An Empirical Examination of Stress and Coping of Families Rearing Children with Mental Retardation with Relevance to their Awareness Issues

Dr. V.S.T. Krsihna

Abstract
Introduction:
It is roughly got estimated that in India the population (3crores) of persons with Mental Retardation (Intellectual and Developmental Disability, IDD) does equals to that of Australia’s population. Of which most of them are situated unattended to by any professional services living in rural areas.  Mental Retardation/IDD is characterized by an age inappropriate Intellectual development that is significantly of sub average level. This condition is recently renamed as Intellectual and Developmental Disability with approximate prevalence of 2.5 to 3% in India. This amounts to near about 3 crorers and 75% of this affected population is estimated to be living in rural and semi-urban areas, consequently exposed to higher levels of Stigma, acute lack of rehabilitation facilities and poor awareness regarding this condition and related rehabilitation process. 

To add fuel to the fire, the challenge of intellectual disabilities do not have any satisfactory medical, surgical or bio-chemical means of management as mental retardation does not happen to be a disease entity, more than that it is only a condition has to be upgraded and intervened through non-medical and rehabilitation services ONLY. In such prevailing circumstances, it is crucial to bring a satisfactory adjustment in the lives of children with mental retardation and their care givers through energetic initiatives of maximum utilization of existing rehabilitation prospects. This in turn heavily depends on the parents and care-givers awareness levels on the rehabilitation prospects and programmes. 

This study has undertaken investigation of 151 families concerning their multi-dimensional awareness issues concerning rehabilitation and main streaming of Children with Intellectual and Developmental Disabilities between the age group of 5 to 18 years representing both rural and semi urban backgrounds of domicile. The study followed descriptive and diagnostic design with Stratified Proportionate Sampling. This study high lights the need for awareness programmes on Intellectual and Developmental Disabilities in India and making them actively available and further their levels of utilization and gives directions for advancing the rehabilitation scenario of children with mental retardation (intellectual and developmental disabilities).

Programmes for Rehabilitation Significnce:
Introduction:
All over the world there is emphasis on the need for scientific services for persons with Mental Retardation (Intellectual and Developmental Disorders).

• The Millennium Development Goals (MDGs) furthered by the efforts of UN agencies such as UNESCAP (United Nations Economic and Social Commission for Asia and Pacific), origin of legal enactments ensuring human rights of persons with disabilities and National Human Rights Commission (NHRC, India)
• The size of population of Children with IDD (Intellectual and Developmental Disabilities) equals to Australia’s Population.
• To match Skilled Human Resource with the existing need, it may need 7 to 8 decades time ahead to bridge it. 

The choice is hence community awareness building in all its sincerity to cope up with the present challenges families are facing.

• AWARENESS building is crucial in the scenario of Mental Retardation (IDD) in view of the existing reality of huge needy population in matchless proportion to existing services and personnel.
• The situation is more alarming in rural sector with services getting concentrated in Urban and Semi-Urban areas.
• Awareness is the “mantra” hence in this current scenario of indian circumstances where we can’t go for promoting more and more production of specialists and institutional based services.

Thus this paper speaks the significance of ‘SOCIAL WORK PROFESSION as a facilitator of effective community awareness in IDD” 

LITERATURE ISSUES : Various studies were undertaken in India and abroad citing the need for various interventions and rehabilitation programmes for the well being of persons with IDD, where as the need for awareness creation was relatively less attended. A brief look at the following studies reinforces the need for emphasizing on awareness creation programmes. 

• Stages of responses: Drotar, et al 1975, has come out with a cycle of response patterns families undergo in response to the birth of a child with MR (IDD). This study conveys that only after getting dribbled through series of stages only families reach the long destination of adaptation. The study further supports the significance of provision of sufficient awareness activities to enable families reach adaptation state with lesser strain and complications.
• It was studied by few indian scientists that families adjustment process and its implications do span over several aspects of family life (Girimaji et al 1999)
• Minnes (1988), in his study explored the area of family resources and concluded that perception of the stressful events concerning birth and care giving to children with MR (IDD) will be crucial in modifying stress and the family’s long-term functioning. 
• Jani (1967) indicated that parental feelings were marked by anxiety about future. Also, negative effects towards other siblings, psychological stress, decreased interaction with neighbors and relatives, misunderstandings within the family. 
• The issue of paucity of opportunities to parents to explore their own needs and difficulties were examined by Loeb (1979) and it was stated that this restriction exposed them to multifarious stressors of special nature.
• Kermanshahi et al (2008) in their study on perceptions of lives children with intellectual disability found six major themes, inadequate support from the family and the community,
• Costigan et al (1997) explored problem solving abilities in families of children with Mental Retardation, will play crucial role in their adjustment, which in turn are proportionate to their levels of awareness levels and potentialities.

Aims and Objectives of the Study:
It was proposed to enable famiiies with updated information support by few studies in western set up. In Indian set up, present study hence kept the core objective of documenting the adjustment of families with response to the awareness background of these families will be having.

Methodology:
Design:

• The present study has adapted a DESCRIPTIVE DIAGNOSTIC STUDY in view of the study needs.

Sample Size:
ON A SIZE OF 151 FAMILIES in and around Mysuru City (50 Km radius)
Sampling Design: Stratified Proportionate Random Sampling was administered on identified sources of sample (few organizations within and nearby areas of Mental Retardation have voluntarily supported).
Inclusion Criterion:

• Children availing day care/special education services in different facilities with age range of 5 to 18 years availing services from Day Care Service Centers only.

Exclusion Criterion:
Children with Profound Retardation and Immobility and Severe Epilepsy were excluded.

• Children below 5 years and above 18 years and were in Institutionalized care were excluded.

Stratified Proportionate Random Sampling was employed. 

Tools:
FISC-MR (FAMILY INTERVIEW SCHEDULE FOR ASSESSMENT OF STRESS AND COPING IN MR)
TOOL FOR ASSESSMENT OF SOCIO-DEM BACKGROUND OF FAMILIES
 TOOLS TO ASSESS EXTENT OF AWARENESS OF FAMILIES

The above table reveals that extended families do dominate the results next follows with equal representation of nuclear and single parenting families. This trend indicates the impact of migration and urbanization on semi urban and rural areas where the respondents were dwelling. Extended families are becoming necessitated in order to meet the additional care for the children with developmental disabilities as the parents alone are not able to bear the challenge. Further, it also indicates that nuclear families are changing their shape to cope up with the responsibilities of intellectual and developmental disabilities.

Above table shows the large families belong to 10th and less than 10th (SSC) academic background, which explains that families are in disadvantaged backgrounds?

Table 3 on occupations clearly indicates families essentially belong to non-skilled agrarian and other low paid professions.

Table 4 indicates the lowest number of children are getting identified befor the age of 3 years. This further indicates low levels of awareness among families regarding early identification.

Table 5 is indicating that majority of the mothers are conceving below the age of 20 years. This fact gives an alarming situation that when mothers are not physically and psychologically prepared enough they are getting conceived and this may be augmenting the chances of occurrences of disability in turn.

Table 6 indicates that families are essentially depending on visible damages to occur to identify the presence of intellectual and developmental disabilities. Whereas very low number of families are able to identify disabilities in the earlier stages such by watching speech and other earliest milestones of development. Thus delayed identification spirals enhancement of damages and consequently burdens the families.

Table 7 is able to indicate majority  of the parents are depending on non-professional sources in identifying disabilities among their children.

Table 8 is indicating though very low percentage (14.57%) are separated this could not be a happy trend to watch as in the presence of lack of sufficient awareness and professional support families may feel more burdened and enter into marital distresses.

Table 9 Depicting the Chiqsquare results Age of Identification and impact on Stress

• Chi-square results revealed no significance, in its deeper observation beyond the restricted frames of non-significance, reveals that 130 families have reported out of studied 151 families presence of moderate and high levels of stress in the event of delayed identification of the problem of Mental Retardation.

Since p = 0.068 > 0.05, the test was not significant at 5% levels i.e. there was no significant relationship between the retardation identification of child with problems and stress at 5% level of significance, yet these statistical validations are highlighting a baffling reality as discussed below.

Among 21Children observed with retardation of early identification of problems, 15 (71.4%) parents were having moderate stress and remaining 6 (28.6%) parents were having high stress. 

Among 130 children with delayed identification of retardation, 65 (50.0%) parents were having moderate stress and remaining 50 (50.0%) parents were having high stress through it was found to be statistically not significant at 5% levels.

The above results in its deeper observation beyond the restricted frames of non-significance, reveals that 130 families have reported out of studied 151 families presence of moderate and high levels of stress in the event of delayed identification of the problem of Mental Retardation.

Discussion:
It is observed that in spite of lack of significance of results, this needs a dexterous and delicate and cautious examination and sensitive interpretation of the obtained statistical validation without which the essence of the result goes to wasteful relevance and impractical implications. Hence the following exercise is attempted.
To begin with as it can be clearly seen there is a clear observation that only 21 (13.91%) of 151 total sample size had been identified in the earlier age group i.e., below 6 years. Whereas 130 (86.09%) of the total sample were identified only after entering in higher age group as observed in the study i.e., above 6 years to 18 years against the lower age group.

This happens to be a serious finding irrespective of significance levels, which are critically examined further as mentioned below.

1. The above finding immediately informs us that 109 (72.18%) of study sample were identified only after completion of crucial formative age of first 5 years. Though brain sciences argue about neuroplasticity, cognitive research has already identified what could not be provided in the first 5 years of life- such as developmental opportunities and any suggested remedial training will leave permanent deficit that influences the life span later.
2. Understanding from the perspective of early developmental period of upto first 5 years of life, in the case of mental retardation only a weak level of early identification (21 forming 13.91% in comparison to the major section of the sample i.e. 130 (86.09%) were getting identified only after the early influential years are lost, where the extremely precious span of duration which could otherwise revitalize children with disabilities is lost.
3. After losing the crucial first five years all the remaining efforts may yield some or other form of results but with caution it shall be noted that nothing much contributing to compensate the impact of intellectual sub-normality is out of hands by that time.
4. These findings call for noticing an alarming bell is ringing through the above findings that indicates there is colossal loss to human resource in the form of delayed identification of the children with mental retardation by their family only after completion of first valuable 5 years, where in the loss already sets in and any initiatives of the highest quality thereafter are not worth equal in their value to that of early intervention services that are rendered. All International bodies including WHO (World Health Organization) are promulgating the serious necessity of early identification, early intervention and early referral of children to rehabilitation facilities. (Jacobson and Mulick 1996).
5. Further, it is an established even in the clinical observation of the researcher that when the child was identified of intellectual impairments at later years crossing all the decisive formative early years, there would be only a bleak possibility of facilitating optimal attainable development within the light of presenting intellectual impairments.
6. Poor scope will be left for stimulation and taking remedial measures in the wake of delayed identification such as initiating functional academics training, self-care skills (activities of daily living) training, conceptual ability development related to number recognition, colour, size, shape, identifying safety and speech language and communication skills development and initiating pre-vocational and domestic skills training. 
7. Further, in the area of neuro-motor development nothing much substantial changes can be brought if the interventions are initiated after the completion of first five years. 
8. In view of all these circumstances, in an indirect manner burden increases on the parents in terms of advanced levels of child’s dependency on parents and other care givers to conduct his activities of daily living. This dynamics in circumscribed route again from the building block in alleviating parents and family stress.
9. In view of poor skills that emerge out of late identification many children due to their deficient communication and comprehension skills can acquire severe behavioural challenges which otherwise can be prevented.
10. Thus, this study would impinge on the serious issue of delayed identification which contributes indirectly to the chronic stress of the parents which may not reflect in the cross sectional evaluation and hence the lack of significance of the results obtained, yet with the above riders to be serious considered.

However, Results reveal that there is a positive correlation between age of identification of retardation and perceived stress in few subareas i.e. decreased leisure time, personal distress and other interpersonal problems indicating that increase in child’s age at the time of identification problem bring more stress in these areas and vice versa. 

It is known that if MR is identified at an early age, the child can be exposed to various intervention procedures which can improve his/her communication, adaptive skills, self-help skills, social skills and functional academics. As early childhood is a critical age therefore child learns quickly at this age than other ages. Therefore, when MR is identified at an early age it improves the performance of child and reduces the stress of parents and gradually parents get adapted to the child and his/her daily schedule. In contrast when MR is identified at later age, not much improvement can be brought in the child this leads to extra care of child and therefore reduces the leisure time of parents and increases the blame game due to which parents blame each other for the problem and this increases their personal distress and hamper their interpersonal relationship. 

However, studies report that the influence of the child’s age on parenting stress is unclear. In contrast to the current finding Mash and Johnston (1983) reported that younger children were perceived as more stressful for parents than older children. Therefore, there is a need to carry out research in this direction further.
It has been identified that there exists a significant relationship between age of the children with MR and stress levels experienced by the families.
​
There exists a significant relationship between awareness and stress levels of the parents. 

Since p = 0.0 < 0.05, the test was significant at 5% levels i.e. there exists significant relationship between the awareness about child with problems and stress at 5% level of significance. 

Among the 77 parents with adequate awareness about child with problems, 58 (75.3%) parents were having moderate stress and remaining 19 (24.7%) parents were having high stress. 

Among the parents of 74 who had inadequate awareness about child with problems, 22 (29.7%) parents were having moderate stress and remaining 52 (70.3%) parents were having high stress and it was found to be statistically significant at 5% levels.

There exists a significant relationship between awareness and stress levels of the parents. This implies that having higher levels of awareness there would be lesser level of stress experienced by the parents.

Awareness in many of the stress phenomenon happens to be a reliable factor that can redress the imbalance and as well can even immune persons to be exposed to stress. Like in the case of awareness in the area of personal hygiene and its role in infectious illnesses, it can be expressed the higher the levels on awareness on personal hygiene proportionately can contribute for better health. In addition, maternal awareness on nutritional cooking of food would be enhancing the family’s health status. Thus it can be appreciated that either in the general health, psycho-social condition awareness will act as a buffering agent.

These results are in consonance with existing research which upholds the understanding the problem faced coping, resilience to pursue the tasks are in cohesion with parents resources and awareness levels. The current result obtained in the above statement concerning awareness and stress the following issues would be relevant in elaborating the obtained results.

1. Appropriate and scientific understanding on the nature and causation of MR can prevent families doing doctor shopping involving high levels of expenditure with an anticipation “if  not one the other doctor would” help them to cure the child’s problem.
2. Scientific information parents having on the causation of  MR  will allow the family to not to involve in mutual accusations, in which they may cite the role and responsibility of either mother or father having some or other defect would have caused the disability in the child.  This perception in turn promotes guilt feeling and loss of active utilization of whatever minimal residual abilities does have even after identified as MR.
3. Along with prevention of misconceptions awareness has the role to play in families regarding the para mounting priority allotment of necessary time and resources for psycho-social interventions which would enable the children to reliably respond to training programmes.
4. Further, awareness can also help families to enhance their role play in rehabilitation by recognizing the need to attend to underlying issues of psycho-social rehabilitation which is not disease and treatment model.

Thus, on observing the child’s lesser abilities parents and other care givers will not loose sight of the role and immediacy of rehabilitation services and do less doctor shopping and join for intervention service at the earlies stage after recognizing the child is not suffering from a disease essentially and the present challenge shall be originating from inadequate training and inadequate opportunities of exposing the children to social contexts on  a consistent basis till the child reaches the attainable levels sociao-cognitive and occupational functioning. (Bauman, 2004; Farheen A, Sanjay Dixit, S.B. Bansal, Veena Yesikar (2008)

Conclusions and Recommendations:

• Strength of a chain depends on its weakest link.
• Families ability to manage stress is influenced by their extent of Awareness and Scientific Information they posess.
• Indian villages and Indian culture at large still is possessed by evil spirits and other supernatural issues in initiating measures against challenges like MR (IDD).

Thus the study recommends need for conducting more awareness programmes (Krishna, V S T and Ramaniah, TBBSV, 2008)through involving Social Work Professionals, MSW students, NSS and ICDS systems and so on for enabling the children with IDD.

Bibliography

1. Bauman, S (2004): Parents Of Children With Mental Retardation: Coping Mechanisms And Support Needs. Dissertation Submitted To Dept. of Counseling and Personnel Services, The Faculty of The Graduate School of The University of Maryland.. Doctor of Philosophy, Dissertation directed by: Dr. Hershenson, David. PhD.
2. Costigan, Catherine L; Floyd, Frank J; Harter, Kristina S.M; Mc Clintock and Joseph, C (1997): Family Process and Adaptation to Children with Mental Retardation and Resilience in Family Problem Solving Interactions, Journal of Family Psychology, 11 (4), 515-529.
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8. Krishna, V S T and Ramaniah, TBBSV (2008): Working with a Moderately Mentally Retarded Child with Challenging Behaviours: A Social Work Approach, Paper Presented at the 26th Annual Conference of the Indian Society of Professional Social Work, held in Mangalore - 28th - 30th January, 2008.(un published).
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10. Minnes, P. M (1988): Family and Stress Associated with Having a Mentally Retarded Child, American Journal of Mental Retardation, 93 (2), 184–192.

Dr. V.S.T. Krsihna
Prof. of Social Work, VVFGC College, Mysuru