On being at higher risk: A qualitative study of prenatal screening for chromosomal anomalies

Abstract

This paper explores the meaning of higher risk status to women undergoing prenatal maternal screening for chromosomal anomalies. Quotations from lightly structured interviews and transcripts of pre-screening consultations in suburban London are used to illustrate pregnant women's diverse responses to the offer of screening, and to entering, living with and exiting from higher risk status. Some women reject screening in order to avoid the psychosocial and medical risks associated with higher risk status, or because they rule out pregnancy termination. They may question the risk selection implicitly built into the provision of preventative systems for some health problems but not others. Women who screen at higher risk may challenge this designation by questioning the system-specific probability used to separate them from the lower risk population. However, some experience distress even when they appreciate the precautionary basis on which their higher risk designation is based. They may find disengagement from higher risk status difficult after a diagnostic test has ruled out chromosomal anomalies. The findings highlight the complexity of communicating risk information to pregnant women and other screened populations, and emphasise the need to support those living with higher risk status and the benefits of keeping the time lived with this status as short as possible.

Probabilistic thinking and health risks: An editorial

“…In relation to the social science of health risk, a particularly interesting issue opened up by this analysis is that of how service-users and professionals themselves variably understand and utilise inductive probabilistic reasoning, and navigate its shortcomings. The limited amount of relevant research which has been undertaken suggests that service-users may recognise multiple probabilities arising from differences in selection of risk factors and control information in order to manage 'their' probability of experiencing an adverse event such as Huntingdon's disease (Leontini, 2010); or may view membership of a higher risk category as itself a physical health problem (Heyman et al, 2006). The following quotation (Heyman and Henriksen, 1998, p. 183) In this unusual and instructive case, the respondent had ruled out diagnostic testing for Down's syndrome and pregnancy termination, but nevertheless opted for serum screening.…”

Kvinners erfaringer i møtet med abortnemnda ved sene svangerskapsbrudd

“…Det diskuteres for eksempel om det er mulig å dele kvinnene i risikogrupper og differensiere informasjonsmåte og undersøkelsesmetodikk på grunnlag av det (Heyman et al, 2006, Chervenak et al, 2008, Georgsson Öhman et al, 2009. Uansett er det viktig å bruke tid for å optimalisere opplevelsen for paret som kommer til undersøkelsen (Ekelin et al, 2004a).…”

“…Studier problematiserer at situasjonen ikke alltid er optimal fordi kvaliteten på ultralydundersøkelsene fremdeles er varierende (Heyman et al, 2006). Forskjellige studier viser at kvinner som kategoriseres i gruppen der det etableres mistanke om at noe er unormalt, opplever mer uro og angst (Baillie et al, 2000.…”

“…One study concludes that health care professionals need to clearly understand the complexities of probabilistic reasoning and to appreciate the difficulty of communicating risk information effectively (35). Studies show that few women read about and actively prepare themselves for the examination (36,37).…”

Screening for health risks: A social science perspective

“…In such cases, 'benefits' may be considered with respect to the parents, the fetus/baby and/or taxpayers. Screening creates a new role, that of possessing higher risk status (Heyman et al, 2006) which incumbents may be enjoined to manage responsibly, i.e. in socially prescribed ways.…”