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Developmental Disability Presentation Version.ppt


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Developmental Disability Presentation Version.ppt

  1. 1. Facilitating the Family in Developmental Disability - A Physiotherapy Perspective Aoife Bourke, Lonán Hughes, Catriona O’Dwyer & Aideen Shinners
  2. 2. Learning Outcomes <ul><li>WHO International Classification of Function, Disability & Health (ICF) </li></ul><ul><ul><li>To apply the WHO ICF Model to Physiotherapy practice for developmental disability </li></ul></ul><ul><li>Detection & Diagnosis </li></ul><ul><ul><li>To increase knowledge of the screening methods for developmental disabilities </li></ul></ul><ul><li>Coping </li></ul><ul><ul><li>To recognise factors influencing a family’s coping ability </li></ul></ul><ul><ul><li>To identify & apply strategies to facilitate family coping </li></ul></ul><ul><li>Challenging Behaviour </li></ul><ul><ul><li>To recognise types of challenging behaviour </li></ul></ul><ul><ul><li>To identify & apply strategies to address challenging behaviour </li></ul></ul><ul><li>Family Involvement </li></ul><ul><ul><li>To recognise barriers to family involvement </li></ul></ul><ul><ul><li>To identify & apply strategies to facilitate family involvement </li></ul></ul>
  3. 3. Course Outline <ul><li>Hour 1: </li></ul><ul><ul><li>WHO - ICF </li></ul></ul><ul><ul><li>Detection & Diagnosis </li></ul></ul><ul><ul><li>Family Coping </li></ul></ul><ul><ul><li>5 min break </li></ul></ul><ul><li>Hour 2: </li></ul><ul><ul><li>Challenging Behaviour </li></ul></ul><ul><ul><li>Family involvement </li></ul></ul><ul><ul><li>10 min break </li></ul></ul><ul><li>Hour 3: </li></ul><ul><ul><li>Group work </li></ul></ul><ul><ul><li>Questions </li></ul></ul>
  4. 4. Website
  5. 5. International Classification of Function, Disability & Health
  6. 6. International Classification of Function, Disability & Health (ICF) <ul><li>Developed by WHO - 1992-2001. </li></ul><ul><li>ICF model: </li></ul><ul><ul><li>“ recognises disability as a universal human experience ……. shifting the focus from cause to impact ….. takes into account the social aspects of disability” </li></ul></ul><ul><li>Primary function is to code the components of health and their interactions </li></ul><ul><li>Purpose: </li></ul><ul><ul><ul><li>Negative Neutral terms </li></ul></ul></ul><ul><ul><ul><li>Expand thinking beyond primary impairments </li></ul></ul></ul><ul><ul><ul><li>Moves from medical to bio-psychosocial approach </li></ul></ul></ul>WHO 2001
  7. 7. WHO ICF Model HANDBOOK.htm#Handbookpg8 WHO 2001
  8. 8. Detection &
  9. 9. Overview <ul><li>Neonatal assessment </li></ul><ul><ul><li>Risk factors for developmental disability </li></ul></ul><ul><ul><li>Formal neonatal assessment </li></ul></ul><ul><li>Focus on Cerebral Palsy </li></ul><ul><li>(CP) & Autism </li></ul>
  10. 10. Purpose of Neonatal Assessment <ul><li>To identify infants at greater risk for developmental disability </li></ul><ul><li>To allow for periodic developmental screening & for early intervention to optimise outcome </li></ul>
  11. 11. Risk Factors <ul><li>Maternal: </li></ul><ul><li>Education level attained </li></ul><ul><li>Maternal age </li></ul><ul><li>Marital status </li></ul><ul><li>Prenatal care </li></ul><ul><li>Smoking during pregnancy </li></ul><ul><li>Alcohol intake during pregnancy </li></ul><ul><li>Maternal medical history </li></ul><ul><li>Complications of labour/delivery </li></ul><ul><li>Child: </li></ul><ul><li>Gestational age <37 weeks </li></ul><ul><li>Birth weight <2.5kg </li></ul><ul><li>5-min Apgar Score <7 </li></ul><ul><li>Multiple births </li></ul><ul><li>Presence of a newborn condition </li></ul><ul><li>Presence of a congenital abnormality </li></ul>Chapman et al 2008; Delgado et al 2007 HANDBOOK.htm#Handbookpg11
  12. 12. Neonatal Assessment <ul><li>Neurological Assessment </li></ul><ul><ul><li>Examines muscle tone regulation & postural reflexes </li></ul></ul><ul><ul><li>Amiel-Tison </li></ul></ul><ul><li>Neurobehavioral Assessment </li></ul><ul><ul><li>Examines spontaneous & elicited movement patterns, primitive reflexes & response to auditory & visual stimuli </li></ul></ul><ul><ul><li>Neonatal Behavioural Assessment Scale </li></ul></ul>Ohgi et al 2003 HANDBOOK.htm#Handbookpg22
  13. 13. Neonatal Assessment <ul><li>Medical Inventory </li></ul><ul><ul><li>Medically orientated inventory </li></ul></ul><ul><ul><li>Assesses risk factors for peri-natal brain injury </li></ul></ul><ul><ul><li>Perinatal Risk Inventory </li></ul></ul><ul><li>Neuro-imaging </li></ul><ul><ul><li>MRI superior to ultrasound due to higher sensitivity </li></ul></ul><ul><ul><li>Abnormal findings on MRI strongly predict adverse neuro-developmental outcomes at two years of age </li></ul></ul>Zaramella et al 2008; Mirmiran et al 2004; Scheiner & Sexton 1991
  14. 14. Neonatal Assessment <ul><li>Assessment of General Movements (GM) should be added to traditional neurologic assessment, neuro-imaging & other tests of preterm infants for diagnostic & prognostic purposes. </li></ul><ul><li>Definitely abnormal GMs at 2-4 months (i.e. total absence of fidgety movements) predict CP with an accuracy of 85-98% </li></ul>Adde et al 2007; Hadders-Algra 2001; Cioni et al 1997
  15. 15. Detection & Diagnosis of CP McMurray et al 2002 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 <ul><li>Complete history </li></ul><ul><li>Physical & neurological examination </li></ul><ul><li>Additional investigations </li></ul>Diagnostic Age <ul><li>Diagnosing mild CP in the early years of life is often unreliable </li></ul><ul><li>5.2/1000 children diagnosed with CP at 12 months, incidence at 7 years was 2/1000 </li></ul>Onward Referral <ul><li>Physiotherapist, Speech & Language Therapist, Occupational Therapist, Psychologist or counsellor, Ophthalmologist, Paediatric consultant, Gastroenterologist, Nutritionist ,Social Worker, Orthopaedic consultant </li></ul>
  16. 16. Detection & Diagnosis of Autism SIGN 2007 HANDBOOK.htm#Handbookpg12 Clinical 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 <ul><li>History taking </li></ul><ul><li>Clinical observation/assessment </li></ul><ul><li>Contextual & functional information </li></ul><ul><li>Individual profiling: OT, Physio, SLT, Audiologist </li></ul>Diagnostic Age <ul><li>Age 2-3 years by experienced healthcare professional </li></ul><ul><li><2 years typical autistic behaviour may not be evident </li></ul>Onward Referral <ul><li>Paediatric consultant, Occupational therapist, Speech & language therapist, Special needs assistant, Audiologist, Behavioural psychologist & Physiotherapist </li></ul>
  17. 17. Case Study-Anna <ul><li>Anna presented to the Physiotherapy Department at 9 months with a diagnosis of spastic diplegia (CP) </li></ul><ul><li>Child Risk Factors </li></ul><ul><ul><li>Premature birth: week 32/40 </li></ul></ul><ul><ul><li>Birth weight (2,300g) </li></ul></ul><ul><li>Maternal Factors </li></ul><ul><ul><li>Left school at 16; now aged 19 </li></ul></ul><ul><ul><li>Continued socialising throughout pregnancy </li></ul></ul><ul><li>Neonatal Ax </li></ul><ul><ul><li>Absence of fidgety movements (4 months) </li></ul></ul><ul><ul><li>Seizures </li></ul></ul><ul><ul><li>Persistence of primitive reflexes </li></ul></ul>
  18. 18. Case Study-Barry <ul><li>Barry was referred to the Physiotherapy Department at age 4 </li></ul><ul><li>Presenting Complaint </li></ul><ul><ul><li>Balance & fine motor skills deficits. </li></ul></ul><ul><li>Child & Maternal Risk Factors </li></ul><ul><ul><li>None apparent </li></ul></ul><ul><li>Currently undergoing formal MDT Ax </li></ul><ul><li>Clinical Clues </li></ul><ul><ul><li>Delay of verbal & non-verbal communication </li></ul></ul><ul><ul><li>Lack of pretend play </li></ul></ul><ul><ul><li>Unusual & repetitive hand/finger mannerisms </li></ul></ul>
  19. 19. Definite Diagnosis v Uncertain Diagnosis <ul><li>Label </li></ul><ul><li>Aetiology </li></ul><ul><li>Prognosis </li></ul><ul><li>Treatment options </li></ul><ul><li>Acceptance </li></ul><ul><li>Social support </li></ul>Rosenthal et al 2001 HANDBOOK.htm#Handbookpg10
  20. 20. Family Coping
  21. 21. Overview <ul><li>Initial reaction </li></ul><ul><li>Barriers to family coping </li></ul><ul><li>Facilitators of family coping </li></ul>
  22. 22. Definitions of Coping <ul><li>Coping: </li></ul><ul><li>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 </li></ul><ul><li>Family Coping: </li></ul><ul><li>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 </li></ul>Lazarus 1991; McCubbin & McCubbin 1991
  23. 23. <ul><li>Parents with good coping strategies demonstrate: </li></ul><ul><ul><li>Better personal well-being </li></ul></ul><ul><ul><li>Increased involvement in therapy </li></ul></ul><ul><ul><li>More positive interactions in parent-child play </li></ul></ul><ul><ul><li>More positive attitudes about their child </li></ul></ul><ul><ul><li>Result: Higher scores on developmental tests </li></ul></ul><ul><li>The family is the immediate ENVIRONMENT where the child develops </li></ul>Benefits of Parental Coping Boyd 2002
  24. 24. Initial Reaction <ul><li>Diagnosis of Developmental Disability: </li></ul><ul><ul><li>One of the most emotional experiences for parents </li></ul></ul><ul><ul><li>Recognized as a crisis event for some parents that effectively shatters previously held dreams despite existing intrinsic doubts and concerns </li></ul></ul>Rentinck et al 2008; Dagenis et al 2006
  25. 25. Parent Quote <ul><li>“… . 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.” </li></ul>Piggot et al 2002
  26. 26. Initial Reaction <ul><li>Various models have been suggested based on the stages of bereavement </li></ul><ul><li>What have parents of a child with a disability lost? </li></ul><ul><ul><li>The expected ‘perfect’ child </li></ul></ul><ul><ul><li>The ‘normal’ parenting role </li></ul></ul>Hedderly et al 2003 HANDBOOK.htm#Handbookpg29
  27. 27. Four main responses to diagnosis Heiman 2002 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
  28. 28. <ul><li>Task Time </li></ul>
  29. 29. Attitudes & Effect on Coping <ul><li>Parents felt inundated with negative messages </li></ul><ul><ul><li>Health Care Professionals provided hopeless prognosis </li></ul></ul><ul><ul><li>Parent’s optimism for the future left them open to an accusation of ‘denial of reality’ </li></ul></ul><ul><li>“ 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 ” </li></ul><ul><li>Parents felt they were not denying the diagnosis, they denied and defied the verdict that was supposed to go with it </li></ul>Kearney & Griffin 2001
  30. 30. Assessment of Family Coping <ul><li>Important to determine if coping process will be positive or negative following diagnosis </li></ul><ul><li>Examine relevant factors in the context of daily life which include: </li></ul><ul><ul><li>Availability of internal & external resources & strategies to cope </li></ul></ul><ul><ul><li>Independent factors </li></ul></ul><ul><li>Recognise that family’s experiences change over time </li></ul>Rentinck et al 2006; Taanila et al 2002
  31. 31. Factors Influencing Family Coping <ul><li>Availability of resources & strategies: </li></ul><ul><li>Service provision </li></ul><ul><li>Social support </li></ul><ul><li>Family cohesion & functioning </li></ul><ul><li>Personality variables </li></ul><ul><li>Material resources </li></ul><ul><li>Independent factors: </li></ul><ul><li>Nature & degree of disability </li></ul><ul><li>Gender roles </li></ul><ul><li>Socio-economic status </li></ul><ul><li>Experience of stress & coping </li></ul><ul><li>Stage of family life </li></ul><ul><li>Ambiguity of diagnosis </li></ul><ul><li>Delayed diagnosis </li></ul><ul><li>Expectations for child </li></ul>
  32. 32. Service Provision <ul><li>Family-centred service (FCS) improves coping ability </li></ul><ul><li>Aspects of service provision that influence coping: </li></ul><ul><ul><li>Ability to meet unmet needs </li></ul></ul><ul><ul><li>Providing information re: child’s diagnosis & future, services available & ways to cope </li></ul></ul><ul><ul><li>Acknowledging the child as valuable </li></ul></ul><ul><ul><li>Acknowledging the important role of the parent </li></ul></ul><ul><ul><li>Providing a centralised service </li></ul></ul>Lindbald et al 2005; Law et al 2003; Kerr & Macintosh 2000; King et al 1999; Heaman 1995; Knussen & Sloper 1992
  33. 33. Social Support <ul><li>Sources: </li></ul><ul><ul><li>Health service </li></ul></ul><ul><ul><li>Spouse </li></ul></ul><ul><ul><li>Family </li></ul></ul><ul><ul><li>Friends </li></ul></ul><ul><li>Important aspects: quality & size </li></ul>Rentinck et al 2006 ; King et al 1999; Knussen & Sloper 1992
  34. 34. Family Cohesion & Functioning <ul><li>Co-operation in daily activities leading to a sense of togetherness </li></ul><ul><li>Factors such as: </li></ul><ul><ul><li>Maintaining normality – maternal employment N.B. </li></ul></ul><ul><ul><li>Marital adjustment </li></ul></ul><ul><ul><li>Spousal involvement </li></ul></ul><ul><ul><li>Parents having similar initial reactions – optimistic </li></ul></ul>Taanila et al 2002; Gavidia-Payne & Stoneman 1997; Heaman 1995
  35. 35. Personality Variables <ul><li>Intrapersonal resources of: </li></ul><ul><ul><li>Strong sense of coherence </li></ul></ul><ul><ul><li>(locus of control) </li></ul></ul><ul><ul><li>Emotional stability </li></ul></ul><ul><ul><li>Extraversion </li></ul></ul><ul><ul><li>Agreeableness </li></ul></ul><ul><ul><li>Type of coping strategy used </li></ul></ul><ul><li>Associated with protecting parents of developmentally disabled children against parenting stress </li></ul>Vermaes et al 2008; Margalit & Kleitmann 2006; Rentinck et al 2006; Knussen & Sloper 1992
  36. 36. Independent Factors <ul><li>Nature & degree of disability: </li></ul><ul><ul><li>Behavioural problems </li></ul></ul><ul><ul><li>Level of independent physical function </li></ul></ul><ul><li>Gender roles: </li></ul><ul><ul><li>Care-giving parent experiences more stress </li></ul></ul><ul><li>Socio-economic status: </li></ul><ul><ul><li>Demographic factors – determines material resources </li></ul></ul><ul><li>Experience of stress & coping: </li></ul><ul><ul><li>Strain experienced in life events & life satisfaction </li></ul></ul>Rentinck et al 2006; Gray 2003; King et al 1999; Heaman 1995
  37. 37. Factors Affecting Family Coping Perry 2004 HANDBOOK.htm#Handbookpg30
  38. 38. Case Study-Anna <ul><li>As part of the MDT assessment, the psychologist & social worker carried out initial assessments. </li></ul><ul><li>The psychologist reported that: </li></ul><ul><ul><li>Anna’s mothers initial reaction was one of guilt, shock & confusion </li></ul></ul><ul><ul><li>Anna’s mother also admitted to feeling overwhelmed </li></ul></ul><ul><li>The social worker reported Anna’s mother social situation as: </li></ul><ul><ul><li>A lone parent – living on 3 rd floor apartment of social housing </li></ul></ul><ul><ul><li>Works at the weekends in the local shop </li></ul></ul><ul><ul><li>Grandmother does child-minding at weekend </li></ul></ul><ul><ul><li>No transport but lives near the service centre </li></ul></ul>
  39. 39. Case Study-Barry <ul><li>Barry later received a definitive diagnosis of autism. </li></ul><ul><li>Following the MDT assessment the psychologist reported that Barry’s parents were: </li></ul><ul><ul><li>Relieved to finally have a diagnosis </li></ul></ul><ul><ul><li>Highly motivated to be involved </li></ul></ul><ul><li>Barry’s family’s social situation emerged during the MDT assessment as the following: </li></ul><ul><ul><li>Barry’s mother gave up her job as a receptionist to become a full-time carer </li></ul></ul><ul><ul><li>Barry’s father travels overseas regularly </li></ul></ul><ul><ul><li>Living in a rural location (70 miles from nearest centre) </li></ul></ul><ul><ul><li>2 older children </li></ul></ul><ul><ul><li>Family enjoys outdoor activities </li></ul></ul>
  40. 40. Facilitators of Family Coping <ul><li>Multiple intervention approach of: </li></ul><ul><li>Information provision </li></ul><ul><li>Empowering parents </li></ul><ul><li>Advice </li></ul><ul><li>Providing support </li></ul>Singer et al 2007 HANDBOOK.htm#Handbookpg33
  41. 41. Information Provision <ul><li>Delivering the information in a timely & appropriate manner </li></ul><ul><li>Provide information to parents about local organisations/support services </li></ul><ul><li>Providing information in additional areas to parents: </li></ul><ul><ul><li>Medical information about their child’s condition </li></ul></ul><ul><ul><li>Daily care info </li></ul></ul><ul><ul><li>How to carry out treatment programs </li></ul></ul><ul><li>Workshops or classes for parents </li></ul>Chambers et al 2001; Lin 2000; Pain 1999
  42. 42. Empowering Parents <ul><li>Promotion of coping skills: </li></ul><ul><ul><li>Problem solving </li></ul></ul><ul><ul><li>Empowering interactions using behaviours that are: </li></ul></ul><ul><ul><ul><li>Positive & productive </li></ul></ul></ul><ul><ul><ul><li>Competency producing </li></ul></ul></ul><ul><ul><ul><li>Participatory </li></ul></ul></ul><ul><ul><ul><li>Accepting </li></ul></ul></ul><ul><ul><li>Reframing the situation: </li></ul></ul><ul><ul><ul><li>Promote the positive aspects of </li></ul></ul></ul><ul><ul><ul><li>the situation </li></ul></ul></ul><ul><ul><ul><li>Provide positive feedback for the family’s efforts </li></ul></ul></ul><ul><ul><li>Singer et al 2007; Hastings et al 2005; King et al 2004 </li></ul></ul>
  43. 43. Advice <ul><li>Promote: </li></ul><ul><ul><li>Normal activities & routines within the family </li></ul></ul><ul><ul><li>Emotional activities & openness </li></ul></ul><ul><li>Advise parents to accept help from others </li></ul><ul><li>Advise parents to seek out community resources </li></ul><ul><li>Religious organisations </li></ul>Boyd 2002; Taanila et al 2002; Tarakeshwar & Pargament 2001
  44. 44. Providing Support <ul><li>Service Provision </li></ul><ul><li>Facilitate family communication </li></ul><ul><li>Parent-Parent support groups </li></ul><ul><li>Respite Care </li></ul><ul><li>Individual, family or marital counselling </li></ul>Cowen & Reed 2002; Kerr & McIntosh 2000
  45. 45. Challenging Behaviour
  46. 46. Overview <ul><li>Types of challenging behaviours </li></ul><ul><li>Functions of challenging behaviour </li></ul><ul><li>Strategies to address challenging behaviour </li></ul>
  47. 47. What is Challenging Behaviour (CB)? <ul><li>Challenging behaviour can be: </li></ul><ul><ul><li>“ difficult” or “problematic” behaviour </li></ul></ul><ul><ul><li>Learned behaviour </li></ul></ul><ul><ul><li>A behaviour which does not have serious consequences but is disruptive, stressful or upsetting </li></ul></ul>SCOPE 2007
  48. 48. Challenging Behaviour & Developmental Disability Hastings 2002 Child Behaviour Problems Parenting Behaviour Parental Stress
  49. 49. Prevalence in Developmental Disability <ul><li>7% mild disability </li></ul><ul><li>14% moderate disability </li></ul><ul><li>22% severe disability </li></ul><ul><li>33% profound disability </li></ul><ul><li>50 – 66% of people with challenging behaviour display >2 types </li></ul>Emerson et al 2001; Borthwick-Duffy 1994
  50. 50. Types of Challenging Behaviour <ul><li>Self-injurious behaviour </li></ul><ul><li>Aggressive behaviour </li></ul><ul><li>Stereotyped behaviour </li></ul><ul><li>Non-person directed behaviour </li></ul>SCOPE 2007; Lowe et al 2007 HANDBOOK.htm#Handbookpg45
  51. 51. Risk Markers Associated with Challenging Behaviour <ul><li>Self injury: </li></ul><ul><ul><li>Severe/profound disability, Dx. of autism, deficits in communication </li></ul></ul><ul><li>Aggressive behaviour: </li></ul><ul><ul><li>Male, Dx. of autism, deficit in communication </li></ul></ul><ul><li>Stereotypy: </li></ul><ul><ul><li>Severe/profound disability </li></ul></ul><ul><li>Non-person directed behaviour: </li></ul><ul><ul><li>Dx. of autism </li></ul></ul>McClintock et al 2003
  52. 52. Parent Quote <ul><li>“ 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.” </li></ul>
  53. 53. Functions of Challenging Behaviour <ul><li>Communication </li></ul><ul><li>Social Attention </li></ul><ul><li>Tangibles </li></ul><ul><li>Escape </li></ul><ul><li>Sensory </li></ul>Addison 2008
  54. 54. Johnston & Reicle 1993 Functions of Challenging Behaviour Functions of CB Obtain Avoid / Escape Non-socially motivated Socially motivated Non-socially motivated Socially motivated Obtain attention Obtain objects/ activities Avoid/escape attention Avoid/escape Activities/ objects
  55. 55. Adams & Allen 2001 Management of CB Assessment Pharmacological Cognitive Behavioural Therapy Pro-Active Behaviour Change Strategies Reactive Behaviour Management
  56. 56. What to do if CB arises during Rx? <ul><li>Step back from the situation. </li></ul><ul><li>Ask yourself: </li></ul><ul><ul><li>What is the purpose of the child’s behaviour? </li></ul></ul><ul><ul><li>What caused the behaviour? </li></ul></ul><ul><ul><li>What is my goal? </li></ul></ul><ul><ul><li>Is what I’m doing helping me to achieve my goal? </li></ul></ul><ul><ul><li>If not, what should I be doing differently? </li></ul></ul><ul><li>Consult with parent and psychologist </li></ul><ul><li>Think about your strategies </li></ul><ul><li>Form a plan </li></ul>
  57. 57. Strategies for Challenging Behaviour <ul><li>Antecedent manipulations – modifications of environmental cues prior to challenging behaviour: </li></ul><ul><ul><li>Predictable schedule </li></ul></ul><ul><ul><li>Alternative modes of task completion – giving child choice </li></ul></ul><ul><ul><li>Task planning – interspersion, difficulty, length & pace </li></ul></ul><ul><ul><li>Incorporating child’s interests </li></ul></ul><ul><ul><li>Clear rules & effective instructions </li></ul></ul><ul><ul><li>Modification of stimuli </li></ul></ul>Machalicek et al 2007; Kern & Clemens 2007; Ruef 1998 HANDBOOK.htm#Handbookpg47
  58. 58. Strategies for Challenging Behaviour <ul><li>Reinforcement: </li></ul><ul><ul><li>Differential reinforcement of other behaviour (DRO) & incompatible behaviour (DRI): </li></ul></ul><ul><ul><ul><li>Praise & Reward </li></ul></ul></ul><ul><ul><ul><li>Immediate & specific feedback – verbal cues </li></ul></ul></ul><ul><ul><ul><li>Opportunity for child to respond </li></ul></ul></ul><ul><li>Skills acquisition – teaching alternative methods of communication: </li></ul><ul><ul><li>Picture exchange system (PES) - Psychologist </li></ul></ul><ul><ul><li>Functional communication training (FCT) - SLT </li></ul></ul>Machalicek et al 2007; Kern & Clemens 2007; Stormont et al 2005
  59. 59. Strategies for Challenging Behaviour <ul><li>Change instructional context – changing the delivery of instruction: </li></ul><ul><ul><li>Embedded instruction </li></ul></ul><ul><ul><li>Rhythmic entrainment </li></ul></ul><ul><li>Self-management: </li></ul><ul><ul><li>Following set activity schedule </li></ul></ul><ul><ul><li>Recording their own behaviours </li></ul></ul>Machlicek et al 2007
  60. 60. Case Study-Anna <ul><li>At age 7 Anna started to demonstrate challenging behaviours - temper tantrums & pinching </li></ul><ul><li>CB occurs: </li></ul><ul><ul><li>During prolonged repetitive activities, particularly late afternoon Rx sessions and </li></ul></ul><ul><ul><li>Anna’s mother reports that these behaviours occur during HAP when Anna is tired </li></ul></ul><ul><li>Strategies: </li></ul><ul><ul><li>Consider Anna’s interests </li></ul></ul><ul><ul><li>Give Anna choice of activities </li></ul></ul><ul><ul><li>Vary the order of activities </li></ul></ul><ul><ul><li>Positive reinforcement of other behaviour </li></ul></ul><ul><ul><li>Appointments scheduled earlier in the day </li></ul></ul><ul><ul><li>Advise Anna’s mother to allow rest before commencing HAP </li></ul></ul>
  61. 61. Case Study-Barry <ul><li>Barry now age 5, is demonstrating behaviours of head-banging & repetitive hand-flapping. </li></ul><ul><li>CB occurs: </li></ul><ul><ul><li>In therapy when either of Barry’s brothers are present and at home when transitioning from one activity to another </li></ul></ul><ul><li>Strategies: </li></ul><ul><ul><li>Routine schedule </li></ul></ul><ul><ul><ul><li>Use of music </li></ul></ul></ul><ul><ul><ul><li>Picture schedule </li></ul></ul></ul><ul><ul><li>Modification of stimuli </li></ul></ul><ul><ul><li>Clear rules & effective instructions </li></ul></ul><ul><ul><li>Alternative modes of task completion </li></ul></ul><ul><ul><li>Liaise with MDT for alternative methods of communication </li></ul></ul>
  62. 62. Family Involvement
  63. 63. Overview <ul><li>Family Involvement: </li></ul><ul><ul><li>Benefits </li></ul></ul><ul><ul><li>Barriers </li></ul></ul><ul><ul><li>Facilitators </li></ul></ul>
  64. 64. <ul><li>Parents have more time available to practice motor skills with the child </li></ul>Mahoney & Perales 2006; Ketelaar et al 1998 Why involve the family?
  65. 65. Benefits of Family Involvement <ul><li>Children learn new skills in a familiar context and environment </li></ul>Mahoney & Perales 2006 ; Ketelaar et al 1998
  66. 66. Benefits of Family Involvement <ul><li>Improved child behaviour </li></ul><ul><li>↓ parental and child stress </li></ul><ul><li>↑ adherence to intervention programmes </li></ul><ul><li>Improved family functioning </li></ul><ul><li>Improved communication </li></ul><ul><li>Enhanced parent-child socio-emotional relationship </li></ul><ul><li>A more holistic approach due to family sharing their knowledge </li></ul>McConachie & Diggle 2007; Siebes et al 2006; Rone-Adams et al 2004; Ketelaar et al 1998
  67. 67. Benefits of Family Involvement for Parents <ul><li>Parents: </li></ul><ul><ul><li>Acquire new skills </li></ul></ul><ul><ul><li>Increase their competence & confidence </li></ul></ul><ul><ul><li>Gain an improved understanding of their child’s development & capacities: </li></ul></ul><ul><ul><ul><li>Appropriate expectations for child’s future </li></ul></ul></ul><ul><ul><ul><li>Realistic goal-setting </li></ul></ul></ul>Mahoney et al 1999; Ketelaar et al 1998
  68. 68. Examining the Evidence for Family Involvement <ul><li>The family unit is recognised as the focus of services </li></ul><ul><li>(The Education of the Handicapped Act Amendments 1986) </li></ul><ul><li> Unethical to carry-out RCT’s that exclude family involvement </li></ul>HANDBOOK.htm#Handbookpg55
  69. 69. Barriers to Family Involvement Siebes et al 2006; DiMatteo 2004; Gavidia-Payne & Stoneman 1997 Internal Factors Limited availability of a parent High levels of parental stress Family conflict Poor psych. adjustment Lower education level Fewer financial resources
  70. 70. Barriers to Family Involvement Siebes et al 2006; DiMatteo 2004; Gavidia-Payne & Stoneman 1997 HANDBOOK.htm#Handbookpg53 External Factors Geographical constraints Low social support Continuity of care Accessing services Satisfaction with service
  71. 71. Home Activity Programs (HAP’s)-Parental Views <ul><li>Almost all mothers admitted they do not perform the whole Home Activity Programme </li></ul><ul><ul><li>66% of caregivers report some level of non-compliance with their HAP </li></ul></ul><ul><li>Mothers only implemented the activities that were enjoyable and not stressful for the child, mother and family </li></ul><ul><ul><li>Mothers did activities that were practical and easy to fit into ADL’s </li></ul></ul><ul><li>HAP can sometimes be another stressor for care-givers </li></ul>Rone-Adams et al 2004; Ketelaar et al 1998
  72. 72. Parent Quote <ul><li>“ 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.” </li></ul>
  73. 73. Stress & HAP Compliance <ul><li>↑ stress in the lives of parents of children with disabilities </li></ul><ul><li>Multiple stressors in the parents lives </li></ul><ul><li>Significant relationship between parental stress and compliance with HAP </li></ul><ul><li>Therapists responsibilities: </li></ul><ul><ul><li>Instruct care-givers on HAP </li></ul></ul><ul><ul><li>Identify care-givers with ↑ stress levels </li></ul></ul><ul><ul><li>Recommend ways to ↓ stress </li></ul></ul>As stress ↑, compliance ↓ Rone-Adams et al 2004
  74. 74. 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
  75. 75. Facilitating Family Involvement
  76. 76. Class Task
  77. 77. Service Strategies for Facilitation <ul><li>Centralising services </li></ul><ul><ul><li>Access to a contact person/ key worker </li></ul></ul><ul><ul><li>Continuity & consistency of service providers </li></ul></ul><ul><li>Family centred approach </li></ul><ul><ul><li>Positive staff attitudes about family involvement </li></ul></ul><ul><ul><li>Caregivers recognised as equal participants in the process </li></ul></ul><ul><li>Flexibility with regard to scheduling appointments </li></ul><ul><li>Open communication between all MDT members </li></ul>Siebe et al 2006; Kruzich et al 2003; Hanna et al 2003; Ketelaar et al 1998 HANDBOOK.htm#Handbookpg58
  78. 78. Therapist Strategies for Facilitation <ul><li>Involve parents in goal-setting & decision-making </li></ul><ul><li>Educate </li></ul><ul><li>Motivate parents </li></ul><ul><li>Individualise programme to the </li></ul><ul><li>family’s needs </li></ul><ul><li>Facilitate family coping </li></ul><ul><li>Address challenging behaviour </li></ul>Siebe et al 2006; Kruzich et al 2003; Ketelaar et al 1998
  79. 79. Education <ul><li>Education should be individualised </li></ul><ul><ul><li>Assess parental information needs </li></ul></ul><ul><li>Address significant concerns of parents </li></ul><ul><ul><li>Re: the development & future prospects of the child </li></ul></ul><ul><li>Ensure co-ordination & consistency of information giving </li></ul><ul><li>Providing information to parents: </li></ul><ul><li>Verbal information is preferred by parents for general information: </li></ul><ul><ul><li>Avoid overwhelming the family with suggestions </li></ul></ul><ul><ul><li>Provide clear & understandable information </li></ul></ul><ul><li>Written & pictorial information preferred for HAP </li></ul><ul><li>Practical information giving (demonstration): </li></ul><ul><ul><li>Empower parents to teach their child new skills </li></ul></ul><ul><ul><li>Teach parents problem-solving skills and encourage creativity in their treatments </li></ul></ul>Case 2000
  80. 80. Individualisation <ul><li>Families are all unique </li></ul><ul><li>Each family may wish to have a different level of involvement </li></ul><ul><li>Individualization of intervention, based on child & family’s needs & priorities </li></ul><ul><li>Parent’s as equal participants in decision making & goal-setting </li></ul><ul><li>Adapt the program to family’s capabilities </li></ul><ul><li>Incorporate program into family’s daily schedule </li></ul>King et al 2004; Ketelaar et al 1998; Wehman 1998
  81. 81. Motivation <ul><li>Enquire about potential barriers to participation </li></ul><ul><ul><li>Develop plans to overcome these barriers </li></ul></ul><ul><li>Treatments & discussions should offer parents hope </li></ul><ul><li>Collaborative relationship between parent & therapist using empowering interactions </li></ul><ul><li>Info packs </li></ul><ul><ul><li>Re: importance of attendance & adherence </li></ul></ul><ul><li>Make self-motivation statements to parents </li></ul><ul><li>Provide supervision to parents & collaborative reassessment of goals </li></ul>Novak & Cusick 2006; Nock & Kazdin 2005; King et al 2004; Case 2000
  82. 82. Kaiser & Hancock 2003
  83. 83. Case Study-Anna <ul><li>Once Anna’s mother is coping better from a psychological point of view, we want to increase her participation by initiating a HAP. </li></ul><ul><li>Practical difficulties for Anna’s mother in implementing the HAP : </li></ul><ul><ul><li>Resources – lack of suitable open space & equipment (therapy ball & wedges) </li></ul></ul><ul><ul><li>Lack of understanding of condition & the child’s future </li></ul></ul><ul><li>Strategies: </li></ul><ul><ul><li>Education & Motivation - </li></ul></ul><ul><ul><ul><li>Importance of HAP & benefits </li></ul></ul></ul><ul><ul><ul><li>Oral info & pictorial HAP </li></ul></ul></ul><ul><ul><ul><li>Practical demonstration of HAP (one exercise at a time) </li></ul></ul></ul><ul><ul><ul><li>Empowering mother </li></ul></ul></ul><ul><ul><ul><li>Exercise log book </li></ul></ul></ul><ul><ul><li>Individualising - </li></ul></ul><ul><ul><ul><li>Ax existing resources at home & suggest innovative alternatives </li></ul></ul></ul><ul><ul><ul><li>Incorporate into ADLs </li></ul></ul></ul>
  84. 84. Case Study-Barry <ul><li>Following the initial Physiotherapy Ax a HAP was formulated with Barry’s mother. </li></ul><ul><li>Practical difficulties for Barry’s family in implementing the HAP were: </li></ul><ul><ul><li>Time – due to other children </li></ul></ul><ul><ul><li>Accessing service – geographical constraints </li></ul></ul><ul><ul><li>Challenging behaviour </li></ul></ul><ul><ul><li>Lack of spousal support </li></ul></ul><ul><li>Strategies: </li></ul><ul><ul><li>Individualisation: </li></ul></ul><ul><ul><ul><li>Consider other family supports eg. siblings </li></ul></ul></ul><ul><ul><ul><li>Incorporate into ADLs </li></ul></ul></ul><ul><ul><li>Education & Motivation: </li></ul></ul><ul><ul><ul><li>Oral information backed up with written information </li></ul></ul></ul><ul><ul><ul><li>Participation of both parents in information sessions </li></ul></ul></ul><ul><ul><ul><li>Teaching parents skills: problem-solving & progression. </li></ul></ul></ul><ul><ul><li>Service: </li></ul></ul><ul><ul><ul><li>Regular contact between therapist and family (by telephone) </li></ul></ul></ul><ul><ul><ul><li>Flexible appointments and open communication within the MDT </li></ul></ul></ul>
  85. 85. Family Involvement 1. Identify Family Goals 2. Identify Barriers 3. Identify Facilitators 4. Develop Plan with Parents 5. Evaluate Goal Progress 6. Modify Plan
  86. 86. WHO ICF Model
  87. 87. WHO ICF Model POOR TRUNK CONTROL Cerebral Palsy
  88. 88. WHO ICF Model FOOTBALL Cerebral Palsy
  89. 89. WHO ICF Model SCHOOL Autism
  90. 90. Group Work
  91. 91. Conclusion <ul><li>The family plays an important role in development disability </li></ul><ul><li>Consider the influence of the following on family involvement: </li></ul><ul><ul><li>Family Coping </li></ul></ul><ul><ul><li>Challenging Behaviour </li></ul></ul><ul><li>The WHO ICF model should be applied to physiotherapy practice in developmental disability </li></ul><ul><li>Website: </li></ul>
  92. 92. Thank you for your attention & co-operation. Any Questions?