A meta-synthesis of pregnant women's decision-making processes with regard to antenatal screening for Down syndrome

Abstract

The diffusion of antenatal screening programmes for Down syndrome has triggered much discussion about their powerful potential to enhance pregnant women's autonomy and reproductive choices. Simultaneously, considerable debate has been engendered by concerns that such programmes may directly contribute to the emergence of new and complex ethical, legal and social dilemmas for women. Given such discussion and debate, an examination of women's decision-making within the context of antenatal screening for Down syndrome is timely. This paper aims to undertake a meta-synthesis of qualitative studies examining the factors influencing pregnant women's decisions to accept or decline antenatal screening for Down syndrome. The meta-synthesis aims to create more comprehensive understandings and to develop theory which might enable midwives and other healthcare professionals to better meet the needs of pregnant women as they make their screening decisions. Ten electronic health and social science databases were searched together with a hand-search of eleven journals for papers published in English between 1999 and 2008, using predefined search terms, inclusion and exclusion criteria, and a quality appraisal framework. Nine papers met the criteria for this meta-synthesis, providing an international perspective on pregnant women's decision-making. Twelve themes were identified by consensus and combined into five core concepts. These core concepts were: destination unknown; to choose or not to choose; risk is rarely pure and never simple; treading on dreams, and betwixt and between. A conceptual framework is proposed which incorporates these themes and core concepts, and provides a new insight into pregnant women's complex decision-making processes with regard to antenatal screening for Down syndrome. However, further research is necessary to determine whether or not the development of a model of decision-making may empower pregnant women in making choices about screening.

Introduction

The development and implementation of new reproductive technologies, including antenatal screening for Down syndrome, has triggered much discussion about their powerful potential to enhance pregnant women's autonomy and reproductive choices (Brown and Webster, 2004, Buchanan et al., 2000, Scully et al., 2006). Concurrently, considerable debate is engendered by concerns that such technologies may directly contribute to the emergence of new and complex ethical, legal and social dilemmas for women (Brown and Webster, 2004, Getz and Kirkengen, 2003). In analyzing such contradictory perspectives, Rapp (2000, page 3) points to the complexity of the decision-making processes confronting women, arguing that:

‘ ….. the construction and routinization of this technology is turning women to whom it is offered into moral pioneers: situated on a research frontier of the expanding capacity for prenatal genetic diagnosis, they are forced to judge the quality of their own fetuses, making concrete and embodied decisions about the standards for entry into the human community.’

Consequently, there has been a proliferation of studies focusing on the decision-making processes of pregnant women with regard to antenatal screening for Down syndrome, many of them qualitative. With more qualitative studies focusing on women's experiences of screening, the ways in which they decide to accept or decline screening, their responses to specific tests and the influence of screening on women's attachment to their fetuses (Garcia et al., 2002), one must ask: What generalizations can be made from the findings of these qualitative studies that will enable midwives and other healthcare professionals to better meet the needs of women as they make their decisions about screening, and how can these studies contribute to the development of theory in the area of decision-making? Separately, the studies may provide glimpses into the experiences of women as they ascribe meaning and reason to their decisions yet do not always contribute significantly to a full understanding of women's decision-making processes (Jenson and Allen, 1996, Paterson et al., 2001, Zimmer, 2006). To create a more comprehensive understanding of study findings, single studies may be synthesized (Bondas and Hall, 2007, Paterson et al., 2001, Sandelowski and Barroso, 2003a, Zimmer, 2006). In other words, the findings from existing studies may be clarified and filled out into thickly descriptive and comprehensive understandings of women's decision-making processes which, in conceptual terms, are greater than the sum of the parts (Schrieber et al., 1997, Zimmer, 2006). Thus, attaining a level of conceptual or theoretical development beyond that achieved by any individual study may increase the usefulness of study findings.

Moreover, such theoretical developments may subsequently be tested empirically or, alternatively, used to explicate a number of existing theoretical frameworks tentatively called upon to explain women's decision-making processes. Such theoretical frameworks include, for example; rational choice (The Theory of Planned Behaviour, Ajzen & Fishbein, 1980) and role adaptation theories (Maternal Role Attainment, Mercer, 1995). The Theory of Planned Behaviour (Ajzen & Fishbein, 1980), for example, posits that in making a decision about screening, women evaluate the potential outcomes of their decision, their own beliefs and attitudes, their perceptions of what they think significant others think they should do, and how difficult it will be to accomplish the decision and then form the intention to carry out the decision if these components converge to support it. In contrast, Mercer's (1995) theory of ‘maternal role attainment’ tentatively suggests that women's decision-making processes may journey through four stages: anticipatory, formal, informal and personal identity. The anticipatory stage is a time of expectation about pregnancy and future motherhood. During the formal stage women may be guided by formal, consensual advice from experts and significant others in the social system. During the informal stage, women may progress from following the guidance of others and begin to structure their decisions to fit themselves and their families according to their past experiences and future goals. The stage of personal identity is characterized by a sense of confidence and satisfaction as women may accept and integrate their decisions. Yet, there is a demonstrable lack of existing literature examining the potential application of such theoretical frameworks to decision-making processes about screening (Wohlgemuth, 2006).

Summarizing, Estabrooks, Field, and Morse (1994) and Paterson et al. (2001) point to the significance of synthesis in presenting more comprehensive understandings and developing theory as a means towards strengthening and facilitating the greater use of qualitative findings in midwifery and healthcare practice. This paper therefore reports on a synthesis of qualitative research studies relating to pregnant women's decision-making processes with regard to antenatal screening for Down syndrome.