Reproductive decision making
Mothers and fathers agreed on the normative importance of having children. Parents felt there was strong societal expectations to reproduce and that their extended family and the wider social network would think it odd, if they did not have children. The priority giving to having children is not unique to Ghana (see Atkin et al. 2014). Nonetheless antenatal screening policy is required to engage with these strong pronatalist assumptions, particularly in how parents negotiate reproductive choices. Fathers expected to be included in the reproductive decision-making process. They believed that men should initiate the discussion on reproductive choice, in their role as the head of the family, which included decision making on childbearing and more specifically prenatal testing for SCD. It fulfilled their normative sense of responsibility (and authority) for their family. It was also seen as supportive. Sam, who had lost two children with SCD and has one surviving 4-year-old with SCD, offered a common explanation:
The man has to make the decisions and then tell the wife that these are our problems. You the man must make the decision, and secondly, call your wife and tell her (…) you the man will have to say, let us go and test to know the status before we can carry on.
Men are, therefore, important gatekeepers, but there is (a potentially contradictory) nuance to this, in which responsibility and support become juxtaposed. All fathers shared the view that as a responsible husband, your decision should not be final and any decision on screening must be negotiated with their partner (see Kaufman, 2004 who identified a similar tension). Fathers, therefore, expected their authority to be respected, while acknowledging the importance of joint decision making. Yaw who has lost one child with SCD, and has a 4-year-old with SCD, remarked:
When it comes to such decisions, we both make that decision. We at least put our heads together and decide, knowing the pros and cons, and the likelihood of what is ahead so we draw a line, and we go ahead.
Philip, when further reflecting on his role as head of the family, believed mothers should have the final say on any testing:
Because she will be carrying the child, so if I say she should go and do the test and she say ‘no’, I can’t say anything. Because I cannot drag her to the hospital to go and do the test, so she needs to give her consent.
The majority (21) of mothers agreed that joint-decision making was important and expected full involvement in any decision about screening during pregnancy. Gina, who had three children, two of whom have SCD, remarked:
Well, every decision concerning us; as the children, my husband and I, are between me and my husband. We usually talk over things that concern us a lot, and there is always a common understanding (…) so, we always decide together, and to help one another. That is how we can get the family going and supporting the children as much as we can. We are very much together as husband and wife.
Emefa whose eldest child had SCD, agreed:
The two of us; I and my husband make such decisions (…). Again, it is going to be the two of us. We must come into agreement on it. I believe if it’s available, my husband will gladly accept it to be done.
However, two of the mothers said that their understanding (and experiences) of their child’s condition, meant that they would take informed reproductive decision making ‘into their own hands’ irrespective of any decisions they may reach with their spouse. One of the mothers, Agnes, who has two children with SCD, for example, confirmed during the interview that she has been using family planning measures without her husband’s knowledge. She was determined to prevent any further pregnancy, even if the husband insists on having more children.
When negotiating decisions about screening, most fathers and mothers felt there was no need to involve their extended family, as suggested by some African studies. Only one patent (Yaw) felt it wise to consult with the wider family, particularly as they may be involved in offering care, if a child had SCD:
You take one decision as a family, everybody is considered in decision making, because if something happens it’s not only me, yes as a family, and even as friends, and even the church, we put all those into consideration.
This was the exception, and these three responses were more typical:
No, I don’t think so. It should be between my husband and I, no one else matters. Yes, it has to be between me and my husband to take that decision (laughs)” (Obiriwaa)
Nobody, it’s about us, yes, it’s our life and future. (Emefa).
No! (…) It is all about us and the children. It is our problem, and we must handle it the way we want, and we are happy about it. We are close as a family, but we try not to involve them as much as possible”. (Gina).
The negotiation of reproductive decision-making means successful screening needs to be sensitive to diverse responses. Men are important gatekeepers, who expect their authority to be expected, but women are equal partners and, in some cases, expected to make decisions, without consulting their partner. The influence of the extended family was not great, although this may be explained by the urban setting of the study. Nonetheless, mothers and fathers regarded decision making about testing as a private matter that was between them and their spouse. There was, however, another important influence on the exercise of choice. This included parents’ understanding of the condition and the procedures to identify it.
Understanding of Prenatal Diagnosis
Most parents were not aware or had any prior knowledge of prenatal diagnosis, except for one father, who had worked outside Ghana. This is perhaps understandable as prenatal testing for SCD was not routine at the time of this study and few parents knew about the options available. Mothers, such as Jennifer, felt they did not have any option other than to have their baby: ‘I got to know after birth, that my baby had SCD. I felt this was too late’. Another mother, Ama on realising how common SCD was in Ghana, expressed surprise about the lack of options: ‘Do we have it in Ghana? (SCD) Then we are dead’. Following this initial questioning, prenatal diagnosis was explained to all the participant as part of the interview process. This was to ensure some level of understanding, to facilitate a meaningful discussion. Once explained to them, parents expressed enthusiasm for antenatal screening and prenatal diagnosis. All felt it was an aide to reproductive decision making. Parents did articulate concerns about the implications of passing on the condition to their unborn child, although two distinct responses emerged. These reflected quite different reasons for the acceptability of screening.
By far, most parents, said they wanted to have testing to enable them to prepare for having a child with SCD. They did not, however, associate this decision making with possible termination. Sally-Moi, like many mothers, believed that prenatal testing would be reassuring, as you would know the outcome of the pregnancy:
So, if I can get to know from the beginning, before the baby is born then I would not be that worried, because I will know of it in advance.
This was a common view among fathers too. Few would use a prenatal diagnosis of SCD to terminate their unborn child. Pat, who had one child with SCD and was planning for another child, said:
So that if I know it; I will prepare myself. If you see it is negative, you prepare yourself and if it is positive, you also prepare yourself. During counselling, the nurse told us that it is better to know it from the beginning to start treatment, than it being late and having an attack before you know. If I do the test and know what it is, then I can start preparing.
Parents also pointed to the benefits of early diagnosis, for treatment, which they felt was not available for their other children with SCD. A few parents, however, overestimated advances in current treatment or its availability on Ghana. Emefa, for example, claimed that a vaccine can be given, should the test be positive, and that when born, the child would have SCD, but not have a painful crisis. Parents’ experience underlines the importance of discussions about the potential consequences of the condition, along with available treatments, when offering screening. It is important part of their decision making.
A minority of parents advocated screening and prenatal diagnosis on the basis it offered the possibility of termination. Victoria was one of the few parents, who would consider a termination following a prenatal diagnosis of SCD. She talked about the importance of avoiding the ‘pains and suffering’:
Meaning if it was available, you will know it early that it is this, and that you will decide early to have the baby or not, instead of the baby being born and suffering after. So that all of that will not happen, so it is good. If it were available earlier, we would not have suffered like we are doing now.
Several other parents also felt the availability of prenatal testing could be used to prevent the ‘suffering’ associated with having a child with SCD. Abu, who was not sure if he would terminate an unborn child with SCD, nonetheless, he felt it important to have the option.
Yes, to make sure this child I am giving birth to, this is the blood group (sickle cell status); if I accept it, then I must prepare for the consequences. Because I have had one already and I know the sort of pain the first one went through. It will be left for both of us to decide if we should plan something else, rather than keeping the pregnancy for the benefit, and to avoid the pain that the child will go through if given birth to.
In considering termination, parents made judgements about the potential clinical severity of the condition, along with the life opportunities available to someone with SCD. This again suggests the importance of parents having access to informed discussions about the clinical and social consequences of having a child with SCD.
The use of antenatal genetic testing to either prepare for the birth of a child with SCD or to use the information to consider the possibility of termination, represent generic parental responses, irrespective of culture context (see Hodgson and McClaren 2018; Boardman 2017). They are not peculiar to Ghana. Cost, however, was identified as a more ‘local’ problem. Most of the parents, although willing to have prenatal test, expressed concerns about affordability. The cost, therefore, deterred many parents from having the test and was seen as a particularly important barrier in facilitating choice. Sam said:
I think the doctors must do something about it. If you are not financially sound, it would not be easy to have it. But it will be good to go for it.
Some parents may not have the test, should it be available. Mary, who has one child with SCD, indicated, that she initially thought testing was a good idea. She, however, changed her mind during the interview and believed prenatal diagnosis was dangerous, as one could lose the baby during the process. Again, this provides further argument for information and counselling, as there is indeed a risk to the unborn baby. Gina who was pregnant when interviewed and had two children with SCD expressed reservations about the possible anxiety of knowing your unborn child had SCD. It was, therefore, best not to know. Several other parents expressed similar concerns. Parents like Gina preferred to having testing when they child was born (neonatal testing):
But not when the child is in my womb (…) it’s good, it’s good in a way, but it can make one very anxious, (…) depress, and it can make one sad, especially when it turns out that the baby you are expecting is SS. (…), because for now, I don’t know. So, I am going about my things normally (laughs). You see, I don’t know, and I feel okay. I think the prenatal testing can depress a woman in her state of pregnancy.
Yaw would not want to know the sickle cell status of an unborn child, but perhaps for more complex reasons. He expressed concerns that his decision to keep the child, may conflict with his wife’s view:
I will not go for it in one area, until may be my wife and I have agreed on one thing. That whether negative or positive, we will hold up to what decision we must hold. If she agrees well, it will help you to prepare your mind and get you ready for the task ahead.
Although when questioned further, he expressed concerns that doctors may advocate for termination if they knew the child had SCD:
So, it means, why won’t I wait when it comes? There is a saying that when you get to the bridge, we shall surely cross. When it happens that the child comes, and the after-birth test is done, whatever it is then we put necessary measures in place and go on.
These concerns have been expressed in other parts of the world, such as the UK (See Ahmed et al. 2006) and articulate a tension when negotiating informed choice, relative to biomedical assumptions about a ‘healthy’ birth. Jennifer who was initially enthusiastic about prenatal testing, begun to change her mind during the interview. She would prefer more emphasis on the education about SCD, so people with sickle cell trait do not get married and have children with the condition. This found favour with some other parents too, suggesting this is a preferable strategy to antenatal screening. Other parents identified a value of having a multi-facetted approach involving testing and broader community education.
Parents are aware of the challenges of caring for a child with SCD. They are also aware of the difficulties a child may face when growing up with SCD. This partly explains their support for prenatal diagnosis. While few parents said they would terminate an unborn child with SCD, they felt the option should be available because of the impact of SCD has on quality of life. To some extent this may reflect their personal experience of SCD and attachment to a child with the condition. Their experience, however, did not suggest they considered SCD a condition that required termination. Having the option, however, was supported. Parents’ accounts suggest available care could also be an important consideration when making reproductive choices. This raises the possibility that better prospects for someone living with SCD may have an impact on parents’ willingness to accept prenatal diagnosis. This highlights how societal context can mediate individual decision making, which must be balanced against the value of having children in Ghanaian society. Parents sometimes struggled with this tension.