlinde-Sundholm L, Gosman-Hedström G. Is autonomy related to the quality of performance of everyday acGviGes in children with spina bifida? Disabil Rehabil 2012;34:514-21 • Peny-Dahlstrand M. A Model for the Process of Task Performance to Explain DifficulGes’ in Daily Life in Persons with Spina Bifida. 3de World congress on Spina Bifida San Diego USA 16-20 mars 2017 Journal of Pediatric RehabilitaGon Medicine: An Interdisciplinary Approach 2017; 10,S1, pp. S77-S7 • Stubberud J, Riemer G. ProblemaGc psychosocial adaptaGon and execuGve dysfuncGon in women and men with myelomeningocele. Disabil Rehabil. 2012;34:740-46. • Tarazi RA, Zabel TA, Mahone EM. Age-related differences in execuGve funcGon among children with spina bifida/hydrocephalus based on parent behaviour raGngs. Clin Neuropsychol. 2008 Jul;22:585-602. [email protected] • Whikngham K, Bodimeade H, LLoyd, O, Boyd R. Everyday psychological funcGoning in children with unilateral cerebral palsy: does execuGve funcGoning play a role? Dev Med & Child Neurology, 2014, 56(6), 572-9 [email protected] • Weierink L, Jeroen Vermeulen R, Boyd R. Brain structure and execuGve funcGons in children with cerebral palsy: A systemaGc review. Research in Developmental DisabiliGes 201, 34(3) 1678–1688

5 CO-OP in cerebral palsy and brain injury

TOP down CO-OP | Activities

Functional hand splinting and CO-OP in cerebral palsy Michelle Jackman and brain injury: a Iona Novak SPLINTING | Natasha Lannin randomised controlled trial Body Elspeth Froude Structures & Laura Miller Function Claire Galea BOTTOM up

METHOD Functional hand splints

ICF - Body structures intervention/environmental factor

Randomised Controlled Trial Worn during activities to improve function Support joint/s

Splint only CO-OP only Splint + CO-OP [n=15] [n=15] [n=15] COPM GAS + Box & Blocks 2 weeks of intervention ROM

Results Splint + CO-OP Splint only CO-OP only Goal practice COPM Performance A functional hand splint, when Goal practice 7 combined with CO-OP was no

6 more effective than CO-OP alone + (COPM Performance p=0.807) 64% 5

4

3

2

1

0 Baseline Immediately post Rx Follow up 2 months

Splint CO-OP CO-OP + Splint

© Jackman, Novak, Lannin, Froude, MIller 1 CO-OP in cerebral palsy and brain injury

Results

GAS 1 60 CO-OP is more effective than being provided with a splint 50 and practicing goals at home

40 (GAS p=0.010)

30

20

10

0 Baseline Immediately following Rx Follow up 2 months Splint CO-OP CO-OP + Splint CO-OP might be effective for CP & BI

Splints did not provide additional 2 The dose is low 3 benefit to CO-OP

CO-OP = Other task training = GOAL GOAL PLAN PLAN DO DO 15hrs? 40hrs? CHECK = + CHECK

CO-OP only vs CO-OP + splint (COPM p=0.807, GAS p=0.870)

PARENT experience Transferable life skill Best RESPONDERS It’s probably one of • Standard perquisites for CO-OP | Cognitive and language skills I think the big thing is, the best things we’ve she’s walking away with done • Able to set own goals an acronym. A skill: • Able to communicate with the therapist goal, plan, do, check. • Females That’s a big skill… • No comorbidities Transferable

Enjoyment • Physical Disability Severity does NOT predict OUTCOME Global Strategy © Jackman, Novak, Lannin, Froude, MIller 2 CO-OP in cerebral palsy and brain injury

THEME | INTENSITY THEME | MOTIVATION

The child’s personality I think the consistency of it was I think the everyday makes a difference! Setting specific and “just what made it work focus was really a few” goals good. It sort of forced you to do it, there was no putting it off … so it Handing control over to Tiring kept us on track Focus on function – things the child that are real to kids

Hard work

THEME | STEPPING BACK THEME | GROUPS

Not giving him the answers was good … I think he felt he had made all those achievements on his own

I like it. It made me just take that step I don’t think you can back and think discredit what a about things a little group can do for the differently kids We’ve been trained as parents to basically step in and do everything for our kids

© Jackman, Novak, Lannin, Froude, MIller 3 Childhood Movement Disorders Augmenting deep brain stimulation with a cognitive What is Dystonia approach Dystonia is a movement disorder characterised by sustained or intermittent muscle contractions 2 series of N-of-1 trial with replications across causing abnormal, often repetitive, movements, postures, or both. Dystonic children with hyperkinetic movement disorders movements are typically patterned, twisting, and may be tremulous. Dystonia is often initiated or worsened Hortensia Gimeno by voluntary action and associated NIHR Clinical Research Fellow with overflow muscle activation. Albanese et al. 2013 Institute of Psychiatry, Psychology and Neurosciences. King’s College London Complex Motor Disorders Service. Evelina London Children’s Hospital

Dystonia and other HMD

CO-OP ApproachTM

Current management options include to Cognitive Orientation Occupational Performance Surgical Medical daily Deep Brain Stimulation Pharmacological Functional targeted Intrathecal Baclofen Botulinum Toxin intervention potentially available as an adjunct… but paucity of evidence available

CO-OP ApproachTM CO-OP ApproachTM

Cognitive and Motor Learning Theories Everyday Functionally targeted Client Cognitive Functional goals activities Centred Strategies Meta-cognition intervention Methodology CO-OPApproachTM Generalisation

Transfer Inclusion Criteria

HMD post DBS

6-21 years Functionally Client Cognitive Functional goals targeted MACS I-IV intervention Centred Strategies problems with activities of daily living

Methodology Feasibility

CO-OP and DBS in HMD Primary Outcome Measures GMFCS Assessment of motor and MACS BFMDRS BRIEF PQRS GAS PQRS process skills (AMPS) COPM DIS D-KFES COPM PEDI-CAT GAS CFCS Cognitive Ability AMPS ABAS-II Performance Quality Anxiety measures

Rating Scale (PQRS) MRI Electrode position

Blind rated EQ-5D

Environmental Factors Self - Efficacy (SEG-P)

Single Case Experimental Design/ Single Case Experimental Design/ N-of-1 trials N-of-1 trials

= single case SCED/N-of-1 trials STAGE 1 PROOF OF CONCEPT

Expert Therapist FEASIBLE

REPLICATION ACCEPTABLE

EFFICACY n-of-1 + 3 4 N-of-1 with + 5 +6 replication

Single Case Experimental Design

10 9 8 7 6 5 4 3 2 1

BASELINE DURING CO-OP POST CO-OP 3M FOLLOW UP BASELINE DURING CO-OP POST CO-OP 3M FOLLOW UP (Pre CO-OP) INTERVENTION INTERVENTION (AFTER CO-OP) (Pre CO-OP) INTERVENTION INTERVENTION (AFTER CO-OP)

Gimeno et al. Under preparation Gimeno et al. Under preparation

Gross Motor/ Manual Function Refined movements Exercise

Gross Motor/ Exercise MACS I-IV Chosen goals Chosen goals GMFCS I-IV Client-centred Client-centred Manual Function Motivation Motivation Inherited/Idiopathic/ Acquired

Refined Dystonia/Choreoathetosis/ movements Myoclonus

DBS < 1month Gross Motor/ Chosen goals Exercise Client-centred Motivation Manual Function Self-efficacy

Refined movements

Roy et al. Under preparation

Does occupational therapy work?

Roy et al. Under preparation

CO-OP ApproachTM STAGE 1 STAGE 2

Stage 1 Single Case Experimental Design Expert Therapist Occupational Therapists Proof of concept

1 OT N-of-1 with More than 1 replication Multiple 10 children baseline variables 10 Rx sessions EFFICACY EFFECTIVENESS CO-OP ApproachTM

Cognitive Can we augment DBS outcomes? Control of Motor What are the key active Performance ingredients of the intervention?

DBS & CO-OP multi-centre trial?

Can we augment other neuro- modulation techniques?

CO-OP without DBS?

[email protected]