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Table of Contents
ORIGINAL ARTICLE
Year : 2019  |  Volume : 51  |  Issue : 1  |  Page : 21-25

Severity of cerebral palsy and its impact on level of stress in the caregivers: A correlational study


Department of Occupational Therapy and Physiotherapy, Chacha Nehru Bal Chikitsyalaya, Delhi, India

Date of Submission17-Nov-2018
Date of Acceptance09-Mar-2019
Date of Web Publication19-Apr-2019

Correspondence Address:
Dr. Kiran Kriti
A 501, Saraswati Apartments, Madhu Vihar, I.P Extension 97, Patparganj, Delhi - 110 092
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijoth.ijoth_17_18

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  Abstract 


Background: Cerebral palsy (CP) is the leading cause of chronic disability in children making them physically and mentally challenged and socially aloof. CP children also experience a range of comorbidities such as seizures disorder and visual and hearing impairments. Parenting is inherently stressful at times, and studies have shown that being a caregiver of a disabled child is more stressful. Objectives: The objectives of the study were (1) to evaluate the correlation between the level of severity of CP children and its impact on stress on their caregivers, (2) to find the effect of co-morbid factors on the level of stress in caregivers, and (3) to evaluate the relationship between the socioeconomic status (SES) of caregivers and their stress. Study Design: This was correlation study. Methods: One hundred caregivers with the age group between 21 and 62 years participated in the study, of them 13 were male and 83 were female. CP children aged between 1 and 12 years were included in the study. The Gross Motor Function Classification System (GMFCS) for assessing severity level, the Parental Stress Scale (PSS) for parental stress, and the Kuppuswamy Scale for SES were utilized for objective assessment. Results: Weak nonsignificant correlation found between GMFCS and PSS (P = 0.943, 95% of confidence interval [CI] of difference: −2.04–4.01). Strong significant positive correlation between comorbid factors and parental stress (P = 0.000, 95% CI of difference: 4.5–13.2 for visual impairment, P = 0.000, 95% CI of difference: 2.1–15.1 for hearing impairment, and P = 0.000, 95% CI of difference: 4.4–13.3 for seizure disorder); however, a negative nonsignificant correlation was found between parental stress and SES (P = 0.634, 95% CI of difference: 1.4–0.6). Conclusion: The severity of the child's disability had no influence over the degree of parenting stress. Total family income was found to be weakly and inversely correlated with the degree of parenting stress. However, there was a strong relationship between comorbid factors and parental stress.

Keywords: Cerebral Palsy, Comorbid Factors, Parenting Stress, Severity of Illness, Socioeconomic Factors


How to cite this article:
Kriti K, Pradhan A, Tufel S. Severity of cerebral palsy and its impact on level of stress in the caregivers: A correlational study. Indian J Occup Ther 2019;51:21-5

How to cite this URL:
Kriti K, Pradhan A, Tufel S. Severity of cerebral palsy and its impact on level of stress in the caregivers: A correlational study. Indian J Occup Ther [serial online] 2019 [cited 2019 Jul 20];51:21-5. Available from: http://www.ijotonweb.org/text.asp?2019/51/1/21/256601




  Introduction Top


Impaired development of gross motor function is a major characteristic of cerebral palsy (CP).[1] CP is the leading cause of chronic disability in children making them physically and mentally challenged and socially aloof.[2] Gross motor function, such as the ability to walk is closely related to other problems such as cognitive, seizures disorder, and visual and hearing impairments.[3],[4]

Parenting is inherently stressful at times, and studies have shown that being a caregiver of a child who is disabled is even more stressful. Some studies have tried to identify demographic, psychosocial, and socioeconomic variables which are predictive of parenting stress levels.[5],[6],[7],[8]

During the regular assessment and treatment of children with CP attending child development center (CDC), we observed stress in the caregivers regarding future of their child. Furthermore, other researches pertaining to this study have shown the presence of stress among the caregivers of children with CP.[3],[4],[5],[6],[7],[8] Further after rigorous research on evidence available, we pursued with the current study to find is there any correlation between the level of severity of CP children and its impact on the stress of caregivers.


  Methods Top


This correlational study was carried out in Child Development Centre, Delhi. The study was approved by the Institutional Scientific Committee.

Inclusion Criteria

  • Caregiver taking care for at least past 6 months of the child of age between 1 and 12 years diagnosed with CP, with or without associated problems and attending outpatient department
  • Caregivers of diverse educational level and socioeconomic status (SES) (Kuppuswamy's SES Scale).


Exclusion Criteria

  1. Children with severe infectious diseases such as tuberculosis, meningitis, or severely associated morbidities other than CP
  2. Caregivers with any mental or chronic illness.


Sampling Method

All consecutive children who attended CDC during the time of the study were included, fulfilling the inclusion criteria. In our department, in the past 6 months (before starting the study), we had around 150 children and according to the sample of convenience we selected 100 children. Sample size was 100 caregivers (76 were mothers, 17 were fathers, 3 were grandmother, and 4 were aunty).

Educational level of caregivers was noted and out of all, 51 were illiterate, 43 went to high school/intermediate, and 6 were graduate. Caregivers belonged to varied group of SES were stratified as 7 belonged to upper class, 18 were from upper middle class, and 15 were from upper lower class, and 60 were from lower class (Kuppuswamy's SES scale).[9] Caregivers those who were illiterate their pro forma were filled by the author(s). According to physiological (motor) classification, 100 CP children (males: 66 and females: 34) were included in the study, of them 98 were spastic, 1 athetoid, 1 ataxic, 0 dyskinetic, 0 dystonic, 0 choreoathetoid, and 0 chorea.

Severity level was assessed using the Gross Motor Function Classification System (GMFCS)[10] and according to the classification, children were classified: 6 as Level I, 14 as Level II, 15 as Level III, 25 as Level IV, and 40 as Level V. Comorbidities were also found during the assessment of children with CP and of them, 47 were visually impaired, 13 were hearing deficits, 30 had seizure disorder, and 10 with no comorbidities. The caregivers were approached individually to participate in the study and given a detailed explanation regarding the study. After obtaining the written informed consent from caregiver's, data collection was started. The interviews were conducted between July 2017 and January 2018. The average length of the interview was 25 min.

Scales

The Parent Stress Scale (PSS),[11] GMFCS,[10] Kuppuswamy's SES scale, and sociodemographic pro forma were used.

PSS is widely used in research to evaluate parental stress including studies with parents of children with CP. PSS is an alternative to the 101-item parenting stress index. It provides a measure that considers positive aspects of parenting as well as the negative, “stressful” aspects conventionally focused on. It is 18-item self-report scale and the items represent positive (e.g., emotional benefits and personal development) and negative (demands on resources and restrictions) themes of parenthood. Respondents agree or disagree in terms of their typical relationship with their child or children. The scoring was a 5-point scale: Strongly disagree, disagree, undecided, agree, and strongly agree.[11]

The GMFCS has been reliable to classify the gross motor function of children with CP. The children were classified as Level I can walk without limitations but with impairment in speed, coordination, and balance; Level II- walks with limitations; Level III- walks using a hand-held mobility device; Level IV- self-mobility with limitations; may use powered mobility; and Level V- transported in a manual wheelchair.[10]

Kuppuswamy SES scale is used in urban and peri-urban areas which consider the education of the head of family, the occupation of head of the family, and per capita monthly income.[9] Total scores of SES were stratified as follows: 26–29 belongs to the upper class, 16–25 to upper middle class, 11–15 to lower middle class, 5–10 to the upper lower class, and <5 belongs to lower class.

Sociodemographic questionnaire included data regarding family income, birth history, comorbidities, GMFCS Level, and PSS.

Data Analysis

The data were recorded in Microsoft Excel and analyzed using R studio 3.1. The Pearson correlation coefficient test was used to find the relationship between GMFCS and PSS, comorbidities and PSS, SES, and PSS. The degree of correlation between factors is visualized through a correlation matrix. Statistical test was carried to check the level of statistical significance (P ≤ 0.05) and 95% confidence interval of difference.


  Results Top


Descriptive Characteristics

The sample was comprised 100 children with the mean age of 3.5 years (±2.3). Most of the families were from lower SES, and half of the caregivers were illiterate (51).

[Table 1] represents that the Pearson correlation coefficient test was used to find the correlation between GMFCS and PSS.
Table 1: Pearson Correlation Coefficient Test between Gross Motor Functional Classification and Parental Stress Scale

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There was a weak correlation between GMFCS and PSS (r = 0.007) and the difference between them is not statistically significant (P = 0.943). Results can be better understood with the help of correlation matrix.

[Table 2] represents the relationship between parent stress and SES. There was a negative correlation between the monthly income of the family and the parenting stress level of the caregiver (r = −0.048). Therefore, no statistically significant difference was seen between monthly income and stress level in caregivers (P = 0.634). It is evident from the [Graph 1] that there is a negative correlation between SES and parental stress.
Table 2: Relationship between Parent Stress Scale and Socioeconomic Status on Kuppu Swamy Scale

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[Table 3] represents the relationship between parental stress scale and comorbid factors.
Table 3: Relationship between Parental Stress Scale and Comorbid Factors

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There was a positive correlation between comorbid factors (visual, hearing, and seizure) and PSS and significant difference was found between them. Moderate positive relationship was found between visual impairment and PSS (r = 0.451) and the relationship between them is statistically significant (P = 0.000). Moderate positive relationship was found between hearing impairment and PSS (r = 0.394) and relationship between them is statistically significant (P = 0.000). Moderate positive relationship was found between seizure disorder and PSS (r = 0.376) and the relationship between them is statistically significant (P = 0.000). Thus, the results are suggestive of that there is a positive effect of comorbidities on the level of stress in caregivers and it is evident in [Graph 2].



[Table 4] represents regression analysis of comorbidities to examine the strongest predictor of caregiver stress since they had a significant effect on the level of stress in caregivers [Table 2]. All the comorbid factors show a significant and similar impact on our regression analysis, coefficient values for visual impairment is 8.872 (P = 0.000), for hearing impairment is 8.648 (P = 0.009), and for seizure disorder is 8.883 (P = 0.000).
Table 4: Regression Analysis of Comorbid Factors

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  Discussion Top


The study findings suggested that there is a weak relationship between the severity of the child's disability and the degree of parenting stress experienced (r = 0.007). The severity of the children's disabilities was not found to be reliably predictive of the levels of parenting stress among their caregivers.

Similar studies were conducted which reveals that there were no significant differences in the maternal stress level across types of CP, and only found multiple disabilities alongside CP as a significant predictor of stress levels among mothers.[7] Correspondingly, other studies were done and they also found no statistical significance in differences of depression scores across the types of CP and the severity of disability.[5],[12],[13] Another study was conducted on predictors of stress in mothers of children with CP in Bangladesh and 91 mothers were enrolled in the study and results show that the strongest predictor of caregiver's stresses was child's abnormal behavior and they had found no significant relationship between severity of the child's disability and their parents stress level.[14]

However, few studies aimed to determine the relationship between maternal parenting stress and level of impairment in the child. Among their sample, mothers of children with greater degrees of impairment reported significantly higher parenting stress. They, therefore, proposed that the level of impairment was a statistically significant predictor of maternal stress levels among families caring for a child with CP.[15],[16],[17] Another study which supports that there is a direct relationship between the level of impairment and high levels of stress in caregivers was carried out in 78 parents (53 mothers and 25 fathers). The results were suggestive of both mothers and fathers of children with disabilities experience higher levels of child-related parenting stress than parents of children who have no disability.[18]

The limitation of the study to find any direct relationship between the severity of the child's disability and degree of parenting stress experienced may be attributed to the following factors. First, the age of the children in the sample was highly diverse (1 year–12 years).

Second, most of the caregivers were illiterate or high school pass so they were not able to understand the importance of rehabilitation and rather they preferred the quacks for treatment present in their vicinity due to the ease of accessibility. However, this led to the deterioration in the condition of the child.

Relationship between Parental Stress and Socioeconomic Status

The current study reveals that there is negative correlation between the SES and the level of stress in caregivers (r = −0.048). The sample included parents from varied socioeconomic backgrounds (SES stratified on page number 4); although, the majority of parents were upper lower to middle class income earners yet did not remain as significant predictors in data analysis. Therefore, no significant difference was seen between SES and level of stress in caregivers.

Similar findings were observed in the study conducted on 92 mothers (49 urban and 42 rural) of children with CP in Bangladesh. Results showed that household income was negatively correlated with the level of stress in caregivers of children with CP (r = −0.26).[14]

A controlled study was conducted to evaluate depression in mothers of children with CP and related factors. The primary objective of the study was to determine whether there was any difference, with respect to depression, between mothers of children with CP, and mothers of healthy children. The secondary objective was to evaluate whether some additional factors had an impact on the depression of the mothers. Mothers' depression status was significantly affected by the presence of speech problems in children with CP and a significant negative correlation was found between Beck's Depression Inventory scores and income.[8],[19]

Effect of Comorbid Factors on the Level of Stress in Caregivers

There was a positive correlation between comorbid factors and parental stress. Positive relationship between visual impairment and parental stress (r = 0.451) showed that there is a significant impact of visual impairment on PSS (P = 0.000). Similarly, relationship between hearing impairment and PSS showed positive relationship among them (r = 0.394) and significant effect was found between them (P = 0.000). The relationship between seizure disorder and PSSwas also found to be positively correlated (r = 0.376) and significant effect was seen between them (P = 0.000). Further on regression analysis of comorbidities, results showed a significant and similar impact on caregiver's stress [Table 4]. Results of many studies reveal that parents of children with communication disorder, visual impairments, hearing impairments, and seizure disorder experienced high level of stress than those whose child had no such problems.[20],[21],[22]

Therefore, the outcome of the study suggested that stress was observed in caregivers of children with CP and this was more markedly observed in children with comorbidities such as visual, hearing, and seizure disorder. Furthermore, there was more stress in caregivers of low SES as compared to upper middle class.


  Conclusion Top


The results of the study showed that among the caregivers of children with CP attending CDC, the parenting stress levels as measured by PSS were high. The severity of the child's disability that was assessed using the GMFCS had no influence over the degree of parenting stress experienced. Total family income was found to be weakly correlated with the degree of parenting stress experienced there being an inverse relationship between parenting stress experienced and family income among this study population. However, there was a strong relationship between comorbid factors such as visual and hearing impairment, seizure disorder, and parental stress experienced.

Most importantly, the research highlights the uniqueness and complexity of each family's situation and the importance. Therefore, there is a need for developing a specialized therapy program for each child considering their differing needs within the context of their family.

Financial Support and Sponsorship

Nil.

Conflicts of Interest

There are no conflicts of interest.



 
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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4]



 

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