Quality of life in mothers of children with cerebral palsy

Abstract

Four hundred and twenty-four Iranian mothers of children with cerebral palsy (CP) were recruited using the convenience sampling approach in a cross-sectional study. The researchers assessed the quality of life (QOL) in mothers according to the gross motor function levels and types of CP. The evaluation was done using a well-validated Persian version of the 36-item Short Form Health Survey (SF-36) questionnaire. In 2012, demographic data and clinical relevant information were also collected in rehabilitation clinics affiliated to Tehran University of Medical Sciences. The results indicated that the mean score for the study sample on physical component summary (PCS) and mental component summary (MCS) was 39.21 and 41.23, respectively. This suggests that participants considered themselves to have a low QOL (p < .05). The mean PCS scores for SF-36 were significantly different between mothers having CP children of different age, levels of motor function, and CP types (p < .05 and p < .01, respectively). The results indicate that mothers of children with CP suffer from poor physical and mental health. Therefore, particular attention should be paid to the QOL in mothers of children with CP, and rehabilitation professionals should offer supportive strategies to promote aspects of their QOL.

Keywords

Cerebral palsy children gross motor function mothers quality of life

Introduction

When a child has a disability, most families experience some distress. Parents may experience emotional stress, anxiety, fear, and guilt (Dale et al., 2006). They may have to rearrange their way of life to accommodate their child, and the child’s problems such as generalized motor disabilities, absence of language, and behavioral difficulties are likely to exacerbate stress levels. The significant difficulties associated with cerebral palsy (CP) often necessitate that parents or primary caregivers gain additional skills and knowledge. They may also incur additional expenses that go beyond what is usual in raising a child.

CP is a lifelong developmental disability with serious impairments in general motor skills. In this study, the impact of having a child with CP on mothers is investigated. Children with CP have difficulty with posture control and motor skills; and depending on the type and severity of their brain injury, some of them may also have cognitive, intellectual delays, seizures, or secondary musculoskeletal problems. These limitations increase with age (Miller, 2004). The task of caring for a child with CP is an intense kind of parenting that encompasses many unusual tasks, such as providing direct assistance in activities of daily living (ADLs). The mother’s direct involvement is needed to facilitate the developmental process and participation of children with CP in doing ADLs.

Providing acceptable care for a child with long-term functional limitations may impact on the quality of life (QOL) of mothers. The World Health Organization (WHO) defines QOL as ‘the individual’s perception of their position in life in the context of their culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns’ (World Health Organization, 1997). The result of a qualitative study demonstrated that CP had an unfathomable impact on QOL of mothers (Davis et al., 2010). Bourke-Taylor et al. (2012) reported that mothers of children with disabilities had higher rates of depression and anxiety in comparison with other Australian women and the general population. Poor health of the mother resulted in decrease in work productivity and increase in health care costs. This, in turn, had a negative impact on the child, the family, and the community. Furthermore, increased services and costs were incurred by families of children with CP (Brehaut et al., 2004). It should be stressed that families who have a child with CP are not automatically disadvantaged. Rentinck et al. (2007) found that some families have been able to cope successfully and keep potentially stress situations under their control.

In Iran, CP is the most common physical disability in childhood, occurring in 2:1000 live births (Joghataei et al., 2002). Mothers of children with CP spend more time caring for their children (Rassafiani et al., 2012), and this is likely to be detrimental to both the physical and mental health of the mother. Furthermore, in spite of a worldwide focus on QOL in mothers of children with CP, there is a dearth of similar studies in Iran and these have small sample sizes (Ahmadizade et al., 2012; Dadkhah et al., 2009).

Hypothesis

Based on the information presented above, the researchers hypothesized that the QOL of mothers of children with CP would be impacted by the gross motor function, type of CP, and age of their children.

Hence, this study was conducted to examine QOL in a large sample of Iranian mothers of children with CP, with reference to the gross motor function and type of CP of their children using 36-item Short Form Health Survey (SF-36) questionnaire.

Methods

Study design and participants

A cross-sectional method was used for the present study. The study samples consisted of 424 mothers of children with CP recruited through a convenience sampling strategy from different clinics under the supervision of Tehran University of Medical Sciences (TUMS) in Tehran (capital of Iran), during 2012. Mothers of children who met the following inclusion criteria were included in the study: caring for a child aged less than 18 with CP free from any mental and emotional disability or physical disease such as rheumatoid arthritis and lupus. The exclusion criterion was caring for more than one child with CP.

Furthermore, the QOL of mothers in the present study was compared with QOL of Iranian women (N = 2166) in a large population-based study (Montazeri et al., 2005). The study was approved by the ethical committee of TUMS, and all participants were informed about the study objectives, and their written and signed consent forms were obtained. Questionnaires were anonymous and the information collected confidentially by the researchers. Although participants were informed that they could withdraw from the study or ask for emotional supports and counseling due to the possible psychological stress as a result of the participating in the study, none of them requested this service.

Measures

Data were collected using the recently validated Persian version of the SF-36. The reliability of the Persian version of SF-36 was confirmed with Cronbach’s α of .72–.94 and convergent validity with correlation coefficient (r) of more than .40 (Montazeri et al., 2005).

Subtypes of CP were classified according to the quality and topographical pattern of motor impairment (Shevell et al., 2008). Similarly, another objective assessment was used to assign functional mobility according to the Gross Motor Function Classification System Expanded & Revised (GMFCS E&R). Children at level I of GMFCS E&R could walk and perform all the activities of age-matched peers, albeit with limitations of speed, balance, and coordination. Children at level V had to be transported, had extreme difficulties with trunk posture, and little voluntary control of limb movements (Morris, 2007). This Persian-translated classification system indicated good reliability (Dehghan et al., 2011).

The assessment protocols were followed by all subjects. The distribution of CP subtypes was determined by a pediatric neurologist, and an occupational therapist categorized all subjects according to GMFCS E&R levels in the rehabilitation clinics affiliated to TUMS. The QOL of their mothers was assessed with SF-36 by a trained independent assessor who was not directly involved in the study.

Data analysis

Quantitative data were expressed as mean, standard deviation, frequency, and percentage, respectively. One-sample multivariate Hotelling T ² was used for comparing the mean scores in different domains of participants’ QOL with the counterpart values of the Iranian general population. Multivariate analysis of variance (MANOVA) was used for comparing the physical and mental scores of QOL in terms of GMFCS E&R levels, age-groups, and types of CP. Tukey’s test was used as a post hoc pairwise comparisons statistical test. Normality of study variables was evaluated using Kolmogorov–Smirnov statistical test, and multivariate homogeneity of variance was assessed using Box’s M test. All statistical analyses were done using Statistical Package for social Sciences 16.0 statistical software (SPSS Inc, Chicago, Illinois, USA).

Results

The sample consisted of 424 mothers of children with CP in the rehabilitation outpatient clinics affiliated to TUMS. Demographic data of participating mothers and their children with CP are shown in Table 1. As illustrated, the majority of such participants were householders (92%). The mean age of mothers was 35.27 (SD = 6.34) years and the mean age of children was 7.10 (SD = 3.25) years, of whom 55% were boys.

Table 1.

Demographics and clinical characteristics of the study participants (n = 424).

Demographic characteristics of mothers			n (%)
Age (years; mean ± SD)			35.27 ± 6.34
Marital status	Married		420 (99.05%)
Marital status	Divorced		4 (.94%)
Level of education	Illiterate		8 (1.9%)
	High school		135 (31.8%)
	Diploma and associate degree		214 (50.5%)
	Bachelor’s degree or higher		67 (15.8%)
Job	Householder		390 (92%)
	Part time		–
	Full time		34 (8%)
Number of children at home	1		243 (57.3%)
Number of children at home	2		124 (29.2%)
	3		57 (13.4%)
Demographic and clinical characteristics			n (%)
Sex	Girls		190 (44.8%)
Sex	Boys		234 (55.2%)
Age (years; mean ± SD)			7.10 ± 3.25
	0–≤2		13 (3.1%)
	2–≤4		45 (10.6%)
	4–≤6		88 (20.8%)
	6–≤12		231 (54.5%)
	12–≤18		47 (11.1%)
Type of CP	Spastic	Hemiplegia	34 (8%)
		Diplegia	132 (31.1%)
		Quadriplegia	150 (35.4%)
	Dyskinetic		51 (12%)
	Ataxic		24 (5.7%)
	Hypotonic		33 (7.8%)
GMFCS E&R	I		40 (9.4%)
	II		73 (17.2%)
	III		109 (25.7%)
	IV		72 (17%)
	V		130 (30.7%)

GMFCS E&R: Gross Motor Function Classification System Expanded and Revised.

Descriptive findings from different domains of SF-36 are given in Table 2. Table 2 also provides the results of multivariate one-sample Hotelling T ² for comparing the mean scores of different subscales of SF-36 in the sample with counterpart values of Iran’s general population. The mean scores of all subscales were significantly lower than general population (p < .01).

Table 2.

Mean of SF-36 scores in the mothers of children with CP and a general Iranian population (higher scores indicate a better condition).

SF-36 subscales	Mean (SD)	General population mean (SD); N = 2166^a	p Value
Physical functioning	55.35 (24.76)	82.9 (22.1)	.001
Role limitations due to physical problems	29.59 (34.96)	66.5 (39.1)	.004
Body pain	47.40 (22.34)	76.4 (26.2)	.001
General health perceptions	43.58 (21.95)	65.0 (20.8)	.001
Vitality	42.09 (19.88)	62.9 (17.8)	.001
Social functioning	48.61 (23.55)	74.2 (25.1)	.001
Role limitation due to emotional problems	29.24 (36.78)	61.4 (42.4)	.004
Mental health	49 (20)	65.0 (18.6)	.001
PCS	39.21 (8.40)	–	–
MCS	41.23 (9.97)	–	–

SF-36: 36-item Short Form Health Survey; PCS: physical component summary; MCS: mental component summary.

^aDerived from a study by Montazeri et al. (2005).

Table 3 shows the results of MANOVA for comparing the mean scores of different subscales of SF-36 among mothers according to GMFCS E&R, age, and type of CP. Results showed that the mean scores of physical functioning, body pain, and social functioning were significantly different among mothers having children with different levels of gross motor function (p < .01). Also, in the mean scores of physical functioning, body pain and social functioning (marginally) were significantly different among mothers of children in different age-groups and age levels (p < .05, p < .1). As shown in Table 3, based on MANOVA’s results, the mean scores of physical component summary (PCS) of SF-36 were significantly different among mothers having children with different levels of gross motor function (p < .01). Tukey’s test post hoc pairwise comparisons showed that the observed differences were related to level I from other levels of gross motor function. This finding indicates that mothers having children with better gross motor function were at higher levels of QOL. MANOVA’s results showed that the mean scores of PCS of mothers having children with lower age were higher than the other ones (p < .01). Post hoc comparisons using the Tukey’s test indicated that the observed significant differences were related to differences between age-group of 12 and 18 years, with 0–≤2, 2–≤4 and 4–≤6 years. No statistically significant differences were found in terms of mean mental component summary (MCS) of mothers in terms of different age-groups (Table 3).

Table 3.

The MCS scores of SF-36 of mothers according to GMFCS E&R, age, and type of CP.

SF-36 scales					Mean ± SD	F	p Value
PCS	GMFCS E&R	I			44.59 ± 8.1	5.386	.0001**
		II			39.22 ± 7.96
		III			39.37 ± 7.74
		IV			37.52 ± 8.07
		V			38.36 ± 8.8
MCS		I			41.37 ± 9.98	1.623	.168*
		II			39.94 ± 1.01
		III			42.24 ± 1.02
		IV			43.04 ± 8.24
		V			40.08 ± 1.04
PCS	Age (years)	0–2			44 ± 7.56	3.974	.004**
		2–4			41.72 ± 8.19
		4–6			40.47 ± 8.88
		6–12			38.42 ± 8.21
		12–18			37.03 ± 7.71
MCS		0–2			36.64 ± 1.08	.741	.565*
		2–4			41.23 ± 1.13
		4–6			41.64 ± 9.44
		6–12			41.38 ± 1.02
		12–18			41.02 ± 7.94
PCS	Type of CP	Spastic	Hemiplegia		43.79 ± 8.11	4.513	.001**
			Diplegia		39.82 ± 8.19
			Quadriplegia		38.09 ± 8.52
		Dyskinetic			36.23 ± 6.43
		Ataxic			40.88 ± 7.74
		Hypotonic			40.56 ± 9.83
MCS		Spastic		Hemiplegia	40.34 ± 9.47	.467	.801*
				Diplegia	41.53 ± 1.04
				Quadriplegia	41.84 ± 9.58
		Dyskinetic			40.65 ± 1.04
		Ataxic			41.18 ± 1.21
		Hypotonic			39.28 ± 7.91

SF-36: 36-item Short Form Health Survey; CP: cerebral palsy; GMFCS E&R: Gross Motor Function Classification System Expanded and Revised; PCS: physical component summary; MCS: mental component summary.

*p < .1; **p < .01.

Comparing the QOL of mothers having children with different types of CP showed that the differences were statistically significant only in terms of PCS scores (p < .01). Post hoc statistical test showed that the observed differences were related to spastic hemiplegia, that is, those who have children with spastic quadriplegia and dyskinesia.

Discussion

Although there is an appreciable amount of literature on families of children with different types of disabilities, including CP, in the Western countries, little is known about the QOL status of parents in non-Western societies, specifically Iran. There is very little information about the impacts of caretaking of a child with CP on parents, specifically mothers in Iran and also there is dearth of information regarding the impact of caring on mother’s QOL.

Families of disabled children often experience difficulty with caretaking of their children (Sen and Yurtsever, 2007) and a possible strong impact on their physical and mental health. In the present study, mothers of children with CP reported lower QOL than general population. A qualitative study of QOL of parents of children with CP demonstrated that CP might have a profound impact on the QOL of parents (Davis et al., 2010). A case–control study in Iran showed that having a child with CP decreased QOL in the mothers of CP children in comparison with mothers of normally developing children (Khayatzade mahani, 2009).

It is of interest to our group that mothers of children with CP in the level I of the GMFCS E&R reported significant differences in PCS scores than levels of II, III, IV, and V of the GMFCS E&R. As previously mentioned, higher levels of the GMFCS E&R may increase the level of child support and possibly result in musculoskeletal injuries in caregivers. Raina et al. (2005) reported that physical health of the mothers was strongly influenced by caregiving demands of children with CP. Thus, on the whole, it could be asserted that if the children with CP have low levels of gross motor function, it may adversely influence the physical health of their mothers.

The present study did not reveal any significant difference between MCS scores and level of gross motor function. Our results were mostly consistent with some studies in terms of relationship between the mental health of mother and GMFCS levels of children with CP (Manuel et al., 2003; Ones et al., 2005). The present results suggest that the extent of caregiving required by a child is not necessarily associated with how a mother will report mental health, therefore it indicates that the mother’s mental health is impacted by other issues. Other potential maternal mental health factors should be investigated through further studies.

Another interesting finding of this study was a significant difference between PCS of mothers and different age levels of children with CP. This difference was only significant for age level of 12–18 years. Child development and weight gaining increase the hardship of handling and justification of needs. Other plausible explanation might be due to the change in CP subtypes with increasing age, which have been seen in a small group of children with CP (Shevell et al., 2008). During or after adolescence, some children with CP may lose functional ambulation based on the rapid onset of weight and height growth, for example, the crouch gait develops and gets worse in adolescents with diplegia. These progressive impairments can cause frustration in adolescents, and, therefore, parents typically complain that the individual loses the motivation to walk and depends on them much more than before (Miller, 2004). Also, many cases of parental overprotection have been reported by adolescents with CP (Murphy et al., 2000). It is reported that mothers spend more time with their adolescents with CP and take the primary caregiving responsibility in terms of ADLs (Rassafiani et al., 2012). This is not only due to loss of functional abilities in adolescence but also because of parental doubts about their children’s potential ability to take care of themselves. Hence, the increasing age of children with CP may influence the PCS of mothers.

In the present study, PCS scores of mothers were significantly different in different types of CP. This difference was more significant in those with spastic hemiplegia than in those with spastic quadriplegia and dyskinesia. The mothers of children with spastic quadriplegia have reported lower scores for the PCS. Independent ambulation occurs only in a minority of children with either spastic quadriplegia or dyskinesia (Shevell et al., 2009). Also, children with a bilateral syndrome were represented at all GMFCS levels, with most in levels III, IV, and V (Gorter et al., 2004). According to previous studies, children with spastic quadriplegia and dyskinesia have far more limited mobility and require more care than spastic hemiplegia. In accordance with these assumptions, certain types of CP may influence the PCS of their mothers. The current study did not show any relationship between MCS scores of mothers and the type of CP. Evidently, there is an inconsistency between our findings and other study findings in terms of the mental health of mothers and the type of CP (Butcher et al., 2008; Goodman and Graham, 1996; Romeo et al., 2010). The mothers of children with spastic hemiplegia reported lower scores in the psychological component (Romeo et al., 2010). Most hemiplegic children have considerable emotional or behavioral difficulties, and these psychological complications commonly go unrecognized or untreated (Goodman and Graham, 1996). Butcher et al. (2008) reported that stress in mother of a child with hemiplegia is associated with the child’s behavioral and motor problems indirectly. Thus, it could be asserted that MCS scores of mothers related to the type of CP need closer investigation.

Consequently, a holistic approach is essential to monitor the physical and mental health of mothers of children with CP. However, Iranian mothers of children with CP have limited access to supportive services specifically any functional social network and have difficulty accessing the social insurance that might allow them to stay healthy and comfortable. The national health plan should consider providing supportive systems for this population.

The most important limitation of our study was the convenience sampling method. This may affect the results between QOL of Iranian mothers of children with CP and the gross motor function of their children age and type of CP. Therefore, the results from this research study only reflect the specific group of parents who participated in the study and findings cannot be generalized to all Iranian parents who are taking care of a child with CP. With respect to cultural diversity in Iranian society, the recruited sample in any further study should be diverse enough to be considered as the representative of all the Iranian parents who have a child with CP.

Conclusion

Caring for a child with a disability calls for excellent health and the capability to meet the needs of the child. Therefore, therapists need to focus on the QOL of these people, and this focus can be targeted at different levels and formats. This can be provided for them through special packages of basic information on the features and needs of children with CP at different age levels. It is our hope that the results of this survey enhance the existing literature addressing QOL in mothers of children with CP in Iran. It can also be concluded that a continuum of support and services needs to develop from the early stages of diagnosis to the later phases and different developmental stage levels of children with CP. More importantly, conducting a qualitative research in this context could assist with exploring the health and social needs of mothers of children with CP and the mechanism for improving these.

Footnotes

Acknowledgments

The authors are grateful to all mothers of children with CP for devoting their time to participate in this study. Further the authors particularly want to thank Dr Greg Kelly for his wonderful recommendation and language revision of this article.

Funding

This research was supported by TUMS grant 10189-32-01-89.

References

Ahmadizade

Rassafiani

Hosseini

(2014) Chronic musculoskeletal pain in mothers of children with cerebral palsy [Persian]. Quarterly Journal of Rehabilitation 14(S2): 78–86.

Bourke-Taylor

Howie

Law

(2012) Self-reported mental health of mothers with a school-aged child with a disability in Victoria: a mixed method study. Journal of Paediatrics and Child Health 48: 153–159.

Brehaut

Kohen

Raina

(2004) The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics 114: e182–e191.

Butcher

Wind

Bouma

(2008) Parenting stress in mothers and fathers of a child with a hemiparesis: sources of stress, intervening factors and long-term expressions of stress. Child: Care, Health and Development 34: 530–541.

Dadkhah

Ghaffar Tabrizi

Hemmati

(2009) Quality of life of disabled children's mother: a comparative study. Iranian Rehabilitation Journal 7: 36–37.

Dale

Andrew

Knott

(2006) Mothers’ attributions following their child’s diagnosis of autistic spectrum disorder. Autism 10(5): 463–479.

Davis

Shelly

Waters

(2010) The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child Care Health and Development 36: 63–73.

Dehghan

Abdolvahab

Bagheri

(2011) Inter rater reliability of Persian version gross motor function classification system expanded & revised in patients with cerebral palsy [Persian]. Bimonthly Official Publication Medical Daneshvar 18(91): 2–8.

Goodman

Graham

(1996) Psychiatric problems in children with hemiplegia: cross sectional epidemiological survey. British Medical Journal 312: 1065–1069.

10.

Gorter

Rosenbaum

Hanna

(2004) Limb distribution, motor impairment, and functional classification of cerebral palsy. Developmental Medicine & Child Neurology 46: 461–467.

11.

Joghataei

Mohammad

Rahgozar

(2002) Prevalence of some paralysis and limb amputation disabilities in Iran national epidemiological survey [Persian]. Journal of Rehabilitation 3: 7–16.

12.

Khayatzade Mahani

(2009) A comparative Study about quality of life in mothers of children with cerebral palsy, mental retardation and mothers of normal children [Persian]. Bimonthly Official Publication Medical Daneshvar 17: 49–58.

13.

Manuel

Naughton

Balkrishnan

(2003) Stress and adaptation in mothers of children with cerebral palsy. Journal of Pediatric Psychology 28: 197–201.

14.

Miller

(2004) Cerebral Palsy. New York: Springer.

15.

Montazeri

Goshtasebi

Vahdaninia

(2005) The Short Form Health Survey (SF-36): translation and validation study of the Iranian version. Quality of Life Research 14: 875–882.

16.

Morris

(2007) Definition and classification of cerebral palsy: a historical perspective. Developmental Medicine & Child Neurology 49: 3–7.

17.

Murphy

Molnar

Lankasky

(2000) Employment and social issues in adults with cerebral palsy. Archives of Physical Medicine and Rehabilitation 81: 807–811.

18.

Ones

Yilmaz

Cetinkaya

(2005) Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabilitation and Neural Repair 19: 232–237.

19.

Raina

O’Donell

Rosenbaum

(2005) The health and well-being of caregivers of children with cerebral palsy. Pediatrics 115: e626–e636.

20.

Rassafiani

Ahmadi Kahjugh

Hosseini

(2012) Time use in mothers of children with cerebral palsy: a comparison study. Hong Kong Journal of Occupational Therapy 22: 70–74.

21.

Rentinck

ICM

Ketelaar

Jongmans

(2007) Parents of children with cerebral palsy: a review of factors related to the process of adaptation. Child: Care, Health and Development 33: 161–169.

22.

Romeo

Cioni

Distefano

(2010) Quality of life in parents of children with cerebral palsy: is it influenced by the child's behaviour? Neuropediatrics 41: 121–126.

23.

Sen

Yurtsever

(2007) Difficulties experienced by families with disabled children. Journal for Specialists in Pediatric Nursing 12: 238–252.

24.

Shevell

Dagenais

Hall

(2009) The relationship of cerebral palsy subtype and functional motor impairment: a population-based study. Developmental Medicine and Child Neurology 51: 872–877.

25.

Shevell

Majnemer

Poulin

(2008) Stability of motor impairment in children with cerebral palsy. Developmental Medicine & Child Neurology 50: 211–215.

26.

World Health Organization (1997) Measuring Quality of Life: The World Health Organization Quality of Life Instrument (WHOQOL). Geneva: Division of Mental Health and Prevention of Substance Abuse.