Journal of Genetic Counseling

, Volume 19, Issue 1, pp 9–21 | Cite as

Grandmothers as Gems of Genetic Wisdom: Exploring South African Traditional Beliefs About the Causes of Childhood Genetic Disorders

  • Claire Penn
  • Jennifer Watermeyer
  • Carol MacDonald
  • Colleen Moabelo
Original Research

Abstract

With its diverse cultural and linguistic profile, South Africa provides a unique context to explore contextual influences on the process of genetic counseling. Prior research suggests intergenerational differences regarding models of causation which influence treatment-seeking paths. This pilot study therefore aimed to explore South African traditional beliefs regarding common childhood genetic disorders. Three focus groups were conducted with fifteen grandmothers from different cultural backgrounds in an urban community. Questions pertained to the role of the grandmother, traditional beliefs regarding causes of genetic disorders, explanations of heredity, and prevention and management of genetic disorders. Results indicate a variety of cultural explanations for causes of childhood genetic disorders. These causes can be classified into categories related to lifestyle, behavior, social issues, culture, religion, genetic, and familial causes. Prevention and treatment issues are also highlighted. These findings have implications for genetic counseling practice, which needs to include a greater focus on cultural issues.

Keywords

Genetic counseling Traditional beliefs Models of causation Culture South Africa Grandmother Qualitative research Focus groups 

Introduction

“Among the many deterrents to access of the underserved populations to genetic services, ethnocultural barriers are probably among the most important.” (Lin-Fu 1990, as cited in Weil 2001 )

Cultural influences on the process of genetic counseling are increasingly recognized as being important to understand, and current conceptions of the profession incorporate the need to recognize and address potential barriers to effective counseling which may arise from cultural factors (Clarke and Parsons 1997; Edwards et al. 2008; Weil 2001). While genetic counseling is a relatively new field in South Africa, because of the country’s rich and diverse ethnic and linguistic profile, it provides a fruitful and exciting context to explore such influences on the process and ways to develop more relevant models of intervention. While counseling models from developed, western contexts have been implemented in the South African context, these are recognized as being not necessarily appropriate, given the country’s multicultural heritage and unique disease profile. However, limited research currently exists which investigates cultural perceptions surrounding genetic syndromes and conditions. Although there is a tradition of research in South Africa on different cultures’ perceptions of illnesses, this has been largely limited to diseases such as tuberculosis and HIV/Aids (e.g. Ingstad 1990; Levin 2006; van Dyk 2001a). Prior research suggests, for example, that there are intergenerational differences regarding models of illness causation which influence treatment-seeking paths (e.g. Liddell et al. 2006). Further, in the African context, traditional healing systems are widely accessed and people may consult both western and traditional healing systems in order to improve their chances of recovery from a particular illness or condition (Herselman 2007).

One of the more recent trends in the field of genetic counseling is a focus on the family (Arribas-Ayllon et al. 2008), and with this comes an obligation to understand family patterns within a cultural context. Culture and inheritance have a complex relationship, and features of South African society include a different understanding of kinship in some cultural groups which are incompatible with western models of inheritance (Meiser et al. 2008). For example, in the patrilineal kinship system, kinship and descent are traced through the paternal line and diseases may be derived from a paternal ancestor (Modell 1997). Decision making about health is often made at the level of the family, as the family is the central organizing structure and older people in certain social and kinship positions have a very strong influence in the community. Healing “always takes place in a social setting where the [client] is accompanied by members of his or her family who understand, support and accept the [client]” (van Dyk 2001b, p.9).

Grandparents have always played a central role in South African society. In many African cultures, elders hold a position of great respect both within the community and the family (Kasanga and Lwanga-Lumu 2007). Their role has been described in relation to teaching and bringing up children as well as playing an important role in illness. For example, should a child fall ill, he or she is often sent to live with the maternal grandparent until health returns (Barratt and Penn 2009; Marwick 1966). Grandparents are often the first to be consulted when there is illness in the family and thus serve an important role as gatekeepers of knowledge about illness and treatment (Forrest et al. 2003).

The role and responsibilities of grandparents have been strengthened particularly in recent times, as the HIV/Aids epidemic has resulted in the death of a large number of parents (the middle generation) and a growing population of orphans. Grandparents thus have assumed the role of primary caregivers and their state old-age pensions are often the sole source of income (Barratt and Penn 2009; Bock and Johnson 2008; King 2008; Meyer and Moagi 2000; Ogunmefun and Schatz 2006). The particular burden experienced by grandmothers and their pivotal role within the family structure has been noted and, as Arribas-Ayllon et al. (2008) have pointed out in relation to other populations, there may be a gendering of responsibility in the family. For example, in some rural contexts, men become migrant workers, and relocate to the cities in search of work, leaving grandmothers in leadership positions within communities (Barratt and Penn 2009). Further, based on issues of kinship, it appears that the paternal grandmother has particular power over her son’s relationships and decisions about his children (Kuper 1963).

Thus, as genetic counselors attempt to expand their services and understand both barriers and facilitators to service in this specific cultural context, the role of grandmothers in particular cannot be ignored. Their ideas are likely to influence profoundly not only ideas about inheritance and causation of disease but also treatment seeking paths. It can be assumed that even if these traditional views are possibly imperfectly or incompletely understood by the new generation, they may nevertheless be expressed and incorporated in the genetic counseling session and thus require investigation. This pilot study aimed to explore South African traditional beliefs regarding common childhood genetic disorders and congenital conditions from the perspectives of a group of grandmothers.

Methods

The study design was qualitative and data were collected in focus groups. Much of the research in the field of genetic counseling has been quantitative, but several authors have highlighted the need to utilize qualitative methods in order to explore clients’ perspectives and gain a better understanding of genetic counseling practices (Beeson 1997; Clarke et al. 1996; Pilnick and Dingwall 2001), especially in a multicultural and multilinguistic arena such as South Africa.

Setting

Data collection took place at a community childcare center in Eldorado Park, Gauteng. This area is characterized by poverty, lack of infrastructure, unemployment, crime, gangsterism, drug abuse, domestic and child abuse. HIV/Aids is also rife. Originally a township created for so-called Coloured people1 under the apartheid regime, it is now home to a diverse population of Coloured, African and Asian peoples. The privately-funded childcare center offers services to approximately 200 children who are infected or affected by HIV/Aids and their caregivers (including approximately 100 grandmothers). Due to the HIV situation and the increasing number of orphans in South Africa, many grandmothers have become primary caregivers in this context.

Participants

Access to this site was possible through an earlier educational project. Grandmothers at the center were invited to participate in the present study via the director of the center and some introductory talks on the project. Ethical clearance was obtained from the University Committee for Human Research and written consent was obtained from the participants.

Given the limits to confidentiality which are present in focus groups and the vulnerability of the population at the center, the researchers emphasized the voluntary nature of the study, the fact that participants had a right to withdraw from the study at any stage, that they would not be asked questions about their own grandchildren, and that they would not be obliged to reveal any personal information. Names were also not recorded.

A sampling method of convenience was employed, according to the participants’ willingness and availability to participate in the study. The participants were divided into groups according to their home language. The interviewer, aged 53, was a grandmother herself and spoke Sepedi as her home language. She had been raised in a rural area but had lived in Johannesburg for many years and was also fluent in Sesotho, English and Afrikaans. She had tertiary education and was trained as a teacher and she had considerable experience in running groups through employment with a non-governmental organization. The same individual ran each focus group. Prior training of the interviewer had occurred in two sessions during which she was “mock” interviewed using the protocol and methods for the focus groups. Modifications to the protocol were then made as a result of this training session, for example, the manner in which questions were asked and the order of questioning.

Methods and Procedure

Over a period of 2 days, three focus groups were conducted with 15 grandmothers from different cultural backgrounds, in their home languages. As this was an exploratory pilot study, it was decided to start with three groups at this site (Krueger and Casey 2000). Group 1 comprised four participants, Group 2 comprised six participants and Group 3 comprised five individuals.

The participants represented a wide cultural and geographical mix reflecting the diversity of this particular community. There were individuals who originated from five of the nine South African provinces (North West, Eastern Cape, Free State, Northern Cape and Western Cape). The interviewer ran two of the groups in Sesotho (the common vernacular of the local community) and the third group in Afrikaans.

A semi-structured interview approach was employed. The participants were shown web-based photographs of genetic disorders including club foot, albinism, Down syndrome, cleft lip and palate, and cerebral palsy. These photographs were carefully selected to show features of these conditions in local populations. Prior research in the field of genetics suggests these disorders are common in South Africa, hence their selection for discussion in the focus groups (Hong et al. 2006; Kromberg et al. 1989). Cerebral palsy is not generally considered a genetic condition, but it was selected for inclusion in this study in order to determine whether participants would be able to differentiate between an inherited versus a congenital disorder and whether reported cultural beliefs would differ between the two types of disorder. However, some recent research does suggest the involvement of a genetic element in impaired cortical function (Morris-Rosendahl 2009).

Participants were asked if they were familiar with each disorder and they were asked to provide a name for the disorder in their culture. Questions pertained to the role of the grandmother in the community, traditional beliefs regarding the causes of various genetic disorders, traditional explanations of heredity, community responses to genetic disorders and methods of prevention and management of disorders.

Each focus group lasted for approximately one to one and a half hours. Process notes were taken by the researchers during the interviews and a question and answer opportunity was afforded the participants after the interviews (interpreted by the interviewer). The focus groups were video recorded. The recordings were transcribed and translated into English by at least two persons and the resulting transcriptions were cross-checked for inconsistencies which were then resolved. Themes were extracted from the data using methods of thematic content analysis (TCA). TCA is a technique which focuses on themes and patterns which can be identified in data and then combined to generate a comprehensive picture of the informants’ collective experience (Aronson 1994; Grbich 1999). Each researcher completed an independent analysis of the data and then discussed findings together which enabled the development of a categorization framework of cultural explanations of genetic disorders, community responses and treatment paths, from the perspective of the grandmothers.

Results and Discussion

In the following section the main recurrent themes will be presented with illustrative extracts from the interviews (in italics). Where relevant the different genetic disorders will be highlighted. The main themes are summarized in Table 1. As this table demonstrates there was a degree of overlap in the discussions and discussion about a particular picture often evolved into more general themes. These are covered under the section “general discussion of causes of disability”.
Table 1

Themes Concerning Traditional Beliefs Regarding Causes of Various Genetic Disorders

 

Cultural Name

Seen in the community

Causes

Albinism

-“inkau”, “maswefe” (albinos)

Yes

-not eating correct foods

-albinism

-alcoholism

-confusion with foetal alcohol syndrome (Group 3)

-smoking during pregnancy

 

-AMA (Advanced Maternal Age) (mother too old)

 

-punishment or gift from God or ancestors (e.g. if you don’t love your child who has albinism, you might get another)

 

-in the family

 

-born with first layer of skin and not second layer (dermas)

Club foot

-“sebopiwa”, “segole” (God’s creature)

Yes (group 3 referred to ‘cripples’ in community)

-mother was mischievous and went to the zoo in secret; child was therefore born disabled

 

-AMA (mother too old)

-retard

-God’s gift

-disabled child

-laughing at others in the street or specifically at disabled people

-family children

-mother did not eat well or ate culturally forbidden foods (e.g. eggs, tripe, duck’s feet)

-same blood

-cultural rituals (especially rituals of the father’s family) are not performed, therefore child is not whole/complete

 

-incest

Cleft lip

-“family children” (Group 3)

Yes

-consanguinity

-“something wrong inside”

-punishment from God

-a natural thing

-something you eat or drink during pregnancy

-being hit while pregnant

Cleft palate

 

Yes (group 3) No (group 1; group 2 related this to spina bifida)

-cancer

-God’s creation or gift from God

-incorrect eating or drinking during pregnancy

-taking pills while pregnant (teratogens)

Down syndrome

-“sebopiwa” (God’s creature)

Yes

-combining different blood (across cultures, incest)

-“isidatwa” (cripple)

-heredity (both mental retardation and physical disabilities)

 

-AMA (mother too old)

 

-alcohol

 

-wearing tight clothes during pregnancy

Cerebral palsy

-confusion with epilepsy

Yes

-heredity (both mental retardation and physical disabilities)

 

-incorrect eating or drinking during pregnancy

 

-family children

 

-being hit while pregnant

 

-child not immunized, therefore became ill (linked with polio)

Deafness

 

Yes

-“naturally like that”

General discussion of causes of disability

  

-mother getting a fright while pregnant (e.g. she saw an animal)

-eating forbidden foods, e.g. ducks or duck feet

-not eating proper foods during pregnancy

-child is “born tired”

-domestic violence during pregnancy

-blood is dirty from sleeping around too much

-punishment from God (esp. linked to promiscuity)

-not following cultural practices, therefore infants are stillborn

-not allowing a period of healing after birth / pregnancies in quick succession can lead to disability

-child conceived in impurity can lead to disability

-child not immunised (linked to polio)

The Role of the Grandmother

Initial questions in each focus group centered on the role of the grandmother and participants were invited to reflect on their role as a grandmother and also on their own grandmothers. The following themes emerged:
  1. 1.

    Grandmother as carer:

    The participants discussed various caring roles of the grandmother, including child care, cooking, fetching water, checking whether children have eaten properly, teaching life skills, dispensing advice, and managing health issues. These roles concur with traditional roles of women which include growing and harvesting crops and caring for children and the sick (Cancian and Oliker 1998). This theme also included references to grandmothers digging for appropriate herbs for traditional remedies, administering traditional remedies to children who were ill, and making herb necklaces to help infants with teething, for example:

    A long time ago when a child was sick the grannies would go around corners to dig something and bring it to the boil ... to help that child.

     
  2. 2.

    Grandmother qualities:

    Grandmothers were described as possessing various qualities, for example, industriousness (“not lazy”), fidelity (with husbands as migrant workers, women were expected to stay faithful), and longevity (attributed to good dietary practices, including eating radish, cabbage, spinach, fruit, “no fancy spices” and drinking water).

     
  3. 3.

    Grandmothers as family and reproductive monitors

    The importance of grandmothers in keeping the family name was discussed. Having a clan or a family tree is valued in African cultures and the birth of children is very important. One informant described how in families where there are no male grandchildren born, grandmothers would choose a suitable family bride who would be expected to bear children. This family bride or “makoti” would find a secret lover (not known or chosen by the family and not part of the family). The resulting child will carry the family name. These circumstances remained secret and if the children later asked about their father, the answer would be that he had died when they were young. According to this informant, since either the mother or grandmother took care of the children while the men were working in the cities “this cover-up worked like a charm.”

    If a son was unable to bear children (according to our informants, a capacity closely monitored in young men as they were growing up and reportedly predicted by the direction of flow during urination), the grandmothers would advise the son’s partner to find another man, to be discreet about the affair, to fall pregnant and to create for the family son an opportunity to be proud and honor his father. This process was facilitated by the fact that African men reportedly are often vague about timing of pregnancies and the fact that it is not customary to indicate exact dates of delivery because of susceptibility to witchcraft (Mathole et al. 2004). One group referred to the fact that grandparents often acted as a type of shield for extramarital affairs, indicating (in a suspect case) that the children of their daughters or daughters-in-law had family characteristics of the father’s family:

    You will find yourself pregnant, when you are pregnant, the family doesn’t want to destroy your family. When the husband comes, they will say the baby looks like his grandfather who passed away long ago, hiding the truth.

     
  4. 4.

    Grandmothers as decision makers:

    In two of the groups, it emerged that grandmothers play a role in the birthing process and have wisdom and authority in relation to the identification and management of disability.

    In previous times they could make the decision to terminate the life of a child born disabled. This was not verbally stated by the participants but was indicated through a hand gesture, either by shaking the hand towards the ground (to indicate “letting go”) or by moving a finger across the throat (to indicate “ending life”). It was also said that the grandmother would then fabricate a reason to explain the child’s death to the mother e.g. “the child was too weak.” Grandmothers may thus play a potential role as gatekeepers who hold the power of life or death (Forrest et al. 2003). However, the groups agreed that this role is generally no longer possible because most births now take place at hospitals.

     

Causes of Genetic Disorders

With regard to the specific disorders which were presented, as Table 1 suggests there was some overlap and differentiation between causal explanations for each disorder and often discussion about a particular disorder evolved into more general themes. In relation to some of the disorders which were discussed in the focus group, several causal explanations emerged as themes and these are categorized in Table 2.
Table 2

Summary of Themes Concerning Focus Group Participants’ Beliefs about Genetic Disorders

Category

Examples

Lifestyle

Wearing tight clothes during pregnancy, incorrect diet, eating forbidden foods, smoking, drinking or taking pills while pregnant, promiscuity (child conceived in impurity)

Behavior

Laughing at others (esp. disabled people) when pregnant, getting a fright from seeing animals

Social

Domestic abuse

Familial

“Family children”, consanguinity, mixing blood across cultures, same blood

Cultural

Not following cultural rituals

Religious

Punishment or gift from God (not ancestors)—“God’s creature”

Genetic

Heredity, advanced maternal age, “something wrong inside”

  1. 1.

    Lifestyle-related causes:

    Eating culturally forbidden foods was frequently cited by the groups as a cause of genetic disorders or disability. In particular, young girls should not indulge in forbidden foods such as eggs, tripe, animal innards, or duck, as these are thought to possess aphrodisiac properties. Only married people should eat certain foods. In addition, it was also mentioned that not eating proper food (“true Tswana food”) during pregnancy, as well as smoking, drinking and taking too many pills, would cause disability. In an ongoing study of prenatal genetic counseling practices by Wessels and Penn (2008), one client discussed a previous miscarriage and attributed this to eating incorrectly and indulging in foods such as sugar. This particular client appeared to experience a high degree of guilt over her actions and there are implications here for the genetic counselor who has a responsibility to reassure clients that food is not a cause of genetic disorders.

    The use of alcohol during pregnancy was referred to fairly frequently as a cause of childhood disorders. This was seen particularly as related to the cause of albinism and Group 3 (the Afrikaans-speaking group) was particularly assertive about this, pointing out facial features (the eyes) as being associated with this disorder. (Note that given the high incidence of alcohol abuse and resulting Fetal Alcohol Syndrome in this community (May et al. 2000; London 2000), it is possible that this was a confusion of disorder rather than a true attribution of cause).

    One cause of congenital defects was attributed to the youth now wearing clothes that are too tight during pregnancy:

    Today our children wear pants that are so tight. It’s those pants that choke them and then the children are born with squint eyes.

    Promiscuity was suggested as another cause of disability, specifically, a child “conceived in impurity” might be born disabled as a punishment from God. In addition, the participants indicated that getting pregnant rapidly after a birth (what one informant described as “this Monday-Tuesday business”) and having “dirty blood” as a result of promiscuous behavior, may also cause disability. These results confirm the findings of Ingstad et al. (1997) and others who reported on the widely held belief in traditional communities that at critical periods after confinement, delivery and abortion, sexual abstinence should be observed and then purification rituals followed. Failure to do this will anger the ancestors and this will lead to punishment by the ancestors in the form of illness including birth defects. The participants’ reference to “dirty blood” also confirms previous research which describes how some cultures believe that a mother can acquire ‘bad blood’ or become polluted after engaging in sexual relations with a man who has slept with another woman, and this may cause something to be wrong with the mother’s uterus and consequently with the infant (Haram 1991; van Dyk 2001b).

     
  2. 2.

    Behavior-related causes:

    Some interesting explanations emerged regarding the behavior of a pregnant woman that may lead to her child being born with a disorder or disability. For example, laughing at someone with albinism may cause a woman to give birth to a child who has albinism; similarly, laughing at a disabled person may lead to a disabled child being born. One participant mentioned that pregnant women should not be allowed to visit the zoo, as they might get a fright which would affect the baby, or their child might be born with the appearance of a monkey:

    There is a woman who gave birth to a boy who looks like a monkey; he actually really looks like one—a monkey-man. They say his mother used to secretly visit the zoo.

    A point was also raised by one informant that in rural areas there are restrictions placed on pregnant women because there is fear that being frightened by something (e.g. a wild animal) may affect the pregnancy.

    Interestingly, the participants acknowledged differences in belief and lifestyle not only between themselves and the younger generation (e.g. “we wore loose clothes,” “children no longer listen to their elders,” “our children are not strong because they do not obey as we did and that’s why they lost their babies,” “we believed that babies came from aeroplanes”), but also between themselves and their own grandparents (“the old people”) who lived long lives and were “not lazy like us.” (Interestingly this point appeared to contradict an impression (discussed earlier in this paper) about their own behavior: although they considered themselves industrious, they did not feel that they worked as hard as their own grandmothers did).

     
  3. 3.

    Social causes:

    Abuse and domestic violence were cited as causes of disabled children, especially by group 3 (the Coloured grandmothers). Some participants told stories about women who had been assaulted during pregnancy, and had subsequently delivered disabled children:

    There’s another woman, she’s dead now, her sister hit her with the flower vase. And then when the child was born the child had a crooked head.

     
  4. 4.

    Familial causes

    The topic of consanguinity was discussed in several of the groups as a possible cause of genetic disorders. One grandmother acknowledged that some disorders came from “sleeping with your brother. There was acknowledgement that some problems come from what one participant termed “intercultural relations” and that the offspring have “same blood” and are called “family children” (ngwana wa lelapa).

     
  5. 5.

    Cultural causes

    Not following cultural rituals, especially those of the father’s family, were often cited by participants as causes of disability:

    Often it happens when the mother does not perform the rituals of the father’s family.

    These rituals were spoken about by some participants, and they appear to include practices such as cleansing and abstinence as part of a mourning process after miscarriage or the death of a husband:

    Your family does not fix … not even a simple bath [to cleanse]…you will just take plain water in the morning and bath … there are some traditional herbs you must still take … and mourning, you must spend at least one month without lying with a man … so these things are what causes these strange things to happen … like for instance children born with abnormalities.

    In one group, there was a discussion of whether disabled children were a punishment from the ancestors. There was also some argument as to whether the punishment came from God or from the ancestors (and this disagreement was apparently linked to different beliefs across cultural groups and to whether ancestors exist or not), but it was agreed that promiscuity might lead to punishment in the form of a disabled child:

    What big offence must you have committed for the ancestors to punish you with a child like this?

    Sometimes it is not that they are angry but that they see you are becoming a loose woman … maybe they are forcing you to grow up.

    Another explanation related to punishment was that if a mother had one disabled child but she did not love this child, then the ancestors or God might punish her and give her another disabled child:

    … there is another [woman]… the younger sister was telling me that her sister doesn’t want the albino… she didn’t love the child, didn’t need her, when the child came she would keep quiet, she got another one, now she has two … then, this shows punishment … if you don’t love her, feeling disgusted.

     
  6. 6.

    Religious explanations

    Religion appeared to play an important role in discussions of causality, and disability was seen by the participants as either a punishment from the ancestors, or alternatively as a gift or punishment from God (depending on individual perspectives and cultural beliefs). One participant indicated that although having a disabled child is considered a punishment, it is better to refer to the child as a gift:

    It is thought to be a punishment from God, though that is not ‘kosher’ so then it is sometimes thought of as a gift from God.

    Participants also referred to the Bible when discussing topics such as infanticide and consanguinity. References were also made to disability being “God’s will.”

     
  7. 7.

    Genetic explanations

    Advanced maternal age was recognized as a cause for some of the disorders discussed (and particularly in relation to Down syndrome):

    Maybe the time has come not to have a baby because of age.

    In terms of their understanding of “heredity” and “genetics”, the participants did appear to have an understanding of heredity and they expressed this as a possible cause of some of the disorders.

    One participant indicated that “hereditary” means “getting bad genes from your parents. Another participant explained that she had a history of mental illness in her family, which she attributed to heredity:

    But another [cause] is heredity. I say this because I don’t know about my grandmother’s grandmother or who she was. She could have been disabled mentally. Perhaps there was a man in my blood line who was ill and it got passed on to my mother. It keeps going down. I am my mother’s first born and I am fine. There were six of us and the last-born was mentally ill. Our sister gave birth to a mentally ill child. I was born of a mentally ill person and I turned out to be normal. My sister after me is also normal. The last-born was mentally ill and her last-born is also mentally ill. It keeps coming down like that. And with my own children, to prove that it is indeed hereditary, there is some sign of mental illness … even physical disabilities are hereditary.

    When asked about their understanding of “genes”, participants were able to link the concept of “genes” to “heredity”:

    Interviewer: Okay, do you know about genes? What are genes?

    Participant: Maybe if he inherited something, like the illness. Family illness. Maybe you inherited something from your granny.

    The gendering of cause was interesting and there appeared to be some conflict amongst the participants as to whether genetic disorders were passed down through the woman or the man. One participant reported that good things come from men and bad things come from women. This belief aligns with the work of Ingstad et al. (1997) and Solomon et al. (2008), which report that the woman is always blamed, because according to cultural beliefs, pollution lies in the womb of the woman. However, in a number of the groups, and in other research (Barratt and Penn 2009), the father was named as a source of disability or disorder:

    We are often told it is the father, that is why they say the father’s family has given this gift. Perhaps there was a man in my blood line who was ill and it got passed on to my mother.

    Participants also referred to “something [being] wrong inside” as a possible cause of disability or disorder, i.e. a congenital malformation in the infant or something being wrong with the mother. Another point was raised that a child would be more likely to be disabled if the mother failed to go the antenatal clinic.

     

Attitudes Towards Termination of Pregnancy

At the end of one focus group, there was a specific discussion on termination of pregnancy and new diagnostic technologies for detecting disability prenatally. Questions focused on the grandmothers’ attitudes towards termination and how their community would respond to a mother who decides to terminate a pregnancy.

Attitudes towards termination of pregnancy seemed mixed. One grandmother said that in her culture, mothers would far rather have a disabled child than have a termination because of the stigma placed upon abortion and miscarriage in the community and the value of having a clan and a family tree (as Ingstad et al. (1997) found). Further, abortion and miscarriage require a cleansing ritual (including a gathering of the whole family, cleansing of the house and the slaughtering of a goat) which is costly. One grandmother however indicated that the option of termination might be better in the cases of some causes of disability (e.g. when there are physical disabilities) because the problems of caring for a child and physically managing the child may be too great (“we would have to lock it up”; “we would have to carry him”).

Prevention and Management Strategies

A number of potential strategies for prevention and management of genetic disorders and resultant disabilities were suggested by the participants. These were often linked to their beliefs about causes but were not specific to any particular disorder.

One such strategy was the concept of infanticide, or killing disabled infants at birth. This was mentioned by two groups, although the topic appeared to be rather taboo and was sometimes spoken about indirectly using gestures or references to infanticide in the Bible:

Something was wrong inside. The child was born on Sunday then they called me Monday, I must come look. We came there, my sister and I and my aunt. Then the child looks so ((points to picture)) and then my aunt said they should ((gestures to indicate “letting go”)) because he doesn’t even have legs, how will he even walk?

One participant indicated that this was a common practice in previous generations, but because infants are now born in hospitals rather than at home in the rural villages, infanticide is no longer possible:

We gave birth in the rural areas. Nowadays we give birth the western way and the number of such [disabled] people has increased. The doctors give you the child as is. They would say the child was born tired. They would blame you, the mother, saying ‘we told you to open wide but you tightened, you suffocated it’ ((laughter))… That was their way of distracting you.

A number of traditional medicines were mentioned across the groups, although amongst the African participants there appeared to be a reluctance to discuss specifics of the remedies:

Interviewer: I want to know about traditional things, those traditional herbs, that is what we want, you know, expose them.

Participant: No, I don’t want to expose it.

Interviewer: Yes, we are supposed to expose it.

Grandmothers appear to have a role to play in selecting and preparing traditional medicine. Some of these remedies include the following:
  • “Dassie pis”2 (“Dassie pis is a wood, then you crush it, and eat it. My granny used to cook it and then she gave it to the child, then she chewed it and spat the child wet with it.”). This was described as “serokolo” in Sesotho.

  • “harmsdruppels, lewensessens, wonderkroon” (Afri-kaans words for old Dutch remedies used during menstruation)

  • Various herbs mixed into traditional remedies (“herbs they would give to children to drink and get well”)

Such remedies align with the range of traditional medicines reported by Jewkes et al.’s (1998) informants in their 1998 study of health care seeking practices in the Cape.

Other suggested prevention measures included the following:
  • delaying sexual maturity (by not eating culturally forbidden foods, which are thought to act as aphrodisiacs);

  • cleansing rituals after miscarriage or widowhood;

  • abstinence or “cooling off.”

As with the discussion of causes, the management strategies suggested by the grandmothers were not mentioned in relation to any one specific genetic condition but were considered to be general ways of managing disease and reproductive responsibility. However there were some interesting features unique to specific diseases and our data conformed to some of the work in the area of albinism related to infanticide (e.g. Mesaki 2008). The findings on cerebral palsy linked to attitudes expressed by informants in Barratt and Penn’s rural study (2009) regarding management of disability, for example, resorting to infanticide or seeking traditional healing and herbal remedies for a disabled child.

Clinical Impressions of Participants’ Dynamics

Based on interviewer impressions and review of the videotapes, it appears the focus group methodology was a very powerful and fruitful one in terms of the topics raised. The participants seemed comfortable and openly expressed interest and enjoyment in the activity. There appeared to be a balance of perspectives from each individual and a rich cultural mix reflected in our three groups in terms of diversity and identity issues. A diversity of views were expressed in the groups and individuals did not bow to group pressure but kept their voices. Our interviewer commented on the fact that grandmothers in the third group seemed less constrained by cultural conventions and more open in their discussions and she attributed this to their different ethnic origin.

As members of the childcare center, most of the participants had suffered personal loss and tragedy (some very recently) and were caring for orphans. They had also had some personal exposure to some of the disorders spoken about, including mental retardation, a family of “crippled” children, and others with epilepsy. This suffering and resilience is captured in one of their comments: “you know how life is, it will trouble you until the end.

There were some obviously taboo topics even within the safe and confidential frame of the group. One of these topics pertained to the types of herbs used for traditional cures (“we are not supposed to talk about this”) and the other pertained to the grandmothers’ traditional role in infanticide with disabled newborns.

Genetic Counseling Implications

In relation to some of the diseases discussed (including HIV/Aids), participants indicated that they did not recognize the names but that they were familiar with them—“same disease, new English names. Particularly interesting were that, as Table 1 shows, the etiologies of the diseases discussed were not clearly differentiated. This has important implications for the genetic counselor, as different modes of inheritance for different disorders are clearly not something that is well understood.

If the “new generation is still sucking from the old breast, in the words of one informant, then the potential role of the grandmother in providing insight into factors of relevance to the genetic counselor is strongly reinforced by the findings of this study (cf. Ingstad et al. 1997). Firstly, the results suggest that there is a range of factors which may very well influence clients’ perceptions about the causes of the disorder or condition for which they may be referred to the genetic counselor. Secondly, the receptivity of the client to the information process of genetic counseling may well be influenced by his/her traditional knowledge and family belief systems as well as the manner and sequence in which these topics are approached in the genetic counseling interview.

An important theme in our findings was the acknowledgement of parallel routes of healing—even in the participants’ own discourses there did not appear to be a conflict or competition between parallel routes of explanation for the disorders studied and in some of the groups it was explicitly acknowledged that both western and traditional healing systems could and should be accessed:

These doctors, you could swear they create these illnesses or they conjure them up … so if we obey tradition we can help the doctor.

Yes, the doctor is in line with the customs just like God is in line with the sangoma ((a traditional healer)).

Thus there appears to be acceptance of mixed beliefs in ancestors and God, natural causes and God and following rituals and God for healing. These results concur with what other authors describe as “dual consultation”, or simultaneous access of western and traditional healing systems (Herselman 2007; Kale 1995). There are various reasons for the existence of this practice: clients may desire to obtain different perspectives on their illness, or the traditional healer might be able to identify a cultural cause or conduct a healing ritual while the doctor provides medication for the symptoms.

Some of these findings have important implications for the genetic counselor. Using a more anthropological framework, our interface with clients may include a greater focus on beliefs and perceptions about causation, termination of pregnancy, disability and alternative treatment seeking paths.

Our findings also suggest the important role of the extended family in reproductive choices, and underscore the idea that the type of decisions which need to be made in genetic counseling should ideally happen at a family level (Petersen 2006). As Petersen points out (2006), for genetic conditions, “the client” is not just the individual but the whole family. There are ethnic differences regarding autonomy, protection of confidentiality in families (Forrest et al. 2003; Clarke and Parsons 1997) and a tendency towards collective decision making and a social responsibility for health (Port et al. 2008; Ware et al. 2009). A woman coming alone to the genetic counseling clinic after referral is being asked to make a decision which may well be subsequently queried or challenged by the family. Therefore, a model of social decision making and social responsibility seems more compatible with some of our data (Port et al. 2008; Ware et al. 2009). Genetic counselors may need to adapt their approach to counseling to include the client’s family in the counseling process and adopt a group rather than an individual counseling approach.

Bearing in mind that grandmothers are an economically vulnerable group with increasing responsibilities, their role as cultural brokers in the field of genetic counseling could be considered. A cultural broker is someone who acts as a mediator between the health professional and client and assists both parties to negotiate cultural and linguistic barriers (Jezewski and Sotnik 2001). For the majority of South Africans, at the heart of the health care interaction lies the effectiveness of the relationship between the health professional, client and a third party who fills the role of interpreter or cultural broker (Dysart-Gale 2007; Kaufert and Koolage 1984; Labun 1999). In line with global trends of sustainable development, we believe that valuable resources already exist in the community and grandmothers could well become a regular collaborative resource for the genetic counselor.

This approach aligns with new global imperatives highlighted by the World Health Organization (2008) for task shifting in under-resourced countries, which suggest that “…we must seek innovative ways of harnessing and focusing both the financial and the human resources that already exist.” This approach also aligns with various existing models, for example, the “accompagnateur” model (Behforouz et al. 2004). This model advocates the inclusion of a person from the community in health care contexts who is familiar with a particular disease or treatment regimen and who can offer peer support and education to clients living with a particular disease or following a specific treatment path. An “accompagnateur” is someone who is respected in the community and is able to provide a link between clients and the healthcare institution.

In the genetic counseling context, a grandmother could act as such a mediator—someone who is ideally selected and trusted by the community, who is familiar with local cultural beliefs about disability and illness and who perhaps has had a disabled child herself. This person could act as an advocate for the client and assist the genetic counselor in exploring the client’s beliefs about genetic disorders and termination of pregnancy, preferences for decision making and preferences for inclusion of family members.

With regard to effectiveness in genetic counseling, how do we measure the success of a genetic counseling session? Is it by examining process variables, or by outcomes, or in crude statistical terms like “uptake of services” or “return to clinic”? Pilnick and Dingwall (2001), in their excellent article, suggest multiple ways in which the effectiveness of a genetic counselor can be addressed. We believe that in most contexts, effectiveness may also be determined by the extent to which we have “cultural safety” in the genetic counseling session. This implies a move beyond simply cultural awareness to a situation where “a client feels that their cultural, social and human values are respected, and that an organization providing services to that client re-orients its institutional practices, values, resource and governance arrangements accordingly” (Phillips 2007). One of the ways in which genetic counseling might move towards encouraging cultural safety is by including a focus on clients’ beliefs about disability and illness, which may be achieved by including grandmothers in interactions.

Conclusion

Major Findings

The findings of this study suggest that grandmothers may play a potentially important role in the process of genetic counseling, at least in the South African setting. They harbor a store of traditional knowledge about causes and treatment of disease and of family, kinship and reproductive issues. They play a pivotal role in family life and decision making and thus have the potential to assist both the genetic counselor and the client in providing mediation, information and support.

Study Limitations

While this is a preliminary study which includes a small sample of participants living in one area, the study confirms the idea that culture is important in genetic counseling, that intergenerational differences may exist and that models of service delivery from developed countries may not be entirely appropriate in contexts of linguistic and cultural diversity. Ongoing research is planned which will follow up on some of the themes raised in this research with other groups in different settings and which will examine genetic counseling sessions for the influence of such cultural factors on the process.

Training and Practice Suggestions

Several implications for training and practice arise from this study. There are challenges which face the professional goals of improving and developing genetic counseling services, especially in a context like South Africa where the legacies of apartheid, poverty and lack of access have profoundly affected healthcare interactions (Andersson and Marks 1989). The level of uptake of prenatal genetic counseling services has currently declined to a rate of approximately 30% (Urban 2009) and several possible reasons for this exist. They include the fact that there may be poor understanding on the part of clients and medical practitioners about the scope and availability of such services. The general disease burden in South Africa, including the emphasis in prenatal clinics on HIV/Aids management, may detract from additional referrals. Further, there are limited services which exist and access to such services may be affected by distance, lack of transport and above all lack of agency in the clients.

In addition to these factors however, the findings of this study suggest that a powerful and primary reason may lie in cultural issues. Though genetic counseling interactions have been described as “resolutely medico-scientific,” with a focus on the provision of complex biomedical information as well as the presentation of risk (Rapp 1988, p. 146), the results of this study make it clear that clients’ cultural beliefs may very well shape the process of genetic counseling interactions and their outcomes.

Research Recommendations

Our findings clearly suggest the need for further research in this area including a careful examination of potential facilitators and barriers to current models of service delivery. Our findings suggest the need for an incorporation and direct acknowledgement of some of the existing cultural beliefs and models of causation into the standard structure of the genetic counseling session and an understanding of how cultural and familial networks may be used to complement and facilitate not only access to, but also methods of referral to and delivery of genetic counseling services. Such a focus on broader family and community issues will be of value in expanding understanding on the part of the genetic counselor about cultural influences on treatment-seeking and decision-making paths and hopefully go a long way towards improving the effectiveness of genetic counseling services in the future.

Footnotes

  1. 1.

    An ethnic group of people in South Africa with mixed ancestry, often including sub-Saharan, European and Asian ancestry.

  2. 2.

    Literally (from Afrikaans) “dassie urine”. A dassie is a small rock hyrax, a common small African mammal. The herbal concoction presumably smells similar.

Notes

Acknowledgments

This paper was presented at the 13th South African Society for Human Genetics Conference in Stellenbosch, 5–8 April 2009. The authors would like to acknowledge the assistance of the Stellenbosch Institute for Advanced Studies (STIAS), the Medical Research Council (MRC) and the South African-Netherlands Research Programme on Alternatives for Development (SANPAD). The authors would also like to thank the translators and transcribers who worked on the data.

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Copyright information

© National Society of Genetic Counselors, Inc. 2009

Authors and Affiliations

  • Claire Penn
    • 1
  • Jennifer Watermeyer
    • 1
  • Carol MacDonald
    • 1
  • Colleen Moabelo
    • 1
  1. 1.School of Human and Community DevelopmentUniversity of the WItwatersrandJohannesburgSouth Africa

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