developmental disability presentation version.ppt

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


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


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


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


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


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


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


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



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


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


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


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


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?

developmental disability presentation version.ppt

Health & Medicine

disability health icf

icf model

developmental disabilities

risk factors maternal

types of challenging

purpose of neonatal

break hour

components of health