|Year : 2014 | Volume
| Issue : 3 | Page : 170-175
A study on the awareness, beliefs, and service utilization among families of children with cerebral palsy in Jalandhar District of Punjab
Raju Sharma1, A G K Sinha2
1 Department of Physiotherapy, Lyallpur Khalsa College, Jalandhar, Punjab, India
2 Department of Physiotherapy, Punjabi University, Patiala, Punjab, India
|Date of Web Publication||17-Aug-2014|
Department of Physiotherapy, Lyallpur Khalsa College, Jalandhar - 144 008, Punjab
Source of Support: None, Conflict of Interest: None
Introduction: Cerebral palsy (CP) is emerging as one of the main causes of childhood disability in India. Care provided to children with disability largely depends on the awareness, beliefs, and socioeconomic status of the community. This study examines the influence of awareness, beliefs, concerns, and socioeconomic status of the families having children with cerebral palsy in Jalandhar District as one of the cities of state Punjab, Northern India, on the service utilization pattern. Materials and Methods: The study has been approved by BPSAR, Punjabi university, Patiala. Personal interview of 248 families of the children with cerebral palsy using semi structured questionnaire has been the tool for data collection. Results: The awareness of key legislative acts on disability has been nil, though 16.1% parents know about Right to Education (RTE) act and have some knowledge of disability certificate, travelling concession, and benefits and tax rebates available to parents of children with disability. Close to 70% families believe that the condition of the child is so because of the deeds of parents in their previous life and almost an equal number accuse the mother for present condition of her child. Care of child after the demise of parents and the scattered facilities of rehabilitation were the main concerns. Massage has been the most common service utilized by 57.6% followed by physiotherapy (55.6%) and orthoses (38.70%). Speech therapy and special education has been utilized for just 4% of the children belonging to upper and middle classes only and none of the children of any class has received occupational therapy. Conclusion: The awareness level and pattern of service utilization was significantly (P < 0.05) associated with the socio-economical status of family and awareness of rehab services requirements. The findings of the study reinforce that it is essential that concrete steps should be taken to sensitize the community and medical professionals about the needs and methods of rehabilitation of cerebral palsy.
Keywords: Cerebral palsy, rehabilitation, awareness, beliefs
|How to cite this article:|
Sharma R, Sinha A. A study on the awareness, beliefs, and service utilization among families of children with cerebral palsy in Jalandhar District of Punjab. CHRISMED J Health Res 2014;1:170-5
|How to cite this URL:|
Sharma R, Sinha A. A study on the awareness, beliefs, and service utilization among families of children with cerebral palsy in Jalandhar District of Punjab. CHRISMED J Health Res [serial online] 2014 [cited 2021 Sep 18];1:170-5. Available from: https://www.cjhr.org/text.asp?2014/1/3/170/138886
| Introduction|| |
After the eradication of polio, cerebral palsy (CP) is emerging as one of the main causes of childhood disability in India. Cerebral palsy is a well-recognized neurodevelopment condition beginning in early childhood and persisting throughout life span. The term cerebral palsy describes a group of disorders of development of movement and posture causing activity limitation that are attributable to non progressive disturbances occurred in the developing fetal or infant brain.  The motor disorders of CP are often accompanied by disturbances of sensation, cognition, communication, perception, and/or behavior and/or by seizure disorder. The natural history of untreated CP is one of progressive deterioration.  Most children with cerebral palsy need rehabilitation services for many months or years. The services of developmental pediatrician, pediatric orthopedics surgeon, neurologist or neurosurgeon, physiotherapy, occupation therapy, speech therapy, orthotics, and special education are necessary for enabling the child to achieve its fullest functional potential. 
Very few people with disability get benefits of rehabilitation services in India.  Unmet rehabilitation needs contribute to limit activity, restrict participation, cause deterioration in health, increase dependency on others for assistance, and decrease quality of life. , Development and implementation of effective Rehabilitation policies and program requires data on the factors affecting the rehabilitation.  The need for research on the link between rehabilitation needs, services utilization, and barriers and facilitators for rehabilitation has been expressed. , However, systematic research into determinants of disability has been scanty from India.  Among the factors that affect the utilization of health services, the most prominent are awareness, believes about the condition, knowledge of the required facilities and the socioeconomic status of the family.  A recent study has reported financial problem, lack of awareness, family negligence, and transportation problem as major barriers for neurological rehabilitation in Uttar Pradesh.  Similar studies in context of Punjab especially with regard to rehabilitation of cerebral palsy could not be located. Such information is needed to identify the issues that need intervention and advocacy. Keeping this in mind, the present study has been planed to explore the awareness, beliefs, concerns and socioeconomic status of the family of children with cerebral palsy in a major district of Punjab and examine the influence of these factors on the service utilization pattern.
| Materials and Methods|| |
This survey study has been conducted on family members of 248 children (male = 159, female = 89) with cerebral palsy in the Jalandhar district of Punjab during June 2009 to March 2012 as a part of a larger project to study the epidemiology of disability in children with cerebral palsy. During 2008 to 2010, a data base of children with cerebral palsy of age-group 3-13 years of Jalandhar district of Punjab has been prepared by the investigator. Using records of some hospitals and physiotherapy centers, identification camp organized by a physiotherapy teaching institution and registry of Sarv Shiksha Abhiyaan as base, the investigator went to all the 10 blocks of Jalandhar district to register the children with cerebral palsy for the study. Several children have been subsequently added to the initial list when brought to the notice of the investigator by the local community members and cross referral from the parents of cerebral palsy children. In a duration of 3 years, a total of 248 children with cerebral palsy of age-group 3-13 years have been included in the data base.
Scheduled Interview of parents of all the identified children were conducted by a physiotherapist having 11 years of experience of working with cerebral palsy children.
The schedule of interview consisted of semi-structured questions focusing on demographic information, concerns, expectations, beliefs, and awareness. Initial draft of questionnaire prepared after a review of literature and in depth interview of some family members of children was validated for content by a panel of experts consisting of a physiotherapist, a pediatrician and a social worker. The schedule was pre tested on 25 parents before using for final data collection. The schedule of questions regarding the domains of awareness, beliefs, family concerns and expectation consisted of 25 items. The awareness section consists of 12 items seeking information on the awareness of family about the about the cerebral palsy, various benefits at Government level, provision of education at schools and various treatment/rehabilitation services required for the child. Belief section consists of six items to explore the common beliefs about disability and cerebral palsy prevailing in the society, whereas section on expectations and concerns consists of seven items Each item has been developed in 3-point likart scale to be responded either yes, no, or do not know. Responses were dichotomized with 1 to correct response and 0 to do not know and incorrect response for data analysis. The section on service utilization consists of 16 items seeking information on advice for rehab, medicine, corrective surgery, neurological procedures, physiotherapy, occupational therapy, orthotics, speech therapy, special education, inclusive education, homeopathy, ayurvedic, and traditional treatment.
The socioeconomic status of the family has been determined by socioeconomic scale developed by Aggarwal et al.,  This scale is a modification of Kuppuswamy scale suitable for both rural and urban population. It provides an socioeconomic score by totaling the scores assigned to the variables of education, occupation and monthly income of the head of family in seven point scales. On the basis of socioeconomic score the family can be grouped in five socioeconomic classes viz., upper class, upper middle class, lower middle class, upper lower class, and lower. For the purpose of analysis in this study, the two categories (upper and lower) of lower and middle class were clubbed to get three categories of socioeconomic class.
Data was categorized on the basis of socioeconomic status of the family. The tool of statistical analysis is cross tabulation with Chi-square test (χ 2 ) was tool of statistical analysis with level of significance set at P < 0.05. Results have been presented in absolute numbers and percentage.
| ResultS|| |
Significant differences (P < 0.05) across the socioeconomic classes have been observed in the seven items of domain of awareness with awareness, level of upper class was better than middle and lower class [Table 1]. Little less than 20% of the parents are found to be aware of the professional services required for the rehabilitation of their wards and only 10.9% parents are found to be aware of the condition of cerebral palsy. 16.1% know about Right to Education (RTE) act and have some knowledge of disability certificate, traveling concession, tax rebates and benefits available to the children with disability. Awareness of disability related legislative acts is found to be nil among the families of children afflicted with CP.
|Table 1: Awareness of families of cerebral palsy as per socioeconomic class|
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A very large percentage of families subscribes to the negative social beliefs about disability [Table 2]. All families believe that a timely diagnosis and better provision of medical and rehabilitation facilities would have contributed to the improvement of the present condition of the child. Close to 70% families believed that deeds of parents in their previous life were responsible for having such a child in the family and almost an equal number accuse the mother for the existing condition of child. Very small percentage (9.3%) believe that the lack of care at the time of delivery might have contributed to the condition of the child. A total of 87.5% believe that presence of such a child in family was because of ill fate. The socioeconomic status significantly influences the belief that physical exercises would contribute to improvement of the condition of the child. And, 71.74% families of lower socioeconomic class think that only medicine and surgery can bring about improvement in condition of their wards. The situation in upper and middle class is found to be different. A larger percentage of these classes believe that physical exercises will improve the condition of the child.
|Table 2: Belief of families of cerebral palsy according to socioeconomic class|
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All families of upper and middle socioeconomic class are found to be hopeful that one day child will be completely normal and be independent in self care activity [Table 3] but majority of these two classes did not expect their ward to be an earning hand of the family. Every family irrespective of social class has been worried about the care of child after the demise of parents and all are dismayed about the scattered facilities of rehabilitation.
|Table 3: Expectations of families of cerebral palsy as per socioeconomic class|
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[Table 4] presents the service utilization pattern according to the socioeconomic class of the families. The pattern of rehab service utilization was significantly (P < 0.05) associated with the socio-economical status of family [Figure 1] and awareness [Figure 2]. The advice for rehabilitation has been provided to only 17.3% children. Massage has been the most common service utilized by 57.6% followed by physiotherapy (55.6%) and orthoses (38.70%). Speech therapy and special education was utilized for just 4% of the children, all belonging to upper and middle class. None of the children of any class had received occupational therapy. Rehab service utilization has been relatively better in the families of upper and middle socioeconomic class.
|Figure 1: Rehab services utilization of families of children of cerebral palsy according to socioeconomic status|
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|Figure 2: Rehab services utilization according to awareness of services required for rehab of child with CP|
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|Table 4: Pattern of service utilization of families of cerebral palsy as per socioeconomic class|
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| Discussion|| |
In the last two decades, India has witnessed a quantum leap in disability movement resulting in a paradigm shift in the polity and affirmative actions. Three important legislations viz Rehabilitation Council of India (RCI) Act, 1994, People With Disability (PWD) Act, 1995, and National Trust (NT) Act, 1999 have been enacted and Government of India has made provisions for several direct and indirect benefits to the people with disability.  Recently enacted Right To Education (RTE) act provides all children including the children with disability the right to education. Sarv Shiksha Abhiyaan, a flagship program of Government of India, includes steps for early identification and timely intervention of children with disability so that they can be included in the main stream education system.
However, lack of awareness, negative beliefs, and unorganized rehabilitation services often act as stumbling blocks in the utilization of these provisions. The present study highlights that ignorance about the condition and negative beliefs are very high among the parents of cerebral palsy children of Jalandhar district and contribute in a big way to the non utilization of rehabilitation services.
The awareness about the disease and disability can bring about a lot of change in the success or failure any program.  For the services and legislation to be of optimal benefit, it is necessary that the family of the child with cerebral palsy is aware of the required services and available benefits. It is established that adequate knowledge of CP helps parents to cope well with the demands of taking care of children with CP.  In this study, the awareness of the disability certificate, tax benefits and travel concessions have been found to be a bit better among the families as compared to their awareness of the keys legislative acts on disability. It was interesting to observe that while every parent was concerned about the care of child after his demise, none of them has heard about the National Trust Act (1999) which specifically deals with this issue. It is necessary that urgent steps should be taken to sensitize the parents of cerebral palsy child about the legislative provisions and the services required for the management of the condition.
Jalandhar is one of the most prosperous districts of Punjab. The area of Jalandhar District is 3,401 sq. km with total population 19,53,508 persons (10,26,535 males and 9,26,973 females) with 47.2% rural and 52.93% urban. Male and female literacy are 86.15 and 78.48, respectively. Children under 0-6 form 10.32% of the population.  The city of Jalandhar has probably the highest density of hospitals and nursing homes in Punjab. However, there is no institution that provides all the rehab services under one roof for the rehabilitation of children with cerebral palsy. The city has a number of charitable and private physiotherapy clinics besides a physiotherapy department at government civil hospital. There are six physiotherapy teaching institutions offering bachelor and masters degree programs in physiotherapy. However the rehabilitation service utilization among children with CP in Jalandhar, as emerges in this study, can at best be described as abysmal.
The present study shows that the advice for rehabilitation has been provided to only 17.3% children. Physiotherapy and orthotics have been the only rehab services available to most of these children. Only 55.6% children have received some form of physiotherapy. Not a single child has received occupational therapy. Speech therapy has been offered to just 4% children. Even this inadequate service utilization has wide socioeconomic divide. The rehabilitation service utilization among the upper and middle class was a bit better in comparison with families of lower socioeconomic status.
In comparison to 78.8% children belonging to families of upper socioeconomic status, only 41.3% children of lower class had received physiotherapy. In lower social economic class, the percentage of children receiving orthotics support, surgery, and special education were significantly less than that of children of upper socioeconomic class. Children of lower class are mostly provided with wheel chair whereas the same prescription was offered to 0% of upper class and 13.8% of middle class.
The reason for this divide is not difficult to understand. The linkage between disability and socioeconomic deprivation is well established.  This study supports the notion that lack of access to health and rehabilitation care and ignorance about the cause of disability has greater likelihood of occurrence among poor families.  The high level of ignorance and resourcelessness of the families belonging to lower socioeconomic class often restricts the choice and availability of rehabilitation services.  Significant socioeconomic class difference in the domains of awareness and expectation along with resourcelessness seems to have affected the service utilization pattern in the present study.
Perception on disability has largely been influenced by the medical factors. People believe that disability is some sort of disease that could be diagnosed, treated and cured.  The high expectation of normalcy among the families of cerebral palsy children observed in this study highlights this point. In childhood disability like cerebral palsy, the aim of intervention is not complete cure but habilitation. This truth is often emotionally not acceptable to parents and they tend to be lured towards other treatment methods existing in the community.  Consumption of homeopathic medicine by 77.0%, ayurvedic medicine by 86.3%, and magical remedies by 24.6% observed in this study supports this notion. In this situation, it becomes imperative that parents of child are provided with accurate information about the condition and the services required for physical empowerment of the child.
However, it was appalling to note that only 17.3% of the families have been provided with information and advice for rehabilitation. Majority (91.1%) of children have been just prescribed an assortment of tonics and vitamins. Such practices only serve to strengthen the wrong perception that cerebral palsy is a disease not a life long condition. It is essential that the sensitization and advocacy program on rehabilitation of cerebral palsy should also be initiated for the medical professionals as without the cooperation of medical professionals the rehabilitative efforts would not gain acceptance in the community. The need for such program has also been emphasized by Padmamohan et al., (2009) whose study on preschool disabled children in rural Kerala identified low socioeconomic status, poor perceptions about the disease and disability, low educational level of parents, and poor acceptability of services as factors responsible for lower utilization of rehabilitation services. 
The study has been delimited to Jalandhar district. Conducting similar studies in other parts of country would help elucidate the true picture of the demand side of the rehabilitation services and contribute to effective policy making. Further studies are required to examine the influence of awareness on the adherence of rehab program.
In conclusion, this study highlights three main points: Awareness about cerebral palsy and its rehabilitation is low in Jalandhar district, the service utilization for rehabilitation of cerebral palsy is inadequate and socioeconomic status, and awareness of the family significantly influences the rehab service utilization. It is essential that concrete steps should be taken to sensitize the community about cerebral palsy. Sensitization and advocacy program for creation and utilization of rehabilitation services like physiotherapy occupational therapy, speech therapy, special and inclusive education would contribute to improve the status of children with cerebral palsy. Cerebral palsy rehabilitation is a long-term process. Families of low socioeconomic status often do not afford the cost of long term rehabilitation services like physiotherapy, occupational therapy and speech therapy. A mechanism should be evolved to support these families in availing these services so that irrespective of socioeconomic status of the family every child with cerebral palsy gets opportunity for physical empowerment.
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[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4]
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