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Facilitating the Family in Developmental Disability - A Physiotherapy Perspective

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Title: Facilitating the Family in Developmental Disability - A Physiotherapy Perspective


1
Facilitating the Family in Developmental
Disability -A Physiotherapy Perspective
  • Aoife Bourke, Lonán Hughes,
  • Catriona ODwyer Aideen Shinners

2
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 familys
    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

3
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

4
Website
5
International Classification of Function,
Disability Health
6
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
7
WHO ICF Model
HANDBOOK.htmHandbookpg8
WHO 2001
8
Detection
9
Overview
  • Neonatal assessment
  • Risk factors for developmental disability
  • Formal neonatal assessment
  • Focus on Cerebral Palsy
  • (CP) Autism

10
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

11
Risk Factors
HANDBOOK.htmHandbookpg11
  • Child
  • Gestational age lt37 weeks
  • Birth weight lt2.5kg
  • 5-min Apgar Score lt7
  • Multiple births
  • Presence of a newborn condition
  • Presence of a congenital abnormality
  • Maternal
  • Education level attained
  • Maternal age
  • Marital status
  • Prenatal care
  • Smoking during pregnancy
  • Alcohol intake during pregnancy
  • Maternal medical history
  • Complications of labour/delivery

Chapman et al 2008 Delgado et al 2007
12
Neonatal Assessment
HANDBOOK.htmHandbookpg22
  • 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
13
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
14
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
15
Detection Diagnosis of CP
McMurray et al 2002
16
Detection Diagnosis of Autism
HANDBOOK.htmHandbookpg12
SIGN 2007
17
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

18
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

19
Definite Diagnosis v Uncertain Diagnosis
HANDBOOK.htmHandbookpg10
  • Label
  • Aetiology
  • Prognosis
  • Treatment options
  • Acceptance
  • Social support

Rosenthal et al 2001
20
Family Coping
21
Overview
  • Initial reaction
  • Barriers to family coping
  • Facilitators of family coping

22
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
23
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
24
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
25
Parent Quote
  • . youre suddenly faced with the fact that you
    havent got a normal child, oh, you know, I mean
    its devastating. At the time you sort of grieve
    for this, you think, God this is going to be, I
    mean its a lifelong thing. Its not going to go
    away. Its not going to get better. Shes always
    going to have cerebral palsy.

Piggot et al 2002
26
Initial Reaction
HANDBOOK.htmHandbookpg29
  • 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
27
Four main responses to diagnosis
Heiman 2002
28
  • Task Time

29
Attitudes Effect on Coping
  • Parents felt inundated with negative messages
  • Health Care Professionals provided hopeless
    prognosis
  • Parents 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
30
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 familys experiences change over
    time

Rentinck et al 2006 Taanila et al 2002
31
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

32
Service Provision
  • Family-centred service (FCS) improves coping
    ability
  • Aspects of service provision that influence
    coping
  • Ability to meet unmet needs
  • Providing information re childs 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
33
Social Support
  • Sources
  • Health service
  • Spouse
  • Family
  • Friends
  • Important aspects quality size

Rentinck et al 2006 King et al 1999 Knussen
Sloper 1992
34
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
35
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
36
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
37
Factors Affecting Family Coping
HANDBOOK.htmHandbookpg30
Perry 2004
38
Case Study-Anna
  • As part of the MDT assessment, the psychologist
    social worker carried out initial assessments.
  • The psychologist reported that
  • Annas mothers initial reaction was one of guilt,
    shock confusion
  • Annas mother also admitted to feeling
    overwhelmed
  • The social worker reported Annas 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

39
Case Study-Barry
  • Barry later received a definitive diagnosis of
    autism.
  • Following the MDT assessment the psychologist
    reported that Barrys parents were
  • Relieved to finally have a diagnosis
  • Highly motivated to be involved
  • Barrys familys social situation emerged during
    the MDT assessment as the following
  • Barrys mother gave up her job as a receptionist
    to become a full-time carer
  • Barrys father travels overseas regularly
  • Living in a rural location (70 miles from nearest
    centre)
  • 2 older children
  • Family enjoys outdoor activities

40
Facilitators of Family Coping
HANDBOOK.htmHandbookpg33
  • Multiple intervention approach of
  • Information provision
  • Empowering parents
  • Advice
  • Providing support

Singer et al 2007
41
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 childs condition
  • Daily care info
  • How to carry out treatment programs
  • Workshops or classes for parents

Chambers et al 2001 Lin 2000 Pain 1999
42
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 familys
    efforts

Singer et al 2007 Hastings et al 2005 King et
al 2004
43
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
44
Providing Support
  • Service Provision
  • Facilitate family communication
  • Parent-Parent support groups
  • Respite Care
  • Individual, family or marital counselling

Cowen Reed 2002 Kerr McIntosh 2000
45
Challenging Behaviour
46
Overview
  • Types of challenging behaviours
  • Functions of challenging behaviour
  • Strategies to address challenging behaviour

47
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
48
Challenging Behaviour Developmental Disability
Child Behaviour Problems
Parenting Behaviour
Parental Stress
Hastings 2002
49
Prevalence in Developmental Disability
  • 7 mild disability
  • 14 moderate disability
  • 22 severe disability
  • 33 profound disability
  • 50 66 of people with challenging behaviour
    display gt2 types

Emerson et al 2001 Borthwick-Duffy 1994
50
Types of Challenging Behaviour
HANDBOOK.htmHandbookpg45
  • Self-injurious behaviour
  • Aggressive behaviour
  • Stereotyped behaviour
  • Non-person directed behaviour

SCOPE 2007 Lowe et al 2007
51
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
52
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.

53
Functions of Challenging Behaviour
  • Communication
  • Social Attention
  • Tangibles
  • Escape
  • Sensory

Addison 2008
54
Functions of Challenging Behaviour
Johnston Reicle 1993
55
Adams Allen 2001
56
What to do if CB arises during Rx?
  • Step back from the situation.
  • Ask yourself
  • What is the purpose of the childs behaviour?
  • What caused the behaviour?
  • What is my goal?
  • Is what Im doing helping me to achieve my goal?
  • If not, what should I be doing differently?
  • Consult with parent and psychologist
  • Think about your strategies
  • Form a plan

57
Strategies for Challenging Behaviour
HANDBOOK.htmHandbookpg47
  • 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 childs interests
  • Clear rules effective instructions
  • Modification of stimuli

Machalicek et al 2007 Kern Clemens 2007 Ruef
1998
58
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
59
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
60
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
  • Annas mother reports that these behaviours occur
    during HAP when Anna is tired
  • Strategies
  • Consider Annas interests
  • Give Anna choice of activities
  • Vary the order of activities
  • Positive reinforcement of other behaviour
  • Appointments scheduled earlier in the day
  • Advise Annas mother to allow rest before
    commencing HAP

61
Case Study-Barry
  • Barry now age 5, is demonstrating behaviours of
    head-banging repetitive hand-flapping.
  • CB occurs
  • In therapy when either of Barrys 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

62
Family Involvement
63
Overview
  • Family Involvement
  • Benefits
  • Barriers
  • Facilitators

64
Why involve the family?
  • Parents have more time available to practice
    motor skills with the child

Mahoney Perales 2006 Ketelaar et al 1998
65
Benefits of Family Involvement
  • Children learn new skills in a familiar context
    and environment

Mahoney Perales 2006 Ketelaar et al 1998
66
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
67
Benefits of Family Involvement for Parents
  • Parents
  • Acquire new skills
  • Increase their competence confidence
  • Gain an improved understanding of their childs
    development capacities
  • Appropriate expectations for childs future
  • Realistic goal-setting

Mahoney et al 1999 Ketelaar et al 1998
68
Examining the Evidence for Family Involvement
HANDBOOK.htmHandbookpg55
  • The family unit is recognised as the focus of
    services
  • (The Education of the Handicapped Act Amendments
    1986)
  • Unethical to carry-out RCTs that exclude
    family involvement

69
Barriers to Family Involvement
Siebes et al 2006 DiMatteo 2004 Gavidia-Payne
Stoneman 1997
70
Barriers to Family Involvement
HANDBOOK.htmHandbookpg53
Siebes et al 2006 DiMatteo 2004
Gavidia-Payne Stoneman 1997
71
Home Activity Programs (HAPs)-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 ADLs
  • HAP can sometimes be another stressor for
    care-givers
  • Rone-Adams et al 2004 Ketelaar et al 1998

72
Parent Quote
  • It was hard to do the exercises every day.
    Theres so much else to do-appointments, school,
    work that its 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.

73
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
74
Family Involvement
Coming to Grips
Improvement in childs function
Trust in therapeutic relationship
Breakthrough
? level of knowledge and understanding
Striving to Maximise
Piggott et al 2003
75
Facilitating Family Involvement
76
Class Task
77
Service Strategies for Facilitation
HANDBOOK.htmHandbookpg58
  • 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
78
Therapist Strategies for Facilitation
  • Involve parents in goal-setting decision-making
  • Educate
  • Motivate parents
  • Individualise programme to the
  • familys needs
  • Facilitate family coping
  • Address challenging behaviour

Siebe et al 2006 Kruzich et al 2003 Ketelaar et
al 1998
79
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
80
Individualisation
  • Families are all unique
  • Each family may wish to have a different level of
    involvement
  • Individualization of intervention, based on child
    familys needs priorities
  • Parents as equal participants in decision making
    goal-setting
  • Adapt the program to familys capabilities
  • Incorporate program into familys daily schedule
  • King et al 2004 Ketelaar et al 1998 Wehman
    1998

81
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
82
Kaiser Hancock 2003
83
Case Study-Anna
  • Once Annas mother is coping better from a
    psychological point of view, we want to increase
    her participation by initiating a HAP.
  • Practical difficulties for Annas mother in
    implementing the HAP
  • Resources lack of suitable open space
    equipment (therapy ball wedges)
  • Lack of understanding of condition the childs
    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

84
Case Study-Barry
  • Following the initial Physiotherapy Ax a HAP was
    formulated with Barrys mother.
  • Practical difficulties for Barrys 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

85
Family Involvement
2. Identify Barriers
1. Identify Family Goals
3. Identify Facilitators
6. Modify Plan
4. Develop Plan with Parents
5. Evaluate Goal Progress
86
WHO ICF Model
87
WHO ICF Model
Cerebral Palsy
POOR TRUNK CONTROL
88
WHO ICF Model
Cerebral Palsy
FOOTBALL
89
WHO ICF Model
Autism
SCHOOL
90
Group Work
91
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

92
Thank you for your attention co-operation.
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