Women with Disabilities: Barriers and Facilitators to Accessing ...

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WOMEN WITH DISABILITIES: BARRIERS AND FACILITATORS TO ACCESSING SERVICES DURING PREGNANCY,CHILDBIRTH AND EARLY MOTHERHOODSchool of Nursing and Midwifery, Trinity College Dublinmaternity-related healthcare needs, most referring to the need for improvedbreast and cervical smear screening (Ager and Littler, 1998; Barr et al, 1999;Broughton and Thomson, 2000; Biswas et al, 2005; Lehmann, 2005) and forfamily 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 antenataland maternity services for women with intellectual disabilities.Studies have found frontline caring staff and parents to have conservative andprotective perspectives regarding the sexuality of women with intellectualdisability (Cuskelly and Bride, 2004; Drummond, 2006). Such women are oftenconsidered unable to make rational informed choices about pregnancy andmotherhood, and are at greater risk to coercive sterilisation or forcedcontraception (Tilley, 1998; NDA, 2007). This protectionism has impeded thepotential of persons with intellectual disability to make decisions about theirsexuality, including reproductive health, and to self-advocate, and is evident inSimpson et al’s study into the feelings, attitudes and experiences of people withID regarding sex and sexuality. This study employed a varied sample of 500people with and without intellectual disabilities (Simpson et al, 2006). The Irishlaw for the ‘protection of mentally impaired persons’ effectively criminalisessexual intercourse with persons who have intellectual disability (Government ofIreland, 1993). The occurrence, therefore, of a pregnancy among theintellectually disabled population is potentially the result of a criminal act, andservices/families may be discouraged from bringing this to widespreadattention. Such reticence may delay the openness to discussing and willingnessto address the healthcare needs of women with intellectual disabilities duringpregnancy, childbirth or early motherhood.6.2.2. Society’s attitudes to women with intellectual disabilities caringfor their children: the presumption of parental inadequacyThe qualitative works of Booth and Booth (1993, 1994; 1995; 2002; 2003 and2006) have revealed the anguish and grief of parents with intellectual disabilitywho have had their children removed from their care. Whereas the levels of115
WOMEN WITH DISABILITIES: BARRIERS AND FACILITATORS TO ACCESSING SERVICES DURING PREGNANCY,CHILDBIRTH AND EARLY MOTHERHOODSchool of Nursing and Midwifery, Trinity College Dublindisability are not identified in these papers, it is likely, from the descriptions, thatthe participants had mild intellectual disabilities. Others, notably Tymchuk(1985), Budd and Greenspan (1985) and Tymchuk et al (1988) have exploredthe ability of parents with mild levels of intellectual disability to learn how toparent adequately, through decision-making training. Perkins et al (2002) andDitchfield and Burns (2004) argue that society continues to focus on the risk toand the outcomes for the children of parents with intellectual disabilities, with noclear concern for the risks to the health and wellbeing of the parents, and, moreparticularly, 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 supportnetworks for pregnant women and mothers with intellectual disability, notingthat, in the absence of such supports, such women are more likely toexperience stress and poor health. The only study located that was focussed onthe outcomes of pregnancy in women with intellectual disability found increasedrates of pre-eclampsia, low birthweights and increased admission of resultingbabies to neonatal intensive care (McConnell et al, 2003). This important studycalls for further research to explore the reasons for such adverse outcomes.6.3. Facilitators to improve access to services for women withintellectual disabilitiesThe recent study of 152 trusts providing obstetric or midwifery-led maternityservices in England showed that 58% of trusts in England have antenatal andpostnatal information available in a specific form for women with learningdifficulties (Commission for Healthcare Audit and Inspection, 2008). In makingthe case for improved sexual health and maternity services for women withintellectual disabilities Tarleton and Ward (2007), in their study into parentingwith support, recommend that such services to be provided in a ‘joined-up’approach. Apart from Tarleton and Ward's study, the literature yielded little, ifany, evidence for structures or processes that could facilitate health or maternitycare for women with intellectual disabilities. It is generally acknowledged thatthis is an under-addressed and under-researched field.116
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