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. Author manuscript; available in PMC: 2019 May 22.
Published in final edited form as: Int J Child Dev Ment Health. 2017 Feb 5;5(1):11–21.

Parents’ attitude towards children and adolescents with intellectual developmental disorder

Mythili Hazarika 1, Shyamanta Das 2, Sandamita Choudhury 3
PMCID: PMC6530459  NIHMSID: NIHMS1026725  PMID: 31131373

Abstract

The study attempted to explore the attitude of parents towards their mentally retarded children. The sample consisted of 66 parents of children with intellectual developmental disorder (IDD) receiving mental health services from two daycare centers. An attitude questionnaire was administered on the parents who were involved in the care and rehabilitation of the child. The questionnaire comprised of fifty statements of a Likert-type scale and it served as the measuring instrument. Questions were designed to provide information on parents’ behavior, perception, reaction, values, and feelings. The important themes that emerged out of the questionnaire were analyzed using descriptive statistics. The results indicated that the parents, though had love and acceptance towards their children, but were frustrated, disappointed, and highly overprotective. This was a significant deterrent factor in the child’s adaptive functioning and development of his/her independent living skills.

Keywords: Intellectual disability, Caregivers, Gender

Introduction

Every child is special to a parent. Some children have special needs and others do not, and this determines the parental care and treatment services in the developmental stages of life (Ravindranadan & Raju, 2007). No parent would like his or her child to have any deficits in intellectual, developmental, physical, or psychological domains. But, very often some children have a temporary or permanent disability or a disorder which may have a profound impact on the family (Kumar & Singh, 2012).

Intellectual disability (ID) is considered to be a bio-psycho-social problem. Genetic, biochemical, biological, social, psychological, and various interacting forces like attitude and family dynamics, peers and society in which the child lives, play an important role in the adaptive and normal functioning of a child. There are millions of intellectually challenged children in the world who have been considered to be dangerous, incurably insane, and incapable of learning even the simplest task.

According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), intellectual developmental disorder (IDD) “is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains” (American Psychiatric Association, 2013). The intellectual functioning of persons with IDD is below average and their intelligence quotient (IQ) is 70 or less (Sarason & Sarason, 2005). The origin of the disability is before one reaches the age of 18 years (Luckasson et.al, 2002).

Children and adults with IDD never gain respect from the society at large as they are not given full benefits, rights, and privileges, like other individuals with no deficits. Review suggests that prior to the development of institutional care for the retarded, they were treated with the most rudimentary manner focusing only on their physical needs and disregarding psychological, emotional, or social needs. Very often the parents and society have had a negative attitude towards the children with disabilities. Social marginalisation and community rejection are common and they are often demeaned and ridiculed.

The attitudes held by parents are important component of the “handicapping” environment (Nevid, Rathus, & Greene, 2000; Hahn, 1982; Yuker, 1988). As stress among parents rise due to the increased demands for energy, time, and financial resources, it may affect their treatment towards the child. Additionally, the social stigma and ridicule attached to any form of disability leads to social isolation. If negative emotions among parents and caregivers are high, it may lead to family disharmony which may have a negative impact in the development and rehabilitation of these children.

Bowlby (1988), the father of attachment theory, had rightly mentioned that the greatest loss and negative consequences of an intellectually challenged child is lack of adequate nurturing relationship with adult caregivers.

So, the way parents’ react to a child with special needs partly depends on how they perceive it and the practical implications the disability or illness has on them (Chaturvedi & Malhotra, 1984). This in turn determines their attitude towards the same and if disability is present, stress and negative emotions increase (McConachie, 1986).

Kagan and Havemann (1980) defined attitude as an organized and enduring set of beliefs and feelings which predisposes one to behave in a certain way. Hence, the emotional component within the attitude distinguishes it from beliefs. The attitude of the people towards these individuals are often accompanied by negative feelings of hostility, shame (Rangaswamy, 1989), denial, guilt, grief, projection of blame, withdrawal, rejection (Drew, Logan, & Hardman, 1984), as well as feelings of helplessness, inadequacy, anger, and shock while some others have disbelief, depression, and self-blame (Chandramuki, Shastry, & Vranda, 2012).

Findings from studies focusing on family dynamics have reported high levels of stress and negative emotions. Family crisis may result from the presence of special needs’ child. The health of the parents determines the family wellbeing; but “guilt, ambivalence, disappointment, frustration, anger, shame, and sorrow” are often exhibited by parents (Schild, 1971). Thus, the attitude of parents may cause hindrance in the process as well as outcome of adaptive functioning in the children with IDD because the environment in which a child is born and brought up has a huge impact on a child’s psychological and physical wellbeing.

The individuals with disabilities are often viewed as incapable of doing anything in life and take care of their basic needs, but a study by Hazarika et.al (2014) to assess the outcome of services of the daycare centers on learning skills of the children found that they can learn a great deal after training in various self-help and social skills. Hence, the individuals with intellectual disability are trainable and educable though severe to profound levels of disability need regular custodial services due to their very limited learning capacity. But, in India, disability is viewed in terms of a “tragedy” with a “better dead than disabled” approach and the disabled people are an isolated lot who are shunned from entertainment and from enjoying a healthy life (Girimaji & Srinath, 2010).

In India, prevalence of ID varies from 1/1000 to 32/1000 (Thengal, 2013).In India the majority of persons with IDD have traditionally been cared for by their families though there are institutionalized care centers run by non-governmental organizations (NGOs). The Acharya Ramamurthy Committee have reiterated the role of special schools to serve as resource centers for the assimilation and integration of these children into the normal schools, and thereby improve their level of education. In Assam, although integrated education facilities are present in few schools, they are not adequate. Hence, majority send the children with IDD to special schools and rehabilitation centers. Such two daycare centers were selected from greater Guwahati for this study population. Parents who were involved in the care and management of the child were the focus of the study. It was to explore the attitude of these parents who had accepted the status of their child as deficient and may have realized the need of special care and rehabilitation for the growth and adaptation of their child in the society.

The need to include the children with IDD in general schools though is highly felt, but the education scenario in this perspective is very grim and so, these children are not receiving adequate responses from their parents, family members, as well as from their teachers. In essence, research on IDD is almost negligible in Assam. Therefore, the purpose of this study was to explore the attitude of parents towards their children with IDD.

Materials and methods

This was a cross-sectional descriptive study carried out in two rehabilitation centers in Assam, India. Participants were selected through convenient sampling. Study criteria included: a) parents of children with IDD; b) parents involved in providing care to the intellectually disabled; c) able to read and write English, so that they can comprehend the self-administered scale; and d) those were willing to participate and had provided written consent. A sample of 66 was eligible to participate in the study. This study was conducted as part of a workshop arranged to provide psycho-education to the parents of the intellectually disabled. These set of parents had not participated earlier in any kind of psycho-education or workshop related to IDD.

Measures

1. Demographic data survey instrument

The demographic form consists of items to elicit information regarding age, gender, education, and presence of intellectually disabled at home.

2. Attitude scale of parents towards their mentally retarded children

The questionnaire comprised of fifty statements of a likert-type scale which served as the measuring instrument for this study. The researcher asked questions using a rating scale to obtain information that a yes/no answer would not divulge and it has been established that a likert type scale questionnaire provides questions which are standard and compared among individuals. Less articulate respondents are not considered as a disadvantage and the respondents report about sensitive issues when using such questions. Answers generated by these questions are found to be easier to code and analyze (Bailey, 1987; Behr, 1988; Neuman, 2000).

This questionnaire was developed using statements from the Parental Attitude Research Instrument – PARI (Schaefer & Bell, 1958), the Thurston Sentence Completion Test (Thurston, 1959), and Parekh (1988). Questions were designed to provide information on parent behavior, perceptions, reactions, values, feelings, etc. Respondents had to indicate to which degree they agree (or not) with each statement by encircling the number corresponding to one of five response categories varying from ‘strongly agree’ to ‘strongly disagree’. The questionnaire was used in a dissertation for the degree of Master of Arts (Clinical Psychology) (Govender, 2002) and is extensively used in various research work, and continues to be the best available instrument which is highly reliable and valid for obtaining information.

The scale taps five themes which are randomly spread across the table apart from the knowledge. The important themes assessed are Love and Acceptance, Embarrassment, Frustration, Disappointment, and Overprotection.

Procedure

Data was collected before the workshop started. On introduction, the first author explained briefly about aims and methods of the study to all the participants. Parents who were willing to participate were asked to complete the questionnaires. The time taken to complete the questionnaire was 45–60 min. The participants were assured that their answers would remain strictly confidential and that their anonymity would be protected. Subjects were informed that this data would not be released to other persons without their permission.

Ethical considerations

Permission was obtained from the administrators of the rehabilitation centers where the study was conducted. Participants were introduced to the aims and procedures of the study to decide if they would like to participate. After taking written consent from them the tool was administered. Participants were given freedom to withdraw from the study at any part of the procedure without attributing any reasons. Ethical clearance was not required as it was a questionnaire-based observational study with no intervention.

Statistical analysis

The data was analyzed, and results were presented in narratives and tables. The table with percentages was used to determine the distribution between genders. The data was analyzed in terms of percentage.

Results

Distribution of the participants and their children according to gender

The total number of children with IDD (IQ < 70) was 66 and out of this, 65% were male and 35% were females. Fifty eight percent were mothers and 42% were fathers among the caregivers who were involved in the treatment and rehabilitation services of the child (Table 1). There were a high proportion of female caregivers in this study.

Table 1:

Gender of children and caregivers

Male, n (%) Female, n (%)
Gender of the children 43 (65) 23 (35)
Gender of the caregivers 28 (42) 38 (58)
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Analyses of the themes of favorable and unfavorable attitudes

1. Love and Acceptance

The statements to elicit the theme of “love and acceptance” are the following:

  1. When I think of my mentally retarded child, I think how lucky I am; God gave him so much more than lots of kids have.

7. One of the bad things about raising mentally retarded children is that you are not free enough of the time to do just as you like

13. I have accepted the fact that my child is mentally retarded

14. I would love my child more if he/she were not mentally retarded

30. I would rather be caring for my mentally retarded child than doing some other kind of work.

35. In his /her way my mentally retarded child brings so much pleasure to our family as the other members.

44. It makes me feel good to know that I can take care of my mentally retarded child.

47. I don’t mind when people look at my mentally retarded child

The parents of the children with IDD had feelings of love and affection towards their child as 88% had accepted their child’s status, 90% agreed that they would rather care for their child than do some other kind of work,87% felt pleasure in having their child at home, 91% felt good to know that they could take care of their child by themselves and 63% parents felt lucky to have a child with IDD (items 1, 13,30,35,44) and were thankful to God for the same. Eighty percent denied that they would love their child more if he or she was not having IDD (Figure 1).

Fig. 1:

Fig. 1:

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Love and acceptance

2. Embarrassment

The statements to elicit the theme of “embarrassment” are the following:

18. I feel embarrassed to take my mentally retarded child with me when I attend functions

43. Sometimes I feel ashamed because of my mentally retarded child

50. I am not embarrassed when people question me about my mentally retarded child

In the theme of ‘embarrassment’ the findings denote that 73% did not feel embarrass when people questioned them about their child’s intellectual status, and very few percentage of population felt ashamed about their child’s status and to take them out with them to functions and other social occasions (Figure 4).

Fig. 4:

Fig. 4:

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Embarrassment

3. Frustration

The statements to elicit the theme of “frustration” are the following:

4. Mentally retarded children will get on any woman’s nerves if she had to be with them all day

6. Raising mentally retarded children is a nerve-wrecking job.

25. If my mentally retarded child were more pleasant to be with, it would be easier to care for him/her

Results showed that in the theme of ‘frustration’, 70% agreed that raising children with intellectual deficits was a nerve-wrecking job, while 52% agreed that these children would get on any woman’s nerves if she had to be with them all day (items 6,4). More than 75% reported (item 25) that if their child was more pleasant to be with, it would have been easier to care for him/ her (Fig 5).

Fig. 5:

Fig. 5:

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Frustration

4. Disappointment

The statements to elicit the theme of “disappointment” are the following:

12. I felt disappointed when I found out that my child is mentally retarded.

26. Thinking about my mentally retarded child’s future makes me sad.

46. I am disappointed that my mentally retarded child does not lead a normal life.

Results suggested that 68% felt disappointed when they found their child to be intellectually disabled, 62% felt disappointed that they cannot lead a normal life, and 76% felt sad thinking about their child’s future prospects (Fig 3).

Fig. 3:

Fig. 3:

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Disappointment

5. Overprotection

The statements to elicit the theme of “overprotection” are the following:

29. My mentally retarded child feels that I am the only one who understands him/her

32. I always watch to make sure that my mentally retarded child does not do physical harm to himself herself

33. My mentally retarded child would be in danger if he she got out of the house or yard.

34. When others are around my mentally retarded child I cannot relax, I am always on guard

38. I am very careful about asking my mentally retarded child to do things, which might be too hard for him/ her.

42. I feel that I must protect my mentally retarded child from the remarks of other children

49. My mentally retarded child’s needs come first

In the theme of ‘overprotection’, 88% reported that they always watch to make sure that their child would not do physical harm to himself/ herself. Seventy five per cent parents believed that their child would be in danger if he or she got out of the house or yard (item 33). Sixty three per cent parents reported that they could not relax and are always on guard when others are around their child (item 34). Eighty two percent of parents felt cautious about asking the child to do things, which might be too hard for him/ her (item 38). Sixty two per cent reported that they should protect the child from the remarks of other children and more than 85% (item 49) felt strongly that their child’s need comes first than anything else (Fig 2).

Fig. 2:

Fig. 2:

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Overprotection

Discussion

The findings of the present study showed a considerable amount of favorable attitude in parents towards their children with IDD. As in the themes of love and acceptance, a significant proportion reported to have accepted the child’s status, loved him or her, felt pleasure having him/ her at home to take care of, and was also thankful to God for the same which did not signify remorse or negativity towards them. Strong feeling of love and affection was also reported in another study done in upper Assam by Thengal (2013).

Though the findings in the theme of love and acceptance was strikingly positive, but interestingly it was frequently accompanied by feelings of frustration, disappointment, rejection with considerable amount of expressed emotions of over-protectiveness which is reported by other researchers (Thengal, 2013; Zuk, 1959; Worchel & Worchel, 1961; Ryckman & Henderson, 1965; Ramgopal & Rao, 1994). The underlying dynamics of these parents who felt frustrated and disappointed could be due to the stigma and rejection by the communities to which he or she belongs, as more than 60% reported that they were not relaxed when others were around their child and were cautious about other’s remarks towards their child and took personal responsibility to protect their children from the remarks of the society. Hence, it suggests that though Guwahati is an urban city, still parents believe their children would be discriminated in the society. Another way of understanding could be as reported by Zuk (1959) that the parents are caught between the strong feelings of love and hate for the child and the conflict between these opposing feelings may have resulted guilt in them which may have manifested in the form of frustration and disappointment.

The findings suggest overprotectiveness of extra love, caution, and care, that could be a compensatory behavior for the underlying rejection and guilt as reported by Tredgold and Soddy (1970), who mentioned guilt and rejection being internalized, while love and care being extended more. Kanner (1941) have also emphasized that rejecting attitudes may be manifested in the form of overt hostility, guilt, neglect, perfectionism, and compensatory behavior of overprotection. Our findings indicated that more than 80% parents were overprotective in terms of being watchful almost all the time, would get anxious to give them any work to do, and was cautious of them getting hurt by others; so, keeping the child’s need first of all other needs was their goal which was not a healthy parenting practice.

The study thus highlights the great extent of negative and unhealthy attitudes in the parents because they viewed their children differently and treated them by being overly cautious and by giving them more attention than required. Interestingly this vain attempt could in turn raise their level of frustration and disappointment which was also reported in the scale. It is also interesting to focus that the parents’ effort to be extra-careful could be detrimental for the growth and development of children with IDD, as they would not get any opportunities to learn on their own or to be independent in their living skills. However, this is a very significant finding among these parents who have been sending their children to the daycare centers because if this attitude of over-protectiveness does not alter than their children would remain to be handicapped all throughout and may not reach an adaptive level of functioning.

Strengths/weaknesses and future research

It is one of the first studies done in Assam and first in Guwahati, an urban city which had thrown light in the inclusion of parents in the treatment and care of the children with IDD focusing on the factors that would hinder the process of normal growth and development of these children.

But the present study had its own limitations, as the sample size was small and convenient so the findings cannot be generalized. Other related aspects like age, socioeconomic condition, educational attainment and family structure, were not considered in this study. However, there was a restricted exploration of underlying, issues and the respondents’ subjective experiences and interpretations were ignored. Further studies are required to confirm and elaborate findings of the present study. Such studies should include qualitative methods to gain access to respondents’ own understanding of their social behavior. This study has provided a basis for much needed similar research in other rural areas in Assam.

Conclusion

The parent who accepts their child’s status of intellectual deficits and takes the help of rehabilitation centers have unfavorable attitudes, false perceptions, feels stigmatized and discriminated, thereby leading to frustration and disappointment with compensatory over-protectiveness. Hence, the parent of these children could be included in the intervention strategies along with the children’s rehabilitation to ensure a comprehensive care towards these families with intellectually challenged children.

Acknowledgements

We acknowledge the administrators of day care centers, namely “Shishu-Sarothi” and “Ashadeep” for their cooperation, and Dr. Suresh Bada Math, Additional Professor of Psychiatry, National Institute of Mental Health and Neuro Sciences, Bangalore for his guidance.

Footnotes

Conflict of interest: None declared

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