KNOWLEDGE AND ATTITUDES OF THE SOUTH AFRICAN PUBLIC WITH REGARD TO CONGENITAL AND INHERITED DISORDERS

’n Gemeenskapsgesentreerde genetiese diens is in 1975 onder die Afdeling Genetiese Dienste van die Departement van Gesondheid en Welsyn begin, ’n Reeks kennisen houdingstudies is deur die RGN onderneem om ’n basislyn van publieke bewustheid van genetiese toestande te bepaal en om enige veranderinge, wat moontlik aan die voorligtings programme van die Afdeling Genetiese Dienste toegeskryf kan word, te monitor. ’n Dramatiese verbetering in die kennis en houdings in die Blanke bevolkings­ groep na drie jaar kan waarskynlik aan die programme van die afdeling toege­ skryf word. Die hoeveelheid blootstelling van Indiërs, Kleurlinge en Swartes aan die voorligtingsprogramme was geag te min te wees ten tye van die ondersoek om enige verandering te bepaal. Voor blootstelling aan voorligtingsprogramme het omtrent 30% van die Blanke ouers met geafTekteerde kinders niemand oor die risiko vir verdere kinders geraadpleeg nie. Drie jaar later het die syfer na 7 % gedaal — wat ’n oortuigende indikasie van ’n verandering in kennis is. Opvolgstudies word onderneem om die invloed van voorligtingsprogramme op ander bevolkingsgroepe te bepaal. Die aanvanklike en opvolgstudies het almal getoon dat al die groepe graag meer kennis oor kongenitale en oorerflike afwykings wil bekom. Swartes en Kleurlinge het die grootste belangstelling getoon. Daar is ook gevind dat radio en/of televisieprogramme, tydskrifte en koerante baie effektief is om ’n algemene kennis van genetiese afwykings en die beskikbare dienste te kweek. JOHANN OP T HOF,*


INTRODUCTION
In the U .S.A .and most European countries the establishment of com munity based genetic services has emerged only within the last decade (1).There has been a ten dency for the relevant government departments to assume partial or complete responsibility for these services*2*.In South Africa such a community based genetic service under direction of the Genetic Ser vices Division of the D epartm ent of Health and W elfare was conceptua lised in 1971 and put into operation in 1975 (3).
Education and training comprises a m ajor component in the organis ational and operational structure of the Genetic Services Division since no educational m aterial on congeni tal and hereditary disorders for the public or health personnel was available at the time of inception of this division.Furtherm ore, there was little evidence of a general awareness of the subject prior to 1975.
Since 1975 several surveys on knowledge and attitudes of the public have been conducted by the Human Sciences Research Council (HSRC) at the request of the G en etic Services Division (see table 1).The purpose was to establish a base line of public awareness about ge netic disorders and to monitor any change in knowledge and attitudes in subsequent years which might re flect the impact of genetic services.
It was also felt that assessment of the knowledge and attitude status of the public would give some indi cation of the expected background of potential counsellees.This is shown to be a determ ining compo nent in the genetic counselling encounter (4).
An analysis of a pilot knowledge and attitude study of White women in 1975 (5) confirmed the anticipated lack of awareness of genetic disor ders and the general misconception of the public regarding causes, pre vention possibilities, and value of counselling for genetic disorders.Above all the need for further in formation and facilities for genetic services were clearly indicated'6*.This paper examines the results of the 1975 and subsequent surveys in as far as they are comparable.
A brief outline of the nature and scope of the educational and train ing programmes is given to which the results of the knowledge and at titude studies could possibly relate.

EDUCATION AND TRAINING PROGRAMMES
The objectives of the education and training program mes are to: * create an awareness amongst the public and health professionals; and * assist with the training of health professionals.
Education and training are facili tated by lectures and courses on human genetics for health profess ionals and lay groups and the pro duction of educational m aterial for various target groups.
The first brochures on genetic disorders were issued in 1975 and thereafter the num ber has steadily increased so that at the time of writ ing (1982) thirteen titles were avail able.Two posters for the public and four for health professionals were released on a limited scale in 1980.Caution was exercised not to create excessive awareness such that the service facilities would not be able to cope with the increased demand.

METHOD (HSRC-surveys)
The findings of the surveys on knowledge and attitudes towards genetic disorders which are dis cussed here (see table 1), were ob tained in the course of multipurpose surveys conducted by the Human S c i e n c e s R e s e a r c h C o u n c i l Information on the knowledge and attitudes of W hites, Coloureds and Indians was obtained by means of pre-structured questionnaires in the years listed in table 1.In each survey the sample was as far as possible re p re s e n ta tiv e of the national population of persons above the age of 15 years.Analyses were done in terms of the following variables: language, educational levels, age, sex, income, residential area, province and marital status.
According to the latest (1980) census figures the R.S.A. popula tion comprises the four main sub population groups shown in table 2.
Because of planned campaigns by Genetic Services for 1979 and 1980 on Down syndrome and neural tube defects respectively, the know ledge and attitude survey conducted in those years related to these dis orders only.All the other surveys dealt with knowledge and attitudes towards genetic defects in general.
For the survey amongst Blacks (survey No. 5) a different strategy was followed.Questionnaires were completed during interviews con ducted by family planning motiva tors.Analyses were done in terms of the following variables: health region, area of residence, province, ethnic group, age, marital status, home language and educational level.
Certain limitations preclude the comparison of the different surveys in all respects.In the multipurpose surveys elaborate questionnaires were employed and only a limited number of questions on genetic dis orders were permitted.Cultural differences precluded the use of identical questions for Whites and Blacks.Experience gained in the initial surveys dictated the nature and scope of questions in the subse quent surveys.Therefore the vari ous surveys can only be compared with regard to some questions.The remaining data is nevertheless grouped in main categories for indi vidual consideration.
In all the surveys, respondents were asked whether, to the best of their knowledge, they had had chil dren with congenital or hereditary disorders, and if so, whether they were concerned about the risk of re currence.

FINDINGS
Knowledge and attitudes with re gard to agents which are considered dangerous to the fetus in iitero to the extent that a congenital defect could result are given in table 3.
The degree of knowledge of gen etic disorders, or genetic counselling where it was specifically asked, is depicted in table 4.
In table 5 the medium through which knowledge on genetic dis orders was obtained is shown.
Parents of affected children ex pressed concern about the risk of recurrence and various sources were consulted in this regard as shown in tables 6 and 7.
Advice given to affected parents and the actual action taken (Blacks only) with regard to further chil dren is summarised in table 8.
Interest expressed in obtaining further information on genetic dis orders is shown in table 9.
Only in the 1980 survey amongst Whites was knowledge of services provided by the D epartm ent of Health and W elfare, addressed (table 10).

Agents affecting the fetus
In general the W hites were to some extent aware in 1975 of the danger ous factors for an unborn child with the majority indicating unpre scribed drugs, consanguinity and German measles as the more dangerous factors.Advanced ma ternal age, drinking of alcohol and smoking were regarded as less dangerous (table 3).
In the survey amongst Indians (1977) the ability to distinguish be tween harmful and non-harmful factors for an unborn child is not evident.Aeroplane travel, dancing, eye strain and, quite rightly, drink ing of alcohol and smoking, were c o n sid e re d re la tiv e ly im p o rta n t whereas consanguinity, advanced m aternal age, X-rays and German measles were considered less im portant.
The awareness profile could be attributed to the cultural back ground of this population group.For example, it is known that ab stention from alcohol and consan guinity is commonly an accepted norm among certain Indian groups.
It can only be assumed that the educational programmes possibly had not reached this population group as a whole by 1977, or that exposure time to these programmes had still been inadequate to justify any conclusion as to the effect of the programmes.
A degree of awareness of factors dangerous for an unborn child seemed to prevail in the Coloured community (1977).For example consanguinity, the drinking of al cohol, G erm an measles, advanced m aternal age, and patent medicines were considered dangerous.The extent of this awareness was, how ever, clouded by the relatively high value attached to non-harmful fac tors such as aeroplane travel, danc ing and eye strain.
Since the beginning of their existance, Coloureds had been in con stant contact with W hites and they had much stronger cultural ties with Whites compared with the Indian and Black populations.This could account for the similar tendency of awareness for the harmful factors as compared to the survey amongst Whites (1975).
Amongst the Blacks (1979) there again seemed to be an awareness of some harmful factors for the unborn child, especially German measles, alcohol, smoking and ad

Knowledge of genetic counselling
According A substantial percentage of Blacks (1979) (33%, indicated that they had knowledge of genetic counselling, and 45% had heard of it (table 4).However, it transpired that only a small number of respon dents had a real conception of what genetic counselling entails, since there were indications that with the translation of the questions it may have been confused with the con cept of family planning or medical counselling.A surprising 47% of the respondents were aware that there are disorders which are diag nosable before birth.
In general there is obviously ample scope for creating awareness of genetic services in the population as a whole with emphasis on Indians, Coloureds and Blacks.From all the individual reports on the findings of the respective sur veys it appears that awareness and knowledge of genetic disorders and available services were directly re lated to the educational level of the respondents.

Awareness through the media
In 1975, magazines and the radio were the most important media for Whites (table 5).Newspapers were the most important medium for In d ia n s (1977) and C oloureds (1977).A significant number of per sons, except Indians (1977), ob tained their knowledge from bro chures or pamphlets, which can largely be attributed to the educa tion programmes of the Genetic Services Division.
More Black women (1979) ob tained information about congenital and hereditary disorders through radio and/or television programmes than through any other communica CURATIONIS tion media.It would appear that mass media such as magazines, newspapers, radio and TV are ap propriate for creating a general awareness of genetic disorders and the corresponding services.

Who affected parents turn to
Except for the respondents in the survey for Blacks (1979), the per centage of parents with affected children more or less corresponds with what would be expected.
In Whites (1978) and Blacks (1980) only 63% and 55% of af fected parents respectively were concerned about the risk of recur rence.This attitude in the Blacks (1979) could probably be related to the high percentage (49%) of the Black public (1979) who consider a super-natural power a dangerous agent to the fetus in utero, or that a birth defect just happens (table 5).
In   The fact that there was a signifi cant percentage increase of parents who consulted a medical doctor, from 60% in 1975 to 86% in 1978, clearly indicates the responsibility of this category of health personnel and the role they can play if they are to help fill the need for genetic counselling.A knowledge and atti tude study amongst medical person nel in 1975 revealed areas in which knowledge of medical genetics was incomplete®.
Amongst the Indians and Colour eds, an alarming 29% and 30% re spectively consulted nobody which is similar to the responses recorded for Whites in 1975.Hopefully this situation will be shown to have changed in future surveys.A medi cal doctor was consulted in only 47% of cases, and a genetic coun sellor in 8% and 9% of cases re spectively.

Advice received
Advice given to affected parents with regard to further children varied in the different surveys from sterilisation to prevent further births (8-25%) to re-assurance of no further risk (approximately 50% in all the surveys).
The percentage of affected parents advised to opt for sterilisa tion to prevent a recurrence of an affected child is considered excep tionally high, especially among the Indians, in view of reproduction op tions currently known which in only ra re cases in clu d e s te rilis a tio n (table 8).
The advice advocated is reflected in the actual action taken in the case of Blacks (1979) where the 4% of parents (mothers) who underwent sterilisation is relatively high com pared with the percentage of parents who took other action.
It is notable that a high percent age of affected parents were re assured of no further risk for recur rence whereas a much higher per centage of parents with a risk of re currence would be expected.
In a comparable study on know ledge and attitudes of various popu lation groups towards hereditary diseases in the East Block coun tries, Gahse and Kranhold also found that all groups professed a m arked desire to acquire more knowledge or to extend their infor mation*^.
As many as 27% of the Indians (1977) were not interested in gene tic defects or considered further information on genetic defects un necessary although, as shown in table 3, this group was not fully aware of the agents which place the fetus at risk.

CONCLUSION
Although no claim can be made that the different surveys are com parable in all respects, certain ten dencies regarding knowledge and attitudes of the public towards con genital and genetic disorders are in dicated.
As the educational programmes were initiated only in 1975, the sur veys amongst Indians and Colour eds in 1977 may have been too pre mature to draw reliable conclusions regarding the effect of these pro g ra m m e s in th e s e p o p u l a t io n groups.Initially no specific effort was made to reach these groups as such and for all practical purposes the surveys amongst Indians and Coloureds in 1977 may be regarded as pre-exposure surveys In a survey of the general health knowledge of first year university students at a South African Univer sity, Slayen found a lack of basic education concerning those aspects of health for which the respondents should be personally responsible (8).There was a definite indication that the students were not learning enough about health at school, at home or from other available sources.Slayen comments that health education should take place during the formative years in a disci plined manner in which every indi vidual has to acquire the same stan dard o f expertise and knowledge as he or she is expected in other sub jects.
Considering that health is a vital component for the quality of life of the individual and community, it is surprising that so little about health is taught at school.Apart from acquiring knowledge about health in a formal manner at school level, the need for a major awareness programme for all popu lation groups outside the school set ting is indicated.In such campaigns the use of various mass media would be appropriate.
In general, considerable interest in obtaining further information on CURATIONIS genetic defects is expressed in all the populations surveyed -the Coloureds and Blacks more than any of the other populations.
Although the Genetic Services of the Departm ent of Health and Wel fare were least known compared with the Family Planning, Dental and Nutritional Services of the D e partm ent, as many as 50% of the White population (1980) was aware of this service.
It is hoped that future surveys will confirm some of the trends in knowledge of and attitudes towards congenital and hereditary disorders and will confirm the effect of the educational programmes of the D e partment of Health and Welfare.
. The action taken by affected parents in the Indian (1977), Coloured (1977) and Black (1979) populations supports the supposition.The survey amongst Whites in 1975 may be considered the pre-exposure survey.In general the Whites were reasonably informed in 1975 of congenital and hereditary disorders and where to obtain the necessary services.A dramatic improvement of the situation was seen after three years (1978), which could probably be at V 0 L 7 N 0 2 tributed to the education and train ing programmes of the Genetic Ser vices Division.