Relationships between sleep disruptions, health and care responsibilities among mothers of school-aged children with disabilities

Authors


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

Correspondence: Dr Helen Bourke-Taylor, Department of Occupational Therapy, School of Primary Health Care, Faculty of Medicine, Nursing and Health Sciences, Monash University – Peninsula Campus, PO Box 527, Frankston, Vic. 3199, Australia. Fax: 0399044111; email: Helen.Bourke-Taylor@monash.edu

Abstract

Aim

Sleep problems are more common among children with disabilities. Mothers are likely to provide night-time care. Mothers of children with disabilities are known to experience high levels of stress and mental health issues compared with other mothers. Relationships between a child'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 instruments 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) and cerebral palsy (n = 29). Nearly half (49%) of the mothers were awoken more than 4 nights/week. Three distinct sleep groups were identified: no sleep interruption; sleep interruption once/night, 4 nights/week; and more frequent interruption. Mothers experiencing the most sleep interruptions reported significantly poorer health on six Short Form 36 version 2 dimensions. Night-time caregiving was associated with higher child care needs rather than children's diagnoses. Mothers who experienced more sleep interruption also participated less in health-promoting activities (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 subjective health and lower participation in health activities that may service to support maternal health. Mothers with children with the highest daytime care needs also experienced high night-time care responsibilities. Changes to service provision are recommended to identify mothers in need of additional supports and services.

What is known about this topic

  1. Mothers of children with disabilities perform crucial caring responsibilities, although research indicates higher rates of maternal depression and stress.
  2. Many children with developmental disabilities experience sleep problems.
  3. The impact on mother's health has rarely been studied.

What this study adds

  1. Many mothers experienced chronic sleep interruption more than 4 nights/week attending to their child with a developmental disability.
  2. Mother's experiencing the highest sleep disruptions had children with the highest care needs.
  3. Mother's experiencing the highest sleep disruptions reported poorer mental health and capacity to participate in health-promoting activities.

Introduction

Research indicates that children and adolescents with developmental disabilities experience sleep disorders at higher rates than typically developing children.[1] Given that most school-aged children with developmental disabilities live at home with their families, assessment of the impact of their night-time care on family members is crucial. If a child has a sleep disorder, it is the family (usually the mother) who will provide night-time care.[2, 3]

Many mothers of a child with a disability experience higher stress levels and poor mental health,[4-8] highlighting the need to identify more vulnerable mothers so that responsive services may be implemented. Factors associated with poor maternal subjective well-being include situations where the child exhibits daytime challenging behaviour;[6, 7, 9, 10] is reliant on technology for daily functioning;[11] has feeding issues;[12, 13] involves conditions including cerebral palsy (CP),[4, 5, 14] autism spectrum disorders (ASD)[15-17] and intellectual disability.[9, 18] Research that sheds light on lifestyle differences (including sleep and healthy behaviours) is needed. Healthy behaviours refer to activities such as active, passive recreational pursuits that one may do alone or with socially supportive others and activities that we do to support our own health (eating, sleeping, exercising, etc). The relationship between sleep deprivation and participation in healthy activities during the day has not been researched to date.

Higher rates of sleep problems among children with disabilities are likely to have a direct impact on the sleep habits of mothers, and impact maternal subjective health and well-being. Research completed by Green,[19] a sociologist and mother of a young adult with CP, described the popular view that mothers of children with disabilities were ‘victims of individual tragic circumstances and have been expected to be mired in emotional distress’ (p. 161). Recent research with small sample sizes (n < 70) of children with developmental disabilities indicates maternal sleep disruption and disturbance, and increased risk for anxiety and depression.[1, 2]

Research has consistently shown that children's sleep habits are affected by biological, behavioural and contextual factors.[3] Some studies indicate that infant and childhood sleep issues are associated with maternal mental health including post-natal depression[20] and family routines around healthy sleep habits.[21] Although parental report suggests a higher prevalence of paediatric sleep problems across childhood, a recent review of paediatrician's electronic records (n = 154 957 children aged 0–18 years) revealed that sleep disorders were diagnosed infrequently (3.7%).[22] Factors associated with a diagnosis of a sleep disorder were identified, including preschool or school age, lower socioeconomic status, different than average growth parameters (head circumference and BMI), and comorbid diagnoses such as ASD and Attention Deficit Hyperactivity Disorder.[22]

The nature and effects of sleep interruption experienced by mothers caring for a child with a disability warrant further investigation. This study investigated the frequency and impact of sleep interruption on mothers of school-aged children with developmental disabilities in Victoria, Australia. The aims of this study 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 and life situation of mothers of school-aged children with developmental disability in Victoria, Australia. An initial qualitative study investigated the experience of mothers, and initial design of psychometric instruments and a subsequent study involved mail-out survey with follow-up phone call. Further details of the methodology used in this research are available in another related article[23] and descriptions of scales designed for this research.[20, 24, 25] This study was approved by the La Trobe University Health Science Faculty Ethics Committee.

Participants

Inclusion criteria required: (i) the mother was the primary carer of a school-aged child with a disability; (ii) resident in the state of Victoria; and (iii) able to complete the survey in English. Voluntary participation was sought through parent support disability organisations using a 100-word notice describing research ‘to investigate factors that affect the health of Victorian mothers of a child with a disability’ recruited mothers into the study.

Measures

Demographic data were collected including mother's age; education; marital status; family income and constellation; mother's medical conditions; sleep interruption and frequency that required mothers to attend to their child with a disability; the child's age, diagnosis, and specialised equipment and service needs (see Table 1 and Fig. 1). Service options included medical, education and allied health services such as paediatrician, occupational therapist, psychologist, physical therapist and special education teacher. Overall, eight measurement tools were used to measure aspects about the child, the mother and the environment (see Table 2).

Figure 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 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 motherParticipant status (n = 152)
  1. SD, standard deviation; ADHD, attention deficit hyperactivity disorder; SD, standard deviation.
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
Age9.5 years (3.7)
Most common childhood disability/conditions
Physical disabilityTotal51 (34%)
Cerebral palsy29 (19%)
Developmental delay26 (17%)
Autism spectrum disorderTotal94 (62%)
Autism69 (45%)
Asperger syndrome25 (17%)
OtherIntellectual disability46 (30%)
Language disorder15 (10%)
Epilepsy20 (13%)
Visual impairment14 (9%)
Additional childhood psychiatric diagnosisTotal31 (20%)
ADHD19 (12%)
Pediatric Quality of Life 4.0 (PedsQL) Generic Core Scales parent report scaled scores
Total score44.8 (15.5)
Physical health summary score46.0 (27.1)
Psychosocial health summary score44.2 (16.3)
School function46.8 (21.8)
Social function38.4 (21.2)
Emotional function47.5 (21.6)
Pediatric Evaluation of Disability Inventory (PEDI) care giver scaled scores
Self-care domain52.6 (24.4)
Mobility domain70 (29.4)
Social function domain44.2 (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)
Table 2. Characteristics measured by instruments included in survey and the concepts that were measured
Characteristic measuredInstrumentConcept measured from mother's perspective
Child relatedPediatric Quality of Life Version 4.0 (PedsQL 4.0) parent reportExtent 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 relatedShort 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 relatedFamily Environment Scale: Cohesion sub-scale (FES-CS)Extent of family cohesion that demonstrates how well mother is helped and supported in the family

The Short Form 36 version 2 (SF-36v2), which is a validated and widely used scale, was included to assess subjective health status compared with other Australians.[26, 27] The SF-36v2 has been used extensively in quality of life and health-related research.[28] It yields eight domain scores that represent the person's health status in the areas of physical functioning, role physical (ability to meet physical role demands), body pain, vitality, general health, social function, role emotional (ability to meet emotional role demands) and mental health. Using Australian-based norms (see column one, Table 3),[27] two overall norm-based summary scores were calculated: physical health component score (PCS) and mental health component score (MCS).

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 1Group 2Group 3Kruskal–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 nights/week (n = 35)χ2P
  1. †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.
PCS50.3 (9.7)47.7447.4943.471.8760.39
MCS52.9 (10.2)35.6231.3526.035.9810.05
PF50.6 (9.2)47.8847.8847.881.5990.45
RP50.8 (9.9)43.7738.7943.771.8720.39
BP52.2 (8.9)43.2042.7333.313.0600.22
GH50.5 (10.4)40.9036.3436.345.9740.05
VT51.4 (10.4)38.6435.6432.631.7840.41
SF50.8 (9.7)39.3933.7933.793.4670.18
RE52.0 (8.2)35.7631.0026.23§5.0720.08
MH53.2 (9.6)37.8637.8626.097.4380.02

Four scales assessed childhood disability and needs: Pediatric Quality of Life (PedsQL) Parent Report questionnaire;[29] Pediatric Evaluation of Disability Inventory, Parts II and III (PEDI);[30] the Assistance to Participate Scale (APS);[24] and the Child's Challenging Behaviour Scale.[25] Maternal factors were measured using four scales, including the SF-36v2, and measures of the maternal empowerment over family matters and family cohesion (Family Environment Scales, Family Sub-scale and[31] Cohesion sub-scale of the Family Environment Scale)[32]. Maternal participation in leisure activities that were health promoting was assessed using a scale developed for this study (Health-Promoting Activities Scale (HPAS))[33].

Data management

Data were managed using the SPSS Version 18 statistical package (Chicago, IL, USA). Descriptive statistics were used to describe the characteristics of mothers and children within the sample. Responses to questions about maternal sleep interruptions to address the needs of the child at night were used to classify mothers into three groups based on the frequency that they attended to their child at night, see Figure 1.

Group 1 included mothers who slept through uninterrupted almost every night (n = 77), Group 2 included mothers who were awoken once per night, more than 4 nights/week (n = 36) and Group 3 included mothers who were awoken twice or more per 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 of the mothers who did have interrupted sleep then did not answer the question about how many times they got up in one night, reducing the responses of mothers with interrupted sleep from 74 to 71. Hence, the final groups represent 148 mothers.

Correlations analysis and the Kruskal–Wallis test were then used to investigate differences between groups. The χ2 test was used to compare reported sleep interruptions by mothers of different groups of children according to their primary diagnosis. Norm-based scores were then calculated using published Australian weightings[27] for all health dimensions as well as overall MCS and PCS to allow comparison with the self-reported health of other Australians.

Results

One hundred and eighty mothers responded to the publicised study, and 152 completed the mail-out survey and phone interview (84% response rate). Characteristics of mothers and their children are described in Table 1. Children were mainly boys (n = 104, 68%), and more than half attended a specialised setting for schooling (n = 83, 55%). A wide range of paediatric conditions was reported, with three quarters of children being diagnosed with more than one condition. Measures of disability indicated a wide range of skill levels and daily problems experienced by children as described by their mothers (see Table 1). Eighteen options for services were provided in the mail-out survey booklet, and mothers reported that their child utilised an average of 7.58 (standard deviation (SD) = 3.78) services. Highest service use 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 diagnosed and received treatment for one or more mental health condition, described elsewhere in depth.[23] Forty-nine percent of mothers reported that their child needed frequent night-time attention (see Fig. 1). Nearly one-third of all mothers (32%) reported that they slept continuously through the night less than 1 night/week on a regular basis, including 11% of mothers who reported that they ‘never’ slept through the night without interruption to care for their child. Among the group of mothers who 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% awoken three or more times (n = 13) (see Fig. 1).

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

A series of Kruskal–Wallis tests investigated whether there were differences in the characteristics of children or mothers in Groups 1, 2 and 3 (see Table 4). The groups differed significantly on only one maternal characteristic: participation in health-promoting activities. Mothers who slept uninterrupted (Group 1) participated in health-promoting activities with greater frequency (higher HPAS score). The HPAS measures the frequency that mothers participated in activities such as active or passive recreational pursuits, time alone to do as they wished or with socially supportive others and time planning their own health routines.[20]

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 childGroup 1Group 2Group 3Kruskal–Wallis test
Mothers who sleep though almost every night (n = 77)Mothers who have interrupted sleep once per night more than 4 nights/week (n = 36)Mothers who have interrupted sleep twice or more per night, more than 4 nights/week (n = 35)χ2P
Mother characteristics     
Age4143411.6960.428
Family Environment Scale: Cohesion sub-scale7761.7270.422
Health-Promoting Activities Scale2219.51711.8390.003
Child characteristics     
Age9974.5440.103
Total number of assistive devices1135.3130.035
Total number of paediatric services6791.7480.070
Assistance to Participate Scale (APS)     
Home alone1816.501310.0180.007
Community social121096.5320.038
Total302622.511.4090.003
Paediatric evaluation of disability inventory     
Self-care61.1059.5544.4012.9530.002
Mobility82.5082.5070.5015.5920.000
Social function52.0042.9039.6011.8830.003
Paediatric quality of life scale:     
Physical function53.1345.3131.259.1570.010
Emotional function50.0047.5037.508.0450.018
Social function35.0040.0040.00.1780.915
School function50.0047.5045.003.6300.163
Total score46.7442.9339.6710.1060.006
Child's Challenging Behaviour Scale3436373.4970.174

Children of mothers in Group 3 used significantly more assistive devices (three devices). Children of mothers in Group 3 also used more services (nine services) than other children of mothers 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 and leisure overall, at home and in the community (APS), as well as for self care, mobility and social functioning (PEDI scale). They also experienced the most problems physically and emotionally in daily life (PedsQL scale). χ2 tests revealed no differences between sleep groups in the proportion of children diagnosed with ASD (χ2 = 3.2, d.f. = 2, P = 0.20) or CP (χ2 = 2.58, d.f. = 2, P = 0.28).

Discussion

This research investigates relationships between the frequency that mothers of school-aged children with developmental disabilities attend to their child at night, the impact on maternal subjective health, and associations between sleep interruptions and participation in healthy activities during the day. Mothers attended to their children overnight with regularity: 49% of mothers were awoken once, twice or more, 4 nights/week or more. Maternal report of subjective mental health, general health, sense of vitality, social functioning and capacity to fulfil the emotional aspects of life roles all declined as the frequency of sleep interruption increased. Mothers who participated in health-promoting activities with lower frequency as reported have increased sleep interruptions. The extent of the child's disability and need for care giver assistance during the day was associated with increased care needs overnight.

The frequency of sleep interruption described by mothers in this study has been reported by other mothers. Mothers of younger, typically developing children are known to experience similar sleep interruption. However, the children represented in our study were school aged, and age was not a significant factor in identifying mothers with interrupted sleep (P = 0.103). Bayer et al., surveyed 692 mothers of infants 3–6 months of age and found that 51% experienced sleep interruption more than 4 nights/week, and that sleep problems were associated with poorer maternal mental and physical health.[34] Although mothering an infant is a finite period, mothers in this study represent a group of mothers of school-aged children with disabilities who experience this level of sleep interruption over the long term, with detrimental effects on their health.

Our study found that mothers who were experiencing interrupted sleep regularly (Groups 2 and 3) reported significantly poorer health than mothers in the sample who slept through the night (Group 1) and other Australian adults. Maternal subjective mental health, vitality, social and emotional functioning of mothers were significantly below other Australians for all three groups. Report of body pain was significantly higher for the most sleep-deprived mothers – a concern when the physical caregiving 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 were compared with other mothers in the sample, subjective mental and general health were poor.

Children with the most severe disability, and who required high-level daytime care, also required the most frequent attendance at night. Children experiencing daily physical and emotional problems, who needed the most assistive devices and assistance to participate in play and recreation, self care (including toileting, eating and dressing), mobility (including the need to be lifted or for a mobility device), and social function also required additional night-time care. A recent review of 17 studies investigated correlates with sleep disorders among children with pervasive developmental disorders (PDD)[35] and found that severity of autism symptomatology and internalising behaviours (low mood, anxiety and poor emotional well-being) were the strongest predictors of sleep disorder. These results concur 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 developmental disabilities as having higher prevalence of sleep disorders, including CP.[36] Forty-four percent of the sample of children (n = 174) were scored by their parents as having at least one clinically significant sleep disorder. The extent of physical disability, presence of epilepsy, severe visual impairment and environmental factors such as co-sleeping, single parenthood and parental unemployment were all associated with sleep disorder. Other research and reports verify higher rates of sleep disorders among children with visual impairment,[36] epilepsy,[2] Fragile X and autism,[37] school-aged children with autism,[21, 38] PDD[1, 35] and CHARGE syndrome.[39] The sleep problems of children with physical disabilities were investigated in another study[40] and revealed that 48% of the total sample (n = 505) had sleep problems that required attention at night, according to parents. Other research indicated that difficulty eating and drinking, 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 a sample of mothers who volunteered to participate. Mothers who did respond represented only a small proportion of all mothers caring for a child with a disability: partnered and highly educated. However, there are findings from this cohort of mothers that can assist in the understanding of mothers in this life situation. This research highlighted healthy sleep patterns experienced by a group of mothers reporting better mental health (although still below other Australians). Mothers in this group had children with relatively fewer care needs, better physical and emotional functioning, and such mothers were also attending to their own health, socialising, being physically active and recreating more often than mothers with interrupted sleep. This research cannot make inferences about the direction of such associations but highlights the need for research that will. The successful strategies used and implemented in the homes of mothers who sleep uninterrupted require attention, research and knowledge sharing to inform best practice and advice to mothers who are not sleeping. Future research might utilise population-based samples and investigate prevalence of sleep disorders, reasons for night-time care attention, and the effects of strategies and programmes that are designed to promote healthy sleep habits among mothers and their children.

This research has important implications for direct service providers. Colver described the repertoire of questions that doctors may ask families of pre-school–aged children with disabilities and included the child's behaviour and sleep.[42] Our results suggest that questions regarding sleep/night-time caregiving routines are advisable during consultations with school-aged children with disabilities. Responsive night-time management strategies that may be implemented using allied health services include: pressure-relieving mattresses, adjusted night-time feeding regimes, epilepsy medication review, behavioural management strategies, overnight respite care, appropriate home safety modifications to relieve parental vigilance and consideration of real need for therapeutic night-time devices such as splints and braces. Furthermore, the efficacy of prescribed night-time medications that assist the child to sleep might be described and evaluated in rigorous research so that families can be educated about the options that support the health and functioning of both the child and family.

This study identified a group of mothers who provide care to high needs children around a 24-h clock. Such care requirements are an extraordinary challenge for mothers and indicate that responsive services to relieve carer responsibilities are urgently needed. Considering that children with disabilities are loved and thrive in their family home, further research that identifies the real-life challenges experienced by families charged with their care is paramount.

Ancillary