International Journal of Mental Health & PsychiatryISSN: 2471-4372

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Short Communication, Int J Ment Health Psychiatry Vol: 2 Issue: 4

Lived-in Experience of Mothers with Mentally Retarded Children in Selected Schools, Bangalore: A Phenomenological Approach

Alisha Rijal*
NPI, Bharatpur, Chitwan, Nepal
Corresponding author : Alisha Rijal
MSc (N), MA, RN, BSc (N), Lecturer, NPI,Bharatpur, Chitwan, Nepal
Tel: 9855046240,9802524284
E-mail: [email protected]
Received: July 04, 2016 Accepted: September 22, 2016 Published: September 27, 2016
Citation: Rijal A (2016) Lived-in Experience of Mothers with Mentally Retarded Children in Selected Schools, Bangalore: A Phenomenological Approach. Int J Ment Health Psychiatry 2:4. doi:10.4172/2471-4372.1000135

Abstract

A qualitative design was used to explore and describe the experiences of caring for a mentally retarded child at home as lived by their mothers in Bangalore. Phenomenological interviews were conducted with a purposefully selected sample of fifteen mothers parenting a child with MR who attended a Special School were interviewed. The lived experiences of mothers were analyzed thematically by using Colazzi’s analysis. Six major themes were found in the data. The subthemes identified were: Before: Denial and difficult to accept child condition, After: Acceptance about child condition, Present: Fear about future, Life change: Vague physical symptoms, Life change: Change in daily activities, Husband relation: Supportive, In-laws relation: Neglected support, Normal child relation: Accepted and supportive, Societal relation: Full of stigma and discrimination, Confined role in society: Avoiding societal circumstances, Financial difficulties: Increase expenses, Extra works: To manage financial difficulties, Reaction on expenses on my child: Negative and discouraging, Spiritual belief Change: Change in belief towards god, Spiritual relation: High intensified belief towards god, Alternative methods to satisfy spiritual distress. The present study attempted to explore the lived-in experience of mothers with mentally retarded children and found that various dimension of mothers were affected on caring the child.

Keywords: Lived-in experienced; Mothers; Mentally retarded children; Special schools

Keywords

Lived-in experienced; Mothers; Mentally retarded children; Special schools

Introduction

The prevalence mental retardation in India was estimated 213.6 in 1000 population by Lal and Sethi [1]. Having a mentally retarded child is an emotional issue and one which can cause acute upset and anxiety for parents, even several years after discovering that the child is retarded [2]. Mental retardation makes a person incapable of living an independent life. In India, family bears the main burden of caring for such persons unlike in the developed countries. Family members, particularly parents, are more affected by the conditions [3]. The emotional and social stress that these parents undergo have been described by various investigators in the East and West [4]. On the other hand, few studies have shown that stress is not an inevitable consequence in these parents [5]. Parents may also have post practical,financial, emotional and social problems in looking after the mentally handicapped child [6]. Mothers of mentally retarded children were found to be more depressive symptoms than fathers [7]. A study conducted by Ntombela among mothers of mentally retardation showed that apart from social and emotional problems, mothers suffer actual physical stress because of the higher mobility of the handicapped child [8]. The mothers of mentally retarded children are not hopeful about education, future of the children, home management and they also feel more hostile towards their children [9].
Objectives of the study
• To explore the lived-in experiences of mothers with mentally retarded children.
• To extrapolate the various dimensions of lived-in experience mothers with mentally retarded children.

Research Methodology

The phenomenological research design was adopted. It was conducted in the Nachiketa Manovikasa Kendra Trust, Vijayanagar, Bangalore. The population includes all the mothers of mentally retarded children’s in same setting. All mothers of mentally retarded children whose child was admitted in the special school and who were willing to participate in the study were taken as sample by using nonprobability purposive sampling technique and sample size was 15. The data were collected by using two phases as:
Phase I
The investigator made the mothers of mentally retarded children comfortable and maintained good rapport with them. Then, the investigator asked questions on their experience regarding lived-in experience, until the saturation of data was achieved. The statements expressed by mothers were recorded in a mobile recorder. The investigator had nearly spent 32 sitting with the participants for the data collection. The time spends for each interview was approximately 45-60 minutes.
Phase II
The investigator converted the recorded information to verbatim in participants’ language and then translated on investigator language on next day of the data collection. The verbatim was
analyzed thematically by using Colazzi’s analysis.
Modified colazzi’s analysis framework
• All interviews was transcribed into verbatim and read in order to get an understanding of the verbatim.
• Significant selected phrases pertaining to the lived-in experiences of mothers with mentally retarded was extracted.
• Meaning was formulated from these significant statements
• Significant statements were organized into cluster of themes.
• The themes were used to provide a full description of the experiences.

Results and Discussion

Theme 1: Lived time
It is significant that in all transcribed interviews, participants verbalized their feelings of process of acceptance mentally retarded child.
Subtheme 1: Before: Denial and difficult to accept child condition
These feelings were universal to mothers during the early stages when the retarded children were still young. Some were confuse on not knowing the meaning of normal and abnormal.
“I was not aware about special kids. I was innocent and didn’t know what mental retardation is. When I heard about it, I was crying like anything – day and night.”
Subtheme 2 After: Acceptance about child condition
After few years of caring participated accepted their child and were happy with them. Some stated that whatever the child condition was, it was their responsibilities.
“I felt he is my responsibilities”
“If we beat or throw our child is ours. We have to take care”.
Subtheme 3 Present: Fear about future
Participants expressed anxious about future of their child. Almost all were always worried about their child future.
“Sometimes I get worried thinking about his future”.
They felt without them, their child survival would be difficult or impossible. And they are not satisfied if other people care their child also.
“I did not allow others to take care of my child”.
“They won’t take care of my child as I do”.
Theme 2: Lived body
Participants’ life changed after the birth of mentally retarded child. They had to take care of child as small baby despite the growing age of child. Being a housewife and mother of mentally retarded and normal children, it was difficult for them. Most of them expressed altered in normal pattern of living.
Subtheme 1 Life change: Vague physical symptoms
Participants expressed due to altered living pattern, they were living with vague physical problems. The timing of their child was different than normal child, so they had to adjust with them. Though they expressed many problems they were able to adjust with the problems.
“I used to get worried many times thinking about it throughout the day and because of that I used to have irregular periods, sleepless night and would be restless many times. Often I don’t have time for myself and would eat only when I get time. My sleep was not normal for two years. I am currently under treatment for hypertension and doctor said that there is hormonal imbalance in me. I also have severe hair fall.”
Subtheme 2 Life change: Change in daily activities
This subtheme was predominately in all the participants. They stated that there was change in daily activities than expected. They had to anticipate their child’s need and perform their daily activities on that basis. Some stated that they depend upon others to complete their daily activities.
“I used to tell others to get grocery for me as I could not leave my child and go for shopping.”
Some explain the way they perform their daily activities.
“It was too difficult for me to manage daily works and caring my child. When he was small I used to carry him always on my back and almost all time he used to sit in my lap. So, I used to complete my daily activities with the help of others. I used to complete my works after he leaves for school. When I was not able to do my works, my husband used to help me in completing my works”
Theme 3: Lived relationship
This theme was highlighted as all the mothers lived in a family. Their life was affected by then relationship status and the help from relatives. For any mothers, most important relation apart from children are husband, in laws so these relations reaction were stated as various subthemes.
Subtheme 1 Husband relation: Supportive
Almost all the participants were living with their husbands expect one participant. Few expressed that their husband didn’t helped them in their daily activities but most of their husband were supportive.
“My husband would help me and take care of our son whenever he is at home or free. But nowadays he is quite busy.”
“My husband used to advise me not to think much about these things because of fear of getting blood pressure and diabetics.”
Subtheme 2 In-laws relation: Neglected support
In Indian society, though daughter gets married and goes to their husband house, still they are not supported and cared as needed. Some of Participants’ in laws didn’t support to do daily activities not also in caring their child. Some stated that there in laws would visit them but don’t help them in their works but they wanted their daughter in law to care them.
“My mother in law would visit us when she had problem. She never bothers about our problem.”
Some stated that mother in law used to blame their daughter in law for delivering that kind of child.
“She would comment by saying that in our family no one was like him, how our grandchild became like that, and she used to blame me.”
Subtheme 3 Normal child relation: Accepted and supportive
This subtheme emerged as all the participants had 2 or 3 children apart from mentally retarded child. They all expressed that their normal child accepted their mentally retarded child.
“My elder daughter takes care of her brother, if I am sick or both of us are sick.”
“My other two children will behave normally with him. Both take care of him.”
Subtheme 4 Societal relation: Full of stigma and discrimination
In this theme, a strong trend emerged that there were many misconceptions about the cause of mental retardation, mainly due to ignorance. Most participants’ society regards it as difficult to take care of mentally retarded child, like different people who doesn’t know anything.
“Neighbor said ‘he look like alien from different country. He looks like animal, why he becomes like that?’ They told “khane mein kuch milake do usko aur tum ko chaen milega (mix something with the food and let your child have it, so that it will be a kind of relief to you and your child) which make my son feel like a comedy wala (type) piece.”
Subtheme 5 Confined role in society: Avoiding societal circumstances
Participants were solely taking care of their child. Three of them were working women, still all the responsibilities were their headache. Performing duty of housewife and mother of mentally retarded child, they were confined within their house. Some state the reason of avoiding societal circumstances as the reaction, behavior of people towards mother and child.
“I stop to go anywhere. They didn’t tell me, nobody told me. I won’t feel comfortable as she is grown up. She won’t interact understand what I am doing.”
Some expressed that the repeated question people ask to mother was the reason behind avoiding societal circumstances.
“In past days people used to ask repeatedly ask ‘what happen to the child”
Some explain the reason of not joining social gathering was the behavior of the mentally retarded child.
“I was afraid to take him to any social gathering as he urinates anywhere, break the things. I felt bad on not taking him to social gathering. I had to look after him so I didn’t go too.”
Some felt that it was better to avoid societal circumstance as they could not reply back the comment people pass on them.
“I never got chance to go out in social functions as I had to take care of my child. I stay at home as my child is like this. Whenever I take my son with me, people commented sarcastically. They said that my son was not normal, but I never reply.”
Theme 4: Lived financial
This theme emerged almost exclusively in the initial phases of seven interviews transcripts. Most of the participants stated financial problems as major problems.
Subtheme 1 Financial difficulties: Increase expenses
As the expenses done was more on mentally retarded child than normal child. Most of them were not well of. Some of them were poor and few were below poverty line.
“One physiotherapist used to visit home to give physiotherapy to the child; he takes 5oo per visit, as we are under financial constraints it’s not possible to get physiotherapy at home done at home. We came here for physiotherapy I don’t feel bad to say about all there.”
Subtheme 2 Extra works: To manage financial difficulties
This theme was highlighted as some participants were bound to do extra work to meet the expenses the mentally retarded child.
“I was housewife till I got here and am very ambitious. I want to learn English, dance and go out. Like that dream I had. I used to learn dance time to time. Suddenly it all stopped. I have stop. My career stopped. Then after joining the course I started working as special educator.”
Subtheme 3 Reaction on expenses on my child: Negative and discouraging
The theme of negative reaction on expenses done on mentally retarded child by in-laws and relatives appeared significantly in the data and interestingly there was no one mention of an accepting or supportive. The participants either mentioned rejection by in-laws or did not refer to them at all.
“My husband’s grandmother objected whenever we spend money on him.”
Theme 5: Lived spiritual
In south India, especially in Bangalore, people believed in god so much that they related everything with god like blessing of god, cruse of god, sin past life. For the treatment of these kinds of thought they again depend upon god like worshipping much more and donations in name of god. Three subthemes emerged which described the spiritual aspects of participants.
Subtheme 1 Spiritual belief Change: Change in belief towards god
Participants expressed that after giving the birth of mentally retarded child, their belief has changed. Some state that they believed in god but they don’t follow all the rituals needed to follow. Some complained that there was no use to worship.
“Belief is there. But that belief has change in some other manner. Doing puja and all we have stopped. Namaste I do. It’s in my heart. I won’t do how normal people do puja. Whatever I can I do…as I need to take care of my child. In this god won’t be angry with me as god knows.”
“We prayed to god by giving so much offering still our daughter was not normal. So I don’t believe in god like before.”
Subtheme 2 Spiritual relation: High intensified belief towards god
Few participants believed towards god were increased as after performing some religious ritual, they saw good changes in their mentally retarded child. It is well said that if good results is seen after following some actions then it is considered as good omen. Some believed that it was cruse of god they god childlike that so they increased their prayer.
“Once there was a satyanarayan puja in my sister’s place after that puja there was small changes in my son’s behavior because of these changes we do this puja every year. If good things happen when you do some puja then you follow that puja always its like that.”
Subtheme 3: Alternative methods to satisfy spiritual distress
In Hindu or Muslim religion, people donate in name of god which is considered as good omen. Most of the participants donated for sake of child’s health. Some believed that donation has lead too improvement of child’s health.
“I donated 7 blankets, one goat etc. in name of god. I did everything that people told me to do for my child’s sake. After doing puja and donation my child has improved a lot so I believe in god.”

Conclusion

The findings of the study showed that the initial caring for a mentally retarded child at home is a strain on the family, especially the mother. The participants’ reported that the birth of the child and subsequent diagnosis of mental retardation were met with shock. After few years of caring the child, participants were able to accept the child and managed their daily activities. The in-law relatives of all participants did not support the mothers and their children. Some mothers enjoyed the support of their own relatives (own mother). It stated that the financial constraints and spiritual belief as the major aspect in caring the mentally retarded child.

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