Educational issues of chronic health impairment Dr Kathy Rowe Royal Children’s Hospital, Melbourne

1. Educational issues of chronic health impairment Dr Kathy Rowe Royal Children’s Hospital, Melbourne AHISA National Pastoral Care Conference- Working with the N-Generation – Dialogue or Denial 26-29 September, 2004 Wesley College

2. Outline • Examples of chronic illness • Effects of chronic illness • Chronic Fatigue Syndrome as an example affecting all areas of concern • Strategies for management • Feedback from young people • Discussion

3. Examples of Chronic ill health • Life-threatening • Malignancy e.g., leukaemia • Cystic Fibrosis • Muscular dystrophy • Potentially life threatening • Chronic asthma • Epilepsy

4. Examples of Chronic ill health • Non-life threatening • Chronic fatigue syndrome • Diabetes • Chronic inflammatory bowel disease • Physical disability • cerebral palsy • spina bifida • juvenile chronic arthritis

5. Effects of chronic ill health • Physical well-being • Pain • Mobility • Fatigue • Concentration/learning difficulties

6. Effects of chronic ill health • Emotional and developmental • on the child • younger child • adolescent • on the family • parents • Siblings • Educational effects

7. Emotional issues • For younger children • dependence • anxiety • general • social • depression • helplessness and powerlessness • transition to adolescence

8. Emotional issues • For adolescents • social anxiety/social skills • autonomy/dependence • confidence in ability/uncertainty about what is required • ‘risk-taking’/extreme caution • poor self image/self esteem • depression/hope • puberty and sexual identity

9. Emotional issues • Parental concerns • cajole and encourage or trust their judgement • defend and excuse or set limits to behaviour • protect or allow to make mistakes • put their own life on hold or ‘get on with life’

10. Educational effects • Delayed or severely interrupted academic progress • increased dependence on others – a sense of ‘loss of control’. • lack of confidence and reduced self image • decreased organisational skills

11. Educational effects • unwillingness to take risks • inability to make decisions • reduced social activity which leads to reduced social and interpersonal skills • expectations for achievement • May have specific cognitive, learning, attentional effects

12. CFS • What are the features in adolescents? • How can it be managed? • What is the outcome? • What do young people think is helpful?

13. Fatigue clinically evaluated unexplained persistent or relapsing 6 months or more new onset not result of ongoing exertion not substantially alleviated by rest substantial reduction in previous levels of occupation, education, social or personal activities Diagnostic criteria CFS (Fukuda et al 1994)

14. Diagnostic criteria CFS (Fukuda et al 1994) • 4 or more of the following - concurrent persistent, did not predate fatigue • impaired short term memory or conc. • sore throat • tender cervical or axillary lymph nodes • muscle pains • multi-joint pains without arthritis • headaches - new type, pattern, severity • unrefreshing sleep • post-exertional malaise lasting more than 24 hrs

16. Symptoms experienced by> 87% of clinic group • prolonged fatigue following minor activity • headache • the need for excessive sleep • loss of ability to concentrate • disturbed sleep • myalgia following minor activity • severe or moderately severe in >70%

17. Experienced by > 70%,moderate-severe > 50% • myalgia after activity • sore throat without coryzal symptoms • tender cervical lymph nodes • feeling of disturbed balance • nausea • abdominal pain • myalgia at rest • experiences of being ‘lost for the word’

18. EBV - Glandular fever - 15% adolescents (70% +ve serology) Cytomegalovirus Varicella Mycoplasma enteroviruses Influenza Ross River Identified ‘triggers’ for CFS

19. Muscle Pain & Fatigue:First-order items & standardized factor loadings Muscle pain (not joint pain) after activity Muscle pain (not joint pain) even when doing nothing MUSCLE PAIN & FATIGUE Excessive muscle fatigue with minor activity Joint pain Prolonged feeling of fatigue after physical activity lasting for hours (or days)

20. Neurocognitive:First-order items & standardized factor loadings Loss of concentrating ability Difficulty with speech - ‘lost for the word’ NEUROCOGNITIVE Memory loss Vivid dreams or nightmares

21. Abdominal, Head & Chest Pain:First-order items & standardized factor loadings Stomach pain Nausea ABDOMINAL, HEAD & CHEST PAIN Headache Recurrent chest pain

22. Neurophysiological:First-order items & standardized factor loadings Recurrent chest pain Feeling of disturbed balance Difficulty in focussing vision Disturbed sleep or disrupted sleep pattern NEURO- PHYSIOLOGICAL Persistent dryness in the eyes or mouth Shortness of breath with minor activity Palpitations (feeling the heart racing) Needing to sleep for long periods

23. Immunological:First-order items & standardized factor loadings Tender glands in the neck Tender glands elsewhere IMMUNOLOGICAL Sore throat without common cold symptoms Repeatedfevers and sweats

24. Chronic Fatigue Syndrome:Second-order CFA standardized solution MUSCLE PAIN & FATIGUE .701 .636 Model Goodness-of-fit Indices: 2 (246)= 33.9; p = 0.999 RMSEA = 0.035; SRMR = 0.01 GFI = 0.996; AGFI = 0.971 .702 ABDOMINAL HEAD & CHEST PAIN .914 NEURO-PHYSIOLOGICAL .710

25. Month of onset of illness

26. Age of onset of CFS (n = 187)

27. Duration of illness in months (until well)(mean 39 months, range 9-108) n=48

28. Management strategies in adolescents • Symptom management • Lifestyle (energy) management over a set period of time eg week • social contact • academic input • physical activity • commitment to attend something on a regular basis • Family and emotional support

29. Management aims • To reduce consequences of chronic illness • loss of social confidence • educational disadvantage • physical de-conditioning • prevaricating about participating in activities

30. Management ofChronic Fatigue Syndrome • Physical Symptoms • headache • sleep disturbance • nausea and dietary disturbance • abdominal pain • fibromyalgia • pain management

31. Common Associations • Depression 27% (20% ‘base rate’) • related to severity and delayed diagnosis • Fibromyalgia 30-40% • rare in adolescents - ?related to inactivity • Dysmenorrhoea X2 baseline level • ‘irritable bowel syndrome’ • not typical symptoms • Anxiety and panic attacks • More common when ‘school’ not working well

32. Strategies for school absence • Housebound students • key role of Visiting Teachers • maintaining social contact • ‘private time’ for student as well as parent • work from school or from Distance Education

33. Strategies for school absence • Getting back into school after prolonged illness • one contact person at school • subject/teacher rather than when felt able to attend • gradual inclusion of social times - recess/ lunchtime • ‘logistics’ of family commitments/ travel/ time of day functioning better

34. Specific issues for year 11 and 12 students • Reduced subject load (quality not quantity) • ‘Special provision’ for assessments • Different educational settings • timetable, travel, attendance • Distance Education/school mix

35. Chronic Fatigue Syndrome - follow upHave you found any professionals helpful? • 12% - None considered helpful • 77% - Paediatrician • 46% - General Practitioner • 17% - Psychologist / School counsellor • 14% - Visiting Teacher • 15% - Naturopath • 11% - massage / acupuncture

36. Chronic Fatigue Syndrome - follow upIn what ways were professionals helpful? • Management strategies • Understanding and support • Treating as ‘whole person’ including emotional aspects and rehabilitation • School liaison • referral and diagnosis • temporary relief (using massage etc)

37. Anything helpful during illness?82% said “yes” • management strategies (30%) • positive outlook • supportive family • ‘pushing themselves’ to try new things • balancing rest periods with gentle exercise

38. Chronic Fatigue Syndrome - follow upWas any information useful? • Information regarding management strategies • Information for families and for teachers regarding the nature of the illness and expectations • reassurance for patient • Strategies for getting back to school and initiating social contact with peers

39. Could anything have been handled better?50% said “yes” • 30% found their encounter with the medical profession frustrating • not believed and many doctors were unaware of the illness. • 20% earlier diagnosis • general ignorance of the illness and lack of understanding of the illness

40. 7 year-follow upof first 100 patients • 62% working or studying full time • 20% more than half time • 18% less than half time • 35% were undertaking or had completed tertiary education • 60% were students • 40% had work, some of which was in addition to study • 2 were neither studying nor employed • 2 had home duties with a baby.

41. Follow up • 10% Distance Education Services • 33% used the Visiting Teacher Service • 15% received a Disability Support Pension • 30% considered that they ‘no longer suffered from CFS’.

42. Chronic illness • Management of the ‘whole’ child • Balance social, educational and physical, emotional aspects • Central role of ‘school’ in well-being • Strategies for inclusion • Other educational options