Literature Review: men in ante-natal screening

13 April 2010

Sandi Dheensa is a first-year doctoral researcher in Primacy Care Clinical Sciences at the University of Birmingham, with a background in Health Psychology. Her doctorate, which is supervised by Dr Alison Metcalfe and Dr Bob Williams, concerns men’s involvement in antenatal genetic screening.

An initial literature review (featured below), conducted using databases such as PSYCInfo, EMBASE, CINHAL, MEDLINE, ASSIA and IBSS, has revealed some relevant issues, but more importantly has revealed that more research with men is urgently needed.

Sandi would like to be notified of any relevant research not identified in this Literature Review.  Sandi can be contacted at:  SXD954@bham.ac.uk

Investigating Men’s Involvement in Antenatal Genetic Screening:  the Literature Review

In the UK, antenatal genetic screening is offered to all pregnant women to determine the chances of the unborn baby being affected by conditions such as Down’s syndrome, sickle cell, and spina bifida. In preparation for a doctoral study, a literature review was conducted focusing on the involvement of men in antenatal screening and the psychosocial impact of the tests. Involvement is defined as the amount men partake in decision making about screening, such as which of the optional screening tests to accept and what to do if a high chance of having a genetic condition is detected. It is also defined as the amount of information men seek out and receive and how emotionally invested they are in the screening process.

Involving men is important to make sure that both prospective parents are well informed of the risks and benefits of screening. Providing men with support may also help to manage anxiety and depression, which research suggests is experienced by men during and after pregnancy [18] [20]. Involving men can also encourage positive outcomes, such as helping men to to adapt to the pregnancy [7] [9], which in turn can help increase their confidence in their parenting abilities. For these reasons amongst others, recent policy changes such as the Gender Equality Duty [12] and reports by the Coalition of Men and Boys [5] encourage public sectors such as the NHS to involve and support men in pregnancy and childcare.

The literature review revealed that existing research focusses mainly on women (e.g. [11], [14]), so it is unclear how much men are, and wish to be, involved. However, NICE antenatal care guidelines (2008) are made with regards to both parents; for example, they state that the “views, beliefs and values of the woman and her partner should be sought and respected”, and that “both parties should be provided with the necessary information and support at every opportunity” (3.1, p37). Despite this, very few of the studies upon which the guidelines are based acknowledge men’s views ([3] [8] [18]).

Although some research shows that women are keen for their partners to be involved in screening decisions [16], various barriers have been identified from the few studies found. Firstly, research suggests that men and women believe managing the pregnancy period is the sole responsibility of the woman [9, 21; 25; 30]. This belief seems to be reinforced by men’s perception of antenatal units as being dominated by women, regarding both the patients and the staff [26] [30].

As well as internal beliefs men may hold, various external constraints may prevent men from getting involved. For example, some face stigmatisation from  friends and family for acting outside of the traditional masculine role [23] [25]. Healthcare staff may also hold stereotypical views about men’s involvement; research suggests that men feel unacknowledged by staff as an ‘equal parent’, and feel pushed aside as the focus is often placed exclusively on  the female [17] [21]. This a particular problem with young fathers [27]. The woman’s embodiment of the pregnancy may also contribute to the perception that screening does not concern the man [9] [19].  This kind of exclusion can cause men feelings of helplessness, anxiety and distress [2] [31].

The differences in duration and pay between statutory maternity leave and paternity leave also act as a barrier.  Men are unable to take paternity leave to attend antenatal appointments, making attendance at appointments impossible for some [6]. Non-attendance is an often cited cause for the lack of men’s involvement, and the resulting discrepancy in the information gathered about screening between men and women  [13] [19] [23] [30]. Men often rely on receiving information from their baby’s mother [21], meaning the woman may act as a ‘gatekeeper’ to men’s involvement. As research shows, sometimes women do not involve their baby’s father as much as they think; for example, although women in Gottfredsdóttir et al’s (2008) study felt that they had made the decision to accept Down’s Syndrome screening jointly with their partner, some men felt that the women had reached the decision alone. As a result, they felt they had missed their opportunity to discuss their options and gain information. Skirton and Barr (2009) found similar results; 79.3% of the 111 respondents, only 11 of whom were men, stated that both parents were involved in decision making regarding screening. However, nearly a third of those who had claimed that their decisions were made jointly had not discussed screening with their partner.

Emphasising the genetic link the father has with his unborn baby may facilitate men’s involvement; this appears to provide men with a sense of embodiment and responsibility that may previously have been exclusive to the woman.  For example, Reed (2009) found that women were more likely to feel responsibility for screening was shared if their partner had to be physically screened for sickle cell and thalassemia. Men also felt more involved if there was a history of genetic illness within their own family or if they had to trace genetic disorders in estranged family [21] [26].

Evidence also suggests that men who are involved tend to seek technical information, which contrasts the emotional and corporeal concerns held by women [4] [9] [13] [21] [19]. By relaying information between healthcare professionals and their partners, the man’s presence may buffer the detrimental impact that high anxiety can have on women’ decision-making and maximise the amount of information gathered [14] [23].

Although some ideas have been generated by this literature review, further investigation is warranted as in existing research, the role of men has mostly been explored as a supporter to their partners, rather than to gain an insight into their personal experiences [1] [10] [15]. Moreover most studies that include men have questionable dependability and credibility with regards to men’s views, which are frequently given by-proxy via women [4] [21]. Also, couples are often interviewed together [19] [26] meaning participants may feel limited in what they can disclose before their partner, leaving potential for acquiescence by men and insufficient depth to interviews. Moreover, much of the previous research has been conducted internationally, e.g. in the USA, Sweden, Iceland, Nepal and Tanzania, meaning the issues raised may not be relevant to the NHS service within the UK.

Further research is also needed to explore the ethical issues associated with involving men more, such as potentially compromising women’s autonomy or failing to detect domestic violence due to limited time alone with the woman. A three phase study will therefore be carried out; men and women will be interviewed about men’s involvement and a survey will be developed and administered to measure these views more extensively. Implications to research, policy and practice will be identified and reported to The Fatherhood Institute in due course.

References/footnotes

1. Barclay, L. and Lupton, D. (1999). The experiences of new fatherhood: a sociocultural analysis. Journal of Advanced Nursing, 29 (4), 1013 – 1020.

2. Berry LM. (1988). Realistic expectations of the labor coach, Journal of Obstetric, Gynaecologic, and Neonatal Nursing, 17(5): 354-355.
3.Bricker, L., Garcia, J., Henderson, J., Mugford, M., Neilson, J., Roberts, T., and Martin, M. A. (2000). Ultrasound screening in pregnancy: a systematic review of the clinical effectiveness, costeffectiveness and women’s views. Health Technology Assessment, 4,1–193.
4. Browner, C. H. and Preloren, H. M., (1999). Male partners’ role in Latinas’ amniocentesis decisions. Journal of Genetic Counseling, 8 (2), 85 – 108.
5. Coalition of Men and Boys. (2009). Man Made: Men, masculinities and equality in public policy. Retrieved from http://www.comab.org.uk.
6. Directgov (2010, April 6th). Statutory Paternity Leave Retrieved from http://www.direct.gov.uk/en/Parents/Moneyandworkentitlements/Parentalleaveandpay/DG_10029398.
7. Draper, J. (2002) ‘It’s the first scientific evidence: men’s experience of pregnancy confirmation. Journal of Advanced Nursing, 39, 6, 56370.
8. Durosinmi, M. A., Odebiyi, A. I., Akinola, N. O., Adediran, L. A., Aken’Ova, P., Okunade, P. A., Halim, N. K., Onwukeme, K. E., Olatunji, P. O. and Adegoroye, D. E.(1997). Acceptability of prenatal diagnosis of sickle cell anaemia by a sample of the Nigerian population [Abstract]. African Journal of Medicine and Medical Sciences, 26 (1–2), 55–8.
9. Ekelin, M., CrangSvalenius, E. and Dykes, A. (2004). A qualitative study of mothers’ and fathers’ experience of routine ultrasound examination in Sweden, Midwifery, 20, 335–344.
10. Finnbógadottir, H., Crang-Svalenius, E., and Persson, E. (2003). Expectant first-time fathers’ experiences of pregnancy. Midwifery, 19 (2), 96–105.
11. Garcia, E., Timmermans, D. R. M. and van Leewen, E. (2008). Rethinking autonomy in the context of prenatal screening decision making. Prenatal Diagnosis, 28, 115 – 120.
12. Gender Equality Duty (2007). Retrieved from http://www.equalityhumanrights.com/.
13. Gottfredsdóttir, H., Sandall, J. and Björnsdóttir, K. (2008). ‘This is just what you do when you are pregnant’: a qualitative study of prospective parents in Iceland who accept nuchal translucency screening. Midwifery, 6, 711 – 720.
14. Green J. M., Hewison, J., Bekker, H. L., Bryant, L. D., Cuckle, H. S (2004) Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technology Assessment, 8 (33) 117128.
15. Hildingsson, I. and Häggström, T. (1999) Midwives’ lived experiences of being supportive to prospective mothers/parents during pregnancy. Midwifery, 15(2):82–91.
16. Jaques, A. M., Bell, R. J., Watson, L., Halliday, J. L. (2004). People who influence women’s decisions and preferred sources of information about prenatal testing for birth defects. Australian and New Zealand Journal of Obstetrics and Gynaecology, 44 (3) 233 – 238.
17. Kaila-Behm, A. and Vehviläinen-Julkunen, K. (2000). Ways of being a father: how firsttime fathers and public health nurses perceive men as fathers. International Journal of Nursing Studies, 37 (3), 199 – 205.
18. Kemp. J., Davenport, M. and Pernet, A. (1998). Antenatally diagnosed surgical anomalies: the psychological effect of parental antenatal counseling. Journal of Pediatric Surgery, 33 (9),1376 – 1379.
19. Kenen, R, Smith, AC, Watkins, C, ZuberPittore, C (2000) To use or not to use: male partner’s perspectives on decision making about prenatal diagnosis. Journal of Genetic Counselling, 9 (1), 3345.
20. Lee, E. (2010). Pathologising fatherhood: The case of man postnatal depression in Britain. In B. Gough and S.Robertson (Eds.), Men, Masculinities and Health: Critical Perspectives. (pp. 161 – 177).Hampshire: Palgrave Macmillan.
21. Locock, L. and Alexander, J. (2006). Just a bystander? Men’s place in the process of fetal screening and diagnosis. Social Science and Medicine. 62, 1349 – 1359.
22. McCreight, B.S. (2004) ‘A grief ignored’: narratives of pregnancy loss from a male perspective, Sociology of Health and Illness, 26 (3), 326350.
23. Mullaney, B. (2006). Barriers to and attitudes towards promoting husbands’ involvement in maternal health in Katmandhu, Nepal. Social Science and Medicine, 62, 2798 – 2809.
24. National Institute for Health and Clinical Excellence. (2008) Antenatal Care: Routine Care for Pregnant Women. RCOG Press: London.
25. Plantin, L., Månsson, S., Kearney, J. (2003). Talking and Doing Fatherhood: On Fatherhood and Masculinity in Sweden and England.   Fathering, 1 (1), 3 – 26.
26. Reed, K. (2009). ‘It’s them faulty genes again’: women, men and the gendered nature of genetic responsibility in prenatal blood screening. Sociology of Health and Illness, 31 (3), 343 – 359.
27. Reeves, J., Gale, L., Webb, J., Delaney, R. and Cocklin, N. (2009). Focusing on young men: developing integrated services for young fathers. Community Practitioner,
82 (9), 18 – 21.

28. Sjögren, B. (1992). The expectant father and prenatal diagnosis. Journal of Psychosomatic Obstetrics and Gynaecology, 13 (3), 197 – 208.

29. Skirton, H. and Barr, O. (2009). Antenatal screening and informed choice: acrosssectional survey of parents and professionals. Midwifery. DOI 10.1016/j.midww.2009.01.002.
30. Theuring, S., Mbezi, P., Luvanda, H., JordanHarder, B., Kunz, A. and Harms, G. Men’s involvement in PMTCT services in Mbeya Region, Tanzania. AIDS and Behaviour, 13, S92 – S102
31. Vehviläinen-Julkunen, K. and Liukkonen, A. (1998). Fathers’ experiences of childbirth. Midwifery, 14 (1), 10 – 17.

Tags: ,