A qualitative study involving ten mothers who received a prenatal diagnosis of Down Syndrome and chose to continue their pregnancy was presented. The time frame considered was diagnosis to delivery. We looked at how the diagnosis was presented, the decision to continue the pregnancy, and the mothers’ experience with professionals from diagnosis to delivery. Mothers’ suggestions to others facing the same challenges and to their health care providers were discussed, as were the types of support given to these mothers, and what was or would have been most helpful to them. The importance of professionals reviewing their procedures and protocols for working with families facing similar circumstances was stressed.
There has been little discussion in the professional literature as to what is helpful to mothers after they have received a prenatal diagnosis of Down Syndrome. The literature that is available suggests that reactions and perceptions of mothers and medical professionals may vary in a number of significant ways. Cooley, Graham, Moeschler and Graham (1990) compared reactions of mothers, nurses and genetic counsellors to a film about Down Syndrome. Their results demonstrated some of those differences. Most notably almost half of the genetic counsellors believed that the problems outweighed the benefits of parenting a child with Down Syndrome, whereas 94% of the mothers and 84% of the nurses believed that the benefits prevailed. In addition, medical professionals were more likely to assume that mothers will want to terminate a pregnancy after a prenatal diagnosis of Down Syndrome; however, mothers were much more likely to want to consider all options, understand the known prognosis for children with Down Syndrome and gather as much information as possible before making a decision (Cooley et al. 1990; Evans, Pryde, Evans and Johnson 1993). Results in recent literature also suggest the need for a re-examination of the way in which prenatal diagnoses are delivered and of the quality of resources made available to expectant couples. These investigators have concluded that expectant parents need to be provided with comprehensive information and more opportunities for counselling and support (Elkins, Stoval, Wilroy and Dacus 1997; Pueschel 1991; Statham and Green 1993; Stein 1997). Their information was based on survey data (Elkins et al. 1986) or from responses to a case study (Stein 1997), not from in-depth interviews with mothers of children who have Down Syndrome. Other authors have challenged professionals to consider the ethical and legal issues of selective abortions based on disability (Glover and Glover 1996).
In much of the related literature, investigators have focused on counselling for parents who have received a diagnosis of Down Syndrome or other developmental disability upon the birth of their child and genetic counselling for couples considering another pregnancy (Pflueger 1991). These authors have also tended to focus on parents’ decisions to either terminate or continue with a pregnancy and the rendering of decision-making strategies by counsellors (VanPutte 1988). There is good information on how to support parents who have decided to terminate a pregnancy (Thayer, Ciarleglio and Rucquoi 1991); bereavement groups for such couples have been developed at a number of hospitals and clinics. What is lacking is information and guidelines on how to support parents who choose to continue with a pregnancy, from receipt of a prenatal diagnosis until delivery (Saxton, Anderson and Blatt 1991) or for parents deciding to make an adoption plan (Finnegan 1991). This information is crucial for parents who may face difficulties in adjustment, feelings of isolation, many parenting challenges and an uncertain future (Barrett 1992). It is important for providers to hear from all their patients about what they need and expect from them (Blatt, Miller and Haddow 1991; Stein 1997). In the present study we talked with mothers who had had these experiences and elicited what was helpful and what was not helpful from the period of the diagnosis of Down Syndrome to the delivery of their baby—a crucial period of uncertainty and concern.
The ten mothers in this study were referred to the Developmental Evaluation Center of the Institute for Community Inclusion at Children’s Hospital, Boston, a University Affiliated Program. They were referred either by genetic counsellors working in area hospitals or through the Massachusetts Down Syndrome Congress parent referral service. Nine of the families participated in the Down Syndrome Program, which is part of the Developmental Evaluation Clinic/Institute for Community Inclusion at Children’s Hospital. One family was referred to the study by their HMO’s Down Syndrome Program. Each had been given a prenatal diagnosis and had decided to continue their pregnancy and to parent their child. The mothers were informed about the project and each expressed a strong interest and willingness to be involved. Each mother was subsequently contacted via telephone, and all were enthusiastic about participating. That is, they all wanted an opportunity to ‘give back’, ‘let others know’, or to ‘teach’ health-care professions what supports were needed.
Open-ended, semi-structured interviews were conducted with the participants, with written notes and audio-tapes to record the mothers’ comments.
Of the ten mothers interviewed, six were raised Catholic; three were Protestant, and one was Jewish. All were European American. Mothers’ ages ranged from 28 to 42 years at the time of diagnosis. At the time of the interviews, their children with Down Syndrom ranged from 11 weeks to 9 years. Nine mothers were living with their husbands, the children’s fathers, and one was a single parent. Five of the mothers had attended post-college graduate school, one had completed college, three had a high school diploma, and one had a high school equivalency diploma.
Our in-depth interviews with ten mothers who had received a prenatal diagnosis of Down Syndrome allowed us to explore in more detail how mothers felt about the support they received from their professionals during this period. The uniformity of these mothers’ requests for respect and consideration from their professionals cannot be over-stressed. They felt that although none of their providers had necessarily meant to be inconsiderate, all too often the style, professional bias, and personal assumptions of many health care providers effectively undermined their ability to make their own decisions with clarity. That is, the parents felt that they did not have support and thus were forced to continue to question their own decision-making process.
This was viewed as a particularly stressful time in the lives of these mothers. They all claimed they could recall in detail exactly what was said to them, by whom, and where they were when they heard the information. All too often the parents were not supported in arriving at their own fully informed decision because the providers were overtly or covertly advocating from their own point of view. It was up to the mothers to seek information elsewhere, causing additional anxiety and uncertainty. They repeatedly stressed that it is incumbent on professionals to present all options available to parents in an open-minded way and to provide current and up-to-date information. Mothers were not saying that professionals should have no opinions, only that they needed to provide all options in a non-judgmental way in order to allow the families to come to their own conclusions. If asked for personal or professional opinions, providers certainly could give them, but, to be fair, it was important that they base their opinions on current information. Each mother was adamant that throughout the prenatal experience professionals need be sure that parents understand exactly what each test would be used for and what would be involved in the procedure. Further, if possible, results of tests and procedures should be communicated in person, with both parents present. The currency of information was critical. All professionals were admonished that they cannot assume that they know what a parent will decide and must, therefore, be fully aware of their own bias.
Professionals need to review their procedures, information booklets and protocols to be sure that they have up-to-date information for those who decide to continue their pregnancy and who want to parent or to make an adoption plan as well, as for parents who want to terminate the pregnancy. Many of these mothers stressed that it is equally if not more important to have current literature for parents who have no idea what their final decision will be, but who want to consider all options. They also suggested that by using parents to review their literature, protocols and procedures, providers could better ensure that truly family-centred care was being delivered.
Finally, the mothers pointed out the language that professionals use was also critical. As noted previously, these mothers reported exactly what was said to them. Negative terminology or accentuation of difficulties was found to be quite unhelpful and resulted in long-term resentment by mothers. They recommended that professionals avoid using negative terminology; for example, one mother reported her obstetrician said: ‘Nature has a way of taking care of these babies; you’ll probably have a miscarriage.’ These mothers are not saying that they want information to be ‘sugar-coated’. They want the truth; but there are many ways of providing the same information. They were clear that they were not looking for pity; rather, they wanted respect. In turn, they respected and appreciated professionals who could support their decision-making process.
This article first appeared, in a fuller form, in Mental Retardation 36 (1) 55-61 (February 1998). It is reprinted with the permission of that journal and of the authors.
It is evident that this study, conducted in the United States, comes from a context widely different from that which would apply in an Irish study, but it was felt that the mothers’ reflections