Chapter Six: Women with intellectual disability: barriers to accessing services and professional help during pregnancy, childbirth and early motherhood

6.1. Introduction

The literature concerning women with intellectual disabilities and their experiences of pregnancy, childbirth and early motherhood was not extensive. Initial sections of this chapter will present the barriers for these women to accessing services, as identified from 25 published research papers (Appendix 6, Table 8). No appreciable amount of literature was found on any of the barriers except acceptability of services. It is not known, but it is unlikely that there are specific services available for women who have intellectual disabilities and are pregnant. The final section describes facilitators that were noted in only 1 paper (Appendix 6, Table 9).

6.2. Barriers to acceptability of services for women with intellectual disabilities

6.2.1. Society's attitudes to women with intellectual disabilities becoming pregnant

Stehlik (2001) traces the history of the development of negative attitudes towards the sexual and reproductive capability of women with intellectual disabilities. These negative attitudes, she argues, continue today, with prevention of conception as the ultimate aim, through the employment of involuntary sterilisation and non-consensual contraception. Priestly (2000) argues that the infantilisation of women with intellectual disability allowed their reproductive health to be ignored, with no impetus to carry out breast examinations and cervical smear testing or to maintain menstrual care. The existence of these disparities has only in recent years come to light and is now becoming a focus of care (Ditchfield and Burns, 2004; Rodgers and Lipscombe, 2005; Rodgers et al, 2006). A review of the literature on the sexual health of women with intellectual disabilities reveals little research into their pregnancy or maternity-related healthcare needs, most referring to the need for improved breast and cervical smear screening (Ager and Littler, 1998; Barr et al, 1999; Broughton and Thomson, 2000; Biswas et al, 2005; Lehmann, 2005) and for family planning education/sex education (Carr, 1995; Lehmann, 2005; Drummond, 2006). Sheerin (1998b) and others (McConnell et al, 2003; Kohen, 2004), in recognising this shortfall, call for the instigation of improved antenatal and maternity services for women with intellectual disabilities.

Studies have found frontline caring staff and parents to have conservative and protective perspectives regarding the sexuality of women with intellectual disability (Cuskelly and Bride, 2004; Drummond, 2006). Such women are often considered unable to make rational informed choices about pregnancy and motherhood, and are at greater risk to coercive sterilisation or forced contraception (Tilley, 1998; NDA, 2007). This protectionism has impeded the potential of persons with intellectual disability to make decisions about their sexuality, including reproductive health, and to self-advocate, and is evident in Simpson et al's study into the feelings, attitudes and experiences of people with ID regarding sex and sexuality. This study employed a varied sample of 500 people with and without intellectual disabilities (Simpson et al, 2006). The Irish law for the 'protection of mentally impaired persons' effectively criminalises sexual intercourse with persons who have intellectual disability (Government of Ireland, 1993). The occurrence, therefore, of a pregnancy among the intellectually disabled population is potentially the result of a criminal act, and services/families may be discouraged from bringing this to widespread attention. Such reticence may delay the openness to discussing and willingness to address the healthcare needs of women with intellectual disabilities during pregnancy, childbirth or early motherhood.

6.2.2. Society's attitudes to women with intellectual disabilities caring for their children: the presumption of parental inadequacy

The qualitative works of Booth and Booth (1993, 1994; 1995; 2002; 2003 and 2006) have revealed the anguish and grief of parents with intellectual disability who have had their children removed from their care. Whereas the levels of disability are not identified in these papers, it is likely, from the descriptions, that the participants had mild intellectual disabilities. Others, notably Tymchuk (1985), Budd and Greenspan (1985) and Tymchuk et al (1988) have explored the ability of parents with mild levels of intellectual disability to learn how to parent adequately, through decision-making training. Perkins et al (2002) and Ditchfield and Burns (2004) argue that society continues to focus on the risk to and the outcomes for the children of parents with intellectual disabilities, with no clear concern for the risks to the health and wellbeing of the parents, and, more particularly, to the mothers.

A number of authors (Kroese et al, 2002; Llewellyn and McConnell, 2002; McConnell et al, 2003; Aunos et al, 2008) have explored the issue of support networks for pregnant women and mothers with intellectual disability, noting that, in the absence of such supports, such women are more likely to experience stress and poor health. The only study located that was focussed on the outcomes of pregnancy in women with intellectual disability found increased rates of pre-eclampsia, low birthweights and increased admission of resulting babies to neonatal intensive care (McConnell et al, 2003). This important study calls for further research to explore the reasons for such adverse outcomes.

6.3. Facilitators to improve access to services for women with intellectual disabilities

The recent study of 152 trusts providing obstetric or midwifery-led maternity services in England showed that 58% of trusts in England have antenatal and postnatal information available in a specific form for women with learning difficulties (Commission for Healthcare Audit and Inspection, 2008). In making the case for improved sexual health and maternity services for women with intellectual disabilities Tarleton and Ward (2007), in their study into parenting with support, recommend that such services to be provided in a 'joined-up' approach. Apart from Tarleton and Ward's study, the literature yielded little, if any, evidence for structures or processes that could facilitate health or maternity care for women with intellectual disabilities. It is generally acknowledged that this is an under-addressed and under-researched field.

There have, however, been a number of generic developments, both nationally and internationally, which may become vehicles for the development of appropriate and positive service responses to women with intellectual disability. The United Nations Convention on the Rights of the Person with Disabilities (United Nations (U.N), 2006), which Ireland has signed up to, affirms that people with disabilities have the right to parenthood, fertility, reproduction, family planning (Article 1) and to 'the same range, quality and standard of free or affordable health care and the area of sexual and reproductive health...' (U.N., 2006: Article 25). At the time of writing Ireland has not yet ratified the Convention.

In Ireland, the publication of the Disability Act (Government of Ireland, 2005) provides a statute-based right for people with disabilities to have an independent assessment carried out in relation to their disability-related health needs. The National Standards for Needs Assessment issued by the Health Information and Quality Authority (2007) provide protocols for referral to services such as maternity services within the assessment of needs process.

6.4. Summary

Access to maternity services by women with intellectual disabilities is an under-researched area, and their experiences of pregnancy, childbirth and early motherhood are not well described. The research that exists in this area documents widespread negative attitudes towards the idea of women with intellectual disabilities becoming pregnant and taking on the role of parents. Providing support for women with intellectual disabilities as they experience pregnancy, childbirth and early motherhood is the main suggestion for improvement that arises from the literature. Recent legislation may lead to improved access to maternity services for women with intellectual disabilities in Ireland.

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