Princess Margaret Hospital for Children

The Paediatric ABI Service

Moving Towards Comprehensive Psychosocial

Care

Unique Aspects In Western Australia

Talk Outline

Orientation to the Service

Case Presentation

New Initiatives

The “Participate” Study

Consumer Involvement

Metacognitive Cognitive Intervention

A word from Joe

What we cover:

Approx 1700km

Approx 3500km

ABI CPMS EI NeuroSpinal

RehabiRehab

Paediatric Rehabilitation: WA

Clinical Research

Education and Training

30 new referrals per year

150 active patients

Patient X

30 new referrals per year

150 active patients

Patient X

World Health Organisation

International Classification of

Functioning, Disability and Health (ICF) 1

1World Health Organisation, 2000

NEJM March 2012 *

Clinical Pathway:

Referral

to ABI

Service

Intensive

In-patient

Rehabilitation

ABI Outpatient

Service

Transition

to Adult

Services

PMH Based

THERAPY

(Specialized ABI)

Community Based

THERAPY

eg Spasticity

Management,

I-rehab

Psychosocial Support

OTHER REHAB

PROGRAMS

Team Composition FTE

Medical 2.0

Ward nursing prn

Senior Liaison Nurse 0.65

Speech Therapy 0.7

Physiotherapy 0.6

Occupational Therapy 0.8

Case Management 0.6

Social Work 0.4

Community Mental Health Nurse 0.5

Neuropsychology 0.4

Clinical Psychology 0.8

School Liaison Teacher 0.5

Therapy Assistant 0.6

Dietician 0.05

Admin Support 1.0

ABI Outcome

PREDICTORS24 and 72 Hour GCS

Length of coma

PTA

Injury type / ICP

Brain Imaging

Age

Pre injury child and family

functioning

OUTCOME

Cognitive

Emotional

Behavioural

Physical

Family

Child

Community

ABI – Family outcome

Relatives subjective burden has been shown to increase from 3 months to 5 years with no reduction at 7 years .Brooks 1991

Clinically significant anxiety and depression is evident in at least 25-30% of relatives. Kreutzer 1994, Livingston 1985, Ponsford 2003

Parental psychological functioning 5 years after paediatric ABI -Most parents meet the DSMIV criteria for traumatic syndrome Boissel A 2004

The deterioration in mental health of families can be progressive and long term. Seyone 2007

Meeting Mental Health Needs of Families

Best management of mental health problems occurs within the natural setting of a child’s family

England & Cole, 1992.

This model of service allows for engagement of more complex

families

Worley, 1997 .

Treat and support children/ adolescents with a mental health

problem

Support families/carers

Work independently in community setting

Work in a multidisciplinary team

CMHN

Individual services in the home

Group services in the community

CMHN

Community Mental Health Nursing

Community Mental Health Nurse4 month PILOT

8 new cases ( prioritised to most complex initially )

53 clinical sessions of which 46 home visits

Average amount of clinical sessions per referral – 6.4

Average length of clinical sessions – 73 min.

Average travel time per clinical session – 66 min.

Not at Home – 2 /46 visits.

30% of home visits evening. (flexibility of work practices )

CMHN Pilot Analysis:

64 % ( 9 of 14) of parent(s) of children on caseload, had significant mental health problem.

e.g. PTSD, Depression, Anxiety.

7 of 8 of index patients have complex behavioral & emotional problems,

3 of 8 families assessed had siblings with mental health problems.

Increased from 0.5FTE to Current 1.0FTE

Qualitative research with families done as follow up.

Case Presentation

Wiluna

Jigalong

Leonora

Kalgoorlie

JB 14 year old male

Initial presentation Jan 2014

Past history of solvent abuse (petrol)

Presenting features

Vomiting

Severe headache

Ataxic but ambulant with assistance

L) unilateral cranial nerve palsies:

Cranial nerve VI: lateral eye

deviation

Cranial nerve VII: facial nerve

(facial droop)

MRI

Differential Diagnoses:

?? infective, neoplastic, toxic, de-myelinating condition, vascular, inflammatory

Continued Deterioration:

Drowsy

Dysphagia & Dysphasia

Visual impairment

Left sided paralysis

Inability to walk and transfer

Seizures

Altered respiratory status

Transferred to PICU

MRI lesion progression

Day 4 Sub-occipital biopsy of

cerebellar lesion

Day 8 Confirmed

NEUROMELIODOSIS

(positive Serology & PCR on

Biopsy)

Commenced on IV meropenem and oral

cotrimoxazole

Distribution

Endemic in Northern Australia and SE Asia

Epidemiology Melioidosis in Australia

0 10 20 30 40 50 60

Neurological 3%

Septic Arthritis

No focus

Skin

Genitourinary

Pneumonia

540 cases of Melioidosis in Darwin

% of presentationsCurrie et al. 2010

First 3 months

Limited ability to participate in early rehab

Pain issues with any movement

Ongoing medical instability,

? Survival chances

Unknown prognosis

Functional Independence Measure:

WeeFIM©

Ordinal scale for each domain from 1-7

7 = complete independence

1 = total assistance

Highest total score 126 Equates to the normal developmental ability of a 7 year old

(MSALL, reference)

Self care

• Eating

• Grooming

• Bathing

• Dressing –upper body

• Dressing –lower body

• Toileting

Sphincter control

• Bladder management

• Bowel management

Transfers

• Transfers –chair / wheelchair

• Transfers –toilet

• Transfers –tub, shower

Locomotion

• Locomotion –walk, wheelchair, crawl

• Locomotion -stairs

Communication

• Comprehension

• Expression

Social cognition

• Social interaction

• Problem solving

• Memory

Admission

Total assistance

6 months

9 months

55

47

18

WeeFIM© scores?

Prognosis Unknown

Step wise vs gradual progressive recovery

Ongoing active lesions

No existing literature on rehab outcomes

Barriers & Facilitators

CULTURE

COMMUNICATION

MENTAL HEALTH

MEDICAL

MANAGEMENT/

FATIGUE

ENVIRONMENT

THERAPY

FUNCTIONAL

INDEPENDENCE

Barriers & Facilitators

CULTURE

COMMUNICATION

MENTAL HEALTH

MEDICAL

MANAGEMENT/FATIGUE

ENVIRONMENT

THERAPY

DELIVERY

Connection to Country

Distance from Home

Healing & Recovery Beliefs

Age at onset of illness

Barriers & Facilitators

CULTURE

COMMUNICATION

FATIGUE

MEDICAL

MANAGEMENT

ENVIRONMENT

THERAPY

Connection to Country

Distance from Home

Healing & Recovery Beliefs

Age at onset of illness

Barriers & Facilitators

CULTURE

COMMUNICATION

MENTAL HEALTH

MEDICAL

MANAGEMENT

ENVIRONMENT

THERAPY

Typing vs Eye Gaze vs Oral

Communication

Informal cognition assessment

Goal Setting

Discharge planning

Barriers & Facilitators

CULTURE

COMMUNICATION

MENTAL HEALTH

MEDICAL

MANAGEMENT/FATIGUE

ENVIRONMENT

THERAPY

Family

Family

Family

Barriers & Facilitators

CULTURE

COMMUNICATION

FATIGUE

MEDICAL

MANAGEMENT

ENVIRONMENT

THERAPY

Antibiotics

Sinemet

Spasticity Management

Bowel and Bladder

Weekly Timetable

Strict bed rest periods

Effect of Sinemet on Gait Training

August 2014 September 2014

Barriers & Facilitators

CULTURE

COMMUNICATION

MENTAL HEALTH

MEDICAL

MANAGEMENT

ENVIRONMENT

THERAPY

City vs Country

Acute neuro vs

Adolescent ward

Hydrotherapy

Videoconferencing

Respite week in Leonora

Barriers & Facilitators

CULTURE

COMMUNICATION

MENTAL HEALTH

MEDICAL

MANAGEMENT

ENVIRONMENT

THERAPY

Flexible & Supportive

Goal Directed

Patient Centered

Carer Training

Discharge Planning

Linking with community teams

“We feel that when he was home recently he was a different person with lots of family visiting and lots of laughing”

“The most important thing for us is getting him out of this hospital and closer to home”

“We know that our family can do a lot to help heal his body and his spirit”

“There’s nothing more in Perth for him, send us home”

Discharge Issues

Formal service and support availability

Transport access

Access to rehabilitation team

and paediatricians

Housing & family

2 Phases

1. Kalgoorlie Hospital

2. Leonora

Acknowledgements

Dr Kate Langdon

Dr Sam Kaiser

Megan White (PT)

Cheraine Connell (ST)

Jacquie Hunt (OT)

Kat Broad (social work)

Alana Loo (Aboriginal Liaison and Suppot)

Thank you

New

Psychosocial

Initiatives

Beitostølen

Beitostolen Healthsports Centre (BHC)

Uniquely Norwegian program

International leader in Adapted Physical Activity

Recognised as an essential rehabilitation service

Mission: To assist individuals with disabilities achieve optimal functional

independence and a better quality of life through adapted physical, social and

cultural activities.

The Participate Study:Preparing children with Acquired Brain Injury for integration

into community recreation

and leisure activity.

Claire Willis BSc.(Hons) AEP ESSAM

PhD Candidate

Needs Assessment:

Local environment analysis (WA)

International model analysis (BHC)

Findings of needs assessment:

Model development

Intervention framework

Participation intervention

The ‘Participate’ Study: Preparing children with Acquired Brain Injury for

integration into community recreation and leisure activity.

Needs Assessment:

Local environment analysis (WA)

International model analysis (BHC)

Findings of needs assessment:

Model development

Intervention framework

Participation intervention

The ‘Participate’ Study: Preparing children with Acquired Brain Injury for

integration into community recreation and leisure activity.

S

T

E

E

R

I

N

G

G

R

O

U

P

Significance

“I was surprised you were interested in what a

mother has to say about this” - Parent

Study 1:

To identify the most significant barriers and

facilitators to participation in community activities

in children with an ABI

Methods:

Q-sort methodology

Pilot Program: Metacognitive Clinical Intervention

for Adolescents with Acquired Brain Injury

Collaboration between Princess Margaret Hospital and the School of Psychology at the University of WA

PMH staff

Dept. of Paediatric Rehabilitation

Shew-Lee Lee (Senior Clinical Psychologist)

Peter Clissa (Senior Clinical Psychologist)

Dr Jonson Moyle (Senior Clinical Neuropsychologist)

UWA staff/students

School of Psychology

Prof. Carmela Pestel

Prof. Michael Weinborn

Michelle Olaithe (student – MPsych (Clinical) / PhD)

Simone Fernandez (student – MPsych (Clin Neuro) / PhD)

Amanda Ng (student – MPsych (Clin Neuro) / PhD

Elise Hartley (student – MPsych (Clinical) / PhD)

Metacognition

“Cognition about cognition” (Shea et al 2014)

Frequently disrupted following ABI in children

and adolescents

Metacognitive training aims to teach patients to:

-self regulate thoughts and actions

-self monitor thoughts during activities

-learn strategies that improve control of ones

learning and behaviour

Patient selection

Adolescents 14 years and older

At least 2 years post mod/severe ABI

Difficulties with Executive Functions as

observed by clinical staff at PMH

Live in Metropolitan region

Project TimelinePhase 1- August 2014 Parent Information session

Phase 2- August 2014 Baseline Assessments Psychological and

neuropsychological

Phase 3- Sept 2014 Assessment feedback and

goal setting

Setting up Goal attainment

scale

GAS

Phase 4- Sept 2014 Therapy Formulation Determining individualized

therapeutic interventions

Phase 5- from Sept 2014 Intervention Period 6-8 weeks

Phase 6 – Nov 2014

Follow up

Follow-up

Phase 7- May 2015 6 month Follow-up

Phase 8- June 2015 Final write-up and reporting