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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) To apply the WHO ICF Model to Physiotherapy practice for developmental
disability Detection & Diagnosis
To increase knowledge of the screening methods for developmental disabilities Coping
To recognise factors influencing a family’s coping ability To identify & apply strategies to facilitate family coping
Challenging Behaviour 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 assessmentRisk factors for developmental disabilityFormal 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
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
HANDBOOK.htm#Handbookpg11
Neonatal Assessment
Neurological AssessmentExamines muscle tone regulation & postural reflexesAmiel-Tison
Neurobehavioral AssessmentExamines spontaneous & elicited movement patterns,
primitive reflexes & response to auditory & visual stimuli
Neonatal Behavioural Assessment Scale
Ohgi et al 2003
HANDBOOK.htm#Handbookpg22
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 neuro-
developmental 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
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
Complete history Physical & neurological examination Additional investigations
Diagnostic Age
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
Onward Referral
Physiotherapist, Speech & Language Therapist, Occupational Therapist, Psychologist or counsellor, Ophthalmologist, Paediatric consultant, Gastroenterologist, Nutritionist ,Social Worker, Orthopaedic consultant
Detection & Diagnosis of CP
McMurray et al 2002
Detection & Diagnosis of AutismClinical Clues 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
Formal Assessment
History taking Clinical observation/assessment Contextual & functional information Individual profiling: OT, Physio, SLT, Audiologist
Diagnostic Age
Age 2-3 years by experienced healthcare professional <2 years typical autistic behaviour may not be evident
Onward Referral
Paediatric consultant, Occupational therapist, Speech & language therapist, Special needs assistant, Audiologist, Behavioural psychologist & Physiotherapist
SIGN 2007
HANDBOOK.htm#Handbookpg12
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 & fine motor skills deficits.
Child & Maternal Risk Factors None 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 Diagnosis
Label Aetiology Prognosis Treatment options Acceptance Social support
Rosenthal et al 2001
HANDBOOK.htm#Handbookpg10
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
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
Benefits of Parental Coping
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
Various models have been suggested based on the stages of bereavement
What have parents of a child with a disability lost? The expected ‘perfect’ child The ‘normal’ parenting role
Hedderly et al 2003
HANDBOOK.htm#Handbookpg29
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 serviceSpouseFamilyFriends
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 experiences more stress
Socio-economic status: Demographic 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
Perry 2004
HANDBOOK.htm#Handbookpg30
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
Multiple intervention approach of:
Information provision
Empowering parents
Advice
Providing support
Singer et al 2007
HANDBOOK.htm#Handbookpg33
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 condition Daily care info How to carry out treatment programs
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 familyEmotional 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 behaviourA behaviour which does not have serious
consequences but is disruptive, stressful or upsetting
SCOPE 2007
Challenging Behaviour & Developmental Disability
Hastings 2002
Child Behaviour
Problems
Parenting
Behaviour
Parental
Stress
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
Self-injurious behaviour
Aggressive behaviour
Stereotyped behaviour
Non-person directed behaviour
SCOPE 2007; Lowe et al 2007
HANDBOOK.htm#Handbookpg45
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 CB
ObtainAvoid /Escape
Non-socially motivated
Socially motivated
Non-socially motivated
Socially motivated
Obtain attention
Obtain objects/activities
Avoid/escapeattention
Avoid/escapeActivities/
objects
Johnston & Reicle 1993
Functions of Challenging Behaviour
Management of CB
Assessment
PharmacologicalCognitive Behavioural
Therapy
Pro-Active Behaviour Change Strategies
Reactive Behaviour Management Adams & Allen 2001
What to do if CB arises during Rx?1. Step back from the situation.2. 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?3. Consult with parent and psychologist4. Think about your strategies5. Form a plan
Strategies for Challenging Behaviour
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
HANDBOOK.htm#Handbookpg47
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
Parents have more time available to practice motor skills with the child
Mahoney & Perales 2006; Ketelaar et al 1998
Why involve the family?
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 Involvement
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
HANDBOOK.htm#Handbookpg55
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
ExternalFactors
Geographical constraints
Low social
supportContinuity
of care
Accessing services
Satisfaction with service
Barriers to Family Involvement
Siebes et al 2006; DiMatteo 2004; Gavidia-Payne & Stoneman 1997
HANDBOOK.htm#Handbookpg53
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
Therapists responsibilities: Instruct care-givers on HAP Identify care-givers with ↑ stress levels Recommend ways to ↓ stress
As stress ↑, compliance ↓
Rone-Adams et al 2004
Family Involvement
Coming to Grips
Striving to Maximise
Breakthrough
Improvement in child’s function
↑ level of knowledge and understanding
Trust in therapeutic relationship
Piggott et al 2003
Facilitating Family Involvement
Class Task
Service Strategies for Facilitation
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
HANDBOOK.htm#Handbookpg58
Therapist Strategies for Facilitation
Involve parents in goal-setting & decision-making
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
Assess parental information needs Address significant concerns of parents
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
1. Identify Family Goals
2. Identify Barriers
3. Identify Facilitators
4. Develop Plan with Parents
5. Evaluate Goal Progress
6. Modify Plan
Family Involvement
WHO ICF Model
WHO ICF Model
POOR TRUNK CONTROL
Cerebral Palsy
WHO ICF Model
FOOTBALL
Cerebral Palsy
WHO ICF Model
SCHOOL
Autism
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?