Please use this identifier to cite or link to this item: http://192.168.194.112/handle/1/4635
Title: A Study Of Views of Siblings About The Impact Of Having S Brother /Sister With Cerebral Palsy
Authors: Nayar, Mahim
Keywords: School of Social Sciences
Sandhya Limaye
Issue Date: 2003
Abstract: The idea for this study was conceptualized from the experiences of the researcher with the families of children with cerebral palsy. After meeting some of them in a physiotherapy center and talking to the mothers and to some of the siblings, it was realized that that families of children with disabilities live through an experience, which is unique. Their understanding of the situation and how they deal with it are things, which are largely not talked about. Because of this interaction, the student (who later became the researcher) wanted to understand and get to know these families better. It was decided that the study would concentrate on the siblings' experience because they are the ones who rarely get to express their views, even though they are most affected. Also having a sibling affects the growth of the child with a disability. Therefore it was decided that there would be an exploration of areas related to the developmental stages of the sibling and the child with cerebral palsy. This is because during these stages the sibling relationships have their most powerful and long lasting effects. The objectives of the study were: 1.To study the views of siblings about the impact of having a brother/sister with cerebral palsy with respect to the following areas: Knowledge about Cerebral Palsy b) Social Life c) Family Responsibiliti Academic Performance e) Relationship with brother/sister with cerebral palsy 2.To see the sibling's way of coping with the impact of having a brother/sister with cerebral palsy. The sample of siblings consisted of more female than male siblings. In case of the children with cerebral palsy it was the opposite, that is, more male than female children. One of the main things, which came out of the study, was that largely siblings did not view having grown up with a brother/sister with cerebral palsy as a negative experience. It was found that most of the siblings had found out that their brother/sister had cerebral palsy quite early. Some of them were upset when they found out. But many of them did not understand what it meant because they were too young. It was only later that they realized the actual implications. Most of the siblings were not aware of the exact meaning of cerebral palsy. With respect to the causes, 29% of the siblings said that they did not know. 23% of the siblings attribute the condition to the fact that their brother/sister was born prematurely. When asked about the kind of activities that their brother/sister could perform, it was found that the siblings perceived using the toilet (50%) and dressing up (55%) as the two most difficult activities for their brother/sister with cerebral palsy Since social life of the sibling is an important indicator of his/her adjustment, they were also asked about the kind of activities that they participated in. it was found that the male siblings were more involved than female siblings in activities like sports an going out with friends. With other activities like going out for movies, going to houses of relatives, the pattern was similar. As compared to their brother/sister with cerebral palsy, the sibling tended to go out less. This was because the children with cerebral palsy went out for outings from school. 62% of the siblings said that they went out for annual vacations; these vacations were usually to the houses of extended family. Peer interaction is another important sphere of social life. 76% of the siblings had a large friend circle and 85% of them had told their friends that they had a brother/sister with cerebral palsy. 44% of the siblings also said that their friends had a good interaction with their brother/sister with cerebral pal 53% siblings said that their social life had not been affected at all. Although they talked about the various adjustments, like not going out for movies, that they had made. Responsibilities in the household were another area where gender differences came out clearly. More female siblings were involved in activities like cooking, cleaning and washing clothes as compared to male siblings. Male siblings were usually more involved in activities like shopping for household goods. It was also found that many children with cerebral palsy were not involved in household work because they were never asked by their parents to help out. In teens of taking care of the brother/sister with cerebral palsy, siblings were most involved in activities like- helping them in school work, teaching them what is right and wrong, and in play activities. In the area of academic performance, it was found that most of the siblings got enough time to study. 50% of them considered their performance in academics as average case of poor performance, most siblings attributed it to `bad luck'. 82% of the siblings' felt that their parent's expectations from them were normal. But this was also because they had very high expectations from themselves. Many of them want to become doctors, scientists and so on in order to look for a cure for cerebral palsy. When asked about what they liked most about their brother/sister with cerebral palsy, the responses were in two categories physical and behavioral. Three (8%) of the siblings said that they liked nothing specific about them. While describing what they liked least abou 8% (33) of the siblings said that they fought with their brother/sister with cerebral palsy; only one sibling said that they never fought. The main issue of fights was over the ownership of things -11(32%) of the siblings cited it as the main reason. The main way in which their fights were resolved was that their mother solved the problem (56%). The main worry of the siblings was that what would their brother/sister with cerebral palsy do when they grow up. When asked whether they needed more information regarding cerebral palsy or not 29% said that they did not need any information. But 68% of the siblings wanted information regarding what exactly cerebral palsy was, its causes and its cure. In suggestions six (18%) of the siblings wanted to join a support group for siblings who had a brother/sister with cerebral palsy. They wanted to join this group so that they would be able to share their feelings with other people who had gone throug similar experiences. Other suggestions offered were that there should be better services in terms of availability of more professionals and medical services in all areas, more special schools should be present and that there was a great need Jr generating awareness among the public. In terms of coping, it was found that in most areas parents were the main source of help. Their attitudes, expectations were the factors, which affected the coping mechanisms of the siblings. Sitting alone and thinking or praying were few of the other things, which helped the sibling in coping during times of stres The study was exploratory in nature. Through these explorations, some of the things, which can be inferred, are that there are many adjustments that have to be made while living with a brother/sister with cerebral palsy. But these adjustments do not necessarily lead to negative results. This comes out clearly in the section when the siblings talk about what they learnt from their brother/sister with cerebral palsy. Through observing their brother/sister with cerebral palsy, they have learnt to be confident and assertive. They have learnt to be more accepting of themselves. Their learning includes the ability to deal with problems without losing heart. Living with a person with cerebral palsy needs certain adjustments, which are not easy to make. Therefore the families of children with cerebral palsy need the support and the understanding of the society, in which they live. Awareness about the problems faced by these families should help in making the society and the various societal institutions more accessible to them. This would go along way in helping the siblings to cope
URI: http://192.168.194.112/handle/1/4635
Appears in Collections:M.A.

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