International Journal of Physical Medicine & Rehabilitation
Open Access

Assessment and Predictive Factors of Sleep Disturbances among Mothers of Children with Cerebral Palsy

Marwa Ghanmi^*, Sahbi Mtawaa, Nedra Elfeni, Asma Bouraoui, Walid Ouanes and Soni Jemni ^*Correspondence: Marwa Ghanmi, Department of Physical Medicine and Rehabilitation, Faculty of Medicine of Monastir, Monastir, Tunisia, Email:

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Introduction

Cerebral Palsy (CP) was defined in the International Congress of Bethesda as permanent disorders in the development of movement and posture caused by non-progressive damage to the developing brain tissue of the fetus, new born or more rarely infant [1]. The motor disorders of cerebral palsy are often accompanied by sensory, perceptual, cognitive, communication and behavioural disorders, by epilepsy and/or by secondary musculoskeletal problems [1]. CP affects 17 million people worldwide with an incidence of 2.11 per 1000 live births in developed countries [2]. However, these numbers are difficult to establish the incidence of cerebral palsy in the majority of developing countries like Tunisia because CP is not captured in the population census or any other survey in these countries [3]. CP can be an obstacle for daily life activities such as eating, dressing and sleeping. Consequently, taking care of a child with CP constitutes a weary situation for the parents [4-9]. It could result in physical, psychological, economic and social difficulties and subsequently induces an alteration of aspects of daily life such as intimacy, leisure time, professional activity and sleep [10]. Children with severe disabilities, who often require additional care during the day time, also require the same care at night. Therefore, sleep disorders in parents of children with CP and especially mothers are often described in the literature [11]. According to a study done in the United States of America in 2013, 44% of mothers with a child with CP suffer from sleep disturbances [12]. Identified factors influencing maternal QOS include the extent of motor deficit, presence of epilepsy, severe visual impairment, and environmental factors such as parental unemployment and shared sleep [13].

Sleep problems are associated with impaired mental and physical health of the mother [13,14]. Indeed, maternal mental health, social and emotional functioning of mothers of children with CP were significantly lower than mothers of a healthy child [13]. On the other hand, several authors have underlined the importance of the family environment and the psychological balance of the parents in the medical management of children with CP [10-12]. Indeed, mothers poor sleep quality may negatively affect the effectiveness of the treatment program for children with CP [15]. In conducting this study, a lack of studies describing the impact of cerebral palsy on maternal sleep quality was noted. The majority of studies focused on maternal quality of life in general and sleep quality is often overlooked. Hence the importance of this study in gathering local data concerning the QOS of mothers of children with CP. The objectives of this study were to assess QOS in mothers of children with CP and determine its associated factors.

Materials and Methods

Type of study

This is a cross-sectional population based study conducted between September 1, 2019 and May 30, 2020.

Study population

All the mothers of the children followed for CP at the outpatient physical medicine and rehabilitation clinics during the study period.

Inclusion Criteria:

• Being a mother of a child with CP aged between 3 and 18.

• Giving free and informed consent.

Non-inclusion criteria:

• Mothers who have a medical condition that may interfere with sleep quality

• Conditions that may interfere with passing the scales such as deafness

• Children with pathologies other than cerebral palsy

• Having another family member with a disabling condition determined by the question: 'Do you or anyone else in your family have a chronic illness or disability?'

• Absence of consent.

Course of the study

Data was gathered from the mothers by a pre-trained doctor using a pre-established questionnaire comprising 3 parts during the consultations of their children with CP. For mothers who did not show up with their children on the day of consultation, data was collected by telephone interview. Medical records were used to collect medical data concerning their children followed for PC.

Collected data and data collection instruments

A three-part questionnaire was designed for the purpose of this work. The first part was devoted to the characteristics of the mothers. The second one was devoted the characteristics of the children. The level of motor impairment was assessed using the Gross Motor Function Classification System (GMFCS) [16-18]. The third part was devoted to the standardized evaluation of sleep quality, screening for anxiety and depression, and mental and physical quality of life. Maternal sleep quality was assessed using the validated Arabic version of Pittsburgh Sleep Quality Index (PSQI) which assesses sleep quality, sleep latency, sleep duration, usual sleep efficiency, sleep disorders, use of sleeping drug and daytime dysfunction. All of these seven components generate an overall score ranging from 0 to 21. A score above 5 reflects disturbed sleep. This threshold of PSQI>5 showed a sensitivity of 89.6% and a specificity of 86.5% to detect a sleep disorder [18]. We used the version translated and validated in Arabic by Suleiman in 2009 after obtaining their consent [19]. Quality of life of mothers was assessed using the SF-12 scale which includes 12 items [20]. We used the validated Tunisian version of the SF-12 [21-28]. The rating of the scores was carried out according to the specific algorithms described in the literature [23,29]. These algorithms give mental and physical health scores that are equal to 50 in the general population. If the respective scores are above the average for the general population, i.e. above 50, the person is considered to be in good mental and physical health. In our work, we used an online tool (https://orthotoolkit.com/sf-12) Screening for Anxiety and Depression was conducted through Hospital Anxiety and Depression scale (HAD). This scale contains 14 items: Seven questions relate to anxiety (total A) and seven others to the depressive dimension (total D), thus making it possible to obtain two scores (maximum score for each score=21). The interpretation of the score according to Zigmond et al. [24] is as follows: From 0 to 7: absence of symptoms; From 8 to 10: doubtful symptomatology; From 11 to 21: definite symptomatology. The validated Arabic version was used in our study [25].

Data analysis

The data collected was entered and analysed using the “Statistical Package for Social Sciences” software SPSS version 21. Qualitative variables were described by counts and percentages. Quantitative variables were described by means and standard deviations. The Chi 2 test was used to compare the percentages. When its application conditions were not fulfilled for the comparison of 2%, Fisher's exact test was used. When its conditions of application were not met for the comparison of several percentages, a grouping of the categories of variables was carried out. The strength of association between the different variables tested was estimated using the calculation of the Odds Ratio (OR) and its 95% Confidence Interval (95% CI). Multivariate analysis was performed using binary logistic regression following the top-down stepwise strategy. The dependent variable was, “impaired quality of sleep”. All the relevant variables that were associated with this dependent variable during the univariate analysis with a degree of significance <0.25 were included in the initial analysis model. All the statistical tests carried out were two-sided with a risk of error set at 5%.

Ethical considerations

This study did not involve any risk for the participants. This study was conducted with respect for the rights and integrity of individuals. The mothers of children with CP were informed about the purpose of the study and the confidentiality of the data that has been collected. They were free to choose whether or not to participate in the study. Written consent from each participant was obtained.

Results

Among 90 mothers of children with CP, 23 did not meet the inclusion criteria. Among those eligible for the study, 13 candidates did not show up for the outpatient consultations and did not answer the telephone call. In total, our study involved 54 mothers.

Descriptive study

Mean age of the participants was 38.6 ± 7.6 years. Mean age of children with CP was 6.9 ± 3.5 years (Table 1). A PSQI score greater than 5 was objectified in 44 (81.5%) of the mothers. The average of this score was 9.7 ± 3.9 (Table 2). HAD score greater than 11 was present in 38 (70.4%) participants for anxiety and in 34 (63%) participants for depression. Concerning maternal Quality of life, mean physical and mental health scores were 42.6 ± 9.9 and 39.3 ± 12.0 respectively. An alteration in the mental quality of life was objectified in 81.5% of the mothers. While the alteration of the physical quality of life was 66.7% (Table 3).

Table 1: Demographic characteristics of mothers and children with CP (n=54).

Table 2: Results of the scores of the components of the Pittsburgh sleep quality index in the mothers of children with CP (n=54).

Table3: Results of the HAD and SF-12 scale sub-scores in the mothers of children with CP (n=54).

Analytical study

Study of the quality of sleep according to maternal data: Among sociodemographic characteristics of the mothers, only age over 35 years was significantly associated with impaired sleep in mothers of children with CP (p=0.023) As for the clinical and demographic characteristics of the children, extensive involvement including hemiplegia, triplegia or quadriplegia was significantly more frequent in mothers with impaired sleep with an OR of 11.8 [1.4; 101.7]. An impaired QOS was significantly associated with anxiety but not with depression (p=0.049 vs p= 0,147). An altered mental quality of life was significantly higher in mothers with impaired QOS (p=0.001) (Table 4).

Table 4: Results of multivariate analysis of factors associated with impaired sleep quality in mothers of children with CP (n=54)

Multivariate analysis

Multivariate analysis revealed that the factors most influencing sleep impairment in participants were: Impaired mental quality of life, topographic damage extending beyond the hemibody and maternal age greater than 35 years (Table 5).

Table 5: Results of multivariate analysis of factors associated with impaired sleep quality in mothers of children with CP (n=54).

Discussion

Caring for children with CP is a laborious task. A good state of mental and physical health of the parents, especially the mothers, is essential in order to ensure good support and good care for these children. Sleep is one of the most important determinants of mental health and maternal quality of life [12]. In accordance with data from the literature, the average age of the participants in our study was 38.6 ± 7.6 years. This age varied between 30 and 50 years ± 26–28, but a maternal age over 35 years is considered an established risk factor for cerebral palsy in infants because they are more likely to have gestational diabetes, a history of miscarriages and cesarean deliveries [29,30]. The majority of mothers were housewives (74.1%) this was also found in the literature with a rate that varied from 80% to 90% [15,26,27,31]. The high rate of maternal unemployment could be explained by the dependence of children with CP on their mothers on the one hand, and the limitation of work opportunities compared to the general population on the other hand. This created an impact on their Socio-economic level and financial difficulties [32-34]. Moreover, in our study, more than half of the mothers (59.3%) had a monthly income of less than 800 DT/month. This study found a significant deterioration in the QOS of mothers with a child with CP (81.5%). Few studies have focused on this subject in the literature and this rate varied between 40% and 50% [12,35-37]. The average PSQI score in our population was 9.7 but in the literature this average was 5.5 [38]. This could be explained by the methodological differences applied in these studies. Indeed, the sociodemographic characteristics of the mothers in the study by Adiga et al. were different from our study population where we find a younger maternal age which varied between 20 and 30 years, and according to Wayte et al. the majority (62.5%) of mothers worked full time while the majority of mothers in our study (70.4%) were housewives [35,38].

According to the univariate analysis in our study, 4 factors influenced the quality of maternal sleep: maternal age greater than 35 years, the presence of maternal anxiety, the alteration of the participants' quality of life and the topography exceeding the hemibody of the child with CP. The first factor was maternal age (over 35) with an OR at 6.2 [1.4;28.1]. Indeed, in our study 72.7% of mothers with impaired sleep were over 35 years old, but this relationship has not been demonstrated in the literature (p=0.167) [15]. One hypothesis could explain this relationship by the alteration of the physiological functions of any individual with age [39]. Consequently, mothers aged over 35 would be more vulnerable to physical and mental exhaustion than mothers aged less than 35, which could subsequently alter the quality of maternal sleep [40]. A study in adults aged 31 to 44 found that sleep quality deteriorated with age [41]. One might assume that the deterioration in the QOS in mothers aged over 35 was related to the large number of dependent children or the fact of having young children who require a lot of attention. Indeed, Mindell et al. demonstrated an impact on sleep quality of preschool children and mothers, however these factors were not correlated in our study with the quality of maternal sleep and this could be due to the size of our sample [42].

The second factor related to impaired maternal sleep quality was anxiety (OR 5.1[1.2; 21.7]). Indeed, 77.3% of participants with impaired sleep had an anxiety syndrome and the average HAD-A score was 14. This score was higher than that found in the literature, which varied between 8 and 10 (62.63) which confirms the high prevalence of anxiety among our participants and the importance of screening for it. Indeed, Gugala et al. observed that mothers of children with CP had a higher HAD score than fathers by 1.11 points [43,44]. This was explained according to Byrne et al. by the fact that mothers of children with CP spent more time caring for their children and that mothers felt a higher burden [37]. In the literature, anxiety was a factor influencing maternal QOS quality through maternal stress [45]. This relationship was confirmed by a study carried out on a sample of 338 Japanese adults, in whom the presence of anxiety disorders altered the quality of their sleep (65.66). According to Gugala et al. factors that increased maternal anxiety were low educational level and impaired physical health of mothers. Regarding the factors that diminished it, we cite the perception of family support and financial stability [43]. These factors could explain the rate of anxiety in the mothers of the children with CP in our study because half (55.6%) of the mothers were either illiterate or at the primary level and the physical quality of life was impaired in 66.7% of the participants.

The 3^rd factor intervening on the quality of maternal sleep in our study was the altered maternal quality of life (OR 68.4 [3.5-1312.1]). Indeed, among the mothers with impaired sleep, it was found that 90.9% of the participants had an impaired quality of life. This has been confirmed in the literature where there is a significant relationship between maternal quality of life and sleep quality (p=0.05) [15]. The quality of life of mothers of children with CP was widely reported in the literature [15,26,28,31,46-50]. It was significantly more impaired than that of mothers of healthy children and this was explained by the fact that mothers of children with cerebral palsy are more exposed to psychological constraints, and are often worried about the future of their children plus most of their time is spent on daily child needs such as food, transportation and medical appointments [50]. Mental quality of life includes an individual's mental health, such as depression. Indeed, sleep allows tissue repair and cell multiplication. Consequently, a sleep deficit can have an impact at the cognitive level and subsequently generates mood disorders such as anxiety [45]. The risk of emotional instability is more frequent in case of sleep disorders as well as depression [45].

This was demonstrated in our work with the presence of a depressive syndrome in two thirds of the participants (68.2%) (n=30) with impaired sleep. However, the relationship between impaired sleep and depressive syndrome was not significant (p=0.147). In opposition with our results, Richdale et al. reported that maternal QOS was significantly correlated with maternal depression (p<0.01), anxiety (p<0.01), stress intensity (p<0.01) and frequency of sleep stress (p<0.01) [50]. This could be explained by the methodological differences between our study and that of Richdale et al. whose children's ages varied between 2 and 12 years and the questionnaire used to measure maternal anxiety also included the measurement of maternal stress [50]. Yilmaz et al. for example showed a statistically significant relationship between depression and anxiety scores in mothers of children with CP and those with a child with normal development (p<0.001) [51]. The last factor intervening in the alteration of the quality of sleep in our study was the extent of the topographic involvement of the child with CP (OR 25.6 [1.1-587.3]). Studies on this matter were controversial. Some studies have found a link between the topographic impairment of children with CP and maternal sleep quality and others have not found a relationship with gross motor classification according to the GMFCS scale.

Regarding the topographic involvement of children with CP, among the mothers with sleep disorders in our study, 56.8% had a quadriplegic, hemiplegic or quadriplegic child and 81.8% had a child with a spastic form. This could be explained by the presence of significant muscle pain and frequent nocturnal involuntary movements with extensive topographic involvement and with the presence of spasticity, moreover, this explanation has been highlighted in several studies [36,52,53].

The relationship between the Gross Motor Function Classification System (GMFCS) and maternal sleep quality was not significant (p=0.494). This was also demonstrated in the literature (16.51). The absence of the GMFCS V stage in our sample could explain the absence of this relationship because according to Horwood et al. sleep-wake alternation disorders and sleep-disordered breathing were more common in children with GMFCS stage VCP than those with stages I, II, and III [54]. Four factors having a statistically significant relationship with impaired maternal sleep quality were identified. However, other factors influenced maternal sleep quality without having a statistically significant relationship. Housewives had more impaired sleep than working women, but the relationship between mothers' working status and sleep quality was not statistically significant (p=0.103). A hypothesis was proposed by Manuel et al. indicating that working mothers are less likely to be socially isolated [55]. Therefore, mothers depressed due to social isolation may find it difficult to manage their sleep problems. Low socioeconomic status was responsible for 40% of impaired maternal well-being [56]. In our study, a monthly income of less than 800 DT/month was reported by 59.4% of the participants. This could be explained by the lack of work of the participants with a rate of 74.1% housewives either for lack of time or because of their educational level.

The QOS was not influenced by the behavioral disorders of children with CP (p=0.183), which opposes data from the literature which classified these disorders as a risk factor. Impaired sleep quality in children with CP and therefore impaired maternal sleep quality [54,55]. Indeed, the presence of behavioral disorders in children with CP induces problems of resistance to bedtime by having tantrums or requiring rituals before bedtime [56-60]. The majority of children affected by CP (79.6%) were fitted with an orthopedic brace at night, but in our study there was no statistically significant relationship between the fitting of the children and the quality of maternal sleep altered (p=0.185). The absence of this correlation has been reported in the literature (85.88) and it was explained according to Mol et al. by abandoning the use of orthoses during the night when this caused sleep disorders in children [61]. The absence of studies in our country dealing with maternal sleep disorders indicates that the mental health of mothers of children with CP is often overlooked. However, a preserved maternal mental health guarantees better care for the child with CP. It is therefore essential to give importance to this health problem in order to promote early intervention and form educational programs for mothers.

The study carried out an evaluation using validated scales. In order to minimize data collection bias, the interviewer received training prior to passing the various assessment scales. Explanations regarding the nature and purpose of the work have been advanced to minimize social desirability bias. We performed a multivariate analysis to control for confounding variables and highlight the determining factors independently influencing maternal sleep quality. However, our study has some limitations that should be noted. The cross-sectional nature of the present study did not allow us to report causal links. A prospective longitudinal study with long-term follow-up would make it possible to better study the prognosis of CP in children and its impact on the health of their mothers as well as on other people around them. Since CP is a rare disease, the size of our sample was not large. The strength of association between impaired sleep and the various explanatory variables was estimated using odds ratios, which could be the cause of an overestimation of this strength. Furthermore, the estimated confidence intervals were wide due to the small sample size. Given that CP is a rare disease, an analytical case-control study with a sufficient number of controls would make it possible to better study these risk factors.

In view of the heavy psychological impact of CP on the mental health of the mother, the first recommendation that emerges, and to make doctors treating children with CP aware of the importance of psychological care for the patient's family members such as the mothers who are often present during the consultation. They must be attentive to their needs by providing continuous support for the different stages of care for children with CP. They must also facilitate the verbalization of their emotions and the difficulties encountered by these mothers. Appropriate strategies to help parents of children with CP need to be developed. Moreover, health personnel can use the questionnaires used in our study, such as the HAD scale, to detect symptoms of psychological distress such as depression and anxiety at an early stage. If a depressive or anxiety disorder is detected, multidisciplinary care involving psychologists, social workers and careers should often be established. Consequently, it is necessary to encourage decision-makers to generalize these items in the various hospitals in order to provide psychological, social and financial assistance to parents and thus facilitate the management of expenses related to equipment and appliances that are often not covered or partially covered by social funds [33,62-64]. Especially since the majority of participants in our study had a modest monthly income (59.3%) Studies have shown the benefit of a financial support policy provided to parents of children with CP in the sense of reducing stress parental (89,90). Non-governmental organizations and associations could greatly contribute in this direction and provide both financial and psychological assistance.

The creation of discussion groups for families with a disabled child would make it possible to share their suffering, to seek collective solutions and even to do leisure activities together, which would considerably reduce mental health problems in their homes. However, parents of children with disabilities often do not have enough time for leisure activities, which increases their feelings of stress [64]. Dedicated child care facilities for children with disabilities can provide free time for their parents and solve this problem. This would allow better management of stress caused by daily constraints and improve their psychological well-being. Thus, a decrease in maternal psychological distress could create a more favorable environment and guarantee better care for the child.

For certain cases that are difficult to manage or for which the parents cannot provide daily care on their own, home care workers or even specialized accommodation structures are necessary. It is also necessary to emphasize the importance of specialized structures in the care of children with CP such as therapeutic and educational institutes which welcome children with significant behavioral disorders, and which guarantee the integration of these children into educational establishments. Collective information and education sessions for parents of children with CP would facilitate the understanding and management of their children's disabilities. Thus their feeling of competence would reduce the stress at home [65]. Other prospective studies and on larger samples on a national scale are necessary in order to better understand the factors involved in the deterioration of the quality of maternal sleep in order to prevent them. The study of QOS in children with CP is necessary because of the relationship between the alteration of their sleep quality and that of their mothers. Finally, fathers of children with CP should be included in future research since previous studies have suggested that fathers of children with developmental disabilities also experience impaired sleep quality [66].

Conclusion

In recent years, several studies have focused on the quality of life of mothers with a child with CP. Still, the study of maternal QOS and its impact on quality of life and maternal mental health is a subject that has attracted less attention but which undoubtedly has the same objective. Therefore, this work aimed to assess sleep quality in mothers of children with CP and to determine the factors associated with impaired sleep quality in them. Maternal QOS was impaired in 81.5% of the cases. The main factors influencing maternal sleep quality in this study were maternal age greater than 35 years, the presence of maternal anxiety, impaired quality of life in the participants and topographic damage extending beyond the hemibody in children with CP. The majority of participants had depressive (70.4%) and or anxious (63%) symptoms with an impaired mental and physical quality of life respectively in 66.7%. and 81.5% of our sample. This work, despite its limitations, sheds light for health professionals on the various possible solutions aimed at improving maternal quality of life by emphasizing the importance of good support from the attending physician by ensuring good listening in order to help mothers to verbalize their emotions and the difficulties encountered on the one hand and the granting of particular attention to maternal mental health by using an adapted questionnaire during the consultation in order to detect early psychological distress in these mothers of 'somewhere else. In the event of a disorder detected by the attending physician, care should be multidisciplinary, involving a psychologist and social workers. More research is still needed to detect other factors associated with impaired sleep quality in them and this for the purpose of contributing to better care for children with CP.

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