‘Who's the guy in the room?’ Involving fathers in antenatal care screening for sickle cell disorders

Abstract

Fathers are increasingly invited to take part in antenatal care of which screening for sickle cell trait is a part. Expectations about involvement reflect changing perceptions of fatherhood and negotiation of gendered identities. Current policy supports male involvement, but is less clear on what basis and with what consequences. In exploring this, our qualitative study, using semi-structured interviews, presents the experiences of fathers who have recently undergone antenatal screening for sickle cell. The sample was generated in discussion with eight non-governmental organisations. We recruited 24 fathers from nine UK cities. Our analysis outlines the importance of 'presence', in which fathers rely on nurturing definitions of fatherhood to display their sense of responsibility. Fathers, however, struggled to find a meaningful role as traditional masculinities became juxtaposed with new and complex forms of gender organisation, creating the potential for estrangement. To conclude, screening policy makes an appeal to emergent masculinities. It also generates risks and compromises choice, due to the normative values implicit in the screening process, reinforced by the more controlling aspects of health surveillance. This creates confusion among fathers, who are not sure why they have been invited into the antenatal space.

The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature

“…If men were involved in carrier testing, women were more relaxed about their own responsibility. The study by Atkin et al (2015) also pointed to an increased masculine responsibility during carrier screening. Genetic screening provided men with a chance to feel bodily engaged and to demonstrate responsible "fatherhood. "…”

“…By affected we mean that they wanted to undergo or had already undergone GT for themselves to learn about their genetic conditions and/or were seeking information about the genetic risks of their (unborn) children. Some studies reflected explicitly how GI has sparked a new form of "being affected" 6 , for instance by detecting carriers for recessive genetic disorders (Reed, 2009;Atkin et al, 2015;Hoeltje and Liebsch, 2015).…”

“…The studies in the field of reproductive GR fell into two subcategories: studies focusing on the process of making a decision about having a child if the risk of having a baby with a genetic disease was considerable (n = 7) (Downing, 2005;Dekeuwer and Bateman, 2013;Donnelly et al, 2013;Boardman, 2014a,b;Yau and Zayts, 2014;Hoeltje and Liebsch, 2015) and studies using gender as a category to investigate the role of future parents in the context of prenatal genetic screening procedures (n = 3) (van Berkel and Klinge, 1997;Reed, 2009;Atkin et al, 2015). In addition, one study approached reproductive GR indirectly via the perceptions and opinions of genetic counselors (Ekberg, 2007).…”

“…Similar to the context of disclosing genetic risk in the family, some studies focused on a rational/principle-oriented approach to responsibility (n = 6, code B4a) (Ekberg, 2007;Dekeuwer and Bateman, 2013;Donnelly et al, 2013;Boardman, 2014a,b;Yau and Zayts, 2014) and some on an affective/relational approach (n = 5, code B4b) (van Berkel and Klinge, 1997;Downing, 2005;Reed, 2009;Atkin et al, 2015;Hoeltje and Liebsch, 2015).…”

Autonomous decision-making for antenatal screening in Pakistan: views held by women, men and health professionals in a low–middle income country

“…Within all of the viewpoints in our study, participants generally agreed with the woman and her husband making joint decisions. Research in Western countries also shows that women want to involve their partner in decision-making and that partners want to be involved, 11,17,26,27 so these findings are not specific to LMICs. However, unlike studies in Western countries, none of the viewpoints provide support for the woman as an independent decision-maker.…”