Facilitating the Family in
Developmental Disability A Physiotherapy Perspective
Aoife Bourke, Lonán Hughes,
Catriona O’Dwyer & Aideen Shinners
Learning Outcomes

WHO International Classification of Function, Disability &
Health (ICF)


Detection & Diagnosis



To recognise factors influencing a family’s coping ability
To identify & apply strategies to facilitate family coping
Challenging Behaviour



To increase knowledge of the screening methods for developmental disabilities
Coping


To apply the WHO ICF Model to Physiotherapy practice for developmental
disability
To recognise types of challenging behaviour
To identify & apply strategies to address challenging behaviour
Family Involvement


To recognise barriers to family involvement
To identify & apply strategies to facilitate family involvement
Course Outline

Hour 1:
 WHO
- ICF
 Detection & Diagnosis
 Family Coping
 5 min break

Hour 2:
 Challenging Behaviour
 Family
involvement
 10 min break

Hour 3:
 Group
work
 Questions
Website
International Classification
of Function, Disability & Health
International Classification of
Function, Disability & Health (ICF)


Developed by WHO - 1992-2001.
ICF model:
“recognises disability as a universal human experience …….
shifting the focus from cause to impact ….. takes into account
the social aspects of disability”


Primary function is to code the components of health
and their interactions
Purpose:



Negative
Neutral terms
Expand thinking beyond primary impairments
Moves from medical to bio-psychosocial approach
WHO 2001
WHO ICF Model
HANDBOOK.htm
#Handbookpg8
WHO 2001
Detection &
Overview

Neonatal assessment
 Risk
factors for developmental disability
 Formal neonatal assessment

Focus on Cerebral Palsy
(CP) & Autism
Purpose of Neonatal Assessment

To identify infants at greater
risk for developmental
disability

To allow for periodic
developmental screening &
for early intervention to
optimise outcome
Risk Factors
Maternal:








Education level attained
Maternal age
Marital status
Prenatal care
Smoking during pregnancy
Alcohol intake during
pregnancy
Maternal medical history
Complications of
labour/delivery
HANDBOOK.htm#
Handbookpg11
Child:






Gestational age <37 weeks
Birth weight <2.5kg
5-min Apgar Score <7
Multiple births
Presence of a newborn
condition
Presence of a congenital
abnormality
Chapman et al 2008; Delgado et al 2007
Neonatal Assessment

HANDBOOK.htm#
Handbookpg22
Neurological Assessment
 Examines
muscle tone regulation & postural reflexes
 Amiel-Tison

Neurobehavioral Assessment
 Examines
spontaneous & elicited movement patterns,
primitive reflexes & response to auditory & visual
stimuli
 Neonatal Behavioural Assessment Scale
Ohgi et al 2003
Neonatal Assessment

Medical Inventory
 Medically orientated inventory
 Assesses
risk factors for peri-natal brain injury
 Perinatal Risk Inventory

Neuro-imaging
 MRI
superior to ultrasound due to higher sensitivity
 Abnormal findings on MRI strongly predict adverse neurodevelopmental outcomes at two years of age
Zaramella et al 2008; Mirmiran et al 2004;
Scheiner & Sexton 1991
Neonatal Assessment

Assessment of General Movements (GM)
should be added to traditional neurologic
assessment, neuro-imaging & other tests of
preterm infants for diagnostic & prognostic
purposes.

Definitely abnormal GMs at 2-4 months (i.e.
total absence of fidgety movements) predict CP
with an accuracy of 85-98%
Adde et al 2007; Hadders-Algra 2001; Cioni et al 1997
Detection & Diagnosis of CP
Clinical
Clues
Toe-walking & scissoring of the lower extremities
Decreased rate of head circumference growth
Seizures (?Epilepsy)
Irritability
Handedness before 2 years of age
Persistent primitive reflexes & delay in achieving postural reactions
Formal
Assessment

Diagnostic
Age
Onward
Referral





Complete history
Physical & neurological examination
Additional investigations
Diagnosing mild CP in the early years of life is often unreliable
5.2/1000 children diagnosed with CP at 12 months, incidence at 7
years was 2/1000
Physiotherapist, Speech & Language Therapist, Occupational
Therapist, Psychologist or counsellor, Ophthalmologist, Paediatric
consultant, Gastroenterologist, Nutritionist ,Social Worker,
Orthopaedic consultant
McMurray et al 2002
Detection & Diagnosis of Autism
Clinical Clues
Formal
Assessment
Delay or absence of verbal &/or non-verbal communication
Not responsive to other peoples facial expression/feelings
Lack of pretend play
Does not point at an object to direct another person to look at it
Unusual or repetitive hand or finger mannerisms
Unusual reactions or lack of reaction to sensory stimulation
Disorder of coordination & fine motor skills




Diagnostic
Age
Onward
Referral
HANDBOOK.htm
#Handbookpg12



History taking
Clinical observation/assessment
Contextual & functional information
Individual profiling: OT, Physio, SLT, Audiologist
Age 2-3 years by experienced healthcare professional
<2 years typical autistic behaviour may not be evident
Paediatric consultant, Occupational therapist, Speech & language
therapist, Special needs assistant, Audiologist, Behavioural
psychologist & Physiotherapist
SIGN 2007
Case Study-Anna


Anna presented to the Physiotherapy Department at 9
months with a diagnosis of spastic diplegia (CP)
Child Risk Factors
 Premature
birth: week 32/40
 Birth weight (2,300g)

Maternal Factors
 Left
school at 16; now aged 19
 Continued socialising throughout pregnancy

Neonatal Ax
 Absence
of fidgety movements (4 months)
 Seizures
 Persistence of
primitive reflexes
Case Study-Barry


Barry was referred to the Physiotherapy Department at
age 4
Presenting Complaint
 Balance

Child & Maternal Risk Factors
 None


& fine motor skills deficits.
apparent
Currently undergoing formal MDT Ax
Clinical Clues
 Delay
of verbal & non-verbal communication
 Lack of pretend play
 Unusual & repetitive hand/finger mannerisms
Definite Diagnosis v Uncertain
HANDBOOK.htm#
Diagnosis
Handbookpg10

Label

Aetiology

Prognosis

Treatment options

Acceptance

Social support
Rosenthal et al 2001
Family Coping
Overview

Initial reaction

Barriers to family coping

Facilitators of family coping
Definitions of Coping
Coping:
Cognitive and behavioural efforts to manage specific
external or internal demands (& conflicts between them) that
are appraised as taxing or exceeding the resources of a
person
Family Coping:
Strategies & behaviours aimed at maintaining or
strengthening the stability of the family, obtaining resources
to manage the situation & initiating efforts to resolve the
hardships created by the stressor
Lazarus 1991; McCubbin & McCubbin 1991
Benefits of Parental Coping

Parents with good coping strategies
demonstrate:
 Better personal well-being
 Increased involvement in therapy
 More positive interactions in parent-child
play
 More positive attitudes about their child
 Result: Higher scores on developmental
tests
The family is the immediate
ENVIRONMENT where the child
develops
Boyd 2002
Initial Reaction

Diagnosis of Developmental
Disability:
 One
of the most emotional experiences
for parents
 Recognized
as a crisis event for some
parents that effectively shatters
previously held dreams despite existing
intrinsic doubts and concerns
Rentinck et al 2008; Dagenis et al 2006
Parent Quote
“…. you’re suddenly faced with the fact that you haven’t
got a normal child, oh, you know, I mean it’s
devastating. At the time you sort of grieve for this, you
think, “God this is going to be, I mean it’s a lifelong
thing. It’s not going to go away. It’s not going to get
better. She’s always going to have cerebral palsy.”
Piggot et al 2002
Initial Reaction
HANDBOOK.htm
#Handbookpg29

Various models have been suggested based on the
stages of bereavement

What have parents of a child with a disability lost?
expected ‘perfect’ child
 The ‘normal’ parenting role
 The
Hedderly et al 2003
Four main responses to diagnosis
Response Type
Associated Emotions
Negative Emotional
Response
Depression, anger, shock, denial, fear,
self blame, guilt, sorrow, grief,
confusion, despair, hostility, emotional
breakdown
Negative Physiological
Response
Crying, not eating, cold sweat,
trembling, fear, physical pain and
breakdown
Positive Emotional
Response
Prepared for diagnosis, want to hear
what can be done for the child
Nonspecific Response
Heiman 2002
Task Time
Attitudes & Effect on Coping

Parents felt inundated with negative messages
 Health
Care Professionals provided hopeless prognosis
 Parent’s optimism for the future left them open to an accusation
of ‘denial of reality’
“I knew her condition was serious and her prognosis poor but, to
me, she was my firstborn, beautiful child. Every time I expressed
my joy to the staff at the hospital, they said, `She's denying
reality'. I understood the reality of my child's situation but, for
me, there was another reality”

Parents felt they were not denying the diagnosis, they denied
and defied the verdict that was supposed to go with it
Kearney & Griffin 2001
Assessment of Family Coping

Important to determine if coping process will be
positive or negative following diagnosis

Examine relevant factors in the context of daily life
which include:
 Availability of
internal & external resources & strategies to
cope
 Independent factors

Recognise that family’s experiences change over time
Rentinck et al 2006; Taanila et al 2002
Factors Influencing Family Coping
Availability of resources &
strategies:





Service provision
Social support
Family cohesion &
functioning
Personality variables
Material resources
Independent factors:








Nature & degree of disability
Gender roles
Socio-economic status
Experience of stress & coping
Stage of family life
Ambiguity of diagnosis
Delayed diagnosis
Expectations for child
Service Provision

Family-centred service (FCS) improves coping ability

Aspects of service provision that influence coping:
 Ability
to meet unmet needs
 Providing information re: child’s diagnosis & future, services
available & ways to cope
 Acknowledging the child as valuable
 Acknowledging the important role of the parent
 Providing a centralised service
Lindbald et al 2005; Law et al 2003; Kerr & Macintosh 2000;
King et al 1999; Heaman 1995; Knussen & Sloper 1992
Social Support

Sources:
 Health
service
 Spouse
 Family
 Friends

Important aspects: quality & size
Rentinck et al 2006 ; King et al 1999; Knussen & Sloper 1992
Family Cohesion & Functioning

Co-operation in daily activities leading to a sense of
togetherness

Factors such as:
 Maintaining normality –
maternal employment N.B.
 Marital adjustment
 Spousal
involvement
 Parents having similar initial reactions – optimistic
Taanila et al 2002; Gavidia-Payne & Stoneman 1997; Heaman 1995
Personality Variables

Intrapersonal resources of:
 Strong
sense of coherence
(locus of control)
 Emotional stability
 Extraversion
 Agreeableness
 Type of coping strategy used

Associated with protecting parents of developmentally
disabled children against parenting stress
Vermaes et al 2008; Margalit & Kleitmann 2006;
Rentinck et al 2006; Knussen & Sloper 1992
Independent Factors

Nature & degree of disability:
 Behavioural problems
 Level

of independent physical function
Gender roles:
 Care-giving parent

Socio-economic status:
 Demographic

experiences more stress
factors – determines material resources
Experience of stress & coping:
 Strain
experienced in life events & life satisfaction
Rentinck et al 2006; Gray 2003;
King et al 1999; Heaman 1995
Factors Affecting Family Coping
HANDBOOK.htm
#Handbookpg30
Perry 2004
Case Study-Anna



As part of the MDT assessment, the psychologist & social
worker carried out initial assessments.
The psychologist reported that:
 Anna’s mothers initial reaction was one of guilt, shock &
confusion
 Anna’s mother also admitted to feeling overwhelmed
The social worker reported Anna’s mother social situation as:
 A lone parent – living on 3rd floor apartment of social housing
 Works at the weekends in the local shop
 Grandmother does child-minding at weekend
 No transport but lives near the service centre
Case Study-Barry



Barry later received a definitive diagnosis of autism.
Following the MDT assessment the psychologist reported that
Barry’s parents were:
 Relieved to finally have a diagnosis
 Highly motivated to be involved
Barry’s family’s social situation emerged during the MDT
assessment as the following:
 Barry’s mother gave up her job as a receptionist to become a
full-time carer
 Barry’s father travels overseas regularly
 Living in a rural location (70 miles from nearest centre)
 2 older children
 Family enjoys outdoor activities
Facilitators of Family Coping
HANDBOOK.htm
#Handbookpg33

Multiple intervention approach of:

Information provision

Empowering parents

Advice

Providing support
Singer et al 2007
Information Provision

Delivering the information in a timely & appropriate
manner

Provide information to parents about local
organisations/support services

Providing information in additional areas to parents:
 Medical information about their child’s
 Daily care info
 How to carry out treatment programs

condition
Workshops or classes for parents
Chambers et al 2001; Lin 2000; Pain 1999
Empowering Parents

Promotion of coping skills:
 Problem
solving
 Empowering interactions
using behaviours that are:
Positive & productive
 Competency producing
 Participatory
 Accepting

 Reframing
the situation:
Promote the positive aspects of
the situation
 Provide positive feedback for the family’s efforts

Singer et al 2007; Hastings et al 2005; King et al 2004
Advice

Promote:
 Normal activities & routines within the family
 Emotional activities & openness

Advise parents to accept help from others

Advise parents to seek out community resources

Religious organisations
Boyd 2002; Taanila et al 2002; Tarakeshwar & Pargament 2001
Providing Support

Service Provision

Facilitate family communication

Parent-Parent support groups

Respite Care

Individual, family or marital
counselling
Cowen & Reed 2002; Kerr & McIntosh 2000
Challenging
Behaviour
Overview

Types of challenging behaviours

Functions of challenging behaviour

Strategies to address challenging behaviour
What is Challenging Behaviour (CB)?

Challenging behaviour can be:
 “difficult” or
“problematic” behaviour
 Learned behaviour
 A behaviour which does not have serious
consequences but is disruptive, stressful or upsetting
SCOPE 2007
Challenging Behaviour &
Developmental Disability
Child Behaviour
Problems
Parenting
Parental
Behaviour
Stress
Hastings 2002
Prevalence in Developmental Disability
7% mild disability
 14% moderate disability
 22% severe disability
 33% profound disability


50 – 66% of people with challenging
behaviour display >2 types
Emerson et al 2001; Borthwick-Duffy 1994
Types of Challenging Behaviour
HANDBOOK.htm
#Handbookpg45

Self-injurious behaviour

Aggressive behaviour

Stereotyped behaviour

Non-person directed behaviour
SCOPE 2007; Lowe et al 2007
Risk Markers Associated with
Challenging Behaviour

Self injury:
 Severe/profound
disability, Dx. of autism, deficits in
communication

Aggressive behaviour:
 Male,

Dx. of autism, deficit in communication
Stereotypy:
 Severe/profound

disability
Non-person directed behaviour:
 Dx.
of autism
McClintock et al 2003
Parent Quote
“ Sometimes his behaviour is so bad and
unpredictable that I dread even taking him to
the shop with me. It seems that anything could
set him off.”
Functions of Challenging Behaviour

Communication

Social Attention

Tangibles

Escape

Sensory
Addison 2008
Functions
of Challenging
Functions
of CB
Behaviour
Avoid /
Escape
Obtain
Non-socially
motivated
Socially
motivated
Obtain
attention
Non-socially
motivated
Obtain
objects/
activities
Socially
motivated
Avoid/escape
attention
Avoid/escape
Activities/
objects
Johnston & Reicle 1993
Management of CB
Assessment
Pharmacological
Cognitive Behavioural
Therapy
Pro-Active Behaviour
Change Strategies
Reactive
Behaviour Management
Adams & Allen 2001
What to do if CB arises during Rx?
1.
2.
3.
4.
5.
Step back from the situation.
Ask yourself:
a) What is the purpose of the child’s
behaviour?
b) What caused the behaviour?
c) What is my goal?
d) Is what I’m doing helping me to
achieve my goal?
e) If not, what should I be doing
differently?
Consult with parent and psychologist
Think about your strategies
Form a plan
Strategies for Challenging Behaviour
HANDBOOK.htm
#Handbookpg47

Antecedent manipulations – modifications of
environmental cues prior to challenging behaviour:
 Predictable
schedule
 Alternative modes of task completion – giving child choice
 Task planning – interspersion, difficulty, length & pace
 Incorporating child’s interests
 Clear rules & effective instructions
 Modification of stimuli
Machalicek et al 2007; Kern & Clemens 2007; Ruef 1998
Strategies for Challenging Behaviour

Reinforcement:
 Differential
reinforcement of other behaviour (DRO) &
incompatible behaviour (DRI):
Praise & Reward
 Immediate & specific feedback – verbal cues
 Opportunity for child to respond


Skills acquisition – teaching alternative methods of
communication:
 Picture
exchange system (PES) - Psychologist
 Functional communication training (FCT) - SLT
Machalicek et al 2007; Kern & Clemens 2007; Stormont et al 2005
Strategies for Challenging Behaviour

Change instructional context – changing the delivery of
instruction:
 Embedded
instruction
 Rhythmic entrainment

Self-management:
 Following
set activity schedule
 Recording their own behaviours
Machlicek et al 2007
Case Study-Anna

At age 7 Anna started to demonstrate challenging behaviours temper tantrums & pinching

CB occurs:
 During prolonged repetitive activities, particularly late
afternoon Rx sessions and
 Anna’s mother reports that these behaviours occur during
HAP when Anna is tired

Strategies:
 Consider Anna’s interests
 Give Anna choice of activities
 Vary the order of activities
 Positive reinforcement of other behaviour
 Appointments scheduled earlier in the day
 Advise Anna’s mother to allow rest before commencing HAP
Case Study-Barry

Barry now age 5, is demonstrating behaviours of head-banging &
repetitive hand-flapping.

CB occurs:
 In therapy when either of Barry’s brothers are present and at
home when transitioning from one activity to another
Strategies:
 Routine schedule
 Use of music
 Picture schedule
 Modification of stimuli
 Clear rules & effective instructions
 Alternative modes of task completion
 Liaise with MDT for alternative methods of communication

Family Involvement
Overview

Family Involvement:
 Benefits
 Barriers
 Facilitators
Why involve the family?

Parents have more time available to practice motor
skills with the child
Mahoney & Perales 2006; Ketelaar et al 1998
Benefits of Family Involvement

Children learn new skills in a familiar context and
environment
Mahoney & Perales 2006 ; Ketelaar et al 1998
Benefits of Family Involvement

Improved child behaviour

↓ parental and child stress

↑ adherence to intervention programmes

Improved family functioning

Improved communication

Enhanced parent-child socio-emotional
relationship
A more holistic approach due to family
sharing their knowledge

McConachie & Diggle 2007; Siebes et al 2006;
Rone-Adams et al 2004; Ketelaar et al 1998
Benefits of Family Involvement for
Parents

Parents:
 Acquire
new skills
 Increase
their competence & confidence
 Gain
an improved understanding of their child’s
development & capacities:
Appropriate expectations for child’s future
 Realistic goal-setting

Mahoney et al 1999; Ketelaar et al 1998
Examining the Evidence for Family
HANDBOOK.htm
Involvement
#Handbookpg55

The family unit is recognised as the
focus of services
(The Education of the Handicapped Act
Amendments 1986)
Unethical to carry-out RCT’s that
exclude family involvement
Barriers to Family Involvement
Internal
Factors
Limited
availability
of
a parent
High
levels
of
parental
stress
Family
conflict
Poor
psych.
adjustment
Lower
education
level
Fewer
financial
resources
Siebes et al 2006; DiMatteo 2004; Gavidia-Payne & Stoneman 1997
Barriers to Family Involvement
HANDBOOK.htm
#Handbookpg53
External
Factors
Geographical
constraints
Low
social
support
Continuity
of care
Accessing
services
Satisfaction
with service
Siebes et al 2006; DiMatteo 2004; Gavidia-Payne & Stoneman 1997
Home Activity Programs (HAP’s)Parental Views

Almost all mothers admitted they do not perform the
whole Home Activity Programme
 66%
of caregivers report some level of non-compliance
with their HAP

Mothers only implemented the activities that were
enjoyable and not stressful for the child, mother and
family
 Mothers
did activities that were practical and easy to fit
into ADL’s

HAP can sometimes be another stressor for care-givers
Rone-Adams et al 2004; Ketelaar et al 1998
Parent Quote
“It was hard to do the exercises every day.
There’s so much else to do-appointments,
school, work that it’s hard to fit it all in. When
I was with her, I just wanted to have fun with
her and not worry about stretches or
exercises.”
Stress & HAP Compliance



↑ stress in the lives of parents of children with disabilities
Multiple stressors in the parents lives
Significant relationship between parental stress and
compliance with HAP
As stress ↑, compliance ↓

Therapists responsibilities:
 Instruct care-givers on
HAP
 Identify care-givers with ↑ stress levels
 Recommend ways to ↓ stress
Rone-Adams et al 2004
Family Involvement
Coming to
Grips
Improvement in
child’s function
Breakthrough
↑ level of knowledge
and understanding
Trust in
therapeutic
relationship
Striving to
Maximise
Piggott et al 2003
Facilitating Family Involvement
Strategies
Service
Strategies
Therapist
Strategies
Class Task
Service Strategies for Facilitation

HANDBOOK.htm
#Handbookpg58
Centralising services
 Access to a contact person/ key worker
 Continuity & consistency of service providers

Family centred approach
 Positive staff attitudes about family involvement
 Caregivers recognised as equal participants in the
process

Flexibility with regard to scheduling appointments

Open communication between all MDT members
Siebe et al 2006; Kruzich et al 2003;
Hanna et al 2003; Ketelaar et al 1998
Therapist Strategies for Facilitation

Involve parents in goal-setting & decisionmaking

Educate

Motivate parents

Individualise programme to the
family’s needs

Facilitate family coping

Address challenging behaviour
Siebe et al 2006; Kruzich et al 2003; Ketelaar et al 1998
Education

Education should be individualised


Address significant concerns of parents


Assess parental information needs
Re: the development & future prospects of the child
Ensure co-ordination & consistency of information giving
Providing information to parents:
 Verbal information is preferred by parents for general information:




Avoid overwhelming the family with suggestions
Provide clear & understandable information
Written & pictorial information preferred for HAP
Practical information giving (demonstration):


Empower parents to teach their child new skills
Teach parents problem-solving skills and encourage creativity in
their treatments
Case 2000
Individualisation

Families are all unique

Each family may wish to have a different
level of involvement
Individualization of intervention, based on
child & family’s needs & priorities


Parent’s as equal participants in decision
making & goal-setting

Adapt the program to family’s capabilities

Incorporate program into family’s daily
schedule
King et al 2004; Ketelaar et al 1998; Wehman 1998
Motivation

Enquire about potential barriers to participation

Develop plans to overcome these barriers

Treatments & discussions should offer parents
hope

Collaborative relationship between parent &
therapist using empowering interactions

Info packs

Re: importance of attendance & adherence

Make self-motivation statements to parents

Provide supervision to parents & collaborative
reassessment of goals
Novak & Cusick 2006; Nock & Kazdin 2005; King et al 2004; Case 2000
Kaiser & Hancock 2003
Case Study-Anna

Once Anna’s mother is coping better from a psychological point of view, we
want to increase her participation by initiating a HAP.

Practical difficulties for Anna’s mother in implementing the HAP :
 Resources – lack of suitable open space & equipment (therapy ball &
wedges)
 Lack of understanding of condition & the child’s future

Strategies:
 Education & Motivation  Importance of HAP & benefits
 Oral info & pictorial HAP
 Practical demonstration of HAP (one exercise at a time)
 Empowering mother
 Exercise log book
 Individualising  Ax existing resources at home & suggest innovative alternatives
 Incorporate into ADLs
Case Study-Barry

Following the initial Physiotherapy Ax a HAP was formulated with Barry’s
mother.

Practical difficulties for Barry’s family in implementing the HAP were:
 Time – due to other children
 Accessing service – geographical constraints
 Challenging behaviour
 Lack of spousal support
Strategies:
 Individualisation:
 Consider other family supports eg. siblings
 Incorporate into ADLs
 Education & Motivation:
 Oral information backed up with written information
 Participation of both parents in information sessions
 Teaching parents skills: problem-solving & progression.
 Service:
 Regular contact between therapist and family (by telephone)
 Flexible appointments and open communication within the MDT

Family Involvement
1. Identify
Family Goals
6. Modify
Plan
5. Evaluate Goal
Progress
2. Identify
Barriers
3. Identify
Facilitators
4. Develop Plan
with Parents
WHO ICF Model
WHO ICF Model
Cerebral Palsy
POOR TRUNK
CONTROL
WHO ICF Model
Cerebral Palsy
FOOTBALL
WHO ICF Model
Autism
SCHOOL
Group Work
Conclusion

The family plays an important role in development
disability

Consider the influence of the following on family
involvement:
 Family
Coping
 Challenging Behaviour

The WHO ICF model should be applied to
physiotherapy practice in developmental disability

Website:
Thank you for your
attention & co-operation.
Any Questions?