The impact of life of a child with cerebral palsy on the quality of life of mothers: Tuzla Canton/Bosnia and Herzegovina

Abstract

The aim of the study was to examine the impact of the quality of life of children with cerebral palsy (CP) on the quality of life of mothers. A total of 122 subjects participated in the study. The general quality of life assessment of paediatric subjects PedsQL^TM 4.0 Generic Scale and the specific PedsQL^TM 3.0 Module Cerebral Palsy Version 3.0 were used to assess the quality of life of children with CP, and the quality of life of mothers was assessed with the PedsQL^TM 2.0 Family Impact Mode Questionnaire. In the present study, the quality of life of mothers is influenced by the physical and social functioning of the child, while the impact of emotional functioning has not been proven. The specific difficulties faced by children with CP, which have a statistically significant effect on the overall quality of life of the mother, are present in the domains: daily activities, mobility and balance and nutrition. The assessment of the quality of life of mothers and children with CP should be an integral part of the clinical assessment, as this will enable professionals to participate more successfully in providing professional assistance in the form of services, therapeutic approaches and prevention programs.

INTRODUCTION

Childcare is considered to be a common and normal parental obligation. The increased intensity of care for children with longtime limitations can become a burden for parents and affect their mental and physical health [1–4].

It is mothers who usually take over the care of diseased children [5,6]. They spend most of the time with the child from the earliest days, which is especially emphasised when it comes to a diseased child, so that they also bear the brunt of the burden in families with a child with disabilities. The mother must face the child’s diagnosis, provide her/him with special care, be actively involved in the treatment program, her lifestyle is adapted to the child’s condition [7–9], stays with the child in hospitals during frequent and long hospitalizations, and is under the greatest emotional strain due to their child’s condition [10]. Cerebral palsy (CP) is a non-progressive, permanent developmental disorder [11,12]. It is defined as a chronic condition characterised by a number of functional limitations resulting from damage to the developing central nervous system [13,14]. Damage that occurs in the foetal brain or early in life can lead to sensory, cognitive and motor disorders with certain functional limitations. Children may have difficulties in self-care (feeding, dressing and personal hygiene) and mobility [15]. The worldwide prevalence of this disorder is estimated at 2–2.5 cases per 1,000 live births in developed and around 7 per 1,000 newborns in underdeveloped countries [16,17]. The quality of life is defined as the individual experience of satisfaction with all aspects of life, that is, the perception of one’s own well-being and satisfaction with life, including physical, social, economic and psychological well-being, as well as a sense of positive social inclusion and the ability to realise one’s own potential [18–20].

Measuring the quality of life of persons caring for children with chronic illnesses provides insight into the difficulties they face in the ongoing process of nurturing and caring for a child [21,22]. In this study, we were interested in whether the quality of life of a child with CP influences the quality of life of their mothers.

MATERIALS AND METHODS

Sample

A total of 122 subjects (61 children and 61 mothers) participated in the study. The sample was consecutive and consisted of children with CP and their mothers who bring them for examination or outpatient treatment at the Clinic for Physical Medicine and Rehabilitation of the University Clinical Center Tuzla or at the Center for Children with Multiple Disorders ‘Koraci nade’ in Tuzla. The criteria for participation in the study were for children: age 5–18 years, diagnosed with spastic form of CP, signed informed consent of parents to participate in the study, with permanent residence in the Tuzla Canton. Excluding criteria are respondents under 5 and over 18 years, respondents who, due to their level of mental development and education, are unable to complete the quality of life questionnaires independently, refusing to participate and sign informed consent. Including criteria for mothers: to have a child with CP (spastic form) aged 5 to 18 years, not to have children diagnosed additionally with a chronic illness and not to have any other diseased children in the family, mothers not diagnosed with a mental and/or chronic illness before the birth of a child, with permanent residence in the Tuzla Canton.

Measuring instrument and procedure

The General PedsQL™ 4.0 Questionnaire consists of 23 questions divided into 4 areas: physical health and activities: (8 questions), emotional health (5 questions), social activities (5 questions) and school/kindergarten activities (5 questions) [23]. The Specific Questionnaire PedsQL™ Modul Cerebral Palsy Version 3.0 contains a total of 35 ranging from 7 areas: daily activities (9 questions), school activities (4 questions), mobility and balance (5 questions), pain (4 questions), fatigue (4 questions), nutrition (5 questions), speech and communication (4 questions). The Questionnaire PedsQL™ 2.0 Family Impact Mode contains eight subscales with a total of 36 questions as follows: physical functioning (6 questions), emotional functioning (5 questions), social functioning (4 questions), cognitive functioning (5 questions), communication (3 questions), worries (5 questions), daily activities (3 questions) and family relations (5 questions) [24]. Questions are given in each section of the questionnaire referring to problems that a child and a mother have in performing certain activities as a result of the child’s health, during the last month and one answer is selected. A three-step Likert’s scale was used for the age 5–7 (0 = it never presents a problem, 2 = it sometimes presents a problem, 4 = it almost always presents a problem) and a five-step scale was used for children aged 8–18 years and for reports received from mothers (0 = it never presents a problem, 1 = it almost never presents a problem, 2 = it sometimes presents a problem, 3 = it often presents a problem and 4 = it almost always presents a problem). During the data processing responses are graded in reverse and a linear transformation in the 0–100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25 and 4 = 0) is conducted so that the higher the sum of points, the better the quality of life. The total score is calculated as the arithmetic mean of the values of the questions answered. If more than 50% of the answers to questions in a particular area are missing, the results of that area do not count. If less than 50% of the answers to questions in a particular area are missing, it is necessary to calculate the average of the area based on the answered questions. Since more than 50% of children who participated in this research did not attend school/kindergarten, the domains of school/kindergarten activities, psycho-social functioning and overall score were not examined by general questionnaire [25].

Statistical analysis

The data were analysed using the Statistical Package for Social Sciences version 23 computer program (SPSS Inc., Chicago, IL). Descriptive methods were applied to represent the basic demographic characteristics of the sample. In order to check the normality of the data, the Kolmogorov–Smirnov test was applied, accepting significance at the p < 0.05 level. Since the data collected through the questionnaires did not follow the normal distribution, non-parametric statistical tests were used. The relationship between subjectively perceived quality of life of mothers (as measured by PedsQL^TM 2.0) and subjectively experienced quality of life of children with CP (as measured by PedsQL^TM 4.0 and PedsQL^TM 3.0) was investigated using Spearman’s (rho) rank correlation.

RESULTS

Of the 61 children with CP, 33 (54%) were males and 28 (46%) were females. The median age of the mothers was 36 years (children 8.7 years). Nine (14.8%) children had spastic hemiplegia, 37 (60.7%) spastic diplegia and 15 (24.6%) spastic quadriplegia. There were 34 immobile examinees with CP (55.74%), movable with aids 14 (22.95%) and 13 (21.31%) who can move independently.

The conducted correlation analysis showed that the overall quality of life of mothers of children with CP depends on the physical and social functioning of the child, while the emotional functioning of the child does not significantly affect the quality of life of the mother (Table 1).

Table 1.

Effect of physical, emotional and social functioning of children with CP measured with general questionnaire on specific domains of quality of life of mother.

Mothers	PedsQLTM 2.0	PF	EF	SF	CF	C	W	DA	FR	OS
children	PedsQLTM 4.0
PF1	Spearman	0.393**	0.396**	0.328**	0.410**	0.278*	0.160	0.472**	0.123	0.435**
	p	0.002	0.002	0.010	0.001	0.030	0.218	0.000	0.345	0.000
	N	61	61	61	61	61	61	61	61	61
EF1	Spearman	0.042	0.065	0.083	0.136	0.059	0.033	0.124	0.026	0.078
	p	0.747	0.618	0.523	0.297	0.650	0.802	0.339	0.844	0.551
	N	61	61	61	61	61	61	61	61	61
SF1	Spearman	0.312*	0.225	0.387**	0.342**	0.155	0.300*	0.265*	0.251	0.365**
	p	0.015	0.081	0.002	0.007	0.232	0.019	0.039	0.051	0.004
	N	61	61	61	61	61	61	61	61	61

C, Communication; CF, Cognitive functioning; DA, Daily activities; EF, Emotional functioning; FR, Family relations; PF, Physical functioning; OS, Overall score; SF, Social functioning; W, worries.

^**Correlation significant at the level of 0.01;

^*Correlation significant at the level of 0.05.

The coefficients of Spriman’s rank correlation show that of the specific difficulties encountered by children with CP, the domains of daily activity, mobility and balance and nutrition have the greatest influence on the overall subjectively perceived quality of life of mothers. The domains of pain, fatigue and speech and communication did not affect mothers’ overall quality of life (Table 2).

Table 2.

The effect of specific domains of quality of life of children with CP measured with specific questionnaire on the quality of life of mother.

Mothers	PedsQLTM 2.0	FF	EF	DF	KF	K	B	DA	PO	OS
children	PedsQLTM 3.0
DA1	Spearman	0.258*	0.327*	0.413**	0.318*	0.196	0.288*	0.384**	0.152	0.394**
	p	0.045	0.010	0.001	0.013	0.131	0.024	0.002	0.242	0.002
	N	61	61	61	61	61	61	61	61	61
W1	Spearman	0.315*	0.353**	0.368**	0.437**	0.225	0.179	0.555**	0.157	0.438**
	p	0.013	0.005	0.004	0.000	0.081	0.166	0.000	0.228	0.000
	N	61	61	61	61	61	61	61	61	61
F	Spearman	0.008	−0.014	−0.037	0.202	−0.200	−0.123	0.048	−0.312*	−0.024
	p	0.950	0.916	0.778	0.119	0.878	0.346	0.715	0.014	0.852
	N	61	61	61	61	61	61	61	61	61
NUT	Spearman	0.258*	0.260*	0.235	0.214	0.241	0.294*	0.256*	0.239	0.338**
	p	0.044	0.043	0.068	0.098	0.061	0.021	0.046	0.063	0.008
	N	61	61	61	61	61	61	61	61	61
SC	Spearman	0.118	0.295*	0.142	0.297*	0.307*	0.061	0.384**	−0.094	0.235
	p	0.367	0.021	0.276	0.020	0.016	0.640	0.002	0.472	0.068
	N	61	61	61	61	61	61	61	61	61

C, Communication; CF, Cognitive functioning; DA, Daily activities; EF, Emotional functioning; F, Fatigue; FR, Family relations; MB, Mobility and balance; NUT, Nutrition; P, Pain; PF, Physical functioning; OS, Overall score; SC, Speech and communication; SF, Social functioning; W, worries.

^**Correlation significant at the level of 0.01;

^*Correlation significant at the level of 0.05.

DISCUSSION

Analysing the results of this study, which examined the impact of results on specific domains of quality of life of children with CP on certain domains of quality of life of mothers, we found that the physical functioning of the child was related to physical (Spearman’s rho = 0.393; p = 0.002), emotional (Spearman’s rho = 0.396; p = 0.002), social (Spearman’s rho = 0.328; p = 0.010) and cognitive (Spearman’s rho = 0.278; p = 0.030) maternal functioning, with daily activities (Spearman’s rho = 0.472; p = 0.000) and overall quality of life (Spearman’s rho = 0.435; p = 0.000) of the mother, whereas no relatedness has been demonstrated with care and family relationships. Social functioning of the child is associated with social functioning (Spearman’s rho = 0.387; p = 0.002), cognitive functioning (Spearman’s rho = 0.342; p = 0.007) and overall quality of life of the mother (Spearman’s rho = 0.365; p = 0.004), while it is less closely related to physical functioning (Spearman’s rho = 0.312; p = 0.015), care (Spearman’s rho = 0.300; p = 0.019), and mother’s daily activities (Spearman’s rho = 0.265; p = 0.051). There is no correlation between the child’s social functioning and the mother’s quality of life in the areas of emotional functioning, communication and family relationships. Furthermore, the results showed that the child’s emotional functioning did not significantly affect the examined domains of the mother’s quality of life.

Glasscock [26] and Koman et al. [27]. indicate that CP has not only a medical but also social, psychological and economic impact on the overall quality of life of a person with CP and her/his environment, which is consistent with the results of our research. Numerous studies have shown that the psychological and physical health of a parent is greatly influenced by the child’s developmental status, her/his behaviour and the demands placed before her/him [28,29]. A study involving 818 respondents from 7 countries showed that the severity of motor and intellectual impairment in children with CP was strongly associated with a poorer parental report on quality of life in the domains of physical well-being, autonomy and social support [30]. Our results are in concordance with the results of studies confirming that the constant care of a child with CP adversely affects the physical domain of caregiver’s quality of life [2 22,31,32]. In our study, no association was found between the physical, social and emotional functioning of a child and the quality of family relationships, but according to some studies parents of children with the most severe disabilities or health needs were at the highest risk for problems with family functioning [33].

The results of our study indicate that among specific difficulties encountered by children with CP, the overall quality of life of mothers is moderately influenced by the results achieved in the domains of daily activities (Spearman’s rho = 0.394; p = 0.002), mobility and balance (Spearman’s rho = 0.438; p = 0.000) and nutrition (Spearman’s rho = 0.338; p = 0.008). The overall quality of life of the mother was not affected by the domains of pain, fatigue and speech and communication of a child.

Long-term care of a child with CP can affect the physical, social and emotional health of the caregiver, as well as their well-being, marital status, employment and financial status [34,35] and social relationships [36]. All the above mentioned can later lead to a deterioration in the health and quality of life related to the caregiver’s health [11,15,37–43]. For the organization of family life with a child with CP, the functional abilities of the child which mainly depend on the degree of disability, are paramount. The independence of the child in daily life does not require family members to increase the amount of time, effort and care needed, nor does it require special organization in the child’s environment. The restriction on the independence of the child presents a greater burden for parents [44,45]. Often, family members face difficulties while completing all the demands of daily life, and they also struggle to maintain interpersonal relationships [46]. Mothers invest a lot of time in childcare and do not have enough time to meet their own social needs, which has an impact on physical and mental health, well-being, marital status, employment, financial situation and sometimes mental well-being [34], and it can lead to the redefinition of family roles, which can result in a decrease of income and a decrease in maternal independence [47]. The most common difficulties that parents of children with CP report in studies are: altered relationships with friends, major changes in family activities, health problems, medical costs, the need for specialised childcare, time-consuming responsibilities, as well as intra-family tension [48]. It is therefore essential that professionals include not only children but the whole family in the CP-induced treatment [49], and understanding how child’s condition can affect the caregivers can improve the treatment of the whole family [50].

CONCLUSION

The quality of life of mothers’ of children with CP depends on the quality of life of their children. The quality of life of mothers is influenced by the physical and social functioning of a child, whereas it is not influenced by emotional functioning. Specific difficulties that children with CP face and that have statistically significant impact on the overall quality of life of the mother are present in the following domains: daily activities, mobility and balance and nutrition. The assessment of the quality of life of mothers and children with CP should be an integral part of the clinical assessment, as this will enable professionals to identify determinants of the quality of life of these populations and to participate more successfully in providing professional assistance in the form of services, therapeutical approaches and prevention programs.