Sunitha V., Murthy Y.V. Siva2

A study of the disability impact among parents of mentally challenged children

 

Sunitha V., Murthy Y.V. Siva2

 

Dr. V. Sunitha, Professor of Pediatrics, Dr. Y. V. Siva Sankara Murty, Professor of Pediatrics; both authors are affiliated with Maharajah’s Institute of Medical Sciences, Vizianagaram, Andhra Pradesh.

 

Corresponding Author: Dr. Y. V. Siva Sankara Murty, Professor of Pediatrics, Maharajah’s Institute of Medical Sciences, Vizianagaram, Andhra Pradesh. E-mail: yvssmurty@hotmail.com


Abstract

Back ground: The child with mental retardation has special needs in addition to the regular needs of all children, and parents can find themselves over whelmed by various medical, care giving, financial and educational responsibilities. Government of India, “The National Policy on Mental Handicap”, has emphasized the importance of home-based care with parents as partners in the care process. Aim: To understand the positive and negative effects on parents of Mentally Retarded children by using National Institute for the Mentally Handicapped Disability Impact Scale (NIMH-DIS). Material and methods:Two intelligence tests [Vineland Social Maturity Scale (VSMS) and Developmental Screening Test (DST)] have been selected.Study sample is selected by purposive sampling method and categorized into three groups. Results: Parents of Mentally retarded children are impacted more by lifting & carrying the child (percentage of obtained score = 41.7), toileting (percentage ofobtained score = 40.6) and bathing (percentage of obtained score = 40). Maximum negative impact is on physical care (percentage of NIMH-DIS score = 35.5), followed by financial (percentage of NIMH-DIS score = 33.9) and loss of support (percentage of NIMH-DIS score = 33). Conclusion: It is not necessary for every parent having a Mental Retardation child to have negative impact but in some this can bring a positive impact, like acceptance of the situation realistically and standing right behind the Mental Retardation child to provide support.

Key words: Mental Retardation, (NIMH-DIS), SDSSQ and Intelligent Quotients.


Manuscript received: 10th September 2018 Reviewed: 20th September 2018
Author Corrected: 28th September 2018 Accepted for Publication: 3rd October 2018

Introduction

The birth of a baby is singularly, the most important joyous occasion in the life of any parent. Many parents hold out a lot of hopes for the future of their children, but when faced with the scenario of a child with special needs or intellectual handicap, they go through a whole lot of emotions including disappointment, resentment, a sense of guilt and a fear for the future of the child. Raising such a child requires emotional strength and flexibility. The child with mental retardation has special needs in addition to the regular needs of all children, and parents can find themselves over whelmed by various medical, care giving, financial and educational responsibilities. It does not imply that birth of a mentally retarded child has a negative impact on all parents as in some it has been observed to have a positive influence on their personality, bringing out a hitherto hidden mental strength in rising to the occasion and forming a firm support base for their child.This adaptation mechanism on behalf of the parents is inturn dependent on several personal and social factors including the psychological makeup of the parents, their education, attitudes, religious beliefs, social support system and monetary aspects.

American Association of Mental Deficiency (ASMD), has defined mental retardation as a “significantly sub average general intellectual functioning, resulting or associated with concurrent impairment in adaptive behavior and ismanifested during the developmental period”[1]. In Indian scenario, nearly 2 % of the population is constituted by persons with mental retardation [2], and its prevalence varies from 0.22-32.7 per thousand populations [2,3].

The present study was undertaken with a view to understand all the factors that have a positive or negative impact on parents of mentally retarded children so that the same can be applied to bring about a behavior modification and promote better coping strategies among parents with stress.

Material

Source of data- All the mentally retarded children between the age groups of 5-15 years, coming to the O.P.D and diagnosed using the ICD-10 criteria, with their IQ level less than 70, as assessed with the help of clinical psychologist using the intelligence tests [Vineland Social Maturity Scale (VSMS) and Developmental Screening Test (DST)] were selected. Both the parents of such children, were included in the study after obtaining a written consent from them. Information is gathered about these children and their parents on a self-designed semi-structuredquestionnaire.

Methods

Study design:Single stage cross sectional study.

Study setting: PediatricOutpatient department at Maharajah’s Institute of Medical Sciences, Vizianagaram

Study population: Study sample was selected by purposive sampling method and categorized into three groups (Mild, Moderate and Severe), based on the children’s Intelligent Quotient levels.

1. Mild: contains both parents (both mother and father) of 30 mild mentally retardedchildren.

2. Moderate: contains both parents (both mother and father) of 30 moderately mentally retardedchildren.

3. Severe: It contains both parents (both mother and father) of 30 severe to profound mentally retardedchildren.

The total study sample size is 90 and study period is 12 months

Inclusion criteria

·   Parents of children aged 5-15years.

·   Parents of children with IQ below70.

·   Children having both the parents aretaken.

·   Parents who gave their consent forstudy.

Exclusion criteria

·   Children having severe/chronic physical illness.

·   Parents suffering any physical or mentalillness and single parents.

·   Patients who refuse to giveconsent.

Ethical considerations: Written informed consent istaken from parents of Mental Retardation children and Confidentiality is maintained. All the Subjects retained the right to withdraw consent at anystage of this study.
Sampling technique: Individuals who fulfill the inclusion and exclusion criteria are selected by purposive sampling method and the data pertaining to their socio-demographic details and clinical variables is collected using a self designed semi-structured questionnaire. A written informed consent is taken for participation after explaining the purpose and design of the study. Prior to consent, the participants are informed that refusal to participate will not affect the course of counseling or further management.

Study tools: Study tools included self-designed semi-structured questionnaire and National Institute for the Mentally Handicapped Disability Impact Scale. The data pertaining to their sociodemographic details and clinical variables was collected using the self designed semi-structured questionnaire and was analyzed.

Results

Results have been discussed under the following sub-sections:

A.   Socio-demographic profiles ofparents

B.   Impact of mental retardation on parents of MRchildren

C.   Impact of mental retardation on parents of MR children - based on parent’s gender

D.   Impact of mental retardation on parents of MR children - based on severity of mental retardation

A.   Socio-demographic profiles of parents

Major variables studied here were parent’s age, sex, type of family, education, income, religion and occupation of parents. In the present study, 65.6% of parents belongedto rural areas.Majority of the parents (81%) belonged to nuclear type of family structure

Table 1: Socio-demographic profiles

Self-designed semi-structured questionnaire

Number of parents

%

N

Fathers occupation

Unemployed / house Wife

3

3.3

 

 

 

90

Formers / Self-employed

54

60.0

Employed in some Firm

33

36.7

Mothers occupation

Unemployed / house Wife

69

76.7

 

 

 

90

Formers / Self-employed

18

20.0

Employed in some Firm

3

3.3

Parents income

less than 10000

35

19.4

 

 

180

10000-19999

31

17.2

20000-29999

86

47.8

30000 or above

28

15.6

Infections during

Pregnancy

Absent

87

96.7

90

Present

3

3.3

Attempt to induce

Abortion

Absent

79

87.8

90

Present

11

12.2

History of repetitive

Abortion

Absent

80

88.9

90

Present

10

11.1

Fathers age at child birth

Below 20 years

3

3.3

 

90

21-35 years

70

77.8

Above 35 years

17

18.9

Mothers age at child birth

Below 20 years

20

22.2

 

90

21-35 years

65

72.2

Above 35 years

5

5.6

Nature of delivery

Natural

71

78.9

 

90

Cesarean

17

18.9

Forceps

2

2.2

Complications during

Birth

Absent

28

31.1

90

Present

62

68.9

Complications after birth

Present

14

15.6

90

Absent

76

84.4

MR diagnosis age

Below 5 years

102

56.7

 

180

5-10 years

48

26.7

10-15 years

30

16.7

MR child sex

Male

119

66.1

180

Female

61

33.9

MR child birth order

First

77

42.8

 

180

Between

63

35.0

Last

40

22.2

MR child education

Not going to school

81

45.0

 

 

180

Preprimary

58

32.2

Primary

32

17.8

Higher than primary

9

5.0

Table 1: Self-designed semi-structured questionnaire, information was collected regarding father’s and mother’s occupation along with parentsincome and their ages at the time of child birth. A past history of abortions, infections during pregnancy and mode of delivery were also documented. Most of the disable children are male 66.1% (119) diagnosed below 5 yrs 56.7% (102) with 1st order 42.8% (77), not going to school 45.0%(81).

B.      INFLUENCE OF MENTAL RETARDATION ON PARENTS OF MENTALLY RETARDED CHILDREN

NIMH-DIS had been administrated, results of which are as follows:

Table-2: Shows the scoring percentages of different variables in physical care domain

 

Variable in physical care domain

Number of parents

Smx

Sobt

%

No

difficulty

Some

difficulty

Lot of

difficulty

Bathing

78

60

42

360

144

40.0

Feeding

83

65

32

360

129

35.8

Dressing

86

56

38

360

132

36.7

Toileting

80

54

46

360

146

40.6

Brushing

95

67

18

360

103

28.6

Grooming

101

67

12

360

91

25.3

Lifting & carrying the child

82

46

52

360

150

41.7

Medicating

86

60

34

360

128

35.6

Total impact

 

 

 

2880.0

1023.0

35.5

Table 2: Shows the scoring percentages of different variables in physical care domain. Parents of Mentally retarded children are impacted more by lifting & carrying the child (percentage of obtained score = 41.7), toileting (percentage ofobtained score = 40.6) and bathing (percentage of obtained score = 40). Overall percentage of scoring for physical care domain is 35.5.

C. Impact of mental retardation on parents of MR children - based on parent’s gender

Impact of MR on fathers and mothers are compared using NIMH-DIS, and the hypothetical z-test has been employed for comparing the scoring proportions. Results of which are reported in Table 3.

Table 3: Impact of MR on fathers and mothers are compared using NIMH-DIS

Domain

Gender

Smax

Sobt

%

Z

p

Physical care

Male

1440

482

33.5

-2.243

0.025

Female

1440

541

37.6

Health issues

Male

900

199

22.1

-2.4152

0.015

Female

900

243

27

Career

Adjustment

Male

720

166

23.1

6.1047

<0.05

Female

720

79

11

Lossof

Support

Male

900

295

32.8

-0.1805

0.857

Female

900

299

33.2

Financial

Problem

Male

900

311

34.6

0.6274

0.529

Female

900

299

33.2

Social

Restriction

Male

540

122

22.6

-0.079

0.936

Female

540

123

22.8

Embarrassment / ridicule

Male

720

128

17.8

0.099

0.921

Female

720

127

17.6

Relationship

Male

1080

307

28.4

1.099

0.276

Female

1080

284

26.3

Sibling effect

Male

1260

295

23.4

-0.764

0.447

Female

1260

311

24.7

Specific

Thoughts

Male

720

240

33.3

3.8149

<0.05

Female

720

174

24.2

Total negative

Impact

Male

9180

2545

27.7

1.064

0.289

Female

9180

2480

27.0

Positive

Impact

Male

900

456

50.7

-0.297

0.764

Female

900

463

51.4

Table 3: With MR children Mothers are experiencing more difficulties than fathers with respect to physical care and health issues. Fathers are experiencing more trouble in career adjustments and specific thoughts. There is not much difference in the overall positive and negative impact scores among both parents.

D. Impact of mental retardation on parents of Mentally retarded children - based on severity of mental retardation

Table 4: shows results related to impact on parents of MR children based on its severity (mild, moderate and severe)

Domain

Mild

Moderate

Severe

Smax

Sobt

Smax

Sobt

Smax

Sobt

Physical care

960

87

960

324

960

612

Health

600

98

600

190

600

154

Career

480

68

480

95

480

82

Support

600

187

600

209

600

198

Financial

600

185

600

213

600

212

Social

360

76

360

84

360

85

Embarrassment/Ridicule

480

81

480

84

480

68

Relationships

720

186

720

203

720

202

Sibling effect

840

154

840

168

840

284

Specific thoughts

480

117

480

141

480

153

Total negative impact

6120

1239

6120

1711

6120

2050

Total positive impact

600

296

600

318

600

305

Table 4, shows results related to impact on parents of MR children based on its severity (mild, moderate and severe) and their relation Z-test has been used

Table-5: Showing the impact of MR on parents with respect to severity of disability

Domain

Mild vs.

Moderate

Moderatevs.

Severe

Mild vs. Severe

z

P

z

p

z

P

Physical care

-13.18

< 0.05

-13.14

< 0.05

-24.90

< 0.05

Health

-6.246

< 0.05

2.297

< 0.05

-3.997

< 0.05

Career

-2.310

0.021

1.078

0.280

-1.237

0.215

Support

-1.326

0.184

0.659

0.509

-0.668

0.503

Financial

-1.173

0.084

0.072

0.944

-1.657

0.097

Social

-0.710

0.478

-0.095

0.928

-0.805

0.418

Embarrassment/Ridicule

-0.675

0.503

1.627

0.103

-1.717

0.085

Relationships

-1.026

0.303

0.042

0.968

-0.984

0.327

Sibling effect

-0.885

0.373

-6.378

< 0.05

-7.237

< 0.05

Specific thoughts

-1.747

0.080

-0.840

0.401

-2.584

< 0.05

Total negative impact

-8.649

< 0.05

-3.870

< 0.05

-12.487

< 0.05

Total positive impact

-1.282

0.201

0.763

0.447

-0.520

0.603

Parents of moderate and severe mentally retarded children registered greater problems compared to those of mild mentally retarded children, for all 11 domains in NIMH-DIS. However, the difference in impact with respect to varying degree of severity is found to be minimal for most of the domains, except for career, sibling effect and specific thoughts. Total negative impact on mentally retarded children parents is with direct relation to the severity of mental retardation. Whereas, the positive impact levels with respect to degree of severity was insignificant.

Discussion

Present study was conducted on parents of 90 mentally retarded children.

NIMH-DIS was used to assess the impact on them.

1.       The impact in the parents of mentally retarded children is related to their socio-demographiccharacteristics.

2.       Thepresentstudyhasindicatedmorepositiveimpactintheparentsofmentally retarded children compared to that of the negative impact.

3.       Severity of MR is an important contributing factor to both the positive and negative impact in the parents of mentally retarded children. Intensity of negative impact in the parents unlike the positive impact is proportional to the severity of mentalretardation.

Parents response to different domains in NIMH

Physical care: The present study revealed that 52.2% of the parents were facing difficulty (either some / lot of difficulty) with respect to physical care requirements of mentally retarded children. This observation compares favorably with the study by Brust [3], who has found that the mothers of MR children require an average time of 12 hours 6 minutes for satisfying the physical care requirements.

Health: It can be seen that 36.7% of parents in the present study were suffering with some health issues. Most of them were facing mental worries in view of having MR child. This observation is consistent with the study carried out at the Regional Rehabilitation Center (RRHC) by Gathwala and Guptha [4] which showed that 60% of families were severely burdened with respect to physical health of family members, which included physical/psychological illness and depression of the family members Career: In the present study, 74.4% of parents didn’t have any impact on their career adjustments to support mentally retarded children, and the percentage of parents, who are facing some difficulty and lot of difficulties in their career is less. Similar observation has been reported by few authors in the past [5,7].

Loss of support: Statistics depicting distribution of loss of support with respect to different relations, indicates that ~ 50% of the parents felt that they are facing difficulty in getting support from relations. The study compares favorably with the observations made by other authors [8], who has found ignorance of families with mentally retarded children as the sign of social isolation of thosefamilies.

Financial problems: In the present study, 53.9% of parents (parents voted for both “some” and “lot of difficulty”) were facing severe financial problems which is in par with the earlier report by Seiquira & associates [9]. Gathwala and Guptaalso reported that 25% of the families were severely burdened by the financial needs[4].

Social restriction: Statistics of social restriction domain, evidences that 31.7% of parents (voted for both “sometimes” and “most of the times”) in the present study are constrained to social movement in view of having mentally retarded children. This observation is consistent with the previous reports by Farber

Embarrassment/ridicule: The current study resulted that more than 26.7% of the parents were facing embarrassment (parents voted for both “some” and “lot of” embarrassment)[10]. These results were also supported by the studies done by Dattaand Nancy [11,12].

Relationship: Only 45.6% are thinking negatively that the presence of mentally retarded children affects their relationship with spouse / family / in-laws / relatives/ friends / neighbours.

Sibling effect: More than 60.5% of the parents in the present study were happy about their sibling’s life style and carrier. This is comparable to Gohel study, who reported that higher percentage of parents felt that they were giving less time to their siblings [13].

Specific thoughts: More than 55% of the parents in the present study had never   thought of having another child, as they feel that they were unprepared to take responsibilities of another child in view of the existing struggle in rearing the MR child. Nearly 60% of the parents who sometimes thought of separating the MR child from the family, so that this child doesn’t affect the rest of family members. Majumdarfound that the parents of mentally retarded children were more vulnerable to stress than parents of normal children, which is in par with the present study [14]

Positive effects: More than 81.6% of the parents were having positive effect (including both groups i.e., “lot of effect” and “some effect”) due to mentally retarded children. The possible explanation for the positive effects in the parents of MR children can be got from following studies. Positive impact has also been reported by Kazak and Marvin[15].
More positive and less negative impact on parents

Present study has shown more positive impact (percentage of NIMH-DIS score = 51.1) in the parents of mentally retarded children compared to that of the total negative impact (percentage of NIMH-DIS score = 27.5) in the same study group. This finding relates to the observation in Flahertystudy, showing parents tendency to shift from negative impact (family problem) to positive impact (family competence) with time [16].

Present study suggests that the parents are facing adverse problems in the allocation of funds [i.e., financial domain (2ndhighest NIMH-DIS score)] in the care and training of their mentally retarded children as well as in other necessary domestic requirements. Negative impact on the parents of the intellectually disabled children in the form of financial crisis was well reported by Datta, whichisconsistent with the present study [11].

Gender based impact of mental retardation on parents: From above discussion, it is apparent that the overall positive and negative impact scoring between mothers and fathers is not significant, with few differences noted. Key finding of these observationsare summarized as follows:

1.       Mothers of mentally retarded children are experiencing more difficulties than fathers in physical care and healthdomains.

2.       Fathers of mentally retarded children are experiencing more trouble in career and specific thoughtsdomain.

3.       No significance is found between the parents for following domains: loss of support, financial, social restriction, embarrassment / ridicule, relationships, sibling effect and positiveeffects.

Several authors have found similar findings, which are explained below:

Rastogifound more negative attitude in case of mothers of mentally retarded children compared to fathers [17]. Fathers are concerned mainly about family budget and the cost of providing help for the MR child. These finding are in par with the Burrfinding, which revealed that the fathers of mentally retarded children tend to keep their feelings inside, and use more harmful types of strategies [18].

Above findings are comparable with the study by Hellerand Upadhyaya, which reported no significant association between fathers and mothers with respect to financial aspects (financial domain)[19,20].

Disability impact among varying degree of severity

From table 4 and 5, it is evident that the intensity of various domains in NIMH-DIS by the parents of mentally retarded children has direct linkages with the level of retardation of their child. Key finding of which are summarized as follows:

1.    The parents of moderate and severe mentally retarded children registered greater problems compared to those of mild mentally retarded children, for all 11 domains ofNIMH-DIS.

2.    Total negative impact scoring with respect to varying severity of MR is significant, with NIMH-DIS scoring being high for severe mentally retarded children compared to those of the mild and the moderate mentally retarded children.

3.    Positive impact scoring is not significant with respect to varying severity of MR.

The present results are at par with the results of Magra & colleagues (1999), who have stated that mothers face many challenges such as poor health to care for their loved ones with degree ofMR. The parents with mild MR child tend to help themselves with a keep going tendency. Similar results and reasons are identified by Seiquirain relation to severe mentally retardedchildren [9].

Strength of the present study

1.    The comprehensive assessment of the impact of having a mentally retarded child onparents

2.    Comparing the impact between mothers andfathers

3.    Comparing the impact based on the severity of mentalretardation

Limitations

1.    This is a one stage cross sectional study no follow-ups weredone

2.    Lack of a comparisongroup

3.    Sample size issmall

4.    The study is conducted in a Government hospital, therefore results cannot be generalized.

Summary

The current study is a cross-sectional study, intended to explore both the positive and negative impact on the parents of mentally retarded children with respect to parent’s gender and severity of mental retardation by using the NIMH- DIS.

In this study, 180 parents (comprising 90 families with their fathers and mothers) with mentally retarded children were selected. Tools used were: specially designed socio-demographic data, clinical data sheet and NIMH-DIS (11 domains assessing specific parameters).

Results have shown than most of the respondents were Hindus hailing from rural background with nuclear families, more than 40% being illiterate with family income of < Rs.10000 per month. Most of the female respondents (mothers) were house wives and didn’t have any history of infections during and after the pregnancy. Most children were born out of normal vaginal delivery and very few by caesariansection.

Percentage of positive impact (51.1%) on the parents of mentally retarded children is substantially negative impact (27.4%). Most of the parents in the present study were not considering the situation of having MR children as a burden.   

Conclusions

The salient features of this study are:

1.    The present study has shown that the impact levels in the parents of mentally retarded children are related to their socio-demographic characteristics.

2.    This study has shown more positive impact in the parents of mentally retarded children compared to that of the negative impact irrespective of the parent’sgender.

3.    It has been found from the present study that the degree of Mental Retardation severity is an important factor in giving rise to both positive and negative impact on the parents of mentally retarded children. Whereas, the difference of negative impact with respect to positive impact isminimal.

In conclusion, it can be inferred that it is not necessary for every parent having a Mental retardation child to have negative impact but in some this can bring a positive impact, like acceptance of the situation realistically and standing right behind the MR child to provide support. At the same time, it is also true that having a MR child is a source of severe stress to the family members and it can affect them negatively in many ways. Therefore, there is every need to make attempt for primary prevention of mentalretardation.

Recommendations for future work

1.    Impact of age and gender of the MR child on their parents can be considered in future, so that it could help in better utilization of interventions.

2.    A longitudinal study with regular follow-up may be considered in the future for better understanding the impact levels on theparents.

3.    Studies including coping interventions may be taken up in the future, helping the parents in developing coping strategies and to overcome the problems.

4.    It is worthwhile to conduct a comparative study between normal and MR children to highlight the problems being suffered by the parents of MR children.

5.    A multicentric study to be conducted, so that the results can be applied over wide range.

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Sunitha V, Murthy Y.V. Siva. A study of the disability impact among parents of mentally challenged children. Int J Pediatr Res. 2018;5(10):497-505. doi:10.17511/ijpr.2018.10.04.

 

 

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