RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES, BANGALORE,

KARNATAKA,

PROFORMA FOR REGISTRATION OF SUBJECTS FOR

DISSERTATION

1

NAME OF THE

CANDIDATE &

ADDRESS

MS. RANI PERIKA

1 YEAR M..SC NURSING

RAJIV GANDHI COLLEGE OF NURSING,

OPP MEENAKSHI TEMPLE, IIT CAMPUS,

BANNERGHATTA ROAD, BANGALORE –

76

2NAME OF THE

INSTITUTION

RAJIV GANDHI COLLEGE OF NURSING,

BANGALORE

3COURSE OF THE STUDY

& SUBJECT

1YEAR M.SC NURSING

PSYCHIATRIC NURSING

4DATE OF ADMISSION TO

THE COLLEGE

26TH AUGUST 2009

5 TITLE OF THE TOPIC

“A DESCRIPTIVE STUDY TO ASSESS THE

KNOWLEDGE AND ATTITUDE OF

MOTHERS REGARDING CARE OF

MENTALLY RETARDED CHILDREN IN

SELECTED MENTALLY CHALLENGED

SCHOOLS IN BANGALORE.” WITH A

VIEW TO DEVELOP AN INFORMATION

BOOKLET

6. BRIEF RESUME OF THE INTENDED WORK:

INTRODUCTION

“Normal is a useful word for medicine and psychology, but otherwise it is too abstract

when we decide what’s normal and what’s not normal, it could be very dangerous”

Alexander Jollien

(Philosopher)

History has not been kind to those with developmental disabilities. Throughout

history, people with developmental disabilities have been viewed as incapable and

incompetent in their capacity for decision-making and development. A person whose primary

mental abilities are not fully developed become a complete misfit in this community, such

individuals are left behind and allowed to lead a substandard human existance.1

Mental retardation refers to significantly subaverage general, intellectual functions

existing concurrently with deficits in adaptive behavior manifested during the develpmental

period.

Prevelance studies in the early 1980’s and concluded that 2.5 – 3% of the general

population have mental retardation (the Arc, 1982). Based on the 1990 census, an estimated

6.2 – 7.5 million people have mental retardation. Mental retardation is 10 times more common

than cerebral palsy, and 28 times more prevelent than neural tube defects such as spina bifida.

It can occur in any family, 1 out of 10 families is directly affected from mental retardation.2

Census 2001 has reveled that over 21 million people in India are suffering from

disablilty. The prevelance of mental disablily was found to be 2.3%, the prevelance was higher

in females (3.1%) and males (1.5%) in Karnataka. 29

The review on mental retardation in India indicated that there were 13 to 14 million

mentally reatarded individiuals in our country. Individuals with mild mental retardation alone

comprises 75% of the total mentally retarded population and the remaining 25% belongs to

moderate, severe and profound group.6

Cases of mental retardation have been documented in ancient medical literature. The

history dates back to the beginning of man’s time on earth, the evidence of mental retardation

can be found as far back in history as the therapeutic papyri of thebes, Egypt, around 1500

B.C.

Mental retardation is a syndrom/condition defined by a collection of symptoms, traits

and characteristics. Although precise etiology of mental retardation remains unclear. It is

belived that environmental factors such as lead ingestion, pre-natal and post-natal

complications, socio-economic factors may contirbute to the development of disability. When

a child with mental retardation is born in the family, they consider the birth of such child as a

misfortune, a curse, thus having a chil with mental retardation in the family affects not only the

individual but also their families and society as a whole.7

An early classification scheme proposed by the american association on mental

deficiency (retardation), in 1910 refered to individuals with mental retardation as feeble

minded, meaning that their development was halted at an early age. Or was in same way

inadequate in making it difficult to keep pace with peers or manage their daily lives

independently. 3 levels of impairment were identified i.e: ‘idiot individual’ whose

development is arrested at the level of 2 years; ‘imbeciles individual’ whose development is

equivalent to that of 2-7 years at maturity; and ‘moron individual’ whose mental devlopment is

equivalent to that of a 7-12 years old at maturity. 12

Recent research has indicated that active involement of parents for the care of their

children with mental retardation can be helpful in alleviating the guild and anxity related to

loss and impairment.

6.1NEED FOR THE STUDY:

“A lot of people with disability say ‘this is who I am.’ I don’t come here hoping my

disability will go away, but because I want to participate”

Carolyn R Thompson

The family is based on both heredity and bond between the mother and child. Family

systems are developed for various reasons including security, belongingness and love. The

birth of a healthy normal child brings joy to the family and the birth of mentally retarded child

shatters their dreams and affects the process of bringing up the child, brings problem and

hazards to the parents.

The global burden of disease study indicate that by the year 2020 childhood, neuro

psychiatric disorder will increase by more than 50% internationally become one of the 5 th most

common causes of morbidity, mortality and disability among children in the world. Every year

more than 12,5000 infants are born who will be diagnosed for mental retardation.9

A study conducted by Neeradha Chandra Mohan on 60 mothers of mentally retarded

children (mild, moderate and severe) and reported that there is no significant difference in the

attitudes between the degree of retardation and sex of the child, the majority of the mothers

exhibited guilt, shame and aggression towards their mentally retarded children. 10

Chomicki S, Wilgosh L (1992) reported the parents knowledge on mental retardation

at department of psychology Canada. This preliminary study compared knowledge of parents

of children with moderate mental retardation and parents of children with severe mental

retardation on 4 health care variables, using a questioner format. Parents of children with

severe impairments and those with school aged children had significantly 50% knowledge

regarding symptoms of mental retardation and the hospitalization of those children, than

parents of children with moderate mental retardation or those with pre-school children. 17

A study conducted by Laxminarayana on mother’s knowledge, attitude of children

with mental retardation at institute of child health and hospital for children Madras.

Participants were 50 mothers of children with mental retardation attending genetic clinic of the

institute of child health hospital at Madras, with special reference to their knowledge, belief

and attitude in the care of these children were evaluated. After evaluation they were educated

individually and in group with demonstration by using (picture cards, pamphlets) on the

causation, expected health problems and the ways to help the child with mental retardation.

Re-evaluation was done after 3 months and results have shown that 50% improvement in

mothers on skills in providing developmental enrichment of these children. 30

Another study by Channabasavanna on attitudes of parents towards mental retardation

reveal that parents attitudes are not formed on the degree of retardation rather than on the

concept of retardation and helped to remove the misconceptions which brings the positive

attitude in parents. 11

According to the above studies the investigator believes that parents are the best

people who can identify the needs of their children with mental retardation, if they obtain

proper knowledge about mental retardation and care of the child with mental retardation. The

investigator felt a need to conduct a study with a view to develop an information booklet

regarding care of child with mental retardation which will be helpful for the mothers to

promote the child all-round development and upbringing of the child with mental retardation

to the optimum level to lead life as an individual in the society with existing deficit.

6.2REVIEW OF LITERATURE

For the sake of convenience and better understanding the literature is grouped into

1. Causes of mental retardation and its management

2. Studies related to knowledge and attitude of mothers regarding care of child with

mental retardation

STUDIES RELATED TO CAUSES OF MENTAL RETARDATION AND ITS

MANAGEMENT:

Mental retardation refers to significantly subaverage general, intelectual functions

existing concurrently with deficits in adaptive behavior manifested during the develpmental

period. The etiology includes;

a) Genetic abnormalities – abnormal genes inherited from parents may cause mental

retardation

b) Problems during pregnancy – Like viral infections, exposure to radiation, iodine

deficiency during pregnancy

c) Problems at birth – Such as birth trauma to the head during labor

d) Health and environmental factors – Diseases like whooping cough and measles, extreme

malnutrition28

Management: Children with mild to moderate mental retardation are able to achieve

self-sufficiency and to lead happy fulfilling lives. To reach these goals they need appropriate,

consistent educational, vocational & family support. Individualized education and skills

training in special schools to promote independent living and job skills. The level of training

depends on the degree of retardation and family therapy helps the parents to deal with the

feelings of anger and guilt. A supportive warm home environment is essential to help the

mental retarded to reach their full potential28

Bundey, S.T Webb A. Thake and J. Todd, conducted study on 281 children (younger

than 18 years old in Netherlands) with unexplained cognitive delay. One third of diagnoses

were established based on clinical history (of pre-natal, peri-natal and post-natal period).

Medical history (previous diagnostic investigations, 3 generation pedigree with special

attention to the presence of mental retardation and congenital anomalies) and physical

examination provided essential clues for additional investigations and the reported frequencies

of diagnostic categories are remarkably variable. Exogenous causes vary from 18.6% to

44.5%, genetic causes 17.4% to 47%. Variations have been explained by differences in setting,

degree of mental retardation, patient selection criteria, study protocol.31

According to Birgitta, it has been estimated that genetic and environmental factors

include pre-natal exposure to toxic substance (e.g: alcohol & drugs) environmental

contaminants, radiation, infection, illness of the mother (e.g; rubella, cytomegalovirus). Study

revealed environmental factors – 25%, chromosomal – 28%, metabolic causes – 3% and other

unknown syndrome condition – 3% are responsible causative factors for mental retardation.

Therapeutic intervention: There is no drug intervention possible for most form of

mental retardation and therapy is limited to treatment of the anomalies or complications

accompanying the mental retardation. It is possible to boost the I.Q levels of mentally retarded

children by changing their environment by well – adapted programs including socialization,

physical development, language development and occupational therapies for mentally retarded

to attain a certain degree of autonomy. 32

STUDIES RELATED TO KNOWLEDGE AND ATTITUDE OF MOTHERS

REGARDING CARE OF CHILD WITH MENTAL RETARDATION:

Tizard and Grand (1980) Conducted survey and made a comparative study of 150

families whose mentally retarded children were institutionalized and 10 families having

retarded children at home. There was disturbed family functioning curtailment of social

contact in 15% and 1/3 of the another and health problem in those families who had retarded at

home.14

Anltey RM, Seindenfeld MJ (2002) Investigated mother’s knowledge on mental

retardation before receiving genetic counseling. Data were collected from 47 mothers of

children with mental retardation using a structured interview of 13-open-ended questions.

Results of the study documented the enormous variation of counselee’s knowledge about

causes of the mental retardation before genetic counseling and show that this is truly

associated with their educational background. Counselees with more than a high school

education knows about 60% of the genetic information pertaining to diagnosis of mental

retardation before genetic counseling, while those with less than a high school education know

only 23% of this information before counseling. 15

Shea V, Fowlera MG (1992) Studied, evaluated the findings of knowledge about

normal development and developmental disabilities of parents and pediatric residents. A 23

item questioner was administered to 91 parents of children who were being evaluated at the

division for disorder of development and learning (DDDL) and to 20 pediatric residents at the

University of North Carolina (UNC). The physicians in training was provided with an

additional 26 questions on development as well as a rating scale of personal comfort in

discussing 3 specific developmental disabilities with parents. However in both groups there

notable errors incorrect responses by 55% or more parents and or physicians were labeled

‘Common misconceptions’. 16

Chomicki S, Wilgosh L (1992) reported the parent’s knowledge on mental retardation

at department of psychology Canada. This preliminary study compared knowledge of parents

of children with moderate mental retardation and parents of children with severe mental

retardation on 4 health care variables, using a questioner format. Parents of children with sever

impairments and those with school aged children had significantly 50% knowledge regarding

symptoms of mental retardation and the hospitalization of those children, than parents of

children with moderate mental retardation or those with pre-school children. 17

Margalit M (1989): Studied ethnic difference in expression of shame feeling by

mothers of severely handicapped children. Shame on the part of parents of mentally

handicapped children. Has pronounced effects on child rearing practices. The aim of this study

was to compare expressions of shame of different ethnic groups in Israel. The attitudes of 23

western mothers and 26 eastern mothers towards their moderately and severely retarded

children were studied. Significant differences (P less than 0.05 – P less than 0.01) were found,

suggesting that the eastern mothers strongly expressed their shame where as the western

mothers felt ashamed to express it at all. The western mothers felt that the social norms that

reject feelings at shame and their own personal feelings of embarrassment were in conflict. 18

6.3STATEMENT OF THE PROBLEM

“A descriptive study to assess the knowledge and attitude of mothers regarding care of

mentally retarded children in selected mentally challenged schools in Bangalore” with a

view to develop an information booklet.

6.4OBJECTIVE OF THE STUDY:

1. To assess the knowledge of mothers of mentally retarded children regarding care of child

with mental retardation.

2. To identify the attitude of mothers of mentally retarded children regarding care of child

with mental retardation.

3. to find out the association between knowledge and attitude with selected demographic

variables

4. To develop information booklet for mothers regarding the care of child with mental

retardation.

6.5OPERATIONAL DEFINITIONS:

The below operational definitions are as per the present study.

1. Study – The pursuit of knowledge, as by reading, observation or research

2. Knowledge – Mothers awareness and understanding about care of child with mental

retardation.

3. Attitude – refers to the expression of feelings and thinking of mothers of mentally

retarded children regarding mental retardation.

4. Mothers – In this study it means a female parent with mentally retarded child.

5. Mentally retarded children – refers to the children who are been diagnosed as mentally

retarded by psychiatrist and attending a mentally challenged school.

6. Mentally challenged schools – The school provides comprehensive education and

training to mentally retarded children.

7. Information booklet – This provides information regarding care of mentally retarded

children which promotes self-learning

6.6ASSUMPTIONS:

The study is based on following assumptions

1. Mothers of mentally retarded children will have minimal knowledge regarding care of

mentally retarded children.

2. Information booklet will enhance knowledge of mothers regarding care of mentally

retarded child.

6.7HYPOTHESIS:

H(1) – There is a significant relationship between knowledge of mothers of mentally retarded

children and selected demographic variables.

H(2) - There is a significant relationship between attitude of mothers of mentally retarded

children and selected demographic variables.

H(3) – There is an association between knowledge and attitudes with demographic variable.

6.8DELIMITATION OF THE STUDY:

1. Mothers who take care of mentally retarded children

2. Mothers of mentally retarded children willing to participate in the study

3. Mothers of mentally retarded children who are available during the period of data

collection

4. Mothers of mentally retarded children who can speak Kannada and English.

7. MATERIALS AND METHODS

7.1 SOURCES OF DATA

Data will be collected from mothers of mentally retarded children from selected mentally

challenged schools in Bangalore (Urban)

7.1.1 RESEARCH DESIGN:

Descriptive research design

7.1.2 SETTINGS:

Study will be conducted in a selected mentally challenged school in Bangalore (Urban).

7.1.3 POPULATION:

Mothers of mentally challenged children in selected schools in Bangalore (Urban)

7.2 METHODS OF DATA COLLECTIONS

7.2.1 SAMPLING PROCEDURE:

Purposive sampling

7.2.2 SAMPLE SIZE:

Consists 50 mothers having mentally retarded children.

7.2.3 INCLUSIVE CRITERIA

1. Mothers of mentally retarded children willing to participate in the study

2. Mothers of mentally retarded children who can speak and understand English,

Kannada and Hindi

7.2.4 EXCLUSIVE CRITERIA:

1. Mothers of mentally retarded who are not willing to participate in the study

2. Mother of mentally retarded children who are not present at the time of data collection

7.2.5 INSTRUMENTS INTENDED TO BE USED:

Based on the objectives of the study it consists of

Part I

a) Demographic variables

b) Structured knowledge questioner to assess the knowledge

Part II

a) Attitude scale to assess the attitude

Part III

a) Information booklet regarding care of mentally retarded children

7.2.6 DATA COLLECTION METHOD

Data will be collected from the mothers of mentally retarded children by administering

questioner

7.2.7 PLAN FOR DATA ANALYSIS:

Data will be analyzed by using descriptive statistic analysis and inferential statistic analysis

7.3 DOES THE STUDY REQUIRE INVESTIGATION OR INTERVENTION TO

BE CONDUCTED ON PATIENTS OR OTHER HUMAN OR ANIMALS?

Yes, the study will be conducted on the mothers with mentally retarded child

7.4 HAS ETHICAL CLEARANCE BEEN OBTAINED

Permission will be obtained from the research committee of Rajiv Gandhi College of

nursing

Informed consent will be obtained from the subject who is willing to participate and

also confidentiality will be assured to the samples.

Permission from the concern school head-masters/Chairmen’s of selected mentally

challenged schools in Bangalore (Urban)

8. LIST OF REFERENCES

1. http://en.wikipedia.org/wiki/mental_retardation

2. www.thearc.org

3. www.merksource.com

4. www.medind,nic.in

5. www.pubmed.com

6. Baird PA and Sadovnick AP. Mental retardation in over half-a-million conservative

live birth; an epidemiological study American journal of mental deficiency. 1985 Aug;

68(4) 323-330.

7. Batshaw ML and Perret YM. Children with disabilities. Baltimore; Brooker

Publishing Co; 2000

8. Mayes LC Child mental health with families on medically compromised infants. Child

adolesc psychiatric. Clin N Am.2003 Jul; 12(3) : 401-21

9. Tregold and Soddy. A text book of Mental Retardation, 9th edition. Williams wood and

co. Baltimore; 1983

10. Girimaji R, Satishchandra. Early diagnosis and management of mental retardation.

Indian journal of psychological medicine 1990 July; 13(2): 209-213

11. Channabasavanna SM, Bhatti RS Leny R and Prabhu. A study on attitudes on

parents towards the management of mentally retarded children. Child psychiatry

quarterly. 1985 April; 44(4): 44-46

12. American association on Mental retardation; definition, classification, and system of

supports. Washington, D.C 1985.

13. Hauser-Gram P, Warfie ME. Children with disabilities. Monogr Social research child

development 2001; 66(3); 115-26.

14. Tizard and Garad JC. The mentally handicapped and their families – A social survey.

Oxford university press. 1980; 10(2) : 107-12

15. Antley RM, Seidenfedl MJ. Parents knowledge before genetic counseling for mental

retardation Am J med genet.2002; 2(4): 357-64

16. Sheav, Fowler MG parental and pediatric trainee knowledge of development J Dev

Behav pediatric. 1992 Mar; 4(!) ; 21-5

17. Chomicki S, Wilgosh L health care concerns among parents of children with mental

retardation child health care. 1992 fall; 21(4): 206-1

18. Margalit M Ethnic difference in expression of feeling by mother of severely

handicapped children Child health care Dev. 1989 April; 30 (2) : 25-9

19. Park JE, Park. K, Text book of preventive and social medicine. 17 th edition. jabalpur;

banarasi dass publication; 2005

20. Gail wiscars stuart. Psychiatric Nursing 5th edition; Masby publisher: 1995

21. Ehler’s krischief CH, Prothero C. An introduction to mental retardation, 2nd edition

Charles E. Merill Publication; 1987

22. Micheal Gelder, Richard Mayer. Philip Cowen. Text book of Psychiatry 4th edition

oxford; university press; 2006.

23. Singh PD, Goyal L, Pershad D, Psychosocial problems in families of disabled

children. Br J Med psychosocial. 1990 June; 63(pt2); 173-82.

24. Rimmerman. A, Dudevani. J. Parents of children with sever mental retardation,

stress, family resources, normalization, Res Dev Disable 1996 Nov-Dec; 17(6); 487-

494.

25. Wischar MC, Bidder RT, Gray OP. Parental response to their developmentally

delayed children child care health development. 1995 Nov-Dec; 6(6); 361-76.

26. Retzlaff R, Horniq S, Maller B, Gitta RA. Study on families with children with

mental and physical disabilities. Prax psychol kinder psychiatric. 2006; 55(1); 36-52

27. Apell, Melville J, William, Fishell. Change in attitude of parents of mental retarded

children affected through group counseling. American Journal of mental deficiency.

1984 April; 68(4); 807-812.

28. Julian, John N “mental retardation” in psychiatry update & board preparation edited

by Thomas A. stern, MD, and John B Herman, M.D New York; Mc Graw Hilli, 2000

29. Indian Journal of Psychiatry (2008) Volume-50, page (21-22)

30. Laxminarayana Ibrahim F, Venkataramanan P, Kamal KG, Knowledge and attitude

and practice on mother of children with mental retardation. Indian pediatric 2005.

sep; 28(9): 997-1000

31. Bundey, S.T Webb, A Thake and J. Todd. 1985. A community study of severe

mental retardation in the west midlands and the importance of the fragile x-

chromosomes in its etiology

32. Birgitta Winneepenninckx, Ph.D, dept of medical genetics, University of Antwerp,

universiteisplein, 1, 2610, Antwerp, Belgium.

9 Signature of the candidate

10 Remarks of the Guide This study helps to know about knowledge

and attitude of mothers regarding care of

mentally retarded children. This study is

appropriate.

11 Name and designation

(In Block Letters )

11.1 Guide

MRS. PREETI MATHEW

ASSO. PROFESSOR

11.2 Signature

11.3 Head of the Department MRS. PREETI MATHEW

ASSO. PROFESSOR

11.4 Signature

12 12.1 Remarks of the

chairmen and principal This study is feasible to conduct

13 Signature