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ISSN: Print -2349-0977, Online - 2349-4387


 
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ORIGINAL CONTRIBUTION - CAREGIVERS HEALTH
Year : 2016  |  Volume : 2  |  Issue : 4  |  Page : 167-171

Physical and mental health among caregivers of children with cerebral palsy


Department of Physical Medicine and Rehabilitation, All Institute of Medical Sciences, New Delhi, India

Date of Web Publication22-Sep-2016

Correspondence Address:
Sardana Ramita
H. No. 975, Sec. 6, Bahadurgarh - 124 507, Jhajjar, Haryana
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/2349-0977.191038

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  Abstract 

Background: While the hardships faced by children with cerebral palsy are well known, there is a crying need to understand if their caregivers also suffer both mentally and physically due to the disability of the children. Aim: To study the physical and mental health of the caregivers of children with cerebral palsy and how various factors may influence the same. Settings and Design: This was a descriptive study and was conducted in the Department of Physical Medicine and Rehabilitation, All India Institute of Medical Sciences, New Delhi. Materials and Methods: Study sample consisted of 65 primary caregivers of children with cerebral palsy. Questionnaires about physical and mental health from family burden scale were used. Descriptive statistics and multiple regressions were used for data analysis. Results: Both physical and mental health of the caregivers were affected to some extent. A significant association was found between physical health of caregivers and duration of knowing the diagnosis, seizures, and mental retardation in the children. Moreover, impact on mental health was significantly associated with total number of children, duration of care giving, knowing the diagnosis, speech disturbance, seizures, and mental retardation in children. Conclusions: Caregivers of children with cerebral palsy experience some effects on their physical and mental health, which are associated with various factors. Therefore, healthcare professionals should also provide care and support to these caregivers, so that they can effectively and efficiently care for their children with cerebral palsy.

Keywords: Caregivers, cerebral palsy, mental health, physical health


How to cite this article:
Ramita S, Yadav S L, Singh U, Sumalatha K B. Physical and mental health among caregivers of children with cerebral palsy. Astrocyte 2016;2:167-71

How to cite this URL:
Ramita S, Yadav S L, Singh U, Sumalatha K B. Physical and mental health among caregivers of children with cerebral palsy. Astrocyte [serial online] 2016 [cited 2021 Dec 1];2:167-71. Available from: http://www.astrocyte.in/text.asp?2016/2/4/167/191038


  Introduction Top


Most children enjoy healthy childhoods with little need for specialized healthcare services. However, children with cerebral palsy experience difficulties in early childhood and require access to and utilization of healthcare services. Although caregiving is a normal part of being the parent of a young child, this role takes on an entirely different significance when a child with cerebral palsy experiences functional limitations and possible long-term dependence.[1] One of the most important factors in child's long-term success is the caregiver. Providing a high level of care required by a child with cerebral palsy may impact both the physical and mental health of a caregiver.[2]

This study is an effort to know the impact on the physical and mental health of caregivers of children with cerebral palsy.

Review of literature

Pizur-Barnekow et al.[3] studied Maternal health after the birth of a medically complex infant: Setting the context for evaluation of co-occupational performances. They found that mothers experienced upsetting of mood after giving birth to a medically complex infant or of their babies' hospital stay. 50% of women lost interest in doing things that they usually engaged in. 70% said they had difficulty in falling asleep and staying asleep.

A study on family-centered care giving and wellbeing of parents of children with disabilities linking process and outcomes was conducted by King et al.[4] The results showed that more family-centered care giving was a significant predictor of parent wellbeing.

Murphy et al.[5] studied health of caregivers for children with disabilities: Caregivers' perspective. They included 40 parents of children with disabilities. Summary statistics were generated for questionnaire responses. The care giving experience was captured by five themes: (i) Stress of care giving; (ii) negative impact on caregiver health; (iii) sharing the burden; (iv) worry about the future; (v) care giving coping strategies. 41% reported that their health has worsened in the past year and attributed these changes to lack of time, lack of control, and decreased psychosocial energy.

In Kenya, Gona et al.[6] conducted a study on Caring for children with disabilities: What is the carer's experience? This study investigated the challenges encountered by these carers and the mechanisms of coping with these challenges while caring for children with disabilities in a poor rural setting in Kenya. They found that fear for the future, stress, rumor-mongering, and poverty are encountered by carers.

With the objective to identify the relationship between characteristics of the child with Down syndrome and the health of their mothers, Bourke et al.[7] conducted a study on the relationship between characteristics of children with Down syndrome and the health of their mothers. They concluded that the most important predictors of maternal health were children's behavioral difficulties, everyday functioning, and current health status.

A study titled “Mental health and marital adaptation among mothers of children with cerebral palsy” was conducted by Florian and Findler.[8] Results revealed differences between the two groups and indicated that, among mothers of children with cerebral palsy, self-esteem, self-mastery, and family network size were the main variables that contributed to mothers' psychological and marital adaptation.

Svedberg et al.[9] conducted a study on comparison of impact on mood, health, and daily living experiences of primary caregivers of walking and non-walking children with cerebral palsy and provided community services support. Compared with parents of walkers, parents with non-walking children and several disorders were more frequently anxious for their children's physical and psychological health; often experienced restricted time for themselves; reported frequent daily living interferences; and stated that their health was affected due to the child's health. 10% of all families reported that their need of community services support was unmet.

Aim

To study the effect on the physical and mental health of caregivers of children with cerebral palsy and its association with various factors.


  Materials and Methods Top


Caregivers of children who had received a diagnosis of cerebral palsy and came to OPD of Department of Physical Medicine and Rehabilitation, All India Institute of Medical Sciences, New Delhi were included in the study.

Sample size calculation

Considering the anticipated severe stress among caregivers of children with cerebral palsy as 40%, level of confidence as 95%, absolute precision as 15%, 40 ± 15%, i.e., 25–55, we needed to enroll 65 caregivers of children with cerebral palsy.

Inclusion criteria

  • Caregivers of children, who had received a diagnosis of cerebral palsy
  • Caregivers who wished to participate in the study
  • Caregivers who were able to communicate in Hindi or English to answer the questionnaire
  • Both caregivers and child lived in the same house and caregiver was responsible for child care for more than 3 months.


Exclusion criteria

  • Caregivers who refused to participate in the study
  • Caregivers of children with disabilities not associated with cerebral palsy
  • Caregivers of children with other health problems that are not related to cerebral palsy such as Heart disease, Diabetes mellitus, Down syndrome
  • Caregivers suffering from an already diagnosed psychiatric illness.


Tools

Physical and Mental health of caregivers was assessed using questions related to the physical and mental health of caregivers from Family Interview Schedule developed by Pai and Kapur.[10]

Three point scale:

Severe burden—2

Moderate burden—1

No burden—0

Effect on physical health of others

  • Have any other members of the family suffered physical ill health, injuries, etc., due to the patient's behavior? How has this affected them?
  • Has there been any other adverse effect on health (losing weight, etc.)? How severe is it?


Effect on mental health of others

  • Has any other family member sought help for psychological illness brought on by the patient's behavior? How severe is this?
  • Has any other member of the family lost sleep, become depressed, suicidal wishes, become excessively irritable, etc.? How severely?


Association of physical and mental health with various factors such as age of the caregiver, sex, child gender, relationship to the child, education of caregiver, total children, occupation, family income, duration of caregiving, duration of daily caregiving, duration of knowing the diagnosis, speech disturbance, visual disturbance, hearing trouble, seizures, and mental retardation was also observed.

The sample group was selected from care givers who personally accompanied their children to the outpatient department of Physical Medicine and Rehabilitation. Those who agreed to participate signed an informed consent form. After that they were interviewed. They were explained how to answer the questionnaires. Next, they were handed over the questionnaires and were allowed to answer themselves. In case they had problem in reading or writing, questions were read and they were allowed to answer item-by-item. All the data gathered from the questionnaires were analyzed.

Statistical analysis

Data was recorded on a pre-described pro forma and managed on an excel spreadsheet. Demographic and patient's characteristics were summarized by mean ± S.D (for quantitative variables) and frequency (percentage for categorical variables). Association of different factors with scores of physical and mental health was determined.

Correlation coefficient between physical and mental health score for each of the domains and total was computed. Multiple linear regression analysis was used to determine the role of various factors on these scores.

The analysis was done as follows:

  • Dependent variables as score and factors as various demographic, socioeconomic, and patient characteristics
  • Physical and mental health score as dependent variable, and factors as demographic, socioeconomic, and patient characteristics. STATA 11.0(Prepared by Biostatistics Consulting Center University of Massachusetts School of Public Health) statistical software was used for data analysis. In this study P value of <0.05 was considered statistically significant.



  Results Top


Effect on Physical Health

The mean score was 2.01 ± 0.94 (min 0 and max 4) which was moderate.

Effect on Mental Health

The mean score was also moderate, i.e., 2.32 ± 0.82


  Discussion Top


Effect on physical health of caregivers

The mean score of effect on physical health of caregivers was 2.01 ± 0.94, which was moderate. This implies that their physical health was affected to some extent while caring for their children with cerebral palsy. These findings were not very consistent with the findings of a study done by Eker and Tüzün,[11] which was a study on the quality of life of mothers of children with cerebral palsy. They found that mothers of children with cerebral palsy had significantly lower quality of life, and it was significantly correlated with the severity of their child's motor disability. In addition, it was proved in a study conducted by Eisenhower et al.[12] using family impact questionnaire that early child-related stressors in relation to maternal health were child developmental delay and behavioral problems. Mothers reported significantly poorer physical health.

Effect on mental health of caregivers

The mean score of effect on mental health was also moderate. This implies that mental health of caregivers was affected to some extent. This may be due to the reason that, according to the pro forma, we asked caregivers if they had to take psychiatric consultation ever, to which many of them denied. This could possibly be due to the fact that in India people usually hesitate to seek medical advice for their mental health problems. These findings were not consistent with the studies done abroad.

Association with various factors

There was no effect of the age of caregivers on the scores of physical and mental health [Table 1] and [Table 2]. This can possibly be explained by long duration of caregiving provided by these caregivers, which suggested that caregiving experience, and not age, was related to the effect on physical and mental health.
Table 1: Association between Effect on Physical Health and Various Factors

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Table 2: Association between Effect on Mental Health and Various Factors

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It was interesting to note that there was no significant difference between the effect on health of caregivers of male and female child [Table 1] and [Table 2]. These results showed that probably the worries about their future and responsibility of caregiving were same in caregivers of both male and female children.

No association was found between health of caregivers and their education level [Table 1] and [Table 2]. In literature, no studies were found indicating the relationship between the above two factors.

Caregivers of children with more number of children were found to have better mental health [Table 2]. The reason could be that, with more number of children, caregivers were less worried about the future of their child with cerebral palsy, and also they found some assistance in taking care of these children and other household work.

No significant association was found between health of caregivers and their occupation [Table 1] and [Table 2]. A study conducted by Brehaut et al.[13] showed that the majority of caregivers were non-working and had lower income than did the general population of caregivers, despite the absence of any important difference in education between the two samples.

Caregivers with longer duration of caregiving were found to have more severe effect on their mental health [Table 2]. This may be due to the fact that, as the age of child and duration of caregiving increased, caregivers started having more worries about their child's future, especially when they saw their child not achieving milestones at the same age as others.

No association was found between duration of daily caregiving and effect on physical and mental health [Table 1] and [Table 2]. The reason could be that it did not matter how much time they spent with their children they had the same effect on their mental and physical health.

Caregivers of children with speech disturbance associated with cerebral palsy were found to have more effect on their physical and mental health [Table 1] and [Table 2]. It may be due to the fact that children with speech disturbance were not able to tell their requirements, and hence the caregivers of these children were very much worried about their future.

No significant association was found between effect on the physical and mental health of caregivers and visual disturbance or hearing trouble in the child with cerebral palsy [Table 1] and [Table 2]. This could be possibly be because, in majority of children, visual problem was of squint only and hearing troubles were of minor concern, as the caregivers were more concerned about the delayed milestones of the children.

Caregivers of children with seizures and mental retardation associated with cerebral palsy were found to have higher scores of effect on their physical and mental health [Table 1] and [Table 2]. This may be due to the fact that seizures and mental retardation were adding to the concern and worries of caregivers about the future of their children. In addition, both of these worsened the condition of milestones achievement in the children.


  Conclusion Top


It can be concluded from this study that caregivers' health is also affected while caring for children with cerebral palsy, which should not be neglected by healthcare providers. Caregivers' support system should be enhanced. More information should be provided to the caregivers about cerebral palsy as well as access to community resources. Group support should be provided as an exchange of knowledge. Services should be provided by home visits and giving possible help to caregivers and children. Other family members should be encouraged to help the caregivers in other household work and caring for these children. Health and wellbeing of caregivers should be encouraged and promoted.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflflicts of interest.

 
  References Top

1.
Raina PParminder Raina, O'Donnell MMaureenO'Donnell, Rosenbaum PPeterRosenbaum, Brehaut JJamieBrehaut, Walter SDStephenD. Walter, Russell DDianneRussell. The health and well-being of caregivers of children with cerebral palsy. Paediatrics 2005;115:e626-36.  Back to cited text no. 1
    
2.
Masten AS, Best KM, Garmezy N. Resilience and development: Contributions from the study of children who overcome adversity. Dev Psychopathol 1990;2:425-444.  Back to cited text no. 2
    
3.
Pizur-Barnekow K. Maternal health after the birth of a medically complex infant: Setting the context for evaluation of co-occupational performance. Am J Occup Ther2010;64:642-9.  Back to cited text no. 3
    
4.
King G, King S, Rosenbaum P, Goffin R. Family-centered caregiving and well-being of parents of children with disabilities: Linking process with outcome. J Pediatr Psychol 1999;24:41-53.  Back to cited text no. 4
    
5.
Murphy NA, Christian B, Caplin DA, Young PC. The health of caregivers for children with disabilities: Caregiver perspectives. Child Care Health Dev 2007;33:180-7.  Back to cited text no. 5
    
6.
Gona JK, Mungála-Odera V, Newton CR, Hartley S. Caring for children with disabilities in Kilifi, Kenya: What is the carer's experience? Child Care Health Dev 2011;37:175-83.  Back to cited text no. 6
    
7.
Thomas K, Girdler S, Bourke J, Deshpande A, Bathgate K, Fehr S, Leonard H. Chapter three-overview of health issues in school-aged children with Down Syndrome. Int Rev Res Ment Retard 2010;39:67-106.(Reference in google scholar)  Back to cited text no. 7
    
8.
Florian V, Findler L. Mental health and marital adaptation among mothers of children with cerebral palsy. Am J Orthopsychiatry 2001;71:358-67.  Back to cited text no. 8
    
9.
Svedberg LE, Englund E, Malker H, Stener-Victorin E. Comparison of impact on mood, health, and daily living experiences of primary caregivers of walking and non-walking children with cerebral palsy and provided community services support. Eur J Paediatr Neuroleuropeanjournalofpaediatricneurology. 2010;14:239-46.  Back to cited text no. 9
    
10.
Pai S, Kapur RL. The burden on the family of a psychiatric patient: Development of an interview schedule. Br J Psychiatry 1981;138:332-5.  Back to cited text no. 10
    
11.
Eker L, Tüzün EH. An evaluation of quality of life of mothers of children with cerebral palsy. Disability Rehabil 2004;26:1354-9.  Back to cited text no. 11
    
12.
Eisenhower AS, Baker BL, Blacher J. Children's delayed development and behavior problems: Impact on mothers' perceived physical health across early childhood. Soc Sci Med 2009;68:89-99.  Back to cited text no. 12
    
13.
Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M, et al. The health of primary caregivers of children with cerebral palsy: How does it compare with that of other Canadian caregivers? Pediatrics 2004;114:e182-91.  Back to cited text no. 13
    



 
 
    Tables

  [Table 1], [Table 2]


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