“A study to assess the awareness regarding Consanguineous

Marriages among the adults in a Reproductiv age group in

Metropolitian area”.

BY

Mrs. Deepali nitin gaikwad

Ms. Skylert Stanislaus fernandes
Mr. babasaheb nivrutti karale
MR. NILESH SAMADHAN HUDEKAR

Under the Guidance of

Dr. nilima v. sonawane

HOD community health nursing department

Dr. Aparna sankhe

Hod ob gynac department

INSTITUTE OF NURSING EDUCATION, MUMBAI- 08.

2014.
 1. Title –

“A study to assess the awareness regarding Consanguineous Marriages

among the adults in a Reproductiv age group in Metropolitian area”.

2. INTRODUCTION

“It is better to get wisdom than gold, to choose knowledge rather than silver”

Linguistically, consanguinity is a term that is derived from two Latin words "con"
meaning common, or of the same and "sanguineus" meaning blood, hence, referring to
a relationship between two people who share a common ancestor or blood. In other
words, consanguineous marriage refers to unions contracted between biologically-
related individuals.

Although a high proportion of marriages in Asia are consanguineous (i.e.

contracted between close biological relatives), with some notable exceptions, there is a
death of demographic and anthropological literature on the association between
consanguinity and fertility1

The International Conference on Population and Development (ICPD), which

met in Cairo in 1994, and the Fourth International Conference on Women, in Beijing in
1995 endorsed the rights of young people to reproductive health information and
services. Young people face a variety of reproductive health risks . Young people may
know little about reproductive health and may have incorrect or misleading information
about fertility and contraception.2

The incidence of consanguineous marriages is very high in the Pattusali

population. First cousin marriages are preferred mostly. The consanguinity effects
obtained in this population are also mostly confined to these marriages only. The
inbreeding coefficient for the population is 0.02997. The consanguinity on fertility,
mortality and morbidity.2

Consanguineous marriage is customary in many societies, but leads to an increased

birth prevalence of infants with severe recessive disorders. It is therefore often proposed
that consanguineous marriage should be discouraged on medical grounds. However,
several expert groups have pointed out that this proposal is inconsistent with the ethical
principles of genetic counselling, overlooks the social importance of consanguineous
marriage and is ineffective.3

3. NEED FOR THE STUDY

Approximately 3-5% of all live newborns have a medically significant birth defect.
The recent report by March of Dimes estimated birth defects to be >69.9/1000 live
births in most Arab countries, as opposed to <52.1/1000 live births in Europe, North
America and Australia. Lower observed rates of 7.92/1000 births and 12.5/1000 births
were registered in the UAE and Kuwait, respectively .In Oman, among 21,988 births, 24.6
per 1000 births had major malformations. 3

Obstetric complications like PIH and antepartum haemorrhage were more

among non-consanguineous (8.3% and 0.93%) as compared with consanguineous
(7.18% and 0.55%). However, the difference was not statistically significant5(2.8%)
congenital malformations were observed in consanguineous group and 4 (1.25%) in the
nonconsanguineous group (p>0.05). The congenital malformations were - congenital
cataract (n=2), bifid tongue (n=l), cyanotic heart disease (n=3), cleft palate (n=l),
hydrocephalus (n=2)..Only 7.6% of the women were aware about the hazards of a
consanguineous marriage.
 Worldwide, some 1,000 million people live in countries where 20 to more than
50% of marriages are consanguineous, and large migrant communities from these
regions are now resident in Western Europe, North America and Oceania. 4

Estimates of "relative risks" and "attributable risks" are presented for two Brazilian
regions with the lowest (F = 0.00030) and the highest (F = 0.00395) inbreeding levels of
the country, and for the whole country (F = 0.00088). The abolition of all
consanguineous marriages (from second cousins up to and including uncle-niece/aunt-
nephew marriages) in Brazil would eliminate only about 0.22, 3.05, and 0.65% of the
"total damage," respectively. "Total damage" is defined as including abortions,
miscarriages, stillbirths, infant-juvenile mortality (up to the age of 20 years), and
anomalies in the survivors. The reduction of prenatal damage would be 0.11, 1.46, and
0.31%, and that of postnatal damage would be 0.49, 6.65, and 1.36%, respectively. 5

From the above studies and the outcomes of survey conducted by the
researcher it was felt that there is a need to conduct a study which could increase the
knowledge of young adults regarding consanguineous marriages and their genetics
effects.

4.HYPOTHESIS
Null Hypothesis
H0 There will be no significant association between the awareness on consanguineous
marriages and its effects with the selected demographic variables of young adults.
 RESEARCH HYPOTHESIS

H1 – There will be significant association between the awareness on consanguineous

marriages and its effects with the selected demographic variables of young adults.

5. REVIEW OF LITERATURE

“Literature review is a critical summary of research on a topic of interest, often prepared

to put a research problem in context or as the basis for an implementation project”

Polit and Hungler

1. Consanguinous marriage are the traditionally favoured in most asian and African
countries specially in muslim countries. A study was conducted regarding youth’s
knowledge ,behavior,and attitude towards consanguineous marriages. The aim of the
study was to determine the frequency of consanguineous marriages in mahhad City,
Khorasan Province,Iran. Direct questionnaire including 50 open and closed questions
were administered to 500 young people who were selected during a quota sampling.
The result of this study revealed that most of the youth did not have favourable
information about the consequences of genetic disorders of inbreeding. 6

2. Semi-structured interviews were conducted with 65 Israeli subjects who received

genetic counselling while considering marriage to a close relative, 40 subjects married to
a close relative who did not receive pre-marital genetic counselling, and 125 controls
married to a nonrelative and never having considered marrying a relative. It was found
that 72% of the consanguineous couples who received pre-marital genetic counselling
proceeded with their plans and married their relative; 86% of them reported that the
counselling influenced their final decision to some degree. Compared to the
noncounselled consanguineous group, consanguineous couples who received pre-
marital genetic counselling had fewer children, estimated their genetic risk as lower but
its subjective significance as higher, and perceived genetic disorders as more severe. The
implications of these results are discussed from both theoretical and practical
standpoints.7

3. This study was done to evaluate the level of knowledge among adolescents about the
issues associated with consanguinity, because consanguineous marriages are widely
practiced among Arabs, and are associated with an increased incidence of congenital
malformations. The researcher carried out a national survey among 2933 students aged
15-16 years within the Israeli Arab community. Variables considered were gender,
religion, location of residence, parents' level of education, number of siblings, whether
their parents' marriage was consanguineous, whether any family members had
congenital malformations, and the respondents' religious beliefs and traditions.
Association among those variables and the level of knowledge that were statistically
significant by univariate analysis were also assessed in a multivariate model as a result
one-quarter of the students (24.5%) demonstrated a high level of knowledge, whereas
29.7% had a moderate level and 45.8% a low level. Overall, 81.5% knew that
consanguinity was associated with a high incidence of congenital malformations,
although only half of these (50.0%) knew what congenital malformations were and
which were associated with consanguinity. The variables significantly associated with a
low level of knowledge were gender, level of parents' education, consanguinity between
the students' parents, and extreme religious attitudes 8

4. This study was conducted by interviewing 100 women who had married a relative and
100 other women of the same age, religious affiliation, and socioeconomic status, but
who were not related to their husbands. Both women were selected from a hospital
setting in Beirut, and were questioned about their outlook on consanguineous
marriages, their awareness of the genetic consequences of consanguinity, and their
relationships with in-laws. In general, the women in consanguineous marriages were
more favorably inclined than the matched women to marriages between relatives;
however, about half of each group would advise their son/daughter to marry his/her
cousin. Awareness of the genetic consequences of consanguinity was wide-spread
among the respondents, although the women who had married a relative were reluctant
to express it. These women also reported better relationships with in-laws, which may
be considered as a social benefit derived from consanguineous marriages. Based on the
above findings, recommendations are made regarding the content of a public health
educational program.9

5. This cross sectional study was done in Shindoli village of District Belgaum by
interviewing 500 married women residing in the rural field practice area. As a result the
prevalence of consanguinity was found to be 36%. Majority of the marriages were
between first cousins (54.44%). Foetal loss was seen to be significantly higher in the
consanguineous group as compared to non-consanguineous group (p<0.001). No
significant effect of consanguinity was observed on the number of stillbirths, neonatal
mortality, obstetrical complications and congenital malformations. Only 7.6% of the
women were aware about the hazards of a consanguineous marriage.

6. This study was done to assess the risk for birth defects in the offspring of first-cousin
matings has been estimated to increase sharply compared to non consanguineous
marriages.In the population studied in North-Eastern France a consanguineous mating
was known in 1.21% of the cases with congenital anomalies, vs. 0.27% in controls, (p <
0.001). The frequency of the malformations recorded paralleled the degree of
consanguinity: out of 89 malformed children, 51 were seen in first-cousins mating (10.3
times more frequent than in offspring of non consanguineous couples), 17 in second-
cousins marriages and 18 in more distant relatives mating. Three were uncle-niece
marriage. Excluding known mendelian conditions these numbers were 73, 36, 17 and 17
respectively and the corresponding relative risk were 3.68, 3.01, 3.41 and 4.89
respectively. Therefore there is a negative dose-response effect between level of
inbreeding and risk of congenital malformations. Consanguineous mothers were more
often pregnant than non consanguineous mothers (p < 0.01) and they had more
stillbirths than non consanguineous mothers. These results show that consanguinity is
still a factor of birth defects and they must be taken into account for genetic counseling
of inbred marriages, in developed countries. 10

7. This study was done to assess the knowledge and attitudes of Bedouin schoolchildren
and their teachers towards a community-based, premarital carrier-matching program
aimed at reducing the prevalence at birth of genetic diseases. A questionnaire was
presented to 61 teachers and 40 schoolchildren as part of guided interaction in small
groups, conducted in Bedouin schools between 1999 and 2001. As a result susceptibility
as well as knowledge of genetics were found to correlate with a positive attitude
towards the genetics program among both teachers and pupils. However, pupils had a
lower knowledge index as compared to teachers, and their attitudes were slightly less
positive. The difference between teachers and pupils is discussed in the context of the
latter's acculturation, which contradicts tradition and parental authority and can
generate ambivalence. Attitudes are further discussed in the context of the Health Belief
Model and the complex interplay of tradition, Islam, cousin marriage and biomedicine. 11

8. A Study was conducted to assess the consanguinity and birth defects in Jerusalem
population. To support ongoing studies of cancer and of psychiatric disease, we studied
relationships of consanguinity to 1,053 major birth defects in 29,815 offspring, born in
1964-1976. To adjust for confounding variables (geographic origin, social class and
hospital), we constructed logistic regression models, using GEE to take into account
correlations between sibs. Odds ratios (ORs) and 95% confidence limits were estimated
in comparison to a reference group of offspring with grandfathers born in different
countries. As a result 10.1% of offspring having consanguineous parents, the adjusted
OR for major birth defect was 1.41 (1.12-1.74). Offspring of marriages between uncles-
nieces, first cousins and more distant relatives showed adjusted ORs of 2.36 (0.98-5.68),
1.59 (1.22-2.07) and 1.20 (0.89-1.59) respectively. For descendents of grandfathers born
in the same country, but not known to be related, the OR was 1.05 (0.91-1.21); these
showed increased risk associated with ancestries in Western Asia. A strong association of
consanguinity with poverty and low education points to the need to avoid exposure to
environmental hazards in this families.12

9. A study was done to define the specific categories of genetic disorders associated with
consanguineous marriages. Etiological categories and consanguinity rates were studied
among 623 families with genetic syndromes, congenital anomalies or mental
retardation, or both, seen at the National Center for Diabetes, Endocrinology and
Genetics for the period August 2002 to August 2006. Comparisons were made for first
cousin marriage rates in the study group and that for the general population. As a result
First cousin marriages constituted 69%, 22% and 41.7% of marriages among families
with autosomal recessive conditions, dominant, X-linked and chromosomal conditions
and sporadic undiagnosed conditions respectively. The differences in rates of first cousin
matings versus non-consanguineous matings were highly significant when comparing
known figures in the general population with group 1 and 3, but not significant with
group 2. Two messages to the public and health care personnel regarding consanguinity
can be derived from this study. The first message is that among genetic disorders, only
autosomal recessive disorders are strongly associated with consanguinity. The second
message is that approximately 30% of sporadic undiagnosed cases of mental retardation,
congenital anomalies and dysmorphism may have an autosomal recessive etiology with
risks of recurrence in future pregnancies.13
10.

STATEMENT OF THE PROBLEM

 ”A STUDY TO ASSESS THE AWARENESS REGARDING CONSANGUINEOUS MARRIAGES
AMONG THE ADULTS IN A REPRODUCTIV AGE GROUP IN METROPOLITIAN AREA”.

6. OBJECTIVES

1) To assess the awareness regarding the consanguineous marriage among

young adults.
2) To determine the association between awareness of young adults with
selected demographic variables.

7. METHODOLOGY
I. Research Approach – Qualitative research approach.
II. Research design – research design.

Study Setting –
Duration of the study –
III. Population - Study population consist of
IV. Target population –
V. Accessible Population –.

VI. Sample –

VII. Sample size-.

VIII. Sampling technique –simple random sampling.
IX. Methods of Selection of Study Subject
A. Inclusion criteria- Adolescents those who are ;
1. In the age group 20 to 45 years.
2. Who could understand Marathi, Hindi or English.
3.. Who are present at the time of data collection

B. Exclusion Criteria- Adolescents those who;

1. Participated in pilot study.
2. Are not willing to participate.

C. Subject Withdrawal Criteria -

Subjects who are participating in study can withdraw any time during study if they want

OPERATIONAL DEFINITIONS

1) Assess:

It refers to gathering information regarding the

consanguineous marriages and its genetic effects.

2) Consanguineous marriages:

It refers to relationship between two people who share a

common ancestor or blood.

3) Adults:

It refers to group of people both male and female who all are
in the age group of 20-45 years.

4) Metropolitan Area
It refers to metro area consisting of a densely populated urban area
surrounding territories sharing industries, infra structure housing etc.

ASSUMPTIONS

The study assumes that

1. Consanguineous marriage is more common.
2. The young adults may not be aware of consanguineous marriages.
DELIMITAIONS.
This study is limited to
1. The unmarried young adults both males and females between the age group of 20-
45 years.

VARIABLES
INDEPENDENT VARIABLE

DEPENDENT VARIABLE

DEMOGRAPHIC VARIABLE
Age, sex, religion, stream.

EHICAL ASPECTS –
1. The research proposal will be approved by the ethical committee.
2. The permission will be obtained from concerned authority at the time of data
collection.
3. Informed written consent will be obtained from the study samples.
4. Information will be handled in such way that confidentiality and anonymity are
maintained.
5. Freedom to withdraw from the study at any time will be assured.

SPECIFICATION ON STUDY INSTRUMENTS/DATA COELLCTION TOOL

METHODS OF DATA COLLECTION-
Self-structured knowledge questionnaire regarding awareness of consagenious
marriages will be prepared by the investigator to collect data from young adults.

PART 1
Selected demographic variables such as age, religion, education, stream, occupation,
residential area.
PART 2
Knowledge questionnaire regarding genetic disorders includes –
1. Questions related to basic concepts of genetic disorders.
2. Questions related causes genetic disorders.
2. Questions related to Downs syndrome, thalassemia, and sickle cell anemia.
3. Questions related to prevention of genetic disorders.
.
TESTING OF TOOL-
Validity-The Content and construct Validity of a research tool will be done by experts
from the field of community health nursing , nursing and expertise in Medical fields.
Reliability – Reliability is done by Test and Retest method
Sources of data collection
Data will be collected from the Primary sources (Adolescents) at the selected districts.
Methods of data collection:
1. Researcher will visit the research area and necessary permission will be taken for
the research study from concerned authorities.
2. Informed consent will be taken in English language
3. Researcher will explain the purpose of study and pre-test will be administer to
adolescents doubts were clarified in relation to pretest.
4. On an average 30 min to complete questionaries’ and will be taken by the researcher
5.Researcher will explain the date and time of posttest .As per prefix date and time
researcher will again visit the study area and administer post test on 8 th day fallowed
by structured teaching programme .
6.Same process of data collection is fallowed till the desired number of sample size is
achived

7. At the end researcher will extend his /her thanks to community health workers .
MANAGEMENT AND ANALYSIS PROCEDURE
Data preparation involves logging or checking the data in for the correctness, entering
the data into the computer, transforming the data, and Documenting.
Data preparation involves the following step-
Compilation - Gathering together data for collected in the manner that a process of
analysis can best initiated.
Editing - Checking the Gathering data for accuracy, utility and completeness.
Coding - Is the important for Analysis as numerous replies can be reduced to small
number of classes through coding.
Classification - The classification of data is necessary, as many researches result in large
number of raw Data which must be reduced to homogeneous groups.
Tabulation - Arrangement of data in rows and columns and it should be done in concise and
logical order.
Tabulation is the first step before data can be use and graph will be prepared for the
Easy understanding.
PILOT STUDY
Plan to conduct pilot study on 10% sample prior to the actual study.
Data analysis
A) Descriptive Analysis

Frequencies, Percentages, Mean,Mode,Median and Standard Deviation will be used

for the data analysis.

B) Inferential statistics
Paired t- test will be used to find the significance of the pre- test and post test.
ANOVA test will be used to find out the association between the variables.
SCOPE OF STUDY
1. The study will help to assess the knowledge about genetic disorders.
2. The adolescents will be well aware about genetic disorders.
3. The study will helpful in reduction of further serious genetic consequences.
4. It can included in evidenced based Practices.
5. This study finding will be used by health department for planning in service
programme regarding reduction in genetic burden of diseases.
6. The same study can be conducted for large samples.
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