Women with disabilities represent a diverse group experiencing a variety of disabling conditions, all of whom require and have a right to individualised care. The National Disability Survey showed about 20,000 women aged 18 - 34 and about 18,500 women aged 35 - 44 had a disability in one or more of the 9 categories used in the survey (National Disability Survey vol. 1 Table 5B). The most frequently cited conditions for women of childbearing age were mental health conditions, pain, mobility, intellectual and learning disability, and difficulties in remembering and concentrating.
Evidence from the literature showed that society has tended to undervalue and discriminate against women with disabilities, and has, particularly in the past, exerted control over their sexual and reproductive lives (Waxman, 1993; Kallianes and Rubenfeld, 1997; Kaplan, 2006). Accessing information with regard to sexuality, and obtaining quality individualised reproductive care is especially difficult for women with disabilities as they are often perceived as asexual and not likely recipients of such care (NWCI, 2006; Piotrowski and Snell, 2007).
Maternity care across the world has become increasingly medicalised, which has led to a diminution of emphasis on the importance of women's experiences during pregnancy and childbirth. Many women, irrespective of their disability status, are unhappy with aspects of their care during pregnancy or birth in Ireland (O'Doherty and Regan, 2006). To have a disability when accessing maternity services, therefore, is to be doubly disadvantaged. The barriers and facilitators experienced by women with a disability when accessing the health and maternity services during pregnancy, childbirth and early motherhood were noted under the 5 headings of: availability, accessibility, accommodation, affordability and acceptability.
In general, services were available in most countries for women with physical disabilities or sensory impairments, but whether the care was appropriate and accessible was questionable. There were, however, poor links between maternity and mental health services (Currid, 2004; Commission for Healthcare Audit and Inspection, 2008), and it was difficult to discover if any suitable services were available for women with intellectual disabilities.
Accessibility of services, in the main, related to the location and models of care, difficulties in transport and moving around the physical environment. For women with sensory impairment there was an identified need to improve access to buildings and services (Nzegwu, 2004), with emphasis on the difficulties of completing registration forms, locating a seat in the waiting area, and realising when to go into the examination room (Ubido et al, 2002). In some instances physical, architectural and communication barriers were so prominent that the availability of particular services were at a sub-optimal level (Miller and Finnerty, 1996; Fiduccia, 1997; Grabois, 2001; D'Eath et al, 2005). Women with mental health difficulties needed particular encouragement to overcome the possible lack of motivation to attend clinics (Zittel-Palamara et al, 2008) or even, rarely, special assistance if they denied the pregnancy totally (Apfel and Handel, 1993; Nicholson et al, 1998a).
Barriers to accommodation centred mainly on the lack of provision of suitable disability-specific health information for women (Conine et al, 1986; Carty et al, 1993). In particular, women with sensory impairments needed information provided in alternative formats (Jones et al, 2007), and all women required information on the existence of mental difficulties in pregnancy and the postnatal period, and of services available to them (Buultjens and Liamputtong, 2007). There were difficulties with communication, caused by physical mal-positioning of reception desks and staff (McKay-Moffat, 2007), and a lack of appreciation of the needs of women with sensory impairments. Interpersonal skills, aids and services were typically deemed inappropriate by women with disabilities, irrespective of their type of disability. This impacted on the issue of informed consent (McEvoy et al, 1983; Mowbray et al, 1995a; Grabois, 2001), resulted in a deficit of information for expectant and/or new parents and contributed to impaired autonomy, decreased self-confidence, self-esteem and self-worth (Thomas, 1997; Tilley, 1998; Walter et al, 2001; Prilleltensky, 2003).
Maternity care professionals had little knowledge about the effects of physical disabilities on pregnancy (Westbrook and Chinnery, 1995; Smeltzer et al, 2007) and the capability of women with all types of disability to parent. In addition, their lack of knowledge of the effects that mental health difficulties had on pregnancy, childbirth and early motherhood (Wiley et al, 2004) led to poor screening practices and inappropriate care (Robinson, 2007).
Women with mental health difficulties were identified as having barriers in the area of affordability (Anderson et al, 2006), as many are from low income families and the costs of childcare and transport may also prevent them from accessing health care services.
Health professionals' lack of knowledge and negative attitudes led to barriers in acceptability, as women did not feel respected or supported (Steinberg, 2006; Commission for Healthcare Audit and Inspection, 2008) and health professionals failed to recognise and appreciate their needs. Evidence from the literature reveals how healthcare workers primarily viewed all mothers with a disability as being dependent recipients of care and services. Women perceived that their right, ability and capacity to parent were constantly met with scepticism (Harris and Bamford, 2001; Prilleltensky, 2003, 2004) and women reported that they felt continually scrutinised, particularly those with an intellectual disability or enduring mental health difficulties (Prilleltensky, 2003; Grue and Tafjord-Laerum, 2002). Women with mental health difficulties appeared to have the most obstacles to surmount, including overcoming a reluctance to admit to their illness, due to the stigmatisation of mental health disorders, and the fear of being judged a 'bad mother' (Edhborg et al, 2005; Davies and Allen, 2007). The fear of losing custody of their child led, in many instances, to lack of trust in health care providers (Montgomery et al, 2006; Jesse et al, 2008) and the feeling that they were continually having to prove themselves to the authorities. Struggling to be accepted as ordinary and to be considered within the concept of normality, mothers felt vulnerable (Conley-Jung and Olkin, 2001; Llewellyn et al, 2003) and went to great lengths to present themselves as managing the transition to parenthood competently.
Women with intellectual disabilities encountered society's negative attitudes to them becoming pregnant and caring for their children also (Cuskelly and Bride, 2004; Drummond, 2006), with a resulting lack of support networks for them during pregnancy, childbirth and early motherhood (Aunos et al, 2008). Children of mothers with intellectual disabilities or mental health difficulties were often taken into custody, despite a lack of evidence of harm to them. Following such removal, parents were often unrepresented in the court proceedings and formal court interventions were not activated to help parents regain custody (Swain and Cameron, 2003).
Facilitators to access that were identified for women with all disabilities included improved physical access to all care areas, the provision of sensitive antenatal education classes (Conine et al, 1986; Carty et al, 1993) and education of health professionals to improve their knowledge of, and attitudes towards, women with disability (Baker et al, 1997; Smeltzer, 2007). Specific disability awareness and training for health professionals, particularly in speaking correctly for lip-readers (RCN, 2007), and in the use of basic sign language is recommended in the literature. The use of telephone amplifiers and/or pictorial signage, audible, visual and tactile systems in waiting rooms and information provided in an appropriate language and format were all noted to be useful in improving accessibility to services (Clark, 2002; Nzegwu, 2004). It was also found that the employment of sign language interpreters in appropriate languages is useful for women with sensory loss who are from ethnic minority groups (Pierce, 2003).
For women with mental health difficulties, improved communication between professionals in maternity services and those in mental health care was seen as desirable (Shakespeare et al, 2003), with emphasis on the provision of more counselling services instead of drugs (Edge and Rogers, 2005; Edge, 2006). The key Irish study of the experiences of people with disabilities of the health services, commissioned by the National Disability Authority (D'Eath et al, 2005), reported some positive experiences particularly in relation to care provided by General Practitioners. People with mental health difficulties, however, did not experience the same degree of partnership approaches and inclusive practices (D'Eath et al, 2005). The introduction of telesupport or web-based support groups (Ugarriza, 2002), the provision of designated perinatal multidisciplinary teams in the community (Oluwatayo and Friedman, 2005), and the introduction of more specialist mother and baby psychiatric units were also promoted (Lewis, 2007).
The National Disability Authority and National Women's Council of Ireland have previously highlighted the need to improve access to reproductive and sexual health services for women with disabilities in Ireland, as well as the need for disability awareness training among health professionals (NWCI, 2001; NDA, 2007). Evidence from the NDA's second national survey suggests that the public's attitudes towards disability are improving (NDA, 2007). The literature presented here shows that in many countries women with disabilities have reported that services do not adequately meet their needs and emphasises the need to improve the care services for women with disabilities attempting to access health care during pregnancy, childbirth and early motherhood.
The dearth of literature in this review from the Irish perspective highlights the importance of the current study commissioned by the National Disability Authority, of which this review forms the first part. The second part, which leads on from and is complementary to this paper, is a review of Irish and international social policies relating to disability and childbirth (Begley et al, 2009). These 2 documents demonstrate a need for comprehensive policy development and planning in consultation with women with disabilities to provide an improved response to the maternity service needs of this group.
The starting point for any change in service provision has to be with the individuals seeking that service (Kennedy and Murphy-Lawless, 2002), so if access to health services during childbirth, pregnancy and early motherhood is to be improved for women with disabilities, their experiences must be documented. The third section of the NDA-commissioned work, therefore, is a study to explore the strengths and weaknesses of publicly-funded Irish health services provided to women with disabilities in relation to pregnancy, childbirth, and early motherhood (Begley et al, 2010). This study gathered information from women with physical disabilities, visual or hearing impairment, intellectual disabilities or mental health difficulties, throughout the country, with a view to informing the development and improvement of maternity care services for women with disability in Ireland.