|Year : 2015 | Volume
| Issue : 2 | Page : 121-126
Parents' expectations from rehabilitation services for their children with cerebral palsy: A retrospective study
Seshagiri Rao Joshi, G Srikrishna, Binapani Mohapatra
Department of Rehabilitation Psychology, National Institute for the Mentally Handicapped, Secunderabad, Telangana, India
|Date of Web Publication||7-Jan-2016|
Seshagiri Rao Joshi
Department of Rehabilitation Psychology, National Institute for the Mentally Handicapped, Manovikas Nagar, Bowenpally, Secunderabad, Telangana
Source of Support: None, Conflict of Interest: None
Background: Early identification and intervention has brought change in the societies towards disability and its management. However, dependency on drug-cure (medical model) has influenced the community expectations on the outcomes of rehabilitation process. The psychosocial rehabilitation process has been sparsely studied in Indian context.
Aim: The present study aims to study whether the expectations of the parents change across the age, as recorded in chief complaints, in a way that psychological disorders are late to be detected and are generally not recognized by parents and medical professionals. The study also found some interesting findings such as ratio of males and females registered and the mean age range of the children registered.
Methodology: The present study has examined and analyzed the documentation of case history files of children brought by their parents and caregivers to the National Institute for the Mentally Handicapped, Bowenpally, General services (n = 3,960) for male and female ratio, mean age of registration, developmental and social age (DA and SA) for 3-36, 36-72, and 72-120 month age ranges, respectively.
Results: As the age increases psychosocial difficulties also increases with psychomotor problems. Registered male cases were more than female cases. The visits to the Psychology department for the behavior problems have increased across the age range.
Conclusions: Psycho-social rehabilitation and family counseling in managing the person with cerebral palsy is effective than behavior modification programs. A mobile Rehabilitation Services team must visit area wise for offering in-the-neighborhood services along with psycho-education for remote areas. Schools need to be sensitized that if motor and speech are the only disabilities in a child, he should not be refused admission. Parents counseling is necessary for vulnerability of psychological problems in this population due to restrictive environment and explain Medical Model VS Bio-Psycho-Social Model.
Keywords: Cerebral palsy, disability, follow-ups, parents, rehabilitation
|How to cite this article:|
Joshi SR, Srikrishna G, Mohapatra B. Parents' expectations from rehabilitation services for their children with cerebral palsy: A retrospective study. Indian J Cereb Palsy 2015;1:121-6
|How to cite this URL:|
Joshi SR, Srikrishna G, Mohapatra B. Parents' expectations from rehabilitation services for their children with cerebral palsy: A retrospective study. Indian J Cereb Palsy [serial online] 2015 [cited 2018 Jan 24];1:121-6. Available from: http://www.ijcpjournal.org/text.asp?2015/1/2/121/173458
| Introduction|| |
"Cerebral palsy (CP) encompasses a group of disorders of movement and posture causing activity limitation attributed to a static disturbance in the developing brain, often accompanied by associated impairments, and secondary health conditions."  Families become critical agents in the care, management, and habilitation of individuals with cerebral palsy. Adjusting to demands of disability is a continuous process across the life span for the individual with disability as well as for the parents rearing the child.  CP cannot be cured and leaves the child with life-long disability with movement and posture limitations.  Inevitably this condition is usually accompanied with psychological disorders. 
In a retrospective study done on 2020 medical case histories, Juneja et al. found that 62.8% of children were referred early (before 3 years of age) to rehabilitative services and children with cerebral palsy were significantly more to be identified and referred for rehabilitative services.  The same study found that children with mental disability were most likely to be referred late for intervention services. The hypothesis of the present study is that although children with cerebral palsy are referred early to services; referring them for psychological complications is late. Hence, the aim of the study is to observe whether the expectations of the parents change across age, as recorded in chief complaints, in a way that psychological disorders are late to be detected and are generally not recognized by parents and medical professionals. Other important objectives of the present investigations are to see the ratio of male and female children of cerebral palsy and mean age range of children registered to the facility. Johnston and Hagber concluded that males are more affected than females, but the disparity is uncertain.  Their study, however, was inclined toward a neurobiological basis for such disparity. Our investigations, in contrast, want to document the observation from a psychosocial perspective. The hypothesis for gender is that they have different presenting complaints across age due to the social stratification of role expectations in the society. The mean age range of children registered in National Institute for the Mentally Handicapped, General Service is the indication of awareness rehabilitation services provided across the lifespan and that early intervention programs result in better outcome and in minimizing the effects of disability and maximizing social inclusion.
| Methods and tools|| |
We have examined the case history records of children registered at National Institute for the Mentally Handicapped for demographic data and chief complaints. In all, we examined 3690 children from the year 2012 until May of 2014. The aim of this study is to understand parents' expectations from rehabilitative services. These expectations were depicted in the form of chief complaints of the parents, which they intend to resolve at the earliest. This study is interested to see whether the parents' expectations include psychosocial development along with psychomotor development of their child. The method followed is to document the course of psychomotor to psychosocial development in children with cerebral palsy. It uses developmental screening test (DST) developed by Raj (1983) which gives developmental quotient (DQ)  and Malin's Indian adapted version of Vineland Social Maturity Scales (VSMS) which gives social quotient (SQ)  as recorded in the case histories. Second, the case history records were segregated into three age groups: 3-36 months; 36-72 months; and 72-120 months to check the development results across the ages. The DQ and SQ will categorize the child on the basis of severity according to Persons with Disability Act, 1995 (Guidelines for Evaluation of Various Disabilities, Section-7): (1) Age-appropriate development and social skills; (2) borderline developmental delay (25% disability); (3) mild developmental delay (50%); (4) moderate developmental delay (75%); (5) severe developmental delay (90%) and (6) profound developmental delay (100%).  This method helps to verify if there would be a demand to address psychosocial issues as the age increases in children with cerebral palsy. Finally, the number of follow-ups in each age range that parents attend in each department will show whether there is an increase in follow-ups to the Department of Rehabilitation Psychology.
Of the total 3690 registered children, CP was diagnosed in 922 (25%). The chief complaints reported by the parents when they bring the child at early age (between 3 and 36 months) were that the child has difficulty to walk and talk. However, as the age increased the reasons for bringing the child were more inclined toward psychosocial, for example, poor toilet control and talking to self and laughing without apparent reason. The minimum age for registration for the first time is 3 months, and the maximum is 10 years. [Table 1] depicts the documented reasons for registering corresponding to the ages. The trend in chief complaints explains the trajectory of life adding up to psychological complications. Initially, motor limitations in the child might lead to dependency for movement and motor control. The constraints force the child to depend on their caregivers for self-help skills. Poor acquisition of language skills results in poor expression of self. An extended time of dependency on parental care and protection seems to exhaust the emotional and social resources of parents. Finally, all these life experiences compound to psychological complications. Kocherova et al. noted that parents who have children with cerebral palsy display emotional disorders.  Parents have difficulty in estimating their child's capacities and limitations might lead to the development of psychological complications.  According to these results, it can be inferred that parents' efforts revolve around training the child in self-help skills and hence psychological disorders generally go unrecognized. Gautam et al. noted that psychological assessments are important to differentiate comorbidity in children with disabilities.  Tessier et al. acknowledges two things: First, comorbidity is strongly associated with psychosocial quality of life (QOL) and second, the severity of the disability is weakly correlated to QOL. 
The total number of male children diagnosed for CP was 599 (65%). Other studies in regard to the ratio of affection on the basis of sex reveal that males have high incidence than females, for example, Johnston and Hagberg have seen males are more affected than females for several brain-based developmental disabilities.  Thordstein et al. attributed the vulnerability in males to early maturation of cerebral cortical electrical activity than in females.  Contradicting Thordstein et al., Jarvis et al. documents that male babies are less mature for their gestational age in cerebral maturity as seen by stimulus habituation.  Such conclusions are beyond the scope of the present study. However, we found that male registrations are more than females. The total number of children diagnosed with cerebral palsy, 664 (72%), were from a rural background. The number of children from a rural background are consistent with the recent study by Juneja et al. who found that the late referrals were due to socioeconomic status and literacy.  However, the present study concedes that the majority of children from the rural population are due to poor availability of resources in the form of alternative financial or social support and rehabilitative services. Children with cerebral palsy also experience intellectual disability associated with psychological complications, and this adds to the burden of care. Coping with the psychological effects of CP could be very difficult.  Depicted in [Table 2] are the registration of children diagnosed with cerebral palsy have decreased across the ages. As mentioned above in the methodology section, the degree of severity is seen to be increasing given the proportion of children registered in each age range. DST and VSMS are generally used to diagnose developmental delay within the age range of (0-72 months) and mental retardation above 72 months. CP rarely occurs without associated deficits.  Mental retardation coexists with CP in approximately 60% of children.  Even though children are spared from mental retardation, there is brain insult resulting in processing impairments in preschool children and learning disabilities in older children. A proper assessment of developmental profile usually results in better rehabilitation.  Section-7 (Ministry of Welfare, O.M. No. 4-2/83-HW.-III) of the guidelines of evaluation of disabilities of neurological nature, mental retardation is defined as "the condition of arrested or incomplete development of the mind, which is especially characterized by impairment of skills manifested during the development period which contribute to the overall level of intelligence, i.e., cognitive, language, motor, and social abilities." 
|Table 2: Number of children registered across the age range and level of condition in each age set |
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The follow-up chart in [Table 3] shows the increase in the number of children to the Psychological Department, which means that there is a demand to address psychological issues in the children with cerebral palsy. Olawale emphasizes better outcomes from psychological rehabilitation in the children with cerebral palsy if their parents are also being periodically assessed for psychological stress. 
| Discussion|| |
As the medical approach is prevalent in the society, parents react passively when they hear that there are no medicines for the condition. CP is early to be detected, but late to be registered according to our findings. The drastic fall in follow-ups to the rehabilitation services might be that parents give up the attempt and come only every year for assessment for government benefits. As the findings of the study contribute, the medical department is the most popular for the parents generally for improvement in seizure attacks. The findings noticed that the age range of the sample tested on DST and VSMS has found gradual decrease in the functional capacities. [Figure 1] [Figure 2] [Figure 3] depict a graphic representation which shows the prominence of mild and moderate levels of decrease in functional due to wearing off motivational factors in parents due to slow and laborious therapeutic process for the child with cerebral palsy. In the same vein [Figure 4] [Figure 5] [Figure 6] display the increase in psychological consultations, which starts firstly referred by physiotherapist that the child is not cooperative. This might be due to anxiety due to physical pain eventually manifest in psychological trauma. The findings show that as the age range increases psychological follow-up increases consistently. It is interesting to find that 5% of the children had at least one course of antipsychotics for complication behaviors. A study by Nazemi in 2012 report some of the common psychological complications such as aggression, anxiety, obsessions, psychosis, paranoid thoughts, and phobias.  Parents of the children with cerebral palsy expect them to walk and talk, but they fail to see the lifespan view and later psychological complications. CP conditions have organicity and have high chances of developing psychological complications that go unnoticed due to learning difficulties and language deficits.  Because of their restriction in mobility,  children are deprived of proper schooling as parents report that school says "we cannot admit the child unless he walks and indicates toilet needs." This is a double loss for the child with cerebral palsy.
|Figure 1: Assessment on developmental screening test and Vineland Social Maturity Scales of age range 3-36 months|
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|Figure 2: Assessment on developmental screening test and Vineland Social Maturity Scales of age range 36-72 months|
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|Figure 3: Assessment on developmental screening test and Vineland Social Maturity Scales of age range 72-120 months|
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Although medical health providers identify the at risk child and promptly guide the parents to rehabilitation services, the mean age range is still 32 months. To diagnose a child with cerebral palsy requires at least 18 months of age. Early age intervention has better outcomes than the rehabilitation process which start beyond infancy.  It is to be noted then that 32 months could be late for intervention. Yet parents report that their doctor has informed them that "the child's brain is not properly developed, and it will gain to walk and talk slowly" such statements only confuse parents by thinking that the child will gain naturally and precious time is already lost. The findings in this study show that there are first time registrations for the intervention services at the age of 10 years, which is difficult for rehabilitation services. The major concern of the parents having children with cerebral palsy was seizure control, and to walk and to talk. These concerns are explainable in terms of functional independence and expressive choices (language makes expression effective). However, parents expect the development to be sequential; in contrast, a child's development is always simultaneous and holistic. Risk factors for psychological disorders are associated with age of onset, severity, and longer duration and are preventable though evidence-based practices.  Hence, parents need to address the needs of the child according to the chronological age and provide a realistically challenging environment for the child to seek an opportunity to learn. The current findings are the records from the case history files, which might be limiting to the purpose of initiating rehabilitation process and their outcomes. After studying these case files, this study concludes with the following recommendations:
Financial support and sponsorship
- Psycho-social rehabilitation and family counseling in managing the adult with cerebral palsy is effective than behavior modification programs
- A area-wise mobile rehabilitation services team must visit and offer in-the-neighborhood services along with psycho-education for remote areas
- Schools need to be sensitized that if mobility and speech are only the disabilities in a child, he should not be refused admission
- Parents counseling is necessary for the vulnerability of psychological complications in this population due to the restrictive environment and explain biomedical model vs. biopsychosocial model.
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6]
[Table 1], [Table 2], [Table 3]