“A STUDY TO ASSESS THE KNOWLEDGE REGARDING CONSANGUINEOUS MARRIAGES AND ITS GENETIC EFFECTS AMONG YOUNG ADULTS WITH A VIEW TO DEVELOP AN INFORMATION GUIDE SHEET AT SELECTEDDEGREE COLLEGESIN TUMKUR”.
PROFORMA FOR REGISTRATION OF SUBJECT FOR THE DISSERTATION
SUBMITTED BY
MS. SOUJANYA JAYANANDA PUJAR
OBSTETRICS AND GYNAECOLOGICAL NURSING
SRI SIDDHARTHA COLLEGE OF NURSING
AGALAKOTE, B. H. ROAD
TUMKUR
RAJIVGANDHIUNIVERSITY OF HEALTH SCIENCES
BANGALORE, KARNATAKA
PROFORMA FOR REGISTRATION OF SUBJECTS FOR DISSERTATION
1. / NAME OF THE CANDIDATE AND ADDRESS / MISS. SOUJANYA JAYANANDA PUJARI YEAR M.Sc.NURSING
SRI SIDDHARTHA
COLLEGE OF NURSING,
AGALAKOTE,TUMKUR.
2. / NAME OF THE INSTITUTION / SRI SIDDHARTHA COLLEGE OF NURSING, B.H.ROAD,
TUMKUR
3. / COURSE OF THE STUDY AND SUBJECT / DEGREE OF MASTER OF NURSING
OBSTETRIC AND GYNAECOLOGICAL NURSING
4. / DATE OF ADMISSION / 15 JUNE 2009
5. / TITLE OF THE TOPIC / A STUDY TO ASSESS THE KNOWLEDGE REGARDING CONSANGUINEOUS MARRIAGES AND ITS GENETIC EFFECTS AMONG YOUNG ADULTS WITH A VIEW TO DEVELOP AN INFORMATION GUIDE SHEET IN SELECTED DEGREE COLLEGES AT TUMKUR.
6. BRIEF RESUME OF THE INTENDED WORK
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
6.1 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.
6.2REVIEW 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 mahhadCity, 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 disordersof 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 modelas 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 attitudes8
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 inShindoli village of District Belgaumby 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 resultsusceptibility 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 NationalCenter 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
6.3 STATEMENT OF THE PROBLEM
“A Study To Assess The Knowledge Regarding Consanguineous Marriages And Its Genetic Effects Among Young Adults With A View To Develop An Information Guide Sheet At Selected Degree Colleges In Tumkur”.
6.4 OBJECTIVES
1)To assess the knowledge regarding the consanguineous marriage and its genetic effects among young adults.
2)To determine the association between knowledge of young adultswith selected demographic variables.
6.5 OPERATIONAL DEFINITIONS
1)Assess:
It refers to gathering information regarding the
consanguineous marriages and its genetic effects.
2)Knowledge:
It refers to response of young adults to the question stated
in the questionnaire regarding consanguineous marriages and it
genetic effects.
3)Consanguineous marriages:
It refers to relationship between two people who share a
common ancestor or blood.
4)Genetic effects:
It refers to any chromosomal disorder which is
transmitting from one generation to other.
5)Young adults:
It refers to group of people both male and female who all are
studying in selected degree colleges at Tumkur,between the age group of
20-25 years.
6)Informational guide sheet:
It refers to giving educational material which is easily
understandable and helps to improve awareness of consanguineous
marriages and its genetic effects.
6.6 ASSUMPTIONS
The study assumes that
1.Consanguineous marriage is more common and it may cause genetic disorders.
2. The young adults may not be aware of genetic effects caused by consanguineous marriages.
3.Information guide sheet may improve the knowledge regarding consanguineous marriages and its effects.
6.7 RESEARCH HYPOTHESIS
Hi – There will be significant association between the knowledgeon consanguineous marriages and its effects with the selected demographic variables of young adults.
6.8DELIMITAIONS.
This study is limited to
- The unmarried young adults both males and females between the age group of 20-25 years.
7. MATERIALS AND METHODS OF THE STUDY
7.1SOURCE OF DATA
Data will be collected from young adults who are studying in selected degree colleges in Tumkur.
7.1.1RESEARCH DESIGN
Descriptive study design.
7.1.2VARIABLES OF THE STUDY
i. STUDY VARIABLE
Knowledge regarding consanguineous marriages and its effects.
ii. DEMOGRAPHIC VARIABLE
Age, sex, education, occupation, religion, economic condition and informational source.
7.1.3STUDY SETTING
The study will be conducted at selected degree colleges in Tumkur.
7.1.4POPULATION
Population of the present study will be comprised of young adults studying in selected degree colleges in Tumkur.
7.2METHOD OF DATA COLLECTION
Data will be collected by direct administration of planned structured questionnaires regarding consanguineous marriages and its effects.
7.2.1SAMPLING TECHNIQUE
Simple random sampling technique is used to select the sample of young adults.
7.2.2SAMPLE SIZE
Sample size of the study is 100 young adults.
7.2.3 CRITERIA FOR SELECTION OF THE SAMPLE INCLUSION CRITERIA
- INCLUSION CRITERIA
a)Young adults between the age of 20-25 years.
b)Young adults both male and female of same age group.
- EXCLUSION CRITERIA
a)Young adults who are not willing to participate.
b)Young adults who are not able to speak kannada or English language
7.2.4 INSTRUMENT
A planned structured questionnaire will be prepared in such a way it consists of two parts.
Part I:
It includes demographic data of the young adultssuch as age, sex, education, religion and parental education.
Part II:
It includesassessment of knowledge regarding consanguineous marriages and its effects.
7.2.5 METHOD OF DATA ANALYSIS AND PRESENTATION
Data collected on knowledge regarding consanguineous marriages and its effects will be analyzed to answer the objective through following statistical techniques.
i)Frequency and percentage analysis used to describe the demographic characteristics of young adults being studied under research.
ii)Mean standard deviation and mean score percent will be used to assess the knowledge of young adults regarding consanguineous marriages and its effects.
iii)Chi-Square test will be used to find out the association between theknowledge with selected demographic variables.
7.2.6PILOT STUDY
A pilot study will be conducted by selecting 10 young adults to assess the feasibility of the main study.
7.2.7PROJECTED OUTCOME