1. Sleepwise Addressing sleep disturbance in young children with developmental delay Presented by Annie O’Connell Senior Occupational Therapist Annie.oconnell@dfc.sa.gov.au

3. Need for Sleep

5. Inadequate Sleep Impacts on  Emotional wellbeing  Sensory processing  Learning  Coordination  Behaviour  Family Stress

6. It is essential that health professionals consider sleep when assessing and supporting children with developmental delay and their families. The training of health professionals and development of support services is required at three levels (Stores 2001): 1.Primary care professionals working directly with families/carers in the home or local community. 2.Community or hospital paediatric services. 3.Sleep specialists and sleep clinics.

7. Addressing SD Stores (2001): 1. Home & Community 2.Paediatric Services 3.Sleep Clinics

8. Sleepwise Project  Development of Sleepwise Resource Manual in 2004  Pilot (2004) and ongoing educational workshops for parents/carers  Training of allied health workers in 2005–2009

9. The Sleepwise Approach to Sleep Disturbance in Young Children with Developmental Delay  Workshop 1: Sleep Action: Start two–week sleep diaries  Workshop 2: Sleep Disturbance Action: Score Sleep Disturbance Index Complete sleep interview at home Medical check/referral for specific sleep disorders Assess family readiness  Workshop 3: Strategies to Reduce Sleep Disturbance Action: Compile a Sleep Plan  Ongoing Support Ongoing support over approximately 8–12 weeks from allied health worker

10. Sleepwise A Resource Manual Divided into sections  General information  Workshops 1–3  Guidelines for individual sleep plans  Information booklet for parents  References for A–H workers  Bibliography

11. Sleepwise Manual Icons used as a tip for the presenter   refer to published literature

12. Sleepwise Manual Group Questions For example:

13. Strategies To Reduce Sleep Disturbance 1.Establish a routine 2.Sensory cues/needs 3.Communication cues/level 4.Behavioural  Timetabling of sleep  Change the bedtime  Change bedtime when not asleep  Restrict sleep  Gradual distancing of parents  Ignoring Standard Gradual With parents present  Schedule awakening  Desensitivation

14. Apex Foundation for Research into Intellectual Disability Inc Grant  Sleepwise workshops for parents and carers were held in four regions of metropolitan Adelaide in 2005  Four two-day training for allied health and early childhood workers were held in 2005 and 2006 in Adelaide

15. Results N=26 Ages of children: 1yr 1mth to 7yrs 1mth Diagnosis:  GDD (15)  ASD (6)  Other syndromes (5)

16. Sleepwise study— Sleep disturbance N=23

17. Communication Strategies

18. Sensory Strategies

19. Behavioural Strategies

20. Case Study 2 Shane, a five-year-old boy with a chromosomal syndrome & GDD  Mother attended the Sleepwise workshops in 2009. Sleep disturbance:  Poor settling and early waking (4.30am)  Previous surgery for adenoids and tonsils for breathing problems and snoring  Short sleep hours Baseline:  A two-week sleep diary and sleep interview indicated that Shane took between 15-200 minutes to fall asleep. 10/14 nights less than an hour; 4/14 nights more than an hour. Difficult as crying, leaving room, throwing objects and flicking light switch  Day naps particularly impacted on settling time.  Average Total Sleep time of 9 hours (below age norms)

21. Case Study 2 - Sleep Plan Short-term goal: To fall asleep in own bed within one hour. Long-term goal: To fall asleep in own bed within 30 minutes. To increase total sleep time. Things to do during the day:  Reduce / eliminate day naps (limit to 30 minutes maximum).  Outside active play after school for 1 hour. Bedtime routine:  Set wake-up time at 5.30 - 6.30 a.m. and bedtime 8.30 p.m. for an average of nine hours’ sleep. Aim to increase sleep time once sleep pattern established.  Regular night routine of outside play, dinner, bath at 6.30 pm, TV. Start bed routine at 8 pm with milk, clean teeth then to bed. In bed read story with parent then lights out.

22. Case Study 2 Sensory strategies:  Turn lights out and use a torch with rechargeable batteries while settling to read book (to encourage melatonin).  Give a small massage while in bed and give vibrating pillow as settling Behavioural strategies:  Dad to sit / stand at bedroom door (ignoring with parent’s presence) until Shane asleep. Communication strategies:  A sleep story about the bedtime routine was written with Shane’s name and read each day at least once.  A four-picture visual sequence of the night routine was shown to Shane each night.  Parents used same verbal instruction ‘bedtime’, ‘back to bed’.

23. Case Study 2 Reinforcement: A star was added to Shane’s chart in the morning for ‘great sleeping’ and parents gave lots of praise. Other strategies:  Consider iron, calcium, magnesium supplement for restless legs – discuss with doctor.  Consider melatonin

24. Progress  Week 1: Shane enjoys reading his sleep story. Achieved bedtime at 8.30 p.m. and falling asleep within 30-60 minutes every night. Dad standing at the door. Waking in the morning at 4.30 a.m. 2/9 mornings but generally later than 5.30 am. Decision to start using star chart.  Week 3: Going to bed between 7.30 and 8.30 p.m. and falling asleep within 10 minutes. Waking at 6.30 a.m. Story being very effective. Shane needs the 1-hour play outside after school to assist in sleep. Parents pleased with progress.  Week 12: Established 7.30 p.m. bedtime while on holiday and Shane began to sleep for 12 hours. Continues to go to sleep at 7.30 p.m., settling easily and sleeping on average 11 hours. Short and long term sleep goals achieved.

25. Case Study 3 Hugh, a five-year old boy with Down Syndrome with recurrent respiratory and ear infections. Currently has grommets. Parents report night waking which impacts on daytime behaviour. Hugh about to commence school. Sleep disturbance:  Waking 3+ times every night between 2-4am and then co- sleeping with parents. Often goes back to sleep in parents bed more easily than his own. Baseline:  From Sleep Interview. Hugh’s settling to sleep had recently improved with a consistent bed time and routine, parents giving firm body pressure to reduce body movements and a verbal cue to close his eye. Falls asleep at 7pm within 15 minutes. Parents initially sit on bed and when settled will leave the room

26. Case Study 3 Short term Goal: Hugh to fall asleep by himself Long Term Goal: Hugh to asleep all night Week 1 Phone discussion with parents about sleep. Therapist sent out Sleepwise Booklet and sleep diary Week 2 Home Visit for Sleep Interview and Sleep Plan. Day nap ceased. Requested ongoing medical check for breathing, respiratory infections and restless movements (Mother has restless leg syndrome). Therapist sent sleep story and visual bedtime sequence Week 9 Phone discussion. Hugh had started school. Settling well with parents standing at the bedroom door. Waking 1-2 times a night and co-sleeping.

27. Case Study 3 Sensory strategies discussed: no light, minimal talking, soft pillow at head of bed, pillow wrapped in mum’s pyjamas to tuck into bed, soft doll to cuddle, oversize sheets to tuck in firmly, weighted quilt loaned for trial (mum to experiment with placement of weights and information sheets provided), room heater, all-in-one pyjamas, extra absorbent night time nappy, lavender cream. Behavioural strategies discussed for night waking: take back to bed quickly with minimal talking, provide sensory strategies (if needed) to encourage self soothing, leave room quickly. Positive reinforcement in the morning for staying asleep in his own bed.

28. Case Study 3 Week 11 Phone discussion: Night waking has greatly reduced 1x/night now and re-settles within a few minutes in his own bed. Helpful strategies:  Weighted quilt, large size sheets, pillow roll down the side of his body, all-in-one pyjamas, room heater to create constant warmth and deep touch ‘swaddling’ effect  Consistent predictable routines  Minimal contact and parental presence when waking occurs.  Mother to follow up with medical review to check any possible health concerns that may be influencing night waking.

29. Number of Weeks for Children to Achieve Short ‑ term Sleep Goals Weeks to Achieve Sleep Goal (Average = 7 weeks) Number of Children

30. Outcomes Six or More Months After Workshops

31. Wendt, T (2009)  2005 study, Disability SA, Adelaide  N=10  Ages 23–60 months  3 collection point Before workshops End workshops 6 week follow up  Measures Sleep diary Stages of change measure Parenting Stress Index Sleepwise Knowledge Quiz Sleep Disturbance Index

32. Results (Wendt, 2009)  Significant reduction in parent stress Pre Mean 100.7 (SD=23.7) to post Mean 88.7 (SD=29.2)  Increase in sleep knowledge Pre Mean 16 (SD =3.2) to post Mean 19 (SD=2.42)  Significant reduction in sleep disturbance Index from severe–moderate sleep disturbance to mild Pre Mean 3.8 (SD=2.2) to post Mean 2.0 (SD=1.4)  No change in motivation of parents to address sleep disturbance

33. Austin, C (2008)  2008 study, Monash University, Melbourne  N=7  Ages 30–81 months  Pre and post-measure Child Sleep Habits Questionnaire Developmental Behaviour Checklist—Parent Version Sleep Disturbance Index Caregivers Acceptance of Treatment Survey

34. Results (Austin, 2008)  Significant reduction in total sleep disturbance although scores still in clinically significant range for sleep problems  Significant reduction in problem daytime behaviour  Significant reduction in total sleep index

35. Results (Austin, 2009) Families rated:  acceptability, suitability and relevance of goals highly with a Mean score 31.6 out of possible 35;  preparation, assistance and ability to understand the training and resources highly with Mean score of 18 out of a possible 20;  improvement outcomes and usefulness of program highly with Mean score of 22.4 out of possible 25  ease of implementation, incorporation of parent’s priority in plan development and stressfulness of intervention plan moderately with a Mean of 27.6 out of a possible 35.

36. Sleepwise Training Four two-day training sessions N=73 Workers  Occupational therapists (28)  Social workers (15)  Psychologists (9)  Early childhood & developmental educators (7)  Physiotherapists (6)  Service coordinators (5)  Speech pathologists (3)

37. Sleepwise 2 day Training Day one  Ways to study sleep  Workshops 1-3  Sleep Disturbance for diagnostic groups  Discussions: cosleeping & extinction  quizzes

38. Sleepwise 2 day Training Day two  Present published case studies  Sleep diary analysis  Prepare a sleep plan from sleep diary; sleep interview and sleep index score  Sleep Pursuit game – monitoring progress  Outcomes of Sleepwise programes

39. Sleepwise Training  ½ day introductory course  1 day advanced course

40. Sleepwise Training N=67 Pre and post-training evaluation 12 questions relating to their self-reported knowledge, skill and confidence in Sleepwise Approach (1=poor, 10=good) Paired samples t test Total scores t(66)= 25.09, p<.0005 Eta squared statistics indicated large effect

41. Sleep Scotland  Jane Ansell  Referral service for sleep difficulties in children and youth with disabilities  Training of sleep counsellors across scotland  http://www.sleepscotland.org

42. Summary  SD is highly prevalent and persistent among children with DD; requires prevention and early intervention  Sleepwise is a home/community-based approach  Sig + change following training of allied health workers, maintained  Individual>group intervention

43. Future Directions  Evaluation of Sleepwise for individual and group  Evaluation of Strategies to reduce SD  Facilitate Sleepwise workshops  Review Sleepwise training  Develop statewide program

44. Sleepwise Boyle & Copley 2004

46. References  Mindell, J & Owens, J (2003), A Clinical guide to Pediatric Sleep Diagnosis and Management of Sleep Problems, Philadelphia, PA:Lippincott Williams & Wilkins  Stores, G & Wiggs, L (Eds) (2001), Sleep Disturbance in Children and Adolescents with Disorders of Development: its Significance and Management, Clinics in Developmental Medicine No 155, London: Mac Keith Press  O’Connell, A & Vannan, K (2008), Sleepwise: Addressing sleep disturbance in young children with developmental delay, AJOT 55: 212;-214

47. More information contact: Annie O’Connell annie.oconnell@dfc.sa.gov.au Sleepwise Manual Service SA Online Shop www.service.sa.gov.au $220.00 plus p&p