Behavioural treatment for sleep problems in children with severe learning disabilities and challenging daytime behaviour: Effect on sleep patterns of mother and child

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Children with sleep problems present serious management problems to their parents. Such children are also more likely to have additional problems, behavioural disturbance being particularly common. This randomized controlled trial of behavioural
  J. Sleep Res.  (1998)  7 , 119–126 Behavioural treatment for sleep problems in children withsevere learning disabilities and challenging daytime behaviour:E ff  ect on sleep patterns of mother and child L U C I W I G G S and G R E G O RY S TO R E S University of Oxford Section of Child and Adolescent Psychiatry, Park Hospital for Children, Headington, Oxford, UKAccepted in revised form 30 March 1998; received 17 July 1997 SUMMARY  Children with sleep problems present serious management problems to their parents.Suchchildrenarealsomorelikelytohaveadditionalproblems,behaviouraldisturbancebeing particularly common. This randomized controlled trial of behaviouralinterventions for the children’s sleep problems was conducted to explore the e ffi cacyand mechanisms of treatment in children with the most extreme forms of problems:severe learning disabilities, severe sleep problems and severe daytime challengingbehaviour.Fifteen index families received behavioural advice for the child’s sleep problem andwere compared with 15 matched controls who received no such advice. Repeatassessments of the children’s and mothers’ sleep were made by parental report as wellas actometry. Objective changes in the children’s sleep quality and quantity were notseen after treatment. However, mothers in the treatment group reported improvementsinthechildren’ssleepproblemsandhadanincreasedsleepingtimethemselvesfollowingtreatment.The results indicate that sleep problems can be successfully treated in this group of children, although the mechanisms of treatment may not be as direct as supposed.This has implications for understanding of sleep problems in children with learningdisabilities and also for clinical practice, when considering ways of o ff  ering help tothese highly ‘challenged’ families.   actometry, behavioural treatment, challenging behaviour, sleep INTRODUCTION  Behavioural interventions have been used successfully totreat the sleep problems of children with learning disabilitiesConsistently high rates of sleep problems are reported in(e.g. Quine 1992). However, there have been no investigationschildren with learning disabilities (Bartlett  et al  . 1985; Quineof children’s sleep which have focused solely on children with1991; Wiggs and Stores 1996). Work has indicated that childrenchallenging behaviour. Previous behavioural interventionwith severe learning disabilities and sleep problems are morestudies, both in the general population and in children withlikely to have more severe and more coexistent challenginglearning disabilities, have selected subjects with sleep problems,behaviour than children without sleep problems (Wiggs andof which only a minority have had behaviour disorders at theStores 1996). Challenging behaviour refers to behaviour whichonset (e.g. Seymour  et al  . 1983; Sanders  et al  . 1984; Richmanincludes injury to the child or others, damage or destruction et al  . 1985; Quine 1992; Minde  et al  . 1994). Therefore, it is notto the environment or social disruption a ff  ecting the lives of knownwhetheritispossibletosuccessfullytreatsleep problemsthe child or others (Emerson  et al  . 1987; Mansell 1994).by behavioural methods in children who also have challengingbehaviour and what the e ff  ects of successful treatment mightbe upon the child and parent. Correspondence : Dr Luci Wiggs, University of Oxford Section of Child Given the e ff  ects of sleep disturbance on children’s daytime and Adolescent Psychiatry, Park Hospital for Children, Old Road, functioning, the potential e ff  ects of disturbed sleep are Headington, Oxford OX37LQ, UK. Tel: 01865 226516; Fax: 01865762358; e-mail:  important for both clinical practice and research. Interventions 119 󰂩 1998 European Sleep Research Society  120  L. Wiggs and G. Stores to reduce a child’s sleep problem may be beneficial since the intervention began for no given reason) and 15 in the matchedcontrol group. In total, all 51 families were asked to participatefamily stresses and child behaviour problems associated withchildhood sleep problems, (or at least a component of the and 30 accepted. Of the 20 who did not, 10 consideredthemselves too busy, seven felt that their child’s sleep hadthem), may arise as a direct result of impaired sleep.improved since completing the srcinal questionnaire (andThe methodology of previous work has not allowed thistherefore they no longer fulfilled the inclusion criteria) andaspect of treatment to be investigated because earlier studiesthree declined with no reason given. The remaining childrenrelied almost exclusively on parental reports of the children’swere matched for sex and for the duration of their sleepsleep. Only one study has investigated the objective e ff  ectsproblem to within 6 months. Since the children’s ages wereof intervention on behavioural sleep (Sadeh 1994), but thenot necessarily a reflection of their developmental level, thedi ff  erences between the subjects in Sadeh’s study to those induration of their sleep problems, rather than their age, wasthe present investigation (e.g. in terms of age, duration of sleepconsidered a more important variable for which to match.problem, developmental level, family factors etc), makes itdi ffi cult to generalize from Sadeh’s work. However, it doeshighlight an important distinction which needs to be made Definition of sleep problems whenevaluatinganytreatmenttrialsforsleepproblems,namelySleep problems of settling, night waking and early waking werebetween those interventions which lead to  objective defined as follows according to standardized criteria (Richmanimprovements in the child’s sleep and those treatments whichand Graham 1971):do not objectively a ff  ect the child’s sleep but which teach thechild to  no longer disturb parents  during any wakings. This 1  Settling problems were defined as severe if they occurreddistinction is important as both could contribute to thethree or more times per week, if the child took more thanimprovements in family and child functioning associated withone hour to settle and fall asleep, and if the parents weresuccessful behavioural interventions; the former by directlydisturbed during this time.reversing the e ff  ects of the sleep disruption and leading to 2  Night waking was defined as severe if it occurred three orimprovements in daytime functioning, the latter by reversingmore times per week, and if the child woke for more thanonly the e ff  ects of the parents’ sleep disruption which maya few minutes and disturbed the parents or went into themake them better able to cope with problems, should theyparents’ room or bed.arise. Objective recording of both the child’s and the parents’ 3  Severe early waking was defined as waking before 05.00sleep would help to clarify this.hours three or more times per week.It is important to try to explore these mechanisms of intervention as they have practical and theoretical implications. Definition of challenging behaviour Clinically, it may be possible to develop or refine treatmentsto focus on the most salient mechanisms; theoretically, suchThe Aberrant Behavior Checklist (Aman and Singh 1986) waswork may contribute further to understanding of the functionused to assess the following types of challenging behaviour: self of sleep and the e ff  ects of sleep disruption.injury, aggression, screaming, temper tantrums, noncomplianceThis study aimed to answer the following basic questions byand impulsivity. Scoring details for the assessment of means of a randomized controlled trial using behaviouralchallenging behaviour are given elsewhere (Wiggs and Storesinterventions to treat the children’s sleep problems.1996). 1  Can behavioural treatment for sleep problems be usedsuccessfully in children with severe learning disabilities and  Procedure daytime challenging behaviour?To avoid the nature of the intervention being discussed between 2  If so, what are the e ff  ects of treatment on the sleep patternsthe parents in the control and intervention groups, it wasof the child and the mother?decided that the children’s schools, rather than the familieswould be randomly allocated to either the treatment or the METHOD  control group. Families were approached by a letter explainingthe study and the randomization procedure to either immediate Subjects treatment or a waiting list for treatment when the therapistChildren were recruited from respondents to a questionnaire was available. A follow-up telephone call was made a few dayssurvey of special schools conducted by the authors (Wiggs and later. Sleep diaries were completed by parents and were usedStores 1996). Inclusion criteria for this study (as defined below) as a clinical tool to aid design and monitoring of treatment.were that the child had both a severe sleep problem and at Graphical presentation of each subject’s diary data for visualleast one form of daytime challenging behaviour. Of the 209 inspection is not reported in this paper for reasons of brevity,families who completed a questionnaire (43% response rate) especially since the diary data was positively correlated with51 children fulfilled these criteria. questionnaire data about the children’s sleep (the ‘compositeThirty-one children were recruited into the study: 16 in the sleep index’ described later).Six visits were made to the family home for each subject.intervention group (one family dropped out of the study before 󰂩 1998 European Sleep Research Society,  J. Sleep Res. ,  7 , 119–126  Behavioural treatment and sleep patterns  121 Apart from the behavioural intervention and progress  The behavioural programmes telephone calls, the same procedure was followed andThefollowingisa summaryof theintended therapeuticprocess.assessments performed for both the treatment and controlDetails are available from the authors on request.groups. Progress telephone calls, the prolonged social supportelement of the intervention, was not given to the control group  1  Functional analysis of problemas this alone has been suggested as a major component of the  2  Identification of parents’ aims of treatmentintervention itself (e.g. Richman  et al  . 1985; Scott and Richards  3  Discussion of possible mechanisms maintaining settling and1990). waking problems 4  Discussion of therapeutic techniques i.e. extinction, gradedextinction procedures such as checking and gradual Visit one withdrawal, stimulus control procedures and positiveThis was an introductory visit for the family to ask anyreinforcement. The positive and negative aspects of eachquestions, to meet the researcher and for the researcher totechnique, and the practical application to their situation,meet the child. The questionnaires for the mother (and/orwere discussed so that parents could make an informedfather if appropriate) were explained to the family and left forchoice about whether or not they would be able to carrycompletion. An activity monitor for both the child and theout the techniquemother was given to the family along with instructions for use 5  Identification and anticipation of particular problems withand left with a monitor diary.intervention 6  Identification of target (or targets) for the first stage. Visit two Two or three days later a semi-structured interview took place Assessments so that a detailed sleep history was taken. This interview lasted 1  Composite sleep index between an hour and a half and two and a half hours. For theintervention group, a tailored behavioural programme wasThis index of the children’s sleep problems was calculated fromdiscussed (see below for a description) and agreed with theparental questionnaire information obtained by means of aparents. The questionnaires and monitors were collected. Itmodification of the Simonds and Parraga Sleep Questionnairewas requested that if possible both parents should be present(Simonds and Parraga 1982). Settling and night waking werefor this visit. This was possible for nine families in the treatmentscored in terms of frequency and duration and early wakinggroup and seven in the control group. For the remainder, onlyand sleeping in the parents’ bed for frequency only.mother was present. Frequency : problems occurring once or twice a week wereAfter visit two, the parents in the treatment group were sentgiven a score of one and problems occurring more than severala written outline of the agreed behavioural programme. Parentstimes a week were given a score of the treatment group were telephoned at least weekly to Duration : settling problems lasting up to one hour were givenmonitor progress, encourage, discuss any problems and amenda score of one; over one hour was scored as two. Night wakingsthe programme as necessary. They were also told that theylasting a few minutes were scored as one; two if they lastedcould telephone the researcher at any time, although this rarelylonger than that.happened.The possible scores, therefore, ranged from zero to 12. Forconsistency with previous studies, and to allow comparisons Visit three withotherreports,thiswastakentobethemeasureoftreatmente ffi cacy.One month later the activity monitors and questionnaires weredelivered to the family again. 2  Body movementsVisit four Activity monitors (Gaehwiler Electronics, Hombrechtikon,Within three days, the questionnaires and monitors were Switzerland) were worn by the child and the mother usuallycollected. Telephone contact continued with the treatment for three nights (five children and one mother only wore thegroup as necessary. monitors for two nights). The activity monitors used werewrist-watch size movement sensors, worn on the non-dominantwrist between getting into bed and getting out of bed the next Visit five morning. An amount of movement was calculated for everyTwo months later, the activity monitors and questionnaires30 s during the recording period. Parents completed monitorwere delivered to the family again.diaries to note the times at which the monitors were put onthe wrist and taken o ff  , times got into bed and got out of bed, Visit six approximate sleep onset and wake-up times and any events of importance.Two or three days later, the questionnaires and monitors werecollected. The mean scores for each recording period were examined 󰂩 1998 European Sleep Research Society,  J. Sleep Res. ,  7 , 119–126  122  L. Wiggs and G. Stores and the following variables were calculated: sleep period (time varied in duration) rather than the beginning of treatment.Such an approach biases the results in the direction of afrom sleep onset to waking), activity score (mean value of favourable outcome and, especially when comparing resultsmovement during sleep period), movement index (percentagewith a control group, a more standardized approach to theof sleep period spent moving) and fragmentation indextiming of the post-intervention investigation is necessary.(percentage of immobile phases during sleep period which wereTwo post-intervention time periods were chosen for use in30 s duration or less) (Aubert–Tulkens  et al  . 1987). They werethis study to allow for the individual variability one mightcalculated as follows:expect to see in improvement inthis population. The decision •  Sleep period  : time from sleep onset to time woke-up. Sleepof when these measurements should take place was guidedonset and time woke-up were defined by parental monitorby the rate of change seen in the study by Quine (1992) butdiaries. The activity monitor data was visually inspected toincreased slightly to take account of the more severe learningidentify any nights where there was a gross disparity (i.e.disabilities and daytime behaviour problems experienced bygreater than approximately 30 min) between diary records andthe present group of children.activity data, so that these nights could be excluded from the •  Because there has been no previous work looking at ancurrent analyses. Following this procedure, one night (of three)untreated control group of children with sleep problems, itwas excluded for one subject (treatment) at baseline and onewas of interest to examine not only any di ff  erences betweennight (of three) was excluded for another subject (control) atthe groups but also within the groups. This is particularlybaseline and visit six. In each recording, the activity monitorrelevant since Szydler and Bell (19920 report improvementsdata suggested that the child may have woken much earlierin maternal well-being, even when intervention isthan indicated by the parents’ diary.unsuccessful. It could be that merely focusing more on the •  Activity score : the sum of the epoch scores divided by thechild’s sleep (which the control group are also forced to do)total number of epochs in the sleep period.would be therapeutic. •  Movement index : the number of 30 s epochs with a value 2  Quine(1991) hasnotedthat there islikelytobeacomplicatedgreater than zero (i.e. with movement), divided by the totalinteraction between several factors which determines anynumber of 30 s epochs in the sleep period multiplied by 100.change in the family dynamics. This is perhaps especially true •  Fragmentation index : the number of discrete 30 s epochs withwhen examining a group of children who also have variousa value of zero (i.e. with no movement) divided by the totalforms of disability with associated problems and features of number of immobile phases of any duration multiplied by 100.possible relevance. This being so, the mechanisms involved inany change within the child or mother are likely to be lessstraightforward and conventional hypothesis testing may be 3  Epilepsy too simplistic.Seizure type was assessed by means of a structured interview(Reutens etal  .1992)comprisingof26mainquestions,including The statistical procedures used are described in each section.nestedquestionswhenasymptomwaspresent.Anagreementof  Parametric tests were used when exploration of the data0.76 (Cohen’s K statistic) between physician and questionnaire suggested they were suitable (Lilliefors and Levene tests fordiagnoses has been shown by the authors (Reutens  et al  . normality of scores and homogeneity of variance respectively).1992). The diagnoses were made by a neuropsychiatrist with All analyses of variance tests (ANOVA) were of a two-wayconsiderable clinical and research experience in the epilepsy 2x3 mixed design. Independent variables were the subjectsfield (GS). Seizure frequency was assessed by pages in the sleep group (treatment or control) (between) and the time of studydiary on which parents could note down the time and a (baseline, visit 4 and visit 6) (within). Averaged tests of description of any seizures. significance are used for all ANOVA tests unless otherwisespecified. Where Mauchly Sphericity tests were significant, theHotellings multivariate test of significance was used instead. Statistical analysis This is indicated in the results by the symbol †. Post hocFor the following reasons, it was decided to make no explicit contrasts were made using Sche ff  e’s test to compare, for bothhypotheses but to analyse the data in a more exploratory between and within groups, the change between baseline andmanner. Therefore all significance levels given are two-tailed. visit four, baseline and visit six, and between visit four and six.Confidence limits (95%) for each contrast are indicated by the 1  All possible comparisons (i.e. changes over each study periodletters ‘CL’.for both groups and within groups) are of interest for reasonsdescribed below. RESULTS •  The rate and timing of any changes in the child or theirparent are important. Previous studies (e.g. Quine 1992; The subjects Richman  et al  . 1985) took post-intervention measurementsat di ff  erent times across subjects, when personal targets had Both groups contained 9 males and 6 females. The mean ageof the treatment group was 8.21 years (s.d. 2.7), and the meanbeen reached. Also, Minde  et al  . (1994) anchored their post-intervention measurements to the end of treatment (which duration of their sleep problems was estimated to be 6.21 years 󰂩 1998 European Sleep Research Society,  J. Sleep Res. ,  7 , 119–126  Behavioural treatment and sleep patterns  123 Table 1  Number of children in each groupshowing the various sleep problems andcombinations of sleep problems Sleep problem Control group (n = 15) Treatment group (n = 15) Settling 5 5Settling and night waking 4 2Settling, night waking and sleeping 2 3in parental bedNight waking 1 0Settling and sleeping in parental 1 1bedNight waking and early waking 1 1Night waking and sleeping in 0 2parental bedSettling, night waking and early 0 1waking (s.d.2.44).Thechildren’sbasicdiagnoseswerestatedasfollows: child’s sleep to have been significantly improved by treatment,unknown (6); unknown ( + autism) (4); Down syndrome (1); within one month of its commencement. These levels of meningitis (1); microcephaly (1); cerebral palsy (1); CHARGE improvement were maintained two months later. The controlassociation (1). Five children had current uncontrolled epilepsy group’s sleep remained the same throughout the study period.characterized by the following types of seizure: absence (1), The mean composite sleep index scores of the two groups attonic clonic (2), absence and tonic clonic (1), atonic (1). A the di ff  erent time points can be seen in Table 2.further two had been seizure free for between 2 and 4 years.The mean age of the control group was 10.77 years (s.d. Body movements 3.81) and the mean duration of their sleep problems wasestimated to be 6.91 years (s.d. 4.07). The diagnoses of the The mean scores for each activity variable for both groups of children’s disabilities were as follows: unknown (4); unknown children can be seen in Table 3.( + autism) (3); cerebral palsy (2); Down syndrome (3); agenesis A similar pattern was seen for each of the variables: thereof the corpus callosum (1); Sanfillipo syndrome (1); Ring 15 were no overall di ff  erences between the groups, nor di ff  erenceschromosomedisorder(1).Sixchildrenhadcurrentuncontrolled over time between the groups (statistical data available fromepilepsy with seizures as follows: absence (1), tonic clonic (2), the authors on request) but there was an e ff  ect of time on eachtonic (1), tonic clonic and complex partial (1), tonic, complex variable (sleep period F(2,56) = 5.30,  P = 0.008; activity scorepartial and absence (1). One had been seizure free for 3 years. F(2,27) = 3.64†,  P = 0.040; movement index F(2,27) = 6.72†,For both groups combined, the children’s age and the  P = 0.004; fragmentation index F(2,56) = 12.84,  P <0.000).duration of their sleep problems were positively correlated Both groups showed an increased  sleep period   between(Pearson’s R = 0.7486,  P <0.001). baseline and visit 4 (t = 2.45,  P = 0.020, 95% CL = 0.041 toThe types of sleep problems su ff  ered by children in the two 0.462) and baseline and visit 6 (t = 2.89,  P = 0.007, 95% CL = groups can be seen in Table 1. There was no significant 0.075 to 0.440) but no change between visits 4 and 6 (t = 0.07,di ff  erence between the composite sleep scores of the two groups  P = 0.941, 95% CL =− 0.153 to 0.1).at baseline (t = 0.60,  P = 0.554, df  = 28). The  activity scores  of both groups showed a decrease inactivity between baseline and visit 4 (t =− 2.74,  P = 0.010,95% CL =− 1.255 to − 0.182) and baseline and visit 6 (t = The children’s sleep − 2.66,  P = 0.012, 95% CL =− 1.272 to  − 0.167) but no Composite sleep index change between visits 4 and 6 (t = 0.99,  P = 0.994, 95% CL =− 0.136 to 0.135).ANOVA was used to investigate the composite sleep scores. Movement indexes  also reduced for both groups betweenThere was a significant overall di ff  erence between the groupsbaseline and visit 4 (t =− 3.54,  P = 0.001, 95% CL =− 3.65(F(1,23) = 14.2,  P = 0.001), an e ff  ect of time of study (F(2,to  − 0.975) and baseline and visit 6 (t =− 2.73,  P = 0.010,46) = 13.12,  P <0.001) and a significant interaction between95% CL =− 3.45 to  − 0.494) but did not change betweenthe subjects’ grouping and the time of study (F(2,46) = 5.03,visits 4 and 6 (t = 1.12,  P = 0.271, 95% CL =− 0.278 to P <0.011). Contrasts confirmed that there was a di ff  erence0.954).between baseline and visit 4 for the treatment group and not Fragmentation indexes  showed a reduction between baselinefor the control group (t = 2.35,  P = 0.027, 95% CL = 0.197and visit 4 (t =− 5.19,  P = 0.002, 95% CL =− 5.17 to − 2.24)to 3.07) and between baseline and visit 6 (t = 3.50,  P = 0.001,and this reduction from baseline was sustained at visit 6 (t = 95% CL = 0.758 to 2.94), but no further changes for either − 2.16,  P = 0.039, 95% CL =− 3.05 to  − 0.082) but theregroup between visits 4 and 6 (t = 3.14,  P = 0.756, 95% CL =− 1.18 to 1.61). This suggested that parents reported their was a significant increase in fragmentation, for both groups, 󰂩 1998 European Sleep Research Society,  J. Sleep Res. ,  7 , 119–126
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