Facilitating the Family’s Role in Developmental Disability
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Transcript Facilitating the Family’s Role in Developmental Disability
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?