Sleep and Physical Disability What does the evidence tell us? Sacha Petersen, PhD Candidate, Clinical Nurse Consultant
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1 Sleep and Physical Disability What does the evidence tell us? Sacha Petersen, PhD Candidate, Clinical Nurse Consultant
2 Content Brief overview of why sleep might be an issue for children with and physical disability. A summary of international and Australian evidence that explores sleep quality or quantity for children with physical disability. Demonstrate the impact of poor sleep. Identify the gaps in current knowledge. 2
3 Sleep Disturbance Intrinsic factors Extrinsic factors Behavior Hypervigilance Sleep Physical Disability
4 Sleep can be a silent problem Bad sleep is just part of physical disability Sleep conversations are complex. Does not fit easily into a routine clinic appointment. Lack of sleep science taught across medical/nursing/allied health courses.
5 Published Evidence to Date <20 papers that quantify sleep problems and their causes or impact. 5
6 Overall Prevalence Between 19% 1 and 88% 2 of children with CP or physical disability have sleep problems. A Malaysian study 3 that compared children with CP to their typically developing siblings. 30% of children with cerebral palsy had sleep problems. 5% of the typically developing children had sleep problems. 1 Romeo et al., Ikeda et al Atmawidjaj et al
7 Reasons for night waking Positioning, pain, seizures and continence are the most commonly reported care and comfort reasons for sleep disturbance. Care need linked to sleep concern (number of papers that support link) Anxiety (1) Body position/repositioning (5) Comfort/pain (6) Constipation (1) Continence/toileting (5) Cramps (2)/spasticity (2) Enteral feeding (1) General behaviour and communication (1) Health issues (1) Medication (1) Pressure care (1) Reflux digestion (3) Restless sleep/movement (3) Safety (1) Seizures/epilepsy (6) Sensory Issues (3) Settling routines (1) Sleep environment/temperature (1) 7
8 Impact of sleep problems on children with Physical Disability 8
9 Impact on parents/caregivers Sleep Quality or Quantity One study found 71% of the parents of children with physical disability also had a clinically significant sleep problem 1. Another study 40% of children with physical disability needed overnight attention and 10% needed support five times a night or more 2. From these studies we can conclude: A child with a physical disability who does not sleep well, has a parent that does not sleep well. 1 Tietze et al Hemingsson et al.,
10 Impact on parents/caregivers Quality of life or mental health There is a correlation between poor sleep of mothers and higher depression scores 1. Two studies found that quality of life of parents of children with severe motor impairment significantly affected if their child has sleep problems 2,3. 1 Wayte et al Tietze et al., Zuculo et. al., Bourke-Taylor et. al.,
11 Impact on parents/caregivers Co-Sleeping Parents co-sleeping with their children occurs between 9.2% 1 and 70% 2 amongst parents of children with physical disability. 92% 2 parents who do sleep with their children demonstrated disturbed sleep on a sleep survey tool. 1 Newman et al., Adiga et al.,
12 Impact on parents/caregivers Co-Sleeping Only one study has investigated reasons for co-sleeping it found: One third of parents of children with a motor disability co-slept with their child because of fear of an adverse event; epilepsy, breathing. Two thirds stated it was because of need for special care overnight. Parents reported that co-sleeping had a positive impact on the child s sleep, but a negative impact on the parents. 9.4% of parents said co-sleeping caused conflict between parents. 11% said that co-sleeping caused conflict between parent and child. Newman et al. (2016) 12
13 Hypervigilance A 2012 report by the Victorian Equal Opportunities commission highlighted that night-time vigilance is a risk factor for surrendering a child with disability into care.
14 Australian Research Footer text ipsum lorum 14
15 McCabe 2015 Retrospective review of sleep concerns for a home based sleep service (WA). 16 factors found. Most children and young people had multiple factors. Severity of CP impacted on the type of sleep concerns. 15
16 Bed time stories: An exploratory study of sleep disturbance for children with cerebral palsy and their parents. Commenced 2015 expected completion April 2019
17 Impact of poor sleep Absolutely! From the nurse that weighs them the paediatrician, GPs, everyone I saw everyone and I- everyone would just be like He'll be alright. He'll be normal. He will work it out. How did it feel when people said that? Well, terrible because I don't believe that.. That is...i just can't believe that that is normal or that for me to be for a parent having to be awake for such extended periods of time. Like, maybe another family could have just lost the plot? Maybe? you know what I mean? I don't know. 17
18 Thankyou
19 Acknowledgements The parents who participated in the research. Supervisors: Prof Fiona Newall, Prof Dinah Reddihough, Dr. Adrienne Harvey, Dr. Sally Lima, Royal Children s Hospital League of Former Trainees Pelican Auxiliary RCH Auxiliaries Nurses Memorial Centre Vera Scantlebury Brown Child Welfare Memorial Scholarship Windermere Foundation
20 The Sleep Comfort Map to uncover and explore sleep issues in the home setting Sue McCabe Occupational Therapist PhD Candidate, Edith Cowan University
21 What s sleep got to do with it? True stories. I m getting about 2 hours sleep a night; I think I might crash my car, or something crazy like that (mother of 5y.o. triplets, one who has CP, GMFCS V) Well, I sit beside his bed all night, so when he coughs or chokes I can tilt his head forward and wipe his mouth (father of 18yo son who has CP, GMFCS V) Something s not right; usually I only get up to him about 5 times a night, but lately it s been more than 10 times (76yo mother of 54yo son who has CP, GMFCS III ) Yeah, I m off work for two weeks; chopped the tip off my finger. Shouldn t operate machinery when I m this tired (father of 13 yo daughter who has CP, GMFCS I with autism) sue.mccabe7@gmail.com 21
22 Key points ICF underpins approach to sleep Context is everything home, family, community, culture Community practitioners are already out there, engaging with families in their home settings We need good sleep knowledge, to guide our exploration and resolution of sleep difficulties We need to CONNECT practitioners and specialists and clinics and community for synchronised support 22
23 In the home setting ICF and sleep and every domain of function 23
24 The sleep BEARS B = Bedtime problems E = Excessive daytime behaviours A = Awakenings during the night R = Regularity and duration of sleep (and Routines!) S = Sleep Disordered Breathing (and Safety!) Owens, J. A., & Dalzell, V. (2005). Use of the BEARS sleep screening tool in a pediatric residents continuity clinic: A pilot study. Sleep Medicine, 6(1), sue.mccabe7@gmail.com 24
25 What s behind the BEARS culture, season, environment family, age primary condition, co-morbid conditions daily occupations, activities, habits and routines sue.mccabe7@gmail.com 25
26 We all need to know about SLEEP Importance of sleep, to explore why this matters Circadian factors, to explore environment, rhythms, routines Sleep architecture, to explore and explain the timing of sleep onset and waking events Sleep changes with age, to explore and discuss expectations Sleep disorders, to explore and identify and to know when to refer on Sleep assessment tools, to know how to explore Sleep interventions and resources, to know what can be done 26
27 Sleep information resources 27
28 Sleep information resources 28
29 BEARS to alert We need to listen, observe, explore, describe.. Guided narrative Overview discussion Sleep profile Safety checklist Ipsiroglu, O., McCabe S. EACD 2017 Observe and record Sleep diaries Behaviour logs Day-night activity log Photography Video Actigraphy Focussed measures Pulse oximetry Pressure mapping Pain mapping Temperature Sound Light Link with others Medical Psycho social Teachers Nursing Allied health 29
30 In the home: listen, observe and explore We are concerned about day as well as night, 24/24 If we don t ask, people won t tell us We may need to ask the same question again, and again sue.mccabe7@gmail.com 30
31 In the home, observe A home visit allows you to observe The child The child and family The household The bedroom The bed and mattress and bedding Allow time Feel the child (tone, range of movement, uncontrolled movements) the bed, mattress, pillows, bedding sue.mccabe7@gmail.com 31
32 In the home, explore * be aware of impact on families when we assess, assess, assess sue.mccabe7@gmail.com 32
33 In the home, explore Things that go bump in the night. Videosomnography = extremely important sue.mccabe7@gmail.com 33
34 Mapping sleep comfort 34
35 acne, adenoids, allergies, asthma, bowel obstruction, constipation, dehydration, diabetes, diarrhoea, ear infection, eczema, epilepsy, flu, growing pains, gum disease, hay fever, headache, head-cold, head-lice, hormone changes, hunger, incontinence, indigestion, ingrown toenail, joint pain, medications, migraine, nightmares, obesity, pain, parasomnias, periodic limb movement disorder, pmt, reflux, restless legs syndrome, rhinitis, sinusitis, skin breakdown, sleep disordered breathing, spasm, surgery, thirst, tonsils, uti, vomiting, worms.. 35
36 Explore the calming vs arousing effects of daytime, pre-sleep and sleep-time sensory experiences.. Sounds Movements Deep pressure Touch Smells Visual input 36
37 Habits and routines What we do, and when we do it.. Meals Bath or shower Action play, quiet play Screen time Exercise Therapy sessions Appointments Swimming Riding 37
38 The patterns of change of core body temperature, skin temperature and thermal comfort are essential parts of the timing and rhythms of sleep onset, and sleep maintenance. Bedroom temperature and humidity Bed temperature and humidity Affected by air-flow, air-conditioning, bedding materials, fans, mattress, overlays, positioning equipment, pyjamas, timing and type of shower or bath and food or drink and activity and medications 38
39 Location of the bedroom Light / darkness of bedroom Ambient sounds Clutter Allergens Type of bed Type of mattress Bedding materials sue.mccabe7@gmail.com 39
40 Independent movements Uncontrolled movements Habitual lying positions Painful positions Musculo-skeletal effects Respiratory effects Gastro-intestinal effects Pressure injury Shearing injury Manual handling Safety 40
41 Anxiety Arousal levels Attachment Behaviour Cognition Communication Expectations Friendships Grief Self-regulation 41
42 42
43 Thankyou Families I Clinical colleagues I Research supervisors Research colleagues I CRE-CP
44 References Atmawidjaja RW, Wong SW, Yang WW, Ong LC. Sleep disturbances in Malaysian children with cerebral palsy. Dev Med Child Neurol. 2014;56(7): doi: /dmcn Epub 2014 Feb 16. Bourke-Taylor H, Pallant JF, Law M, Howie L. Relationships between sleep disruptions, health and care responsibilities among mothers of school-aged children with disabilities. J Paediatr Child Health. 2013;49(9): doi: /jpc Epub 2013 Jun 9. Ikeda T, Nagai T, Kato-Nishimura K, Mohri I, Taniike M. Sleep problems in physically disabled children and burden on caregivers. Brain Dev. 2012;34(3): doi: /j.braindev Epub May 23. McCabe SM, Blackmore AM, Abbiss CR, Langdon K, Elliott C. Sleep concerns in children and young people with cerebral palsy in their home setting. Journal of Paediatrics and Child Health. 2015(12):1188. Mörelius E, Hemmingsson H. Parents of children with physical disabilities - perceived health in parents related to the childs sleep problems and need for attention at night. Child Care Health and Development. 2014:412. Newman CJ, O'Regan M, Hensey O. Sleep disorders in children with cerebral palsy. Dev Med Child Neurol. 2006;48(7):564-8.
45 References Petersen S, Reddihough D, Newall F. Assessment of overnight care and comfort needs of children with cerebral palsy compared to typically developing children. A pilot study. Australian College of Children & Young People s Nurses Conference; 24/08/2013; Melbourne, Victoria2013. Romeo DM, Brogna C, Quintiliani M, Baranello G, Pagliano E, Casalino T, et al. Sleep disorders in children with cerebral palsy: neurodevelopmental and behavioral correlates. Sleep Medicine. 2014;15: Tietze AL, Zernikow B, Michel E, Blankenburg M. Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep. Developmental Medicine & Child Neurology. 2014;56(12): p. Victorian Equal Opportunity and Human Rights Commission. Desperate measures: the relinquishment of children with disability into state care in Victoria Carlton, Vic.: Victorian Equal Opportunity and Human Rights Commission; 2012 [cited /12/14]. Available from:
46 References Wayte S, McCaughey E, Holley S, Annaz D, Hill CM. Sleep problems in children with cerebral palsy and their relationship with maternal sleep and depression. Acta Paediatr. 2012;101(6): doi: /j x. Epub 2012 Feb 11. Warouw Atmawidjaja R, Wei Wong S, Wai Yang W, Choo Ong L. Sleep Disturbances in Malaysian children with cerebral palsy. Developmental Medicine and Child Neurology. 2014:5. Zuculo GM, Knap CCF, Pinato L. Correlation between sleep and quality of life in cerebral palsy. Codas. 2014;26(6):
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