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
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:
All over the world there is emphasis on the need for scientific services for persons with Mental Retardation (Intellectual and Developmental Disorders).
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.
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.
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).
Children with Profound Retardation and Immobility and Severe Epilepsy were excluded.
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
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.
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.
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.
Conclusions and Recommendations:
Dr. V.S.T. Krsihna
Prof. of Social Work, VVFGC College, Mysuru
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