relationships between sleep disruptions, health and care responsibilities among mothers of...

ORIGINAL ARTICLE

Relationships between sleep disruptions, health and careresponsibilities among mothers of school-aged childrenwith disabilitiesHelen Bourke-Taylor,1 Julie F Pallant,2 Mary Law4 and Linsey Howie3

1Department of Occupational Therapy, School of Primary Health Care, Faculty of Medicine, Nursing and Health Sciences, Monash University – Peninsula

Campus, Frankston, 2Research and Graduate Studies, Rural Health Academic Centre, University of Melbourne, Shepparton, 3Faculty of Health Sciences, School

of Occupational Therapy, La Trobe University, Melbourne, Victoria, Australia and 4Rehabilitation Science, CanChild Centre for Childhood Disability Research,

McMaster University, Hamilton, Canada

Aim: Sleep problems are more common among children with disabilities. Mothers are likely to provide night-time care. Mothers of childrenwith disabilities are known to experience high levels of stress and mental health issues compared with other mothers. Relationships between achild’s sleep problems, and chronic maternal sleep interruption and subjective health have not been researched.Method: Cross-sectional mail-out survey with follow-up phone call was used. Instruments included the Short Form 36 version 2 and instru-ments that measured maternal, child and sleep characteristics. Descriptive statistics examined characteristics of participants and correlation,and Kruskal–Wallis test was used to determine important maternal and child characteristics around sleep issues.Results: All mothers (n = 152) cared for a school-aged child with a developmental disability including autism spectrum disorder (n = 94) andcerebral palsy (n = 29). Nearly half (49%) of the mothers were awoken more than 4 nights/week. Three distinct sleep groups were identified: nosleep interruption; sleep interruption once/night, 4 nights/week; and more frequent interruption. Mothers experiencing the most sleep inter-ruptions reported significantly poorer health on six Short Form 36 version 2 dimensions. Night-time caregiving was associated with higher childcare needs rather than children’s diagnoses. Mothers who experienced more sleep interruption also participated less in health-promotingactivities (active leisure, time with socially supportive others) during the day.Conclusion: This study identifies a group of mothers with chronic sleep interruption and demonstrates related poor maternal subjectivehealth and lower participation in health activities that may service to support maternal health. Mothers with children with the highest daytimecare needs also experienced high night-time care responsibilities. Changes to service provision are recommended to identify mothers in needof additional supports and services.

Key words: caring; developmental; general paediatrics.

What is known about this topic

1 Mothers of children with disabilities perform crucial caringresponsibilities, although research indicates higher rates ofmaternal depression and stress.

2 Many children with developmental disabilities experience sleepproblems.

3 The impact on mother’s health has rarely been studied.

What this study adds

1 Many mothers experienced chronic sleep interruption morethan 4 nights/week attending to their child with a developmentaldisability.

2 Mother’s experiencing the highest sleep disruptions had chil-dren with the highest care needs.

3 Mother’s experiencing the highest sleep disruptions reportedpoorer mental health and capacity to participate in health-promoting activities.

Introduction

Research indicates that children and adolescents with develop-mental disabilities experience sleep disorders at higher rates thantypically developing children.1 Given that most school-aged chil-dren with developmental disabilities live at home with theirfamilies, assessment of the impact of their night-time care onfamily members is crucial. If a child has a sleep disorder, it is thefamily (usually the mother) who will provide night-time care.2,3

Correspondence: Dr Helen Bourke-Taylor, Department of OccupationalTherapy, School of Primary Health Care, Faculty of Medicine, Nursing andHealth Sciences, Monash University – Peninsula Campus, PO Box 527,Frankston, Vic. 3199, Australia. Fax: 0399044111; email: [email protected]

MeSH words: maternal health, developmental disability; paediatrics.Conflicts of interest: None.

Accepted for publication 23 December 2012.

doi:10.1111/jpc.12254

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Journal of Paediatrics and Child Health 49 (2013) 775–782© 2013 The AuthorsJournal of Paediatrics and Child Health © 2013 Paediatrics and Child Health Division (Royal Australasian College of Physicians)

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mailto:[email protected]

mailto:[email protected]

Many mothers of a child with a disability experience higherstress levels and poor mental health,4–8 highlighting the need toidentify more vulnerable mothers so that responsive servicesmay be implemented. Factors associated with poor maternalsubjective well-being include situations where the child exhibitsdaytime challenging behaviour;6,7,9,10 is reliant on technologyfor daily functioning;11 has feeding issues;12,13 involves condi-tions including cerebral palsy (CP),4,5,14 autism spectrum disor-ders (ASD)15–17 and intellectual disability.9,18 Research that shedslight on lifestyle differences (including sleep and healthy behav-iours) is needed. Healthy behaviours refer to activities such asactive, passive recreational pursuits that one may do alone orwith socially supportive others and activities that we do tosupport our own health (eating, sleeping, exercising, etc). Therelationship between sleep deprivation and participation inhealthy activities during the day has not been researched to date.

Higher rates of sleep problems among children with disabili-ties are likely to have a direct impact on the sleep habits ofmothers, and impact maternal subjective health and well-being.Research completed by Green,19 a sociologist and mother of ayoung adult with CP, described the popular view that mothers ofchildren with disabilities were ‘victims of individual tragic cir-cumstances and have been expected to be mired in emotionaldistress’ (p. 161). Recent research with small sample sizes (n <70) of children with developmental disabilities indicates mater-nal sleep disruption and disturbance, and increased risk foranxiety and depression.1,2

Research has consistently shown that children’s sleep habitsare affected by biological, behavioural and contextual factors.3

Some studies indicate that infant and childhood sleep issues areassociated with maternal mental health including post-nataldepression20 and family routines around healthy sleep habits.21

Although parental report suggests a higher prevalence of pae-diatric sleep problems across childhood, a recent review of pae-diatrician’s electronic records (n = 154 957 children aged 0–18years) revealed that sleep disorders were diagnosed infrequently(3.7%).22 Factors associated with a diagnosis of a sleep disorderwere identified, including preschool or school age, lower socio-economic status, different than average growth parameters(head circumference and BMI), and comorbid diagnoses such asASD and Attention Deficit Hyperactivity Disorder.22

The nature and effects of sleep interruption experienced bymothers caring for a child with a disability warrant furtherinvestigation. This study investigated the frequency and impactof sleep interruption on mothers of school-aged children withdevelopmental disabilities in Victoria, Australia. The aims of thisstudy were to:1 Determine the frequency with which mothers awaken to

attend to their child with a developmental disability.2 Identify the child-related factors associated with the need to

provide night-time attention for a child with a disability.3 Assess the impact of chronic sleep disturbance on maternal

health and maternal capacity for participation in health-promoting activity.

Methodology

Mixed methodology informed investigation of the health andlife situation of mothers of school-aged children with develop-

mental disability in Victoria, Australia. An initial qualitativestudy investigated the experience of mothers, and initial designof psychometric instruments and a subsequent study involvedmail-out survey with follow-up phone call. Further details ofthe methodology used in this research are available in anotherrelated article23 and descriptions of scales designed for thisresearch.20,24,25 This study was approved by the La Trobe Univer-sity Health Science Faculty Ethics Committee.

Participants

Inclusion criteria required: (i) the mother was the primarycarer of a school-aged child with a disability; (ii) resident inthe state of Victoria; and (iii) able to complete the survey inEnglish. Voluntary participation was sought through parentsupport disability organisations using a 100-word noticedescribing research ‘to investigate factors that affect the healthof Victorian mothers of a child with a disability’ recruitedmothers into the study.

Measures

Demographic data were collected including mother’s age; edu-cation; marital status; family income and constellation; mother’smedical conditions; sleep interruption and frequency thatrequired mothers to attend to their child with a disability; thechild’s age, diagnosis, and specialised equipment and serviceneeds (see Table 1 and Fig. 1). Service options included medical,education and allied health services such as paediatrician, occu-pational therapist, psychologist, physical therapist and specialeducation teacher. Overall, eight measurement tools were usedto measure aspects about the child, the mother and the envi-ronment (see Table 2).

The Short Form 36 version 2 (SF-36v2), which is a validatedand widely used scale, was included to assess subjective healthstatus compared with other Australians.26,27 The SF-36v2 hasbeen used extensively in quality of life and health-relatedresearch.28 It yields eight domain scores that represent the per-son’s health status in the areas of physical functioning, rolephysical (ability to meet physical role demands), body pain,vitality, general health, social function, role emotional (abilityto meet emotional role demands) and mental health. UsingAustralian-based norms (see column one, Table 3),27 two overallnorm-based summary scores were calculated: physical healthcomponent score (PCS) and mental health component score(MCS).

Four scales assessed childhood disability and needs: PediatricQuality of Life (PedsQL) Parent Report questionnaire;29 Pediat-ric Evaluation of Disability Inventory, Parts II and III (PEDI);30

the Assistance to Participate Scale (APS);24 and the Child’s Chal-lenging Behaviour Scale.25 Maternal factors were measuredusing four scales, including the SF-36v2, and measures of thematernal empowerment over family matters and family cohe-sion (Family Environment Scales, Family Sub-scale and31 Cohe-sion sub-scale of the Family Environment Scale)32. Maternalparticipation in leisure activities that were health promotingwas assessed using a scale developed for this study (Health-Promoting Activities Scale (HPAS))33.

H Bourke-Taylor et al.Maternal sleep and childhood disabilities

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Data management

Data were managed using the SPSS Version 18 statisticalpackage (Chicago, IL, USA). Descriptive statistics were used todescribe the characteristics of mothers and children within thesample. Responses to questions about maternal sleep interrup-tions to address the needs of the child at night were used toclassify mothers into three groups based on the frequency thatthey attended to their child at night, see Figure 1.

Group 1 included mothers who slept through uninterruptedalmost every night (n = 77), Group 2 included mothers whowere awoken once per night, more than 4 nights/week (n = 36)and Group 3 included mothers who were awoken twice or moreper night more than 4 nights/week (n = 35). As shown in

Figure 1, one mother did not answer the first sleep question,reducing the total number of responses to 151. Then, three ofthe mothers who did have interrupted sleep then did notanswer the question about how many times they got up in onenight, reducing the responses of mothers with interrupted sleepfrom 74 to 71. Hence, the final groups represent 148 mothers.

Correlations analysis and the Kruskal–Wallis test were thenused to investigate differences between groups. The c2 test wasused to compare reported sleep interruptions by mothers ofdifferent groups of children according to their primary diagnosis.Norm-based scores were then calculated using published Aus-tralian weightings27 for all health dimensions as well as overallMCS and PCS to allow comparison with the self-reported healthof other Australians.

Table 1 Characteristics of participants (n = 152), their child with a disability and scores of selected measures of the extent of the child’s disability

Characteristics as reported by mother Participant status (n = 152)

Mother characteristics

Age mean (SD) 41.7 years (SD = 5.4)

Family Environment Scale: Cohesion sub-scale (range 0–9) 5.4 (2.2)

Health-Promoting Activities Scale (range 8–56) 21.7 (5.7)

Child characteristics

Age 9.5 years (3.7)

Most common childhood disability/conditions

Physical disability Total 51 (34%)

Cerebral palsy 29 (19%)

Developmental delay 26 (17%)

Autism spectrum disorder Total 94 (62%)

Autism 69 (45%)

Asperger syndrome 25 (17%)

Other Intellectual disability 46 (30%)

Language disorder 15 (10%)

Epilepsy 20 (13%)

Visual impairment 14 (9%)

Additional childhood psychiatric diagnosis Total 31 (20%)

ADHD 19 (12%)

Pediatric Quality of Life 4.0 (PedsQL) Generic Core Scales parent report scaled scores

Total score 44.8 (15.5)

Physical health summary score 46.0 (27.1)

Psychosocial health summary score 44.2 (16.3)

School function 46.8 (21.8)

Social function 38.4 (21.2)

Emotional function 47.5 (21.6)

Pediatric Evaluation of Disability Inventory (PEDI) care giver scaled scores

Self-care domain 52.6 (24.4)

Mobility domain 70 (29.4)

Social function domain 44.2 (21.8)

Assistance to Participate Scale (APS)

Home alone (range 4–20) 15.7 (4.1)

Community social (range 4–20) 11.1 (4.6)

Total score (range 8–40) 26.8 (7.8)

Child’s Challenging Behaviour Scale (range 11–54) 34.4 (9.3)

Number of assistive devices (range 0–10) 2.45 (3.02)

Number of specialised services (range 0–18) 7.6 (3.8)

SD, standard deviation; ADHD, attention deficit hyperactivity disorder; SD, standard deviation.

Maternal sleep and childhood disabilitiesH Bourke-Taylor et al.


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Results

One hundred and eighty mothers responded to the publicisedstudy, and 152 completed the mail-out survey and phone inter-view (84% response rate). Characteristics of mothers and theirchildren are described in Table 1. Children were mainly boys (n =104, 68%), and more than half attended a specialised setting forschooling (n = 83, 55%). A wide range of paediatric conditionswas reported, with three quarters of children being diagnosedwith more than one condition. Measures of disability indicated a

wide range of skill levels and daily problems experienced bychildren as described by their mothers (see Table 1). Eighteenoptions for services were provided in the mail-out surveybooklet, and mothers reported that their child utilised an averageof 7.58 (standard deviation (SD) = 3.78) services. Highest serviceuse was reported for paediatricians (n = 121, 80%), dentists (n =112, 74%), and both school-based speech pathologists (n = 94,62%) and occupational therapists (n = 83, 55%).

Fifty-one percent of mothers in this sample had been diag-nosed and received treatment for one or more mental health

1. How o�en do you sleep through without a�ending to your child with a disability?

Almost every night n=77

(51%) Group 1

Once per night n=36 (24%)

Group 2

No response n=3 (2%)

Two �mes per night

n=22 (14.5%)

2. If you do get up to a�end to your child, how o�en do you do so on average, per night? (n=74 summa�on of above responses)

Three or more �mes per night

n=13 (8.5%)

2-3 �mes per week

n=27 (18%)

Once per week

n=13 (9%)

2-3 �mes per month n=6 (4%)

Once per month

n=7 (5%)

2-3 �mes per year n=5 (3%)

Nevern=16 (11%)

n=35 (23%)Group 3

Fig. 1 Mothers responding to questions (n =151) concerning extent of sleep disturbance

showing allocation to Groups 1, 2 and 3 based

on the frequency that mothers experienced

interrupted sleep, percentages calculated to

total sample of sleep responses.

Table 2 Characteristics measured by instruments included in survey and the concepts that were measured

Characteristic

measured

Instrument Concept measured from mother’s perspective

Child related Pediatric Quality of Life Version 4.0 (PedsQL 4.0) parent

report

Extent of problems that child experiences in daily life as indicator of

quality of life

Pediatric Evaluation of Disability Inventory, Parts II and III

(PEDI)

Extent of assistance that the child needs during daily activities

(self-care, mobility and social functioning)

Assistance to Participate Scale (APS) The extent of assistance that the child needs to participate in play

and recreation

Child’s Challenging Behaviour Scale (CCBS) Extent of challenging behaviours exhibited by child during daily life

Mother related Short Form 36 Health Survey version 2 (SF-36v2) Mental

health component score (MCS)

Subjective maternal health status, including summary of subjective

mental health in relation to other women

Family Empowerment Scale: Family Sub-scale (FES-FS) Extent that mother experiences self-efficacy and empowerment

over managing their child’s disability and needs and family

matters

Health-Promoting Activities Scale (HPAS) Frequency that mother participates in health promoting leisure

activities

Environment related Family Environment Scale: Cohesion sub-scale (FES-CS) Extent of family cohesion that demonstrates how well mother is

helped and supported in the family




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condition, described elsewhere in depth.23 Forty-nine percent ofmothers reported that their child needed frequent night-timeattention (see Fig. 1). Nearly one-third of all mothers (32%)reported that they slept continuously through the night lessthan 1 night/week on a regular basis, including 11% of motherswho reported that they ‘never’ slept through the night withoutinterruption to care for their child. Among the group of motherswho experienced interrupted sleep (n = 74), 4 or more nights/week, almost half of the mothers were awoken once (n = 36,24%), 14.5% were awoken twice (n = 22) and 8.5% awokenthree or more times (n = 13) (see Fig. 1).

The self-reported SF-36v2 norm-based scores were calculatedfor all three groups (see Table 3). Group 1 recorded health scoresmore than 1 SD below other Australians for overall MCS norm-based score and five out of the eight dimension scores. Groups2 and 3 reported MCS scores more than 2 SD below otherAustralians, indicating much poorer mental health. Scores onthe role emotional domain were more than 2 SD below otherAustralians for Group 2, and 3 SD for Group 3. Group 2 reportedpoorer physical health (more than 1 SD below other Australianson five out of the seven health dimensions), and Group 3reported three dimensions 1 SD below, and body pain andmental health more than 2 SD below other Australians. Therewere statistically different scores on MCS and the general healthand mental health dimensions when the groups were compared(see Table 3).

A series of Kruskal–Wallis tests investigated whether therewere differences in the characteristics of children or mothers inGroups 1, 2 and 3 (see Table 4). The groups differed significantlyon only one maternal characteristic: participation in health-promoting activities. Mothers who slept uninterrupted (Group1) participated in health-promoting activities with greater fre-quency (higher HPAS score). The HPAS measures the frequencythat mothers participated in activities such as active or passive

recreational pursuits, time alone to do as they wished or withsocially supportive others and time planning their own healthroutines.20

Children of mothers in Group 3 used significantly more assis-tive devices (three devices). Children of mothers in Group 3 alsoused more services (nine services) than other children ofmothers in Group 1 (six services) and Group 2 (seven services).Children who required night-time attention (Groups 2 and 3)required the most care giver assistance to participate in play andleisure overall, at home and in the community (APS), as well asfor self care, mobility and social functioning (PEDI scale). Theyalso experienced the most problems physically and emotionallyin daily life (PedsQL scale). c2 tests revealed no differencesbetween sleep groups in the proportion of children diagnosedwith ASD (c2 = 3.2, d.f. = 2, P = 0.20) or CP (c2 = 2.58, d.f. = 2,P = 0.28).

Discussion

This research investigates relationships between the frequencythat mothers of school-aged children with developmental dis-abilities attend to their child at night, the impact on maternalsubjective health, and associations between sleep interruptionsand participation in healthy activities during the day. Mothersattended to their children overnight with regularity: 49% ofmothers were awoken once, twice or more, 4 nights/week ormore. Maternal report of subjective mental health, generalhealth, sense of vitality, social functioning and capacity to fulfilthe emotional aspects of life roles all declined as the frequencyof sleep interruption increased. Mothers who participated inhealth-promoting activities with lower frequency as reportedhave increased sleep interruptions. The extent of the child’sdisability and need for care giver assistance during the day wasassociated with increased care needs overnight.

Table 3 Comparison of norm-based Short Form 36 version 2 (SF-36v2) scores for three groups of mothers with different sleep interruption secondary to

the need to provide care to their child with a disability using Kruskal–Wallis Statistic (n = 146)

SF-36v2 PCS,

MCS and

domains.

Australian

norm-based

SF-36v2 scores

(n = 3015)

Group 1 Group 2 Group 3 Kruskal–Wallis test

Mothers who

sleep though

almost every

night (n = 77)

Mothers who

have interrupted sleep

once per night 4 or more

nights/week (n = 36)

Mothers who have

interrupted sleep twice or

more per night, 4 or more


c2 P

PCS 50.3 (9.7) 47.74 47.49 43.47 1.876 0.39

MCS 52.9 (10.2) 35.62† 31.35‡ 26.03‡ 5.981 0.05PF 50.6 (9.2) 47.88 47.88 47.88 1.599 0.45

RP 50.8 (9.9) 43.77 38.79 43.77 1.872 0.39

BP 52.2 (8.9) 43.20† 42.73† 33.31‡ 3.060 0.22

GH 50.5 (10.4) 40.90 36.34† 36.34† 5.974 0.05VT 51.4 (10.4) 38.64† 35.64† 32.63† 1.784 0.41

SF 50.8 (9.7) 39.39† 33.79† 33.79† 3.467 0.18

RE 52.0 (8.2) 35.76† 31.00‡ 26.23§ 5.072 0.08

MH 53.2 (9.6) 37.86† 37.86† 26.09‡ 7.438 0.02

†More than 1 SD below other Australians. ‡More than 2 SD below other Australians. §More than 3 SD below other Australians. d.f. = 2. Significant results

bolded. BP, body pain; GH, general health; MCS, mental health component summary score; MH, mental health; PCS, physical health component summary

score; PF, physical function; RE, role emotional; RP, role physical; SF, social function; VT, vitality.



779

The frequency of sleep interruption described by mothers inthis study has been reported by other mothers. Mothers ofyounger, typically developing children are known to experiencesimilar sleep interruption. However, the children represented inour study were school aged, and age was not a significant factorin identifying mothers with interrupted sleep (P = 0.103). Bayeret al., surveyed 692 mothers of infants 3–6 months of age andfound that 51% experienced sleep interruption more than 4nights/week, and that sleep problems were associated withpoorer maternal mental and physical health.34 Although moth-ering an infant is a finite period, mothers in this study representa group of mothers of school-aged children with disabilities whoexperience this level of sleep interruption over the long term,with detrimental effects on their health.

Our study found that mothers who were experiencing inter-rupted sleep regularly (Groups 2 and 3) reported significantlypoorer health than mothers in the sample who slept throughthe night (Group 1) and other Australian adults. Maternal sub-jective mental health, vitality, social and emotional functioningof mothers were significantly below other Australians for allthree groups. Report of body pain was significantly higher forthe most sleep-deprived mothers – a concern when the physicalcaregiving needs of children in the cohort are considered (i.e.

lifting, holding, dressing, moving equipment and transporting).When mothers with the most frequently interrupted sleep werecompared with other mothers in the sample, subjective mentaland general health were poor.

Children with the most severe disability, and who requiredhigh-level daytime care, also required the most frequent attend-ance at night. Children experiencing daily physical and emo-tional problems, who needed the most assistive devices andassistance to participate in play and recreation, self care (includ-ing toileting, eating and dressing), mobility (including the needto be lifted or for a mobility device), and social function alsorequired additional night-time care. A recent review of 17studies investigated correlates with sleep disorders among chil-dren with pervasive developmental disorders (PDD)35 and foundthat severity of autism symptomatology and internalisingbehaviours (low mood, anxiety and poor emotional well-being)were the strongest predictors of sleep disorder. These resultsconcur with our findings, that is, that child emotional problems(sadness, anxiety) were associated with greater need for night-time care.

Other studies have identified children with specific develop-mental disabilities as having higher prevalence of sleep disor-ders, including CP.36 Forty-four percent of the sample of

Table 4 Non-parametric comparison of median scores on mother and child characteristics between groups of mothers of a school-aged child with a

disability with different experiences of sleep interruption using the Kruskal–Wallis test (significant results bolded)

Characteristic related to

mother or child

Group 1 Group 2 Group 3 Kruskal–Wallis test

Mothers who

sleep though

almost every

night (n = 77)

Mothers who have

interrupted sleep once

per night more than 4


Mothers who have

interrupted sleep twice or

more per night, more than

4 nights/week (n = 35)

c2 P

Mother characteristics

Age 41 43 41 1.696 0.428

Family Environment Scale: Cohesion

sub-scale

7 7 6 1.727 0.422

Health-Promoting Activities Scale 22 19.5 17 11.839 0.003Child characteristics

Age 9 9 7 4.544 0.103

Total number of assistive devices 1 1 3 5.313 0.035Total number of paediatric services 6 7 9 1.748 0.070

Assistance to Participate Scale (APS)

Home alone 18 16.50 13 10.018 0.007Community social 12 10 9 6.532 0.038Total 30 26 22.5 11.409 0.003Paediatric evaluation of disability

inventory

Self-care 61.10 59.55 44.40 12.953 0.002Mobility 82.50 82.50 70.50 15.592 0.000Social function 52.00 42.90 39.60 11.883 0.003

Paediatric quality of life scale:

Physical function 53.13 45.31 31.25 9.157 0.010Emotional function 50.00 47.50 37.50 8.045 0.018Social function 35.00 40.00 40.00 .178 0.915

School function 50.00 47.50 45.00 3.630 0.163

Total score 46.74 42.93 39.67 10.106 0.006Child’s Challenging Behaviour Scale 34 36 37 3.497 0.174




780

children (n = 174) were scored by their parents as having at leastone clinically significant sleep disorder. The extent of physicaldisability, presence of epilepsy, severe visual impairment andenvironmental factors such as co-sleeping, single parenthoodand parental unemployment were all associated with sleep dis-order. Other research and reports verify higher rates of sleepdisorders among children with visual impairment,36 epilepsy,2

Fragile X and autism,37 school-aged children with autism,21,38

PDD1,35 and CHARGE syndrome.39 The sleep problems of chil-dren with physical disabilities were investigated in anotherstudy40 and revealed that 48% of the total sample (n = 505) hadsleep problems that required attention at night, according toparents. Other research indicated that difficulty eating anddrinking, and pain were associated with greater need for night-time attention when children have physical disabilities.41

Limitations of this research include potential bias within asample of mothers who volunteered to participate. Motherswho did respond represented only a small proportion of allmothers caring for a child with a disability: partnered and highlyeducated. However, there are findings from this cohort ofmothers that can assist in the understanding of mothers in thislife situation. This research highlighted healthy sleep patternsexperienced by a group of mothers reporting better mentalhealth (although still below other Australians). Mothers in thisgroup had children with relatively fewer care needs, betterphysical and emotional functioning, and such mothers werealso attending to their own health, socialising, being physicallyactive and recreating more often than mothers with interruptedsleep. This research cannot make inferences about the directionof such associations but highlights the need for research thatwill. The successful strategies used and implemented in thehomes of mothers who sleep uninterrupted require attention,research and knowledge sharing to inform best practice andadvice to mothers who are not sleeping. Future research mightutilise population-based samples and investigate prevalence ofsleep disorders, reasons for night-time care attention, and theeffects of strategies and programmes that are designed topromote healthy sleep habits among mothers and their children.

This research has important implications for direct serviceproviders. Colver described the repertoire of questions thatdoctors may ask families of pre-school–aged children withdisabilities and included the child’s behaviour and sleep.42

Our results suggest that questions regarding sleep/night-timecaregiving routines are advisable during consultations withschool-aged children with disabilities. Responsive night-timemanagement strategies that may be implemented using alliedhealth services include: pressure-relieving mattresses, adjustednight-time feeding regimes, epilepsy medication review, behav-ioural management strategies, overnight respite care, appropri-ate home safety modifications to relieve parental vigilance andconsideration of real need for therapeutic night-time devicessuch as splints and braces. Furthermore, the efficacy of pre-scribed night-time medications that assist the child to sleepmight be described and evaluated in rigorous research so thatfamilies can be educated about the options that support thehealth and functioning of both the child and family.

This study identified a group of mothers who provide care tohigh needs children around a 24-h clock. Such care require-ments are an extraordinary challenge for mothers and indicate

that responsive services to relieve carer responsibilities areurgently needed. Considering that children with disabilities areloved and thrive in their family home, further research thatidentifies the real-life challenges experienced by familiescharged with their care is paramount.

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