Issues faced by the Siblings' of Mentally Challenged Children

Introduction

Mentally Challenged Children:

Mental retardation is a condition of arrested or incomplete development of the mind, which is especially characterized by impairment of skills manifested during the developmental period, which contribute to the overall level of intelligence, i.e. cognitive, language, motor, and social abilities. Mentally challenged is able to learn many skills and participate in family life however they have a significant effect on his/ her family. The attitude of the siblings of the mentally challenged child usually follows the parent’s attitude. Many siblings feel neglected because of the amount of attention that the parents give to the mentally retarded child. The family’s education and financial status often have some effect on how well its members adapt to the handicapped child. Better educated parents and those who come from the upper socio-economic levels are in a superior position to seek the best possible medical and educational facilities for their children.

Challenges faced by the siblings

In any family the relationship that siblings have is unique, they may over the years be teacher, friend, companion, follower, protector, enemy, competitor, confidant, or role model. When this relationship is affected by a sibling's disability or chronic illness, the long-term benefits of the relationship may be altered. Powell and ogle note that the most challenging of these dilemmas is the care of the adult sibling who has a disability. Even though nondisabled adult siblings have lives of their own, they face unusual additional responsibilities because of their unique relationship with their brother or sister with a disability. The amount of responsibility that adult nondisabled siblings assume for their adult sibling with a disability varies with individuals and with circumstances. The most challenging issues family face is, on the one hand encouraging and fostering the independence and self-determination of the person with a disability and, on the other hand, facing the reality that, at the same level, assistance may be necessary. As services became more available and as information was disseminated that promoted public awareness and mainstreaming of children with mental retardation, the rates and correlates of out-of-home placement changed.

When the mentally challenged child is placed in an institution, the effects on the male and female siblings may also vary. Female siblings, who have provided a great deal of home care for the mentally retarded child, may be helped by the institutionalization. Male siblings, who previously spent much time outside the home with their peers, may find their role in the family expanded. As a result of the increased attention to the male sibling, tension may occur between him and his parents.

Significance of the study

The rationale of the study is to obtain a primary understanding about the effect of mentally challenged children on the normal siblings. An overview of the kind of challenges they face is beneficial to understand the life circumstances and mental health of the siblings of mentally challenged children. The personal and fieldwork experience of the researcher is also another reason for this study. The results of this study could be used to further explore areas that need attention into the intervention process for the mentally challenged child and his family or siblings. Awareness could be generated among family members themselves about the various levels at which the disability could affect the family, which may possibly unnoticed by the parents who are more involved in the life of their disabled child.

Review of literature

Attitude toward mentally challenged child become more positive during the last 20 years. It was common that such members of the family have been admitted to long-stay institutions and sometimes forgotten and never mentioned about that member existing in the family. The attitude of the parents reflects on their children. In research studies of families, most of whom rarely visit hospitals. The birth of a child with a disability has an effect on the family. The children must adjust to the fields like family time, money, attention, and psychological support. Each child‘s reaction to having a disabled sibling may vary depending on the age of the children. The concerns of the child may vary from sibling to sibling. The younger the child the more difficult to understand the situation and events.

The siblings of children with special needs often grow up in a situation of stress, but without the maturity to deal with their experiences. They are confused by their reactions. But sometimes the child may also feel love and protective toward their sibling. The feelings they go through are resentment, embarrassment, guilt, sorrow, and fear. It is very important to understand and deal with the feelings. The sibling also feels anger and sometimes a sense of worthlessness. If we can support to enhance the self-esteem and sense of competence then they can also develop positive qualities like compassion, tolerance, and maturity. Their life seems different from others. Sometimes they also feel difficult to talk to friends about the sibling’s disability.

Peter Schuntermann, 2007 studied the experience of siblings who live with brothers or sisters diagnosed with a pervasive developmental disorder or mental retardation. There is less satisfaction with their sibling relationships, increased negative behaviors, and fewer positive behaviors toward their mentally retarded siblings. When social support was provided to families, positive behaviors remained high. Siblings of autistic children were found to have lower self-esteem and risk for depression.

The above review of the literature shows that a number of researches have been conducted focusing on the issues faced by the siblings. There is no importance given to the psychological, social, academic, and economic issues faced by these siblings. The scope of the study would be the relationship between the knowledge level of mental retardation and the challenges faced by the siblings in specific. It is important to look at the problems faced by the other children when there is a disabled child in the family. This study would help to identify the negative attitude and could be assisted in various ways that would help them to overcome their unfavorable outlook and maximize their role in the intervention of the mentally challenged child.

Methodology

The aim of the study was to understand the major issues faced by the siblings of mentally challenged children and the objectives were to understand the knowledge of siblings about the mental retardation and to assess the issues faced by the siblings of mentally challenged children. The study hypothesized that the higher the knowledge on mental retardation the lesser the issues faced by the siblings. A descriptive research design was used in the study. The study was conducted in two selected institutions for the mentally challenged individuals in the Idukki district, Kerala. Total samples of 50 siblings of mentally challenged children were selected on the basis of inclusion and exclusion criteria through the purposive sampling method. The participants of the study were both male and female and the age group of 12 to 18 years. The siblings with mental illness were excluded from the study. A structured questionnaire, GEM (General information, Etiology, and management) questionnaire was developed in the National Institute for the Mentally Handicapped, Secunderabad, India was used to assessing the normal sibling’s knowledge on mental retardation. And a structured questionnaire was developed to assess the issues faced by the normal siblings of mentally challenged children. The questionnaire consisted of 4 main areas- economic, social, academic, and psychological challenges faced. Analysis of data was carried out by using the Statistical Package of social sciences (SPSS) version 17.0. The data were coded for analysis. Operations like mean, standard deviation and correlation etc. were carried out and the correlation was assessed using Pearson correlation.

Ethical Consideration

• The response should be kept confidential.
• The researcher has taken the written consent of the respondent.
• The researcher should not be doing anything that would cause physical, social, or emotional harm to the respondent.
• The researcher has taken ethical clearance from the Department of Social Work

Results

The age of the respondents ranged from 12 to 18 years. 32 percent of the respondents were belonging to 18 year age group, 18 percent of the respondents were in the age of 17, 18 percentage of the respondents were in 16, 14 percentage of respondents were in the age of 15, 6 percentage of respondents are in the age of 14, 4 percentage of the respondents were in the age of 13, and 8 percentage of the respondents were in the age of 12 year age group. And 52 percentages of the respondents were females and 48 percentages were males. Educational qualification shows that 46 percentages of the respondents were studying (11-12) standards, 38 percentages of the respondents were studying in 6-10 standards and 16 percentages of the respondents were qualified with a degree.

The challenges faced by the siblings of the mentally challenged were measured by using self maid questionnaire consisting of 4 domains. The results show that 16 percentages of the respondents have higher challenges, 74 percentages of the respondents face moderate challenges and 10 percentages of the respondents said that they have very low challenges. The results show that 28 percentages of the respondents are having a high knowledge level on mental retardation, 66 percent of the participants were having a medium knowledge level on mental retardation and 6 percentages of the respondents were having a low knowledge level on mental retardation. The results show that most of the respondents had moderate knowledge on mental retardation. This shows that there is a greater significance to knowing about the actual condition. This will help the siblings to cope with the situation. The study also found that there is a significant correlation between the knowledge level of the respondents on mental retardation and the challenges faced by them. It shows that higher knowledge on mental retardation lowers the challenges.

Conclusion

A study on the issues faced by the siblings of mentally challenged children was conducted based on 2 selected institutions in the Idukki district of Kerala with a sample of 50. It is most common that there can be acute embarrassment about a brother or sister’s appearance or behavior, especially in public and when others tease or stare. They may feel embarrassed about duties at home that peers don’t have, especially if the child with special needs is older. A sibling can have concerns about the future, both for themselves and their brother or sister with special needs.

The results of this study could be used in the intervention process for the mentally challenged individual and his family or siblings. Therefore siblings identified with higher challenges could be assisted in various ways that would help them to overcome their unfavorable condition and maximize their role in the intervention of the special child. Awareness could be generated among family members themselves about the various levels at which the disability could affect the family, which may possibly unnoticed by the parents who are more involved in the life of their mentally challenged child.

References

1. Baker, L. E. (1998). Siblings of Children with Mental Retardation Living at Home or in Residential Placement. association for child psychology and psychiatry .
2. Cleveland, D. W., and Miller, N. (1977). Attitudes and life commitments of older siblings of mentally retarded adults. Mental Retardation, 15 28-41.
3. Children with disabilities: Understanding sibling issues. (1988, november 11). news digest,
4. Gath, A. (1978) Down’s syndrome and the family: The yearly years. New york: Accademic Press.
5. Powell, P. A. and Ogle (1987) B. Md.: Paul H. Brookes Publishing Co., 1985. 226 pp. $16.95 paper, Children & Schools, Volume 9, Issue 2, Winter, Pages 131–132, https://doi.org/10.1093/cs/9.2.131
6. Robinson, H. B. and Robinson, N. M. (1965) The mentally retarded child New York: McGraw-Hill.
7. Schuntermann, P. (2007). The Sibling Experience: Growing Up with a Child Who Has Pervasive Developmental Disorder or Mental Retardation. HARV REV PSYCHIATRY ; .
8. World Health Organization. Division of Mental Health. (‎1996)‎. ICD-10 guide for mental retardation. World Health Organization. https://apps.who.int/iris/handle/10665/63000
9. Zolinda Stoneman, G. H. (1989). Role relations between children who are mentally retarded and their older siblings: Observations in three in-home contexts. Research in Developmental Disabilities, 10(1), 61-76.