Factors Associated with Stress and Caregiver Burden among Caregivers of Children with Cerebral Palsy

FACTORS ASSOCIATED WITH STRESS AND CAREGIVER BURDEN AMONG CAREGIVERS OF CHILDREN WITH CEREBRAL PALSY SEEN IN NIGERIA

Abstract

Background: Cerebral palsy(CP) is a major cause of physical disability in childhood. Caregivers are often subjected to both stress and caregiver burden due to prolonged care.

Objectives: To assess the level of stress and caregiver burden among primary caregivers of children with CP and identify predictive factors.

Methods: A hospital-based descriptive cross sectional study conducted in three tertiary hospitals within Osun state, Nigeria. Two hundred and nine caregivers were interviewed with both the Parental Stress Scale and Caregiver Difficulty Scale to assess for stress and caregiver burden of caregivers respectively. Data was collected and analyzed using appropriate statistical test with Alpha set at p<0.05.

Results: Two-hundred and nine children with CP aged 12 months to 12 years were seen during the six month period. Mothers constituted 87.1% of the total caregivers. The mean(SD) stress and caregiver burden seen in caregivers were 44.8±10.1 and 45.2±13.4 respectively which was above the minimum score of 42 signifying high psychosocial stress and burden. Multivariate linear regression was used to assess associations between clinical and socio-demographic and each of stress and caregiver burden. Severity of CP and level of education were the most important predictors of stress while severity of CP, level of education and male child were the most important predictors of caregiver burden.

Conclusion: Caregiver burden and stress are known to result in negative outcomes. Identifying factors that can predict caregiver burden and stress could help develop an early intervention strategy to minimize these negative effects while promoting caregivers psychosocial wellbeing.

Key words: Stress; caregiver burden; cerebral palsy

Introduction

Cerebral palsy (CP) is one of the leading causes of chronic neurological disorders in children.¹ CP is a disorder of movement and/or posture resulting in activity limitation and participation restrictions as well as chronic motor disability in childhood.^2,3 The severity of disability in children with CP is not only restricted to motor dysfunction but also due to associated conditions like epilepsy, bladder incontinence, intellectual disability, and behavioral disorders.² The prevalence of CP globally varies between 1.5 to 4 per 1,000 live births.^4,5 The prevalence rates in the developed world including the United States, the United Kingdom, Germany, Sweden, and Western Australia are reported to be between 2 to 2.5 per 1000 live births.³ In Africa, a prevalence of 3.7 per 1,000 live births⁶ and 10 per 1,000 live births⁷ have been reported in Egypt and South Africa respectively. Studies conducted in Nigeria have shown varied prevalence rates ranging from 16.2% to as high as 50.3% of cases seen in the neurology clinics.^8,910

Children with CP are mostly disabled due to impairments to both their body structure and function.¹¹ These in turn could result in both stigmatization and marginalization of not only the child but also in some cultures the parents or caregivers as well.¹² Caregivers of children with CP are often left on their own to cater for the disabled child.¹³ This means that the caregivers have to work to earn a means of livelihood while at the same time caring for the child with CP. Also some children with CP require more attention due to additional health challenges like epilepsy, behavioral disorder, non-oral feeding and sleeping disorders.² All these family, social, economic and health barriers could create a reduced level of interaction between the child and the already over stressed and burdened caregiver.¹² Nevertheless, children with CP still require care and love from their parents or caregivers.

Children with CP at different stages of development require both professional (patient focused approach) and informal care.¹⁴ The caregivers approach (informal form) is crucial in maintaining the rehabilitation gains with the long term well-being of the child.¹⁵ The informal caregivers are made up of their family members, guardians or friends who are involved in the child’s day to day requirements and are not financially rewarded for their services.^14,16 These daily requirements are long term and can be demanding.¹⁷ Once the care demand threshold for a child with CP is exceeded, it leads to negative consequences with overt manifestation as stress, caregiver burden, reduced quality of life and in worst cases, death.^16,18 In Nigeria, studies as regards factors related with burden and stress on caregivers of children with CP is scanty and hence the need for this study. Therefore, the objective of this study was to assess the levels, correlates and predictive factors of stress and caregiver burden among primary caregivers of children with CP attending the physiotherapy outpatient clinics in Osun state, Nigeria.

Materials and Methods

Ethical consideration

Ethical approval for the study was obtained from the Ethics and Research Committee of the Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC), Ile-Ife, Nigeria. Departmental approval was also obtained from the various Heads of Physiotherapy and Paediatrics department. Caregivers received verbal information and explanation about the purpose and procedure of the study. An informed consent form was then used to elucidate willingness of the caregivers to take part in the study. Caregivers were also given the option to pull out of the study at any time if they feel the need to do so. Each consenting caregiver was assigned a study number in order to ensure confidentiality. Information collected from respondents were encrypted in an electronic file and password protected. Only the principal researcher had access to all collected raw data.

Study design

This was a hospital-based descriptive cross-sectional study.

Study location

This study was carried out in the physiotherapy outpatient clinics of three tertiary hospitals all located in Osun state, south west of Nigeria over a six months period. They are the Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC), Ife Hospital Unit, Ile-Ife and Wesley Guild Hospital (WGH) Unit, Ilesha and Ladoke Akintola University Teaching Hospital (LTH), Osogbo. These tertiary hospitals are located in three different towns in Osun State, the South Western part of Nigeria.

Sample size determination

The minimum sample size for this study was estimated by using the formula according to Daniel, 1999.¹⁹ Where: ‘z’ is the critical value and is equal to 1.96 for a 95% confidence interval, ‘p’ is the estimated prevalence of cerebral palsy which was taken as 16.2%⁸ and ‘d’ is the absolute sampling error that can be tolerated for this study, it was fixed at 5%.²⁰ Therefore, a total of 209 children were recruited for the study.

                                                      n  =   Z²P (1-P)

d²

Respondents

Respondents in this cross-sectional study design were 209 primary caregivers of children diagnosed with cerebral palsy. The children were all referred from the pediatric or neurology clinics to the physiotherapy departments of three tertiary hospitals all located in Osun State, south west Nigeria. The respondents were recruited from the department of physiotherapy using a purposive sampling technique. Eligibility for the study included primary caregivers of children with cerebral palsy attending the out-patient physiotherapy clinic following a clinical diagnosis of cerebral palsy by either a pediatrician or neurologist and within 1 to 12 years age bracket. The primary caregivers are either parents, guardian or family member (informal caregivers and unpaid) but must be responsible for the daily care of the child. Excluded from the study were children with down’s syndrome, spinal bifida or any current neuromuscular disorders. Caregivers with added caregiving responsibilities such as caring for a senior citizens or a disabled adult and caregivers diagnosed with a psychiatric disorder were also excluded from the study.

Instruments

Socio-demographic Questionnaire

A socio-demographic questionnaire was used to collect some personal information from each caregiver and child. Information collected included age of the caregivers and child, sex, caregivers relationship to child, marital status, ethnicity, child’s birth order, caregivers level of education with their spouse, caregivers occupation also with their spouse and monthly income.

Parental Stress Scale

The Parental Stress Scale (PSS) which is also a self-administered, valid and reliable instrument was used to assess the levels of caregivers stress as a result of caring for a child with CP.^21,22 It is an 18 – question tool that measures the levels of stress experienced by the primary caregiver. This scale represents both positive and negative components of parenthood. The positive component includes “emotional benefits,” “self-enrichment,” and “personal development” while the negative components represents “demands on resources,” “opportunity cost,” and “restrictions.” Each item was scored on a Likert-type scale from 1 to 5 with a minimum to maximum possible scores of 18 to 90 respectively.²¹ The higher the score, the higher the measured level of Parental stress. The PSS questionnaire was also subjected to a test-retest reliability by administering the questionnaire to a subsample of 15 respondents different from those selected for the study. After a period of two weeks the PSS questionnaire was re-administered to the same subgroup of respondents and a pair t-test between both scores showed no significant difference between test and retest scores PSS (t = 0.394, p > 0.05).

Caregiver Difficulties Scale

The Caregiver Difficulties Scale (CDS) is a self-administered, valid and reliable instrument which was used to assess the level of burden experienced by the caregiver as a result of caring for a child with CP.²³ It is a 25-question tool that measures burden related to care provision. There is at least one item for each of the following major domains: “concerns for the child,” “impact on self,” “support for caregiving” and “social and economic strain.” Each item was scored on a Likert-type scale from 0 to 4 with the highest possible score of 1                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     00. A higher score is an indication of a higher level of burden.²⁴ The CDS questionnaire was subjected to a test-retest reliability by administering the questionnaire to a subsample of 15 respondents different from those selected for the study. After a period of two weeks the CDS questionnaire was re-administered to the same subgroup of respondents and a pair t-test between both scores showed no significant difference between test and retest scores CDS (t = 0.163, p > 0.05).

Examinational checklist

The principal physiotherapist gathered selected clinical information through examination and observation from children with cerebral palsy. These information included: two sub-classification of CP – classification based on topographical distribution specifically diplegia, hemiplegia and quadriplegia, and nature of movement disorder specifically spastic, dyskinetic, ataxic, mixed and hypotonic forms. Others included aetiology of CP (derived from the referring pediatric neurologist), severity of CP using the Gross Motor Function Classification System – Expanded and Explained (GMFCS-ER), extent of motor function using the Gross Motor Function Measure-88 (GMFM-88) and associated conditions with CP such as visual impairments, epilepsy, and learning impairment.

Gross Motor Function Classification System – Expanded and Revised

The Gross Motor Function Classification System – Expanded and Revised (GMFCS-ER) is a valid and reliable tool used to assess the level of severity of cerebral palsy in children²⁵ and has been used in some studies done in Nigeria.^1,26 It is a tool based on self-initiated movement having specific focus on three motor functions which includes: sitting, transfer and mobility. It is made up of a five level descriptive classification system with definite distinctions between levels based on functional restrictions, need for assistive aids and movement quality.²⁵ Level I refers to children with cerebral palsy who ambulates with no restriction. In Level II, some form of restrictions are seen during ambulation especially during long distances, uneven surfaces or ascending and descending stairs. Level III includes children with cerebral palsy who are still ambulant but requires hand held mobility aids for assistance. Level IV refers to self-mobility done with the use of a powered mobility device. Level V simply refers to total reliance on assistance with mobility only possible with a manual wheelchair. The GMFCS-ER comprises of five age categories which are as follows: less than 2 years, 2 to 4 years, 4 to 6 years, 6 to 12 years and 12 to 18 years.²⁵

Gross Motor Function Measure – 88

The Gross Motor Function Measure (GMFM – 88) which has been used in some studies done in Nigeria^27,28 is a valid and reliable clinical performance and observational tool which was created to assess the extent of motor function seen in cerebral palsy children.^29,30 The GMFM – 88 is made up of 88 items sub-divided into five dimensions which are as follows: Item A – Lying and Rolling; Item B – Sitting; Item C – Crawling and Kneeling; Item D – Standing and Item E – Walking, Running and Jumping. Each item is scored on a four point scale with a minimum score of  0 to a maximum score of 3. Where 0 indicates child ‘does not initiate’; 1 represents ‘initiates’; 2 means child ‘partially completes’ while 3 indicates that child ‘completes’. Most clinicians and researchers use this tool because it is able to assess changes in the motor performance in children with cerebral palsy after therapeutic interventions.³¹

Procedure

Caregivers were recruited over six consecutive months by the research team. Each caregiver was approached after their children had received treatment. A socio-demographic questionnaire which was designed mainly for this study was given to each caregiver to fill after an informed consent was obtained following verbal information and explanation about the purpose and procedure of the study. The PSS and CDS questionnaires which are self-administered questionnaire were also distributed to each caregiver. The principal researcher then evaluated and documented the extent of motor function possible and the severity of cerebral palsy in each child using both the GMFM and the GMFCS respectively.

Clinical classification were based on the type of motor disorder and topographical distribution which was assessed by the principal researcher via physical examination and observation. The type of motor disorder were classified as spastic, dyskinetic (either dystonic or choreo-athetoid), ataxic, mixed or hypotonic. Topographic distribution was used to further classify spastic motor disorder type into diplegia, hemiplegia or quadriplegia.

The socioeconomic status of each caregiver was calculated using the Ogunlesi et al.,³² classification of social class. The method adopted here is a modification of an earlier classification done by Oyedeji.³³ The previous classification did not take into account the parents income to assign socioeconomic scores hence the need for this modification. In summary, socioeconomic scores allotted to both education qualification and occupation was based on the equivalents of each parents mean incomes using their percentile incomes. Once this was gotten using a table designed by Ogunlesi et al.,³² calculation to determine each family’s socioeconomic status was then performed via the formula:

Social class = (occupation + education of father) + (occupation + education of mother) ⁄ 4

The socioeconomic class was scored as 1, 2, 3, 4, and 5 with the social class represented as I, II, III IV and V respectively. The value gotten was then rounded up to the nearest whole number to give the social class. The socioeconomic class was further sub-classified as below:

i. A total score of 1 representing social classes 1 was sub-classified as upper class.

ii. A total score of 2 representing social classes 2 was sub-classified as upper middle class.

iii. A total score of 3 representing social class 3 was sub-classified as middle class.

iv. A total score of 4 representing social classes 4 was sub-classified as lower middle class.

v. A total score of 5 representing social classes 5 was sub-classified as lower class.³⁴

 

 

 

Data Analysis

Data was analyzed using Statistical Programme for Social Sciences (SPSS) version 22.0 (SPSS Inc., Chicago, Illinois, United States). Cut-off statistical level of significance was set at P < 0.05. Categorical variables such as sex, birth order, relationship to child, educational background, socioeconomic status and severity of cerebral palsy were summarized using proportions and percentages. Continuous variables such as duration of weekly care, duration since cerebral palsy was diagnosed, level of caregivers burden and stress were first tested for normality using Shapiro-Wilk statistics. These were then summarized using mean and standard deviation for normally distributed variables with median and interquartile ranges for non-normally distributed variables.

Relationship between the continuous (independent) variables like age, and each dependent variable (PSS and CDS) were analyzed using Spearman’s Rho correlation. Relation between categorical variables (like sex) and each dependent variable were analyzed using Student t-test while the relationship between categorical variables of more than two levels and dependent variables were analyzed using Analysis of Variance (one-way ANOVA).

In order to identify the main predictors (independent variables) that might influence the dependent variables (parental stress and caregiver burden), a multiple linear regression analysis was done. Predictor variables were first grouped into socio-demographic and clinical variables and subsequently fed into the multiple regression analysis stepwise model. Criteria for inclusion and exclusion were set at: probability in ≤0.05 and probability out > 0.1. The significant predictive variables were identified and further subjected for assumption testing using linearity, normality, homoscedasticity, collinearity and autocorrelation in the data. Verification were done using Cook’s distance, standardized residuals, tolerance, variance inflation factor and Durbin-Watson test.

Results

Socio-demographic profiles with general information about the study participants

Table 1 highlights the following general information and socio-demographic profiles of both caregivers and children.

Age and sex distribution of respondents

The mean age of both caregivers and children were 34.6±9.2 years and 4.2±3.0 years respectively. There were 113 (54.1%) male children, with a male to female ratio of 1.2:1 while there were 192 (91.9%) female caregivers with a male to female ratio of 1:11.3. Fifty-nine (28.2%) children were in the age range of  4 – 6 years while 98(46.9%) caregivers were in the age range 30 – 39 years.

Relationship to child

Mothers 182 (87.1%) were the most involved in caring for their children with CP as shown in table 1.

Caregivers socioeconomic class

Majority (41.6%) of the caregivers were from the lower-middle class while only five (2.4%) from the upper class. One hundred and nine (52.2%) of the caregivers had post-secondary school education while only 18 (8.6%) of the caregivers had primary education.  

Table 2: Clinical characteristics of the study respondents

Table 2 highlights the following clinical characteristics of both the caregivers and children with cerebral palsy.

Age at diagnosis

The age when the study respondents were diagnosed to have cerebral palsy ranged from 2 to 30 months with a median interquartile range (IQR) of 6(5-12) months. 29.7% of the children were diagnosed with cerebral palsy at the age of 6 months while 18.2% of the children were diagnosed with cerebral palsy at the age of 12 months.

Duration of weekly care

The duration of caregivers’ weekly care ranged from 1 to 84 hours with a median IQR) of 14(7 – 49) hours.

Level of stress and caregiver burden

The PSS scores were normally distributed and ranged from 18 to 68 with a mean score of 44.8±10.1 among the caregivers surveyed. The Cronbach’s alpha of PSS scores at the end of the entire study was 0.837 which showed a good internal consistency. The CDS scores were also normally distributed which ranged from 18 to 80 with a mean score of 45.2±13.4 among the caregivers surveyed. The Cronbach’s alpha of CDS scores after the entire study was 0.778 which also showed good internal consistency. A higher score on both the PSS and CDS indicates significant psychosocial stress and caregiver burden but usually a score above 42 is predictive of parental or caregiver psychological problems.

Severity of cerebral palsy

One hundred and thirty-two (63.2%) of the children had severe deficits (level IV and V) while 112 (53.6%) of the children had a lower level of motor function.

Motor type

One hundred and fifty-five (74.2%) of the children were spastic while only 4 (1.9%) were hypotonic. 107(69%) out of the 155 spastic children were quadriplegic, 40 (25.8%) were hemiplegic while only 8 (5.2%) were diplegic.

Associated conditions

Seventy-six (36.4%) of the children with cerebral palsy had one associated condition while only 9 (4.3%) had four or more associated conditions.

 

Association between Independent (socio-demographic and clinical) variables and Parental Stress Scores.

The association between Parental Stress and independent variables: level of motor function (p=0.001), child’s sex (p=0.001), caregivers level of education (p=0.001), income (p=0.001), socioeconomic status (p=0.002), motor disorder types (p=0.001), severity of CP (p=0.001) and associated conditions (p=0.001) were all found to be significant. However, no association was found for caregivers age, child’s age, caregivers sex, birth order and aetiology of CP. (Table 3)

Association between Independent (socio-demographic and clinical) variables and Caregivers Burden Scores.

Also, concerning the association between caregivers burden and their independent variables: level of motor function (p=0.001), Caregivers sex (p=0.046), child’s sex (p=0.003), caregivers level of education (p=0.008), motor disorder types (p=0.015), severity of CP (p=0.001), aetiology (p=0.024) and associated conditions (p=0.024) were all found to be significant. However, other socio-demographic and clinical variables like income, birth order, socioeconomic status were not significantly associated. (Table 3)

Predictors of Parental Stress among caregivers of children with cerebral palsy using multiple regression analysis

Table 4 shows the results of a multiple linear regression that was conducted to predict caregivers stress (PSS) based upon selected seven socio-demographic and three clinical variables. Preliminary analysis were conducted to ensure there was no violation of the assumption of linearity, multi-collinearity, normality and homoscedasticity. A significant regression was found F(2,206) = 39.283 , p = 0.001, with an R² of 0.276. Both severity of CP (level V) and level of education were significant predictors of parental stress with the standardized coefficients score recording a higher value for severity of CP (beta = 0.391, p = 0.001) than level of education (beta = -0.280, p = 0.001). Severity of CP showed a significant positive linear association with parental stress while level of education showed a negative linear association with parental stress.

Predictors of Caregivers Burden among caregivers of children with cerebral palsy using multiple regression analysis

Finally, Table 5 shows the results of a multiple linear regression that was conducted to predict caregivers burden (CDS) based upon the same number of selected socio-demographic and clinical variables. Preliminary analysis were also conducted to ensure there was no violation of the assumption of linearity, multi-collinearity, normality and homoscedasticity. A significant regression was found F(3,205) = 13.698, p = 0.001, with an R² of 0.167. Severity of CP (level V), level of education and male child were all significant predictors of caregivers burden with a standardized coefficients score and significance of β=0.291(p=0.001), β=0.168(p=0.10) and β=0.184(p=0.004) respectively. All three predictive variables showed a significant positive linear association with caregivers burden.

Discussion

Cerebral palsy (CP) is a disorder of posture and movement limitations.² Children with CP depend on their caregivers for care which may be very demanding and usually on a long-term basis.¹⁷ These demands on caregivers may result in both stress and caregiver burden which in turn could be counter-productive for both the child and the caregiver. This study therefore was embarked upon to assess the stress and caregiver burden of carers of children with CP and to determine which independent variables are predictive of both stress and caregiver burden.

From this study, caregivers of children with CP showed a high level of stress with a mean(SD) of 44.8±10.1. This was in accordance with a study done by Lima et al, 2016.³⁵ High PSS scores have been linked to poor quality relationship between the caregivers and child, poor behavioral levels seen in children and reduced child sensitivity by either the parents or caregivers.²¹ Caregivers of children with CP are sometimes neglected by the community and in some cases by their own family.^12,13 This forces the caregivers to work in order to cater for the child and themselves. Unfortunately, this in turn could result in a poorer caregiver-child relationship and inevitably higher stress. For those caregivers who cannot work due to the fact that they have no one to keep their ward or child with, higher parental or caregivers stress could result in lesser sensitivity to the child and may lead to abuse or total neglect of the child.¹²

The mean(SD) scores of CDS from this study was 45.2±13.4. This is in agreement with a study done by Wijesinghe et al, 2015.²⁴ The mean CDS score of 42 and above is suggestive that the caregiver is undergoing some levels of psychological problems including stress, depression and anxiety.²⁴ Caregiver burden begins once the demand of care by a child with CP on their caregivers becomes prolonged and intense. This will result in negative consequences which is not only on caregivers psychological health but on their physical health as well.¹⁷

This study showed that a negative but moderate correlation exists between parental (caregivers) stress and the child’s level of motor function r(p) = -0.397(0.001). More than half of the children seen during this study period had a motor function of less that 41%. This simply means that most children were unable to perform the required activity of daily living which includes standing, running, playing, interaction with friend or neighbors and schooling. A negative and moderate correlation was also seen between  caregiver burden and level of motor function r(p) = -0.315(0.001). Child’s sex was also associated positively with both parental stress and caregivers burden. Male child accounted for 54.1% of children with CP with a male to female ratio of 1.2:1. Recessive X-linked chromosomes and genetic mutation has been attributed to male sex predominance in CP.

Caregivers level of education, income and socioeconomic status were all associated with parental stress. A lower level of educational achievement will mostly attract lesser paying jobs which will inevitably result in lower socioeconomic status. A caregiver with lower socioeconomic status will probably have financial difficulties due to the extra demands of caring for a child with CP which entails medical treatment and bills. One hundred and thirty-six (65.1%) caregivers in this study earn less than N50,000 (Nigerian Naira) per month which is equivalent to $137 (United States Dollars) about 2.5 days wages.³⁸ Presently, financial burden has increased due to the country’s raising inflation rates which has caused a rise in market items especially food items. It has even become more difficult as some governors and private chief executive officers in the country are yet to pay workers their salaries which sometimes runs into months.

Parental stress and caregiver burden were both associated with type of motor disorder, severity of CP and associated conditions. Spastic CP sub-type accounted for one hundred and fifty-five (74.2%) of children seen in this study. This is similar to a study done by Frank-Briggs and Alokor, 2011¹¹ which reported an 80.1% cases of spastic CP. Spastic CP does not only limit the child’s body movement and posture but also deprives the child from participating in everyday activities. This means they are usually not involved in life’s situation and for this reason depend solely on their caregivers life’s learning process. One hundred and thirty-two (63.1%) children had severe disability (GMFCS IV and V) as a result of CP. This simple implies that the child will require greater assistance from their caregivers which may even require mobility devices like a wheel-chair to even feeding. Lastly, only fifty (23.9%) children with CP did not have any associated condition(s). Associated condition like epilepsy, non-oral feeding, deafness and sleeping disorders have be known to attract additional care and ultimately increase financial expenses. All these related factors can easily result in an increase in both parental stress and caregiver burden in caregivers of children with CP.

The result of this study revealed that the most important predictors of stress in caregivers were severity of CP (level V) and level of education. These predictors explained a considerable section of the variability of the parental stress. This accounted for 27.6% of the variability of caregiver / parental stress in the model assessed. Similarly, the most important predictors of caregiver burden in caregivers were male sex, severity of CP (level V) and level of  education. Also, these predictors were able to explain a considerable section of the variability of the caregiver burden in the model assessed. This accounted for only 16.7% of the variability of caregivers burden in the model assessed. CP is a chronic neurological condition that is non-progressive following a permanent brain damage in infancy or childhood.² The resultant motor impairments, majorly movement limitation and postural abnormality makes children with CP require care and attention. Unfortunately, the demand of care may be prolonged especially if the severity of CP is great and co-exist with additional condition. This study was able to show that severity of CP specifically level V of the GMFCS was a significant predictor of not only caregiver stress but also caregiver burden. This is in agreement with studies done by Mobarak et al, 2000³⁶ and Marrón et al, 2013.¹⁷

Study limitations

Due to its cross sectional hospital based nature, a complete representation of all children with CP in Osun state may not be the case. However, we were able to demonstrate the levels, correlates and predictive factors of stress and caregiver burden among primary caregivers of children with CP attending the physiotherapy outpatient clinics in Osun state, Nigeria.

Conclusion

Caregiver burden and stress are known to result in negative outcomes. This study found that caregivers of children with CP had both stress and caregiver burden with severity of CP, level of education, and male sex as predictive factors. Identifying factors that can predict stress and caregiver burden could help develop an early intervention strategy to minimize these negative effects while promoting caregivers psychosocial wellbeing.

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Table 1: Socio-demographic characteristics of the study respondents

_____________________________________________________________________

Variables        Frequency (%)

_____________________________________________________________________

Sex of children

Male        113(54.1)

Female            96(45.9)

Sex of caregivers

Male            17(8.1)

Female        192(91.9)

Age range of child in years

1 – 2          53(25.4)

2 – 4          49(23.4)

4 – 6          59(28.2)

6 – 12          48(23.0)

Age range of caregivers in years

20 – 29         63(30.1)

30 – 39         98(46.9)

40 – 49         36(17.2)

Above 49            12(5.7)

Relationship to child

Father            15(7.2)

Mother        182(87.1)

Grandfather             2(1.0)

Grandmother           10(4.8)

Birth order

1^ST born       133(63.6)

2^nd born         43(20.6)

3^rd born and greater        33(15.7)

Caregivers socioeconomic class

Upper              5(2.4)

Upper-middle         43(20.6)

Middle          64(30.6)

Lower-middle         87(41.6)

Lower             10(4.8)

Caregivers level of education

Primary           18(8.6)

Secondary         82(39.2)

Post-secondary      109(52.2)

Income per month in Nigerian naira

Less than N18,000        60(28.7)

N18,000 – N50,000        76(36.4)

N50,000 – N100,000        33(15.8)

N100,000 – N150,000        26(12.4)

Above N150,000        14(6.7)

______________________________________________________________________________

 

Table 2: Clinical characteristics of the study respondents

______________________________________________________________________________

Variables       Mean (SD) / Frequency (%)

______________________________________________________________________________

Level of caregiver stress      44.8±10.1

Level of caregiver burden      45.2±13.4

Age at diagnosis (Months)*          6(5-12)

Duration of weekly care (hours)*       14(7-49)

 

Severity of CP (GMFCS)

Level I          24(11.5)

Level II         41(19.6)

Level III           12(5.7)

Level IV         35(16.7)

Level V         97(46.4)

GMFM

  0 – 20.9         54(25.8)

21 – 40.9         58(27.8)

41 – 60.9         38(18.2)

61 – 80.9         21(10.0)

81 – 100         38(18.2)

Motor type

Spastic        155(74.2)

Dyskinetic           11(5.3)

Ataxic            19(9.1)

Mixed            20(9.6)

Hypotonic             4(1.9)

Associated conditions

None          50(23.9)

One          76(36.4)

Two          57(27.3)

Three            17(8.1)

Four or more             9(4.3)

Aetiology

Birth asphyxia       137(65.6)

CNS Infection #        34(16.3)

Kernicterus          14(6.7)

Neonatal seizure           3(1.4)

Premature birth         12(5.7)

Trauma            3(1.4)

Unknown cause           6(2.9)

______________________________________________________________________________

* – Median and interquartile range was used instead; : # CNS infections  – Central Nervous System (meningitis, cerebral malaria, and encephalitis); GMFCS: Gross Motor Function Classification System

Table 3. Association between each of Parental Stress (PSS Score) and Caregivers Burden (CDS Scores) and Independent (socio-demographic and clinical) variables.

_____________________________________________________________________________ Variables                                                  PSSCDS

_____________________________________________________________________________

r(p)    r(p)

_____________________________________________________

Caregivers age         0.042(0.543)               0.118(0.088)

Child’s age      0.051(0.460)        0.068(0.327)

Level of motor function  -0.397(0.001)*      -0.315(0.001)*

______________________________________________________________________________

t(p)    t(p)

______________________________________________________

Caregivers sex     -1.146(0.253)        -2.009(0.046)*

Child’s sex      3.422(0.001) *        3.022(0.003)*

______________________________________________________________________________

F(p)    F(p)

______________________________________________________

Caregivers education     21.253(0.001)*       4.953(0.008)*

Income         5.426(0.001)*       2.077(0.071)

Birth order        1.194(0.305)       0.629(0.534)

Socioeconomic status       4.312(0.002)*       1.969(0.101)

Type of motor disorders      7.858(0.001)*       3.148(0.015)*

Severity of CP      15.529(0.001)*       6.865(0.001)*

Aetiology        1.455(0.196)       2.493(0.024)*

Associated conditions       7.971(0.001)*       3.207(0.024)*

______________________________________________________________________________

Key: * – Indicates statistical significant at p < 0.05; r – correlation coefficient; t – independent student t-test; F – Analysis of Variance (ANOVA); PSS – Parental Stress Scale; CDS – Caregiver Difficulties Scale

Table 4: Independent variables predicting stress in caregivers of children with cerebral palsy

____________________________________________________________________________

Variables Unstandardized    Standardized         t  sig. Confidence interval

                           Coefficients          Coefficients            95.0% for B

                       ____________________________                                         _________________

     B         Std. Error Beta                  Inferior   Superior

      limit         limit

_____________________________________________________________________________

 

Constant    44.031 1.111      39.629 0.001     41.840        46.221

Education*    -5.659 1.223           -0.280    -4.628 0.001     -8.069         -3.248

Severity of CP     7.911 1.225  0.391     6.460 0.001      5.497         10.325

_____________________________________________________________________________Key: Std. Error: Standard Error; Sig: Significance; * – Level of education  

Table 5: Independent variables predicting burden in caregivers of children with cerebral palsy

____________________________________________________________________________

Variables Unstandardized    Standardized         t  sig. Confidence interval

                           Coefficients          Coefficients            95.0% for B

                       ____________________________                                         _________________

     B         Std. Error Beta                  Inferior   Superior

      limit         limit

_____________________________________________________________________________

 

Constant    38.230 1.473      25.950 0.001     35.326        41.135

Male child     4.949 1.718             0.184     2.881 0.004       1.562          8.336

Education*     8.028 3.072  0.168     2.613 0.010     1.971        14.085

Severity of CP     7.826 1.729  0.291     4.527 0.001       4.418        11.234

_____________________________________________________________________________Key: Std. Error: Standard Error; Sig: Significance; * – Level of education