INCREASING POSITIVE SLEEP BEHAVIORS IN TODDLERS WHO ARE BLIND: THE SIGNIFICANCE OF AUDITORY SLEEP ASSOCIATION STIMULI

Learning your A-B-Zzzzs: Teaching Positive Sleep Behaviors to Young Children who are Blind

Donna Brostek Lee, Ph.D.

1The Role of Sleep . . .Lack of sleep can cause:Changes in moodDecreased motor functionsPoor attention span and performanceHyperactivity/impulsivityEmotional and behavioral changesReduced cognitive functions

(Dahl, 1996a; Dahl, 1999; Gmez et al., 2006; Pilcher & Huffcutt, 1996; Touchette et al., 2007)2The Impact of Insufficient Sleep in Early ChildhoodMost critical is the fact the Touchette et al. (2007) found evidence that there is a critical period in early childhood where the lack of sleep is particularly detrimental to various aspects of development even if sleep duration normalizes later on (p. 1218).

3The Importance of Sleep within the Family ContextReduced sleep quality for a child can result in:Poor paternal and maternal mental healthA negative impact on parental sleep and marital relationshipsCaregiver stress, fatigue, and moodinessCarryover effects to other siblings

(Dahl & El-Sheikh, 2007b; Meijer & van den Witenboer, 2007; Meltzer & Mindell, 2007; Smart & Hiscock, 2007)

4Sleep in AmericaBased on National Sleep Foundation recommendations, infants should receive 14-15 hours of sleep a day, while toddler should receive 12-14 hours.

According to the Sleep in America Poll (2004), 50% of infants and 34% of toddlers are not getting enough sleep! This has serious, lasting implications for todays children!!!

5Sleep and the BlindAll research shows that sleep problems are significantly higher in individuals who are blind or visually impaired than the general population, regardless of age.

The degree of vision loss positively correlates to having a sleep problem, as does the presence of additional disabilities.

(See Chapter I for full references)

6The Rationale for the High RatesSleep is mainly regulated through light perception which occurs when light is passed through the retinohypothalamic tract (RHT) from the retina to the suprachiasmatic nucleus (SCN) of the hypothalamus. The SCN then relays zeitgebers to the pineal glad, triggering the release of melatonin to induce sleep at nighttime.

Thus, the lack of light perception by the retina = inappropriately timed release of melatonin.People can unconsciously receive light through their retina. Nearly all individuals who have had both eye enucleated have the highest rates of sleep problems.7Zeitgebers and Circadian RhythmsSleep is controlled by circadian rhythms which are developed from zeitgebers (German for time givers). Light is the strongest of zeitgebers, but other lesser ones can be mealtimes, activities, and even noise levels.

Zeitgebers play a key role is the daily resetting of the circadian clock to 24-hours.8Free-Running Circadian Rhythms and the BlindAbout 50% of individuals who are blind have free-running circadian rhythms (Morgenthaler, Lee-Chiong, et. al., 2007).

This means those individuals may have days as long as 25-hours, causing periods when ones days and nights are completely switched! 9Example of a Normal Circadian Rhythm in a Toddler(Lapierre & Dumont, 1995, p. 121)

10Example of a Free-Running Circadian Rhythm(Lapierre & Dumont, 1995, p. 121)

11The ProblemBecause sleep problems tend to persist from infancy to later childhood (Mindell, 1993), especially in children with disabilities (Quine, 1991), it is important for the parents of young blind children to be aware of the possibility of such sleep problems and to learn to deal with them effectively (Mindell & De Marco, 1997, p. 37).

Given the impact of sleep problems on a childs development and learning, in addition to negative family implications, early interventions for sleep problems in young children who are blind or visually impaired are critical!

12Intervention TypesThere are two major intervention types for sleep problems in young children who are blind or visually impaired. These include:

Pharmacologic interventions

Behavioral interventions13Pharmacologic InterventionsConsists for exogenous melatonin supplements ranging in dosage from 0.02-10 mgTiming and dosing is very difficultWorks most effectively when initiated with a circadian cycle closely resembling that of the desired pattern.We are decades away from understanding the long term effects, particularly in children who are pre-pubescent. Not regulated by the FDANot always effective Needed throughout ones lifetime Phase response curve14Behavioral InterventionsShould be at the forefront of any plan to address sleep problem.Safest and most cost-effectiveShould start with good sleep hygiene and positive sleep associations, then moving to extinction, graduated extinction, bedtime fading/positive routines, scheduled awakenings, and parental educationFound to be over 80% effective across 53 treatment studies of infants and young children reviewed by the American Academy of Sleep Medicine (Mindell et al., 2006)Much more effective the younger it is introduced, offering little help to adultsEmpirically validated behavioral interventions

15The Importance of Sleep Hygiene & Positive Sleep AssociationsSleep hygiene refers to factors such as optimizing the environment, enforcing positive sleep routines, use of scheduling, and avoiding caffeine in the evening.

Sleep associations are those behaviors that occur at the time of sleep initiation (Mindell & Owens, 2010, p.33). Brief awakenings occur 5-7 times at night (Dahl, 1996b). If the sleep associations that one falls asleep to are no longer present during one of these awakenings, the individual will fully awaken. 16Can Ambient Water Sounds Improve Sleep?Anecdotal evidence of an infant and toddler, both with septo-optic dysplasia, NLP, and no other known disabilities.

Gia Successfully used a bubble tube used for 7 + years

Sam Therapeutic water fountain created a very strong association to nighttime sleep 17The Theories . . . Both young children had polyphasic sleep schedules, thus were undergoing circadian rhythm development Typically weaker zeitgebers became stronger, primary onesLack of other confounding issues such as intellectual limitations and other medical conditionsThe ambient water sound also acts a positive sleep associationNeeds further research with empirical data

18The Approved ProposalTo formally test the effectiveness of a bubble tube (the ambient water sound) in improving sleep problems of three young children who are blind.

19MaterialsThree bubble tubes

Three ActiSleep Monitors which meet the practice parameters of the American Academy of Sleep Medicine (2007)*

ActiLife analysis software program

Sleep logs kept by caregiver(s)

*ActiGraphy is considered more reliable by sleep logs (Ancoli-Israel et al., 2005)20Participant CriteriaThree young children between the ages of 9 and 36-months-old (adjusted for prematurity)A visual acuity of NLP or LP onlySleep problem as identified by caregiver(s) that include one or more of the following: Trouble getting the child to sleep at night, frequent and prolonged nighttime awakenings, and excessive daytime sleepinessNo other additional disabilities or major medical conditions such as: Seizure disorders, chronic ear infections, and gastroesophageal refluxScreened for other common sleep disorders that include: Sleep walking, sleep terrors, confusional arousals, bruxism, bedwetting, obstructive sleep apnea, restless legs syndrome, periodic limb movement disorder, narcolepsy, or insomniaRecruited from colleagues working in early intervention, listservs, and organizations serving the blind/VI21ParticipantsAngela: 9-months-old with Septo-Optic Dysplasia (SOD). Developed diabetes insipidus at the start of the 2nd B phase

Lisa: 34-months-old with SOD with a history of growth hormone deficiencies

Emily: 32-months-old with Microphthalmia, Glaucoma, & SclerocorneaProcedureSingle-subject A-B-A-B designInitial baseline phase (A): Establish current sleep problems/circadian rhythm disorderInitial intervention phase (B): Introduce bubble tubeBaseline reintroduced (A): Removal of bubble tube looking to establish a trend back to the original baselineIntervention reintroduced (B): Reintroduce the bubble tube looking to reestablish the initial B phase

Sleep problem criteria: (a) A time period greater than 30 minutes to fall asleep at night, (b) multiple nighttime awakenings in which the participant does not fall back to sleep within a few minutes, (c) total time awake at night greater than 10 minutes, and (d) more than two occurrences of napping during the day. Or a circadian rhythm disturbance. Minimum 7 days to to diagnose most circadian rhythm disorders according to the ICSD-2.23Independent & Dependent VariablesIndependent variable: Activation of the bubble tube at nighttime

Dependent variables: Time to fall asleepFrequency and duration of nighttime awakeningsFrequency and duration of daytime napsTotal time slept per a 24-hour period24Research Questions???Does the use of a bubble tube at nighttime help young children (9 to 36-months -old) who are blind decrease the time it takes them to fall asleep at night?Does the use of a bubble tube at nighttime help young children (9 to 36-months -old) who are blind decrease the frequency and duration of nighttime awakenings?Does the use of a bubble tube at nighttime help young children (9 to 36-months -old) who are blind decrease the frequency and duration of daytime naps?Does the use of a bubble tube at nighttime help young children (9 to 36-months-old) increase their total time slept per day?

25Angelas Sleep Patterns

26Lisas Sleep Patterns

27Emilys Sleep Patterns

24.7 hour sleep cycle, or 42 minutes later each day.28Social ValidityAll families rated the effectiveness as moderate (3 on a 1 5 scale)AngelaOverall impact of sleep problems at start and end was rated minimalLisaOverall impact of sleep problems at start was rated moderate, no impact at end EmilyOverall impact of sleep problems at start was rated as extremely severe, highly severe at endParents felt it worked the first time and were going to try again during her next sleep cycleParticipant VariablesAngelaDiagnosis of diabetes insipidus likely played a large role in sleep issuesLisaLack of bedtime routine and poor sleep hygieneCo-Slept with parentsEngaged in stimulating activities during nighttime awakeningsPoor parental knowledge on sleepEmilyPossible timing error of when to start bubble tubeImportance of charting sleep patternsLisa: Would fall asleep in places around the home. Important of parental education emphasized by dataEmily: Parents plan to try bubble tube again30Study VariablesDifficulty in finding participantsSignificant commitment by familyParticipants had very different sleep problemsInstrumentation Testing EffectHistoryMaturationParental acceptance of problem

Commitment: Parents mainly communicated through text messages and preferred to download the data themselvesDifferent Sleep Problems: Lack of direct replication, thus hard to build an empirical research base. Almost like 3 case studies. Instrumentation: Monitors were far more accurate than parental sleep logsTesting: Difference between actual results and perceived ones? Angela & Lisa shared room with parents.History: Angela's diabetes Maturation: Lisas extended length of studyAcceptance: No one sought help before now and accepted the problem as a way of life

31Limitations & Future ResearchResearch QuestionsOverlapFuture research needed:Combine auditory sleep association stimuli with parental educationBroadening participant criteria Other sounds including mp3sTiming of bubble tube with children that have free running circadian rhythmsResearch Questions: Hard to generalize with such different sleep problems. Did not ask total percent of time slept at night.Overlap: Takes time to change sleep patterns, thus more time was needed between phasesFuture Research: ABC Study, Match based on sleep problem, allow for varying acuities and other disabilities (VI population is changing)

32Implications for Early Intervention:Lack of sleep directly impacts the success of early intervention services

Importance of working with families and helping them address sleep problems as early as possible

Education for parents on good sleep hygiene and positive sleep associations is critical

Sleep diaries and monitoring sheets are pivotal in identifying the problemWishing You Many Sweet Dreams

Questions???Donna Brostek Lee, Ph.D., TVI, COMS

Western Michigan University TCVI/OMC Program Co-Coordinator

University of Kentucky Assistant Professor Starting August 2012

E-mail: donna.b.lee@uky.edu

BubblesDonna Brostek LeeBubble Tube2012210716.42 - Recording of bubble tube