Facilitating the Family in Developmental Disability - A Physiotherapy Perspective

1. Facilitating the Family in Developmental Disability -A Physiotherapy Perspective Aoife Bourke, Lonán Hughes, Catriona O’Dwyer & 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 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

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.htm#Handbookpg8 WHO 2001

8. Detection &

9. Overview • Neonatal assessment • Risk factors for developmental disability • Formal neonatal assessment • Focus on Cerebral Palsy (CP) & Autism

10. To identify infants at greater risk for developmental disability To allow for periodic developmental screening & for early intervention to optimise outcome Purpose of Neonatal Assessment

11. 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 Risk Factors HANDBOOK.htm#Handbookpg11 Chapman et al 2008; Delgado et al 2007

12. Neonatal Assessment HANDBOOK.htm#Handbookpg22 • Neurological Assessment • Examines muscle tone regulation & postural reflexes • Amiel-Tison • Neurobehavioral Assessment • Examines spontaneous & elicited movement patterns, primitive reflexes & response to auditory & visual stimuli • Neonatal Behavioural Assessment Scale Ohgi et al 2003

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. 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% Neonatal Assessment Adde et al 2007; Hadders-Algra 2001; Cioni et al 1997

15. Detection & Diagnosis of CP McMurray et al 2002

16. HANDBOOK.htm#Handbookpg12 Detection & Diagnosis of Autism 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.htm#Handbookpg10 • 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. 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 Initial Reaction Rentinck et al 2008; Dagenis et al 2006

25. 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

26. Initial Reaction HANDBOOK.htm#Handbookpg29 • Various models have been suggested based on the stages of bereavement • What have parents of a child with a disability lost? • 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 • 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

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 family’s experiences change over time Rentinck et al 2006; Taanila et al 2002

31. 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 Factors Influencing Family Coping

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: 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

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.htm#Handbookpg30 Perry 2004

38. 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

39. 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

40. Facilitators of Family Coping HANDBOOK.htm#Handbookpg33 • 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 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

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 family’s 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 >2 types Emerson et al 2001; Borthwick-Duffy 1994

50. Types of Challenging Behaviour HANDBOOK.htm#Handbookpg45 • Self-injurious behaviour • Aggressive behaviour • Stereotyped behaviour • Non-person directed behaviour SCOPE 2007; Lowe et al 2007