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

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.


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

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.   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.   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-demographic characteristics.
2. The present study has indicated more positive impact in the parents of mentally 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 mental retardation.

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 those families.

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. Majumdar found 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 Pediatric Review: International Journal of Pediatric Research Available online at: www.pediatricreview.in 503|P a g e 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 (2 nd highest 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 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 and fathers.
3. Comparing the impact based on the severity of mentalretardation.

Limitations
1. This is a one stage cross sectional study no followups weredone 2. Lack of a comparisongroup

Sample size issmall
The study is conducted in a Government hospital, therefore results cannot be generalized.
Pediatric Review: International Journal of Pediatric Research Available online at: www.pediatricreview.in 504|P a g e

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.