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Table of Contents
ORIGINAL ARTICLE
Year : 2020  |  Volume : 17  |  Issue : 2  |  Page : 95-99

A Brief Report on the Sociodemographic Profile and Attitude of the Caregivers of Children with Intellectual Disability in Rehabilitation Settings


1 ESIC College of Nursing, M.S. Ramaiah Institute of Nursing Education and Research, Bengaluru, Karnataka, India
2 Department of Mental Health Nursing, M.S. Ramaiah Institute of Nursing Education and Research, Bengaluru, Karnataka, India

Date of Submission05-Nov-2020
Date of Decision23-Nov-2020
Date of Acceptance28-Dec-2020
Date of Web Publication08-Feb-2021

Correspondence Address:
Dr. M Vijayarani
ESIC College of Nursing, Indiranagar, Bengaluru - 560 008, Karnataka
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/iopn.iopn_49_20

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  Abstract 


Background: The critical factor for supporting children with intellectual disabilities is the awareness and constructive participation of support systems such as their families and carers. The present study attempts to identify the attitude of the caregivers toward the intellectually disabled children. The objective of the study was to evaluate the current level of caregivers' attitudes toward children with intellectual disabilities in selected institutions, Bangalore. Method: This study was based on descriptive research design. Three special schools located in Bangalore were selected. Convenience sampling was used to recruit 134 caregivers. It includes a demographic profile and attitude questionnaire for caregivers toward children with intellectual disability. Results: About 15.7% of caregivers had the most favorable attitude; half (51%) of them had a favorable attitude, and 33% had an unfavorable attitude toward children with intellectual disability. Conclusion: The findings of the present study showed that most caregivers had a favorable attitude, whereas one-third of the caregivers in the selected setting had an unfavorable attitude. This study shows that the majority of the children with intellectual disability were suffering from epilepsy and behavioral disorder. Therefore, it is important to take needed steps such as education and awareness to foster acceptance and care among caregivers.

Keywords: Attitude, caregivers, children with intellectual disability, rehabilitation


How to cite this article:
Vijayarani M, Balamurgan G. A Brief Report on the Sociodemographic Profile and Attitude of the Caregivers of Children with Intellectual Disability in Rehabilitation Settings. Indian J Psy Nsg 2020;17:95-9

How to cite this URL:
Vijayarani M, Balamurgan G. A Brief Report on the Sociodemographic Profile and Attitude of the Caregivers of Children with Intellectual Disability in Rehabilitation Settings. Indian J Psy Nsg [serial online] 2020 [cited 2021 Mar 7];17:95-9. Available from: https://www.ijpn.in/text.asp?2020/17/2/95/308833




  Introduction Top


The birth of a child with intellectual disability may have intense effects on the family.[1] This could cause disequilibrium with the life adjustment.[2] Research studies have identified certain negative attitudes developed by caregivers toward their children with intellectual disability.[3] Khatib et al., found in his study that 45% had negative feelings toward the children with intellectual disability.[4] Available literature in India shows that studies were conducted on parental attitudes toward the intellectually disabled children,[1],[3],[4],[5] family attitude,[6] attitude on special education,[4] attitude of caregivers toward the inclusive education,[4] attitude of teachers,[7] and attitude of mothers.[8] Vijayarani et al. found that in Bangalore, Karnataka, more than half of caregivers had a favorable attitude and only 8% had an unfavorable attitude; however, the findings were limited to one institution (n = 50).[9] Furthermore, few other Indian literature available had focused on inclusive education,[10] rights immunities and privileges for persons with intellectual disability[11] comparative study among parents of children with and without intellectual disability,[12] and special education;[4] however, the attitude of family caregivers is less explored. To some extent, the present study contributes to bridging this void. This study aims to assess the caregivers' attitudes toward children with intellectual disability in Bangalore, Karnataka State, India.


  Materials and Methods Top


Objective

The objective of the study was to evaluate the caregivers' attitude toward children with intellectual disabilities in selected institutions, Bangalore.

Research design

This study was based on descriptive research design.

Study setting

Three special schools located in Bangalore were selected.

Sample and sampling

To obtain a homogenous sample, it was decided to select the schools run by nongovernmental organizations. The sample size was estimated with a type I error of 5%, power of 95%, and effect size of 0.8. The calculated sample size was 84. However, it is decided to recruit 100 samples for the study. To achieve this required sample, 6 schools were approached for permission, whereas the researchers were permitted only in three schools. By using a convenience sampling method, all the caregivers (134), who were attending the parents' meeting in the selected three schools, were included for the study.

Tools

To assess the attitude, the “Attitude Questionnaire for family caregivers toward Mentally Challenged Children” of Vijayarani et al. was adopted for the present study.[9] This Scale was made of 30 items, divided into four dimensions. They were “caring, neglecting, accepting, and punishing.” Among these, items under “caring (item no: 1, 3, 7, 11, 13, 17, and 24)” and “acceptance (item no: 5, 9, 14, 16, 19, 20, 22, 26, 28, and 30)” were positively worded; and items under “punitive (item no: 8, 15, 18, 23, 25, 2,7 and 29)” and “neglect (item no: 2, 4, 6, 10, 12, and 21)” were negatively worded. Translation of the tool: The scale has been translated into local (Kannada) language. The language experts made the forward and backward translations. Thirteen experts from different fields such as psychiatric nursing (6), child psychiatry (2), psychiatric social work (2), clinical psychology (2), and one special school educator established the content validity of the tool. Experts felt that the tool was appropriate, relevant, and comprehensive for achieving the study objective and is simple and comprehensible for the study subject level. Tool reliability: Cronbach alpha method has estimated the reliability. It was 0.99 for the English attitude scale and 0.9731 for Kannada.

Scoring

Five-point rating scale was made as strongly agree (5), agree (4), undecided (3), disagree (2) and strongly disagree (1). For the Likert scale, the maximum score was 5 and the minimum was 1. There were 12 negatively worded items and 18 positively worded items. Scores were reversed for the negative items. Interpretation: The total score ranged from 30 to 150. The interpretation is higher the score, higher the positive attitude. Less than 50% (<75) of the scores suggested an unfavorable attitude, 50%–74% (75–112) indicated a favorable attitude, and scores above 75% (>113) indicated the most favorable attitude.

Method of data collection

Special schools registered under Karnataka Parents Association for Mentally Retarded Citizens were considered for the study. To obtain a homogeneous sample, it was decided to select the schools run by nongovernmental organizations. The sample size was estimated with a type I error of 5%, power of 95%, and effect size of 0.8. The calculated sample size was 84. However, it is decided to recruit 100 samples for the study. To achieve this required sample, 6 schools were approached for permission, whereas the researchers were permitted only in three schools. By using a convenience sampling method, all the caregivers (134) in the selected three schools were included in the study.

After obtaining approval from the Institute Ethical Committee, the authorities of the special schools were approached for permission. The study was conducted in three special schools after receiving approval. During the day of the parents meeting, the researcher met all the caregivers, duly explained the study procedures. Caregivers who were willing to participate in the study were approached and informed consent was obtained. The confidentiality and anonymity of the data collected from the caregivers were maintained and at the end of the data collection, the queries and concerns of the caregivers regarding the care of intellectually disabled children were addressed by the researchers. The data were collected in a period of 4 months from the three special schools on different days. The parents were met in groups during the parents' day meeting. Forty-four caregivers in school 1, 51 caregivers in school 2, and 39 caregivers in school 3 were included in the data collection. Due to time constraints and urgent work, a total of 18 caregivers refused to participate in the study. All the willing caregivers were made in two language-based groups (English and Kannada) and the data were gathered. The data collection included a total of two researchers. One of the researchers is bilingual. On an average, the family caregivers took 25–35 min to complete the self-reported attitude scale. After the data collection, some of the caregivers expressed that they have difficulty in home care management. The doubts of the caregivers were clarified by the researchers. The issues and concerns were addressed by the researchers. Furthermore, manuals on intellectual disabilities were recommended for the caregivers. Specific information requested by the caregivers was also given to them. The data were analyzed by applying appropriate descriptive and inferential statistical procedures. SPSS 20.0 version (Armonk, NY: IBM Corp) was used to analyze the data.


  Results and Discussion Top


Caregiver' characteristics

Majority of the caregivers were in the age group of 33–38 years and 39–44 years (with a mean of 39.62 years with standard deviation of 5.315). Consistent findings were got by Dimitrova-Radojichich and Chichevska-Jovanova[10] and Awadalla et al.[13] and Vijayarani et al.[9] Contradictory results obtained by Chirwa,[14] Jacob[15] and Sikandar et al.[16]

Majority of the caregivers (65.7%) who participated in the study were females, whereas a less percentage of the caregivers (28%) were males.

Vijayarani et al.[9] Thengal[3] and Dimitrova-Radojichich and Chichevska-Jovanova[10] reported consistent study finding. As a tradition in India, a mother takes up the major role of caring family members including children with intellectual disability. Hence, the female participants outnumbered the males in the current study.

Among the sample, 3.7% of the caregivers studied up to higher secondary and SSLC, 23% of them studied up to PUC, 13.4% of them studied up to diploma, 59.4% of them were studied up to graduation and above. Majority of the caregivers were graduates (46.3%). The study finding is consistent with studies conducted by Kuppusamy et al.[17] and Dimitrova-Radojichich and Chichevska-Jovanova.[10] At the same time, contrary findings also were reported by Jacob,[15] Gupta et al. (2010),[2] Sikandar et al.,[16] and Singh et al.[18] This shows that as education increases the awareness among caregivers motivate them to admit their children with intellectual disability to the special schools.

Family characteristics

A majority of the caregivers (85.8%) were Hindus, 7.5% of the caregivers were Muslims, and only 6.7% were Christians. Similar study finding was reported by Gupta et al. (2010) wherein the three-fourth were Hindus.[19] Consistent results were given by Sikandar et al. where all the caregivers were Hindu. This proportion is in par with the Indian census in terms of religion.[16]

Among the sample, 44.8% of the caregivers had a history of consanguineous marriage. About 10.4% of the caregivers had a family history of intellectual disability. This study finding is contradictory to the finding of Jacob in Bangalore, Karnataka, where one-fourth of the mothers of the children with intellectual disability were from the nonconsanguineous type of marriage.[10] Comparing to the national rate (11.9%), Karnataka has much higher percentage (29.7%) consanguineous marriage.[20] This needs to be addressed through the education of the public by sensitizing them with the issues of genetic, hereditary, and congenital diseases.

More than half (64.9%) of the caregivers were living in a joint family. This study finding is supported by Gupta et al. (2010).[21] This shows the family cohesiveness, family attachment, and their support in taking care of children with intellectual disability.

Among the sample, 10.4% of the caregivers had a family history of intellectual disability. This study finding is consistent with the finding of Sikandar et al. wherein 18% of the caregivers had a family history of intellectual disability[16] and with Singh et al. wherein 13.80% of the caregivers had a history of intellectual disability.[18] This shows that there is a strong genetic influence in the transmission of intellectual disability to the offspring.

Children's characteristics

Nearly half (53%) of the children had moderate mental retardation. This study finding is similar to a study conducted by Kuppusamy et al. where about half (48.5%) of the clients had a mild degree of retardation.[17] Similar findings were reported by Lakhan where 31 children (29.8%) had mild mental retardation and 46 (44.2%) had moderate mental retardation.[19] The contradictory study was reported by Sahay et al. where majority participated in the study had mild mental retardation.[22] Since the custodial care is required for the children with severe and profound mental retardation, as an admission policy, these special schools admit the children with intellectual disability who are educable and trainable.

[Table 1] shows that the majority of the children with intellectual disability were suffering from epilepsy and behavioral disorder. This study finding is consistent with a study conducted by Kuppusamy et al. where epilepsy is identified as the associated problem next to cerebral palsy.[17] Lin et al. revealed that health issues for people with intellectual disability include respiratory problems, gastrointestinal disorders, challenging behavioral problems, and neurological conditions.[23] The presence of an additional disability along with intellectual disability, such as mental illness, cerebral palsy, epilepsy, or Down syndrome was present in 39 children (37.5%) which was also reported consistently with Lakhan.[19] A similar finding was reported by Ganesh et al. in which the type of disability identified was intellectual disability, hearing, speech, locomotors, and visual disability.[24] A consistent finding was also reported by Raina et al. in which 69% had motor, hearing, seizure, and vision disorders.[25] Furthermore, Singh et al. reported that a majority of (90.80%) of the caregivers reported comorbid conditions in their children.[18]
Table 1: Frequency and percentage of comorbidity (n=134)

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The study finding is contrary to a study conducted by Kumar et al. where all the disabled subjects were previously diagnosed with one or the other mental ailment, namely neurosis, schizophrenia, affective disorders, intellectual disability, and alcohol addiction.[26] In addition, the majority of them had joint pain and backache (35, 58.3%), hypertension in 18 (30%), COPD in 14 (15%), diabetes mellitus with fits in 10 (10%) and heart problems in 3 (5%). The present study revealed that most of the respondents' children do not have the same problem. The children with intellectual disabilities possessed either single or multiple problems associated with comorbid conditions. In addition to the intellectual disability problems, the underlying comorbidities may also create a unfavorable attitude toward their intellectually disabled children.

Level of attitude of caregivers on the care of children with intellectual disability

The study finding is supported by Vijayarani et al.,[9] Dimitrova-Radojichich and Chichevska-Jovanova,[10] Thengal[3] Revathi,[7] Mevada et al.,[27] and Govender.[8] While the majority of caregivers have the most favorable and favorable attitude toward their children with intellectual disability, approximately one-third of the population needs help because they have an unfavorable attitude [Table 2].
Table 2: Frequency and percentage of quality of attitude (n=134)

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[Table 3] describes the different domains of the attitude scale. The mean percentage of neglect domain was higher (64.06%) followed by punitive (59.25%), acceptance (48.76%), and caring (47.85%). The higher mean percentage score in neglect and punitive domain reflects that the caregivers' attitude is more toward negative domain rather positive; this could affect the caregivers' readiness to care for their children with intellectual disability.
Table 3: Domain-wise mean percentage and standard deviation of attitude scores of the caregivers

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There is a varying attitude among the caregivers among the three special schools. This could be due to various reasons such as the degree of disability, age of the caregivers, duration of care, and psychological distress. This study highlights that half of the parents and family members of children with intellectual disability in all three schools expressed a positive attitude toward the children with intellectual disability. The study reveals that one-third of the sample had an unfavorable attitude toward the care of children with intellectual disability. Although the study highlighted the favorable and most favorable attitude among the caregivers, the domain-wise analysis indicated that the mean percentage score was higher in the neglect domain followed by punitive, acceptance, and caring. Essential support for a child with intellectual disability comes from the family; thus, the attitude of the caregivers is very essential. The parental attitude is very imperative for the life of the children with intellectual disability; hence, the required measures such as education of the caregivers[5] and creation of awareness among the caregivers need to be undertaken to promote the unfavorable attitude toward the favorable attitude. Families with children with intellectual disabilities should also have the awareness, expertise, and resources available to meet and advocate for their children's needs and rights. Parents should be informed about their health condition, the modalities of treatment, and their rights.

Limitation and recommendation

Since the present study was conducted only among the caregivers of children with intellectual disability at selected special schools, it may not reflect the attitude of caregivers whose children are not admitted to the special schools.

Further, this study recommends to find out the quality of the attitude among the caregivers whose children are not admitted to the special schools at community level.


  Conclusion Top


The current study suggests that here is a varying attitude among the caregivers among the three special schools. The study reveals that one-third of the sample had an unfavorable attitude toward the care of children with intellectual disability. Thus, the study concludes that future research may be taken to intervene in the family to change the favorable and unfavorable attitude to most favorable attitude. In addition, research study suggests that the caregiver's education programs and community education programs would positively influence the caregiver's attitude. Caregivers of children with intellectual disability require help to develop a more favorable attitude toward the children with intellectual disability.

Delimitations

The study is delimited to the caregivers who were attended the parents' day meeting.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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