The focus of the next section of the review (Chapters 3 - 6) is to identify and present a comprehensive report of the barriers and facilitators experienced by women with a disability (physical, sensory, mental health or intellectual) as they access and use the maternity and healthcare services during pregnancy, childbirth and motherhood. Firstly, a definition of 'access to services' in the context of women with disabilities of all kinds is provided, thus setting the scene for the presentation of a detailed exploration of facilitators and barriers to access of services in this and succeeding chapters.
Chapter 3 presents the experiences of women with a physical disability. Initial sections of this chapter present the barriers to accessing services, as identified from 27 published research papers (Appendix 3, Table 2), in terms of accessibility, accommodation and acceptability of services. A final section describes facilitators to access, under each of these headings that were noted in 8 publications (Appendix 3, Table 3).
The Commission on the Status of People with Disabilities (1996) argued that people with disabilities have a fundamental right to a health service which is accessible, equitable, individual centred and responsive to their particular need. Furthermore, positive health outcomes and social gain for women with disabilities are dependent on accessible and appropriate health care and the provision of adequate health information to woman during pregnancy, childbirth and early motherhood.
Access is a multidimensional concept with 5 distinctive dimensions, incorporating both the potential to obtain and the actual receipt of health care (Aday and Andersen, 1984). It encompasses more than just access to the physical environment; it also includes access to health information and effective communication between health professionals and women. Women with disabilities report insufficient access to health care services (Fouts et al, 2000). They encounter substantial challenges, which impact significantly on their ability to access care. These challenges are varied and can be categorised as physical, attitudinal, communicational, informational and financial (Thierry, 1998). The term access has multiple meanings and a precise definition is difficult to find. The Oxford Dictionary describes the term as 'the action of going or coming to or into; coming into the presence of, or into contact with; approach, entrance and the habit or power of getting near or into contact with; entrance, admittance, admission' (Oxford Dictionary, 2008). Words synonymous with the term include 'coming to or towards and approaching'. Terms such as access, availability and acceptability are often used interchangeably.
Many researchers (Aday, 1975; Penchansky and Thomas, 1981; Parish and Huh, 2006) attempt to define, refine and interpret the concept which has resulted in the development of many different interpretations. Such interpretations range from the potential to obtain available resources and services to ensuring equal use of services for equal need. The use and relativity of the services forms the basis of Aday's (1975) definition. The author contends that a 'lack of access occurs when there is a need for the services but these services are not being utilised' (Aday, 1975:pg. 221). However, Penchansky and Thomas (1981) extend the definition further and suggest that access is a measure of the degree of 'fit' between the characteristics and expectations of the person and characteristics of the health care services. Parish and Huh conclude that it is the 'timely utilisation of services to achieve the best possible health' (Parish and Huh, 2006:pg. 7). A commonality in all definitions is that the concept is dependent on the person's ability and willingness to enter into the health care services (Penchansky and Thomas, 1981).
Penchansky and Thomas (1981) suggested how the concept has 5 reasonable and distinctive dimensions which are interrelated and not easily separated. The dimensions are:
Challenges encountered in any of these 5 component dimensions will impact significantly on women in 3 distinctive ways - a decrease in the utilisation of services, dissatisfaction with the services and care received and an inequality in service provision (Penchansky and Thomas, 1981). Availability and affordability have much the same challenges for able-bodied women as for those who are disabled, with the exception that many disabled women are unemployed and therefore are less likely to be able to access private care. The challenges and barriers experienced by women with physical disabilities when accessing health services during pregnancy, childbirth and early motherhood are described in more detail under the remaining 3 headings.
The Maternity and Infant Care Scheme provides a programme of care to all women in Ireland during pregnancy, childbirth and early motherhood, and ensures that care administered through the public system is delivered with no financial cost incurred by women. Accessibility of health care is determined, however, by the location of services. Services that can be accessed by public transport, are located in the local vicinity and flexible in the provision of care are more accessible for women with disabilities.
In the western world, most women now give birth in hospital. Although the reasons for the move from home to maternity hospital in Ireland are multi-faceted, they are undoubtedly influenced by Department of Health and Children policy to centralise services (Kennedy, 2002), thus providing units of a minimum critical size. This ensures that specialist staff receive sufficient experience to maintain skills in diagnosis and treatment of rare complications but inevitably means that some women will live at a distance from the nearest maternity unit.
In Ireland there are 19 maternity hospitals and 2 midwifery-led units that are responsible for the provision of publicly-funded health care to women during pregnancy, childbirth and early motherhood. In addition, independent midwives can be contracted by any woman planning to have a home birth. The hospitals are geographically spread throughout the country and are generally located in densely populated urban areas. This regionalisation of maternity and perinatal centres, is designed to enable a range of specialist staff to be employed and available, and offers sufficient experience in identification and treatment of more rare conditions or complications. However, O'Doherty and Regan (2006) argue that the policy reduces the availability of alternative models of care and the proximity of services to women as some women are required to travel up to 80 kms to the nearest maternity unit (Sheeran, 2007). The organisation and models of care are not uniform or standard among these hospitals. In addition to the 2 midwifery-led units, 4 out of the 19 hospitals offer community based services, for example, Domino and Community Midwives schemes. These schemes afford a woman who is classified as having a 'low risk' pregnancy the opportunity to access care in the community or in her own home. Depending on the model of care on offer the woman may also give birth at home. Some hospitals provide an alternative model called the 'early transfer home' service/scheme where mothers and babies are discharged from the hospital 6 hours after the birth and a team of midwives provide midwifery care for the subsequent 5 days in the woman's own home. To be eligible for this scheme the mother and baby must have had an uncomplicated birth and immediate postnatal period.
Driving independently may not be an option for some women with a physical (or sensory) impairment so they are reliant on public transport, taxis or other individuals when travelling to and from health care facilities (Anderson and Kitchin, 2000; Lawthers et al, 2003; Prilleltensky, 2003; Scheer et al, 2003). Depending on the woman's geographic location and the availability of suitably adapted public transport, access to health care facilities and participation in other community activities may be severely curtailed. In the United States, it is estimated that 1 in 4 women with disabilities have no access to appropriate transportation (Nosek, 1992; Goodman, 1994). Inadequate transport to and from the health care facilities can pose significant challenges for women trying to get to appointments and to access reproductive care. Even when public transport is available Smeltzer et al (2007) report how, in the United States, it is expensive, undependable and inadequately equipped to accommodate or secure women with a wheelchair (Smeltzer et al, 2007). Long waiting times for suitably adapted transport to arrive is the norm and can be problematic when appointment times are inflexible. The service is generally infrequent and the distance of health care facilities from designated bus stops may be such that women still need to negotiate many other challenges in the environment before reaching the health care facility.
For women who use private transport but are unable to drive themselves, a partner, family member, friend, or personal assistant is needed to ensure appointments are kept. Here extensive advance planning is required and often appointments need to be scheduled around the driver's availability. However, accommodation of these requirements and flexibility in the scheduling of appointments is not a consideration experienced by women. Appointments are generally arranged around physician's and/or consultant's schedules and it can be difficult to obtain an appointment outside the scheduled hours (Clark, 2002). Waiting times for appointments are generally reported as too long (O'Doherty, 2006) and women's complex needs, which warrant assistance and extra time (Schopp et al, 2002; Women's Health Council (WHC), 2004) are rarely considered or accommodated when interacting and interfacing with health professionals (WHC, 2004).
The design of the built environment can be another critical determinant of accessibility and impacts significantly on the social inclusion and participation of women. For some women physical accessibility to the building is often the first and most obvious challenge encountered (House of Commons Health Committee, 2003; Thierry, 2006) and can be one of the most challenging aspects to obtaining care (Schopp et al, 2002). Access to the built environment is legislated for in the Disability Act (Government of Ireland, 2005) and Part M of the Building Regulations (Department of Environment and Local Government, 1997, 2000). The Disability Act (Government of Ireland, 2005) and the Equal Status Act (Government of Ireland, 2000) require that all service providers 'where practicable and appropriate' (Disability Act (Government of Ireland, 2005:pg. 27)), make reasonable accommodation for all people with disabilities. Women with disabilities require information about accessible services and resources but information on the number and location of accessible health care facilities and physician's practices is not readily available (Clark, 2002; Pierce, 2003).
Evidence suggests that a substantial proportion of health care facilities and physician's offices are inaccessible to women with a physical or sensory disability (Campion, 1997; Welner, 1997; Grabois et al, 1999; DeJong et al, 2002; Smeltzer et al, 2007). It is estimated that 2 out of 5 women with disabilities experience difficulty getting into and around the built environment of physicians' offices (Goodman, 1994) while a fifth of women in both the United Kingdom and the United States report that due to architectural barriers, health care facilities are unable to accommodate them during childbirth (Goodman, 1994; Nosek, 1996). Other obstacles that render health care facilities, physician's offices and clinics inaccessible include the physical location of facilities, offices and clinics, non availability of designated parking bays and the topography of pavements and curbs (Thomas and Curtis, 1997). For some women the stress and physical energy generated from trying to gain access is so intense that some would 'delay appointment making' (Scheer et al, 2003:pg. 227) rather than try to negotiate access to an inaccessible environment (Goodman, 1994; Nosek et al, 1995; Scheer et al, 2003). This is compounded even further as health professionals are often unaware of the problems that inaccessible offices and clinics present (Smeltzer et al, 2007). Physical challenges which impede access convey the impression to women that they are unwanted, unwelcome and are a burden on health care providers (Kaplan, 2006).
Internally waiting areas and rooms pose physical challenges with inaccessible bathroom facilities, inadequate space and narrow corridors posing difficulties for women with disabilities especially when trying to manoeuvre in a wheelchair. Reception desks are at an inappropriate height or level to facilitate eye to eye contact (McKay-Moffat, 2007) and the exchange of personal and sensitive information with receptionists, who are often perceived as gatekeepers to the services. Space restriction limits any freedom of movement and limits the women's possibility to move around the built environment, which essentially restricts them to one particular area.
Some health care units in Ireland have been described as substandard, with significant infrastructural deficits (Institute of Obstetricians and Gynaecologists Subgroup, 2006). In some units the infrastructure and the configuration of the buildings are so constrained that it impedes the delivery of optimal services. Inadequate facilities and insufficient consultant, midwifery and nursing staff levels (Institute of Obstetricians and Gynaecologists Subgroup, 2006) cause clinical risk management issues and the capacity constraints have led to overcrowded, unsafe environments, which impact on the access and the quality of service delivery for all women (Health Service Executive, 2005). Health services are only rendered accessible by the informal actions of relatives and friends who compensate for the 'deficiencies, inefficiencies and injustices' (D'Eath et al, 2005:pg. 4) of the services. Service inadequacies may thus be masked where friends or relatives compensate for gaps. Access to basic facilities e.g. toilet and bathing facilities can be problematic (McFarlene, 2004) and some women, in consequence, are upset and feel marginalised by the failure to meet these basic needs.
Women with disabilities frequently encounter fragmented and uncoordinated services (Commission on the Status of People with Disabilities, 1996; Department of Health, 1996; Baker et al, 1997; Thomas and Curtis, 1997). Services that are fragmented and uncoordinated are insensitive to individual needs and service provision is often compromised (Thomas and Curtis, 1997; D'Eath et al, 2005). Health professionals in maternity services may work in isolation from other professions or staff involved in the care of the women with a disability; there is little collaboration with other professionals to assist them to become knowledgeable about the disability, and a referral to allied health professionals, for example, physiotherapists or occupational therapists, is an uncommon occurrence (Lipson and Rogers, 2000; McGuinness, 2006). Consequently, health professionals do not offer effective, individualised and culturally sensitive care or proactive help and guidance (Tingle and Dunmore, 2005).
It is also difficult for women with disabilities to use equipment that is fixed and not readily adjustable, for example, examination tables and impractical baby cots, and many women rely on health professionals to help negotiate such inaccessible equipment (Thomas and Curtis, 1997). However, these women frequently experience a lack of will, manpower and suitable equipment to help transfer them safely in order that examinations can occur or in order that they can interact with their baby. A recent study of 152 trusts[3] providing obstetric or midwifery-led maternity services in England found that 83% of trusts reported having height-adjustable couches available at some antenatal clinics and 90% said they would provide home visits for disabled women. However, only 22% of delivery units had flexible-height cots (Commission for Healthcare Audit and Inspection, 2008).
Inappropriate training of health professionals in correct manual handling techniques exacerbates the issue of safe transfer even more and exposes women to impractical and unsafe techniques (Grabois, 2001). Diagnostic equipment can also be a source of discomfort and its use can be a daunting and traumatic experience for some women, especially those with a physical disability, and their experience may deter these women from seeking further care (Goodman, 1994; Welner, 1999).
An inaccessible environment coupled with a lack of accessible baby equipment and inflexible hospital guidelines, procedure, policies or protocols impact on women's ability to care for their babies in a confident and independent manner. McFarlene found that health professionals are often unable or fail to suggest creative and practical solutions to overcome the challenges encountered with an inaccessible environment and equipment (McFarlene, 2004). They fail to provide alternative equipment solutions, or to refer the women to appropriate services from where adapted/modified equipment may be purchased (Lipson and Rogers, 2000).
Access to high quality personal care attendants could facilitate independence in women with disabilities (Lawthers et al, 2003); however, some women in the United States experience difficulty in finding suitably trained and experienced personal care attendants. Limited numbers of competent attendants impact on the women's autonomy and ability to be independent and render the individual dependent on formal and informal support structures such as partner, their children and extended family (D'Eath et al, 2005).
Possessing information engenders a sense of autonomy and control and is a central tenet of the decision making process; Clark (2002:pg 10) suggests that it is in fact 'the fourth right of citizenship'. Insufficient access to information excludes women from the process of informed decision making and impacts significantly on their choice. Moreover, it impinges on the doctrine of informed consent where women must understand all risks and benefits associated with procedures and care (Grabois, 2001; D'Eath et al, 2005). Not having adequate explanation especially about invasive, intimate procedures renders women more vulnerable and when the procedures are conducted they may feel undignified, humiliated and degraded.
The information needs of women with disabilities are varied and dependent on the type of disability or impairment experienced (McKay-Moffat, 2007). Women with disabilities, however, do experience difficulties in receiving quality health information (Nosek, 1992; Harris and Bamford, 2001; Commission for Healthcare Audit and Inspection, 2008) and Campion (1997) and the Royal College of Nursing (RCN) (2002) found serious deficits in the provision of information in relation to pregnancy, childbirth and disability in the U.K.. When provided, the information tends to be irrelevant, inadequate, unhelpful (Goodman, 1994; Commission for Healthcare Audit and Inspection, 2008) and contradictory (Thomas and Curtis, 1997). Women are forced to obtain information from other sources, e.g. support groups/networks and voluntary agencies while many parenting skills are developed through experiential learning (Thomas and Curtis, 1997).
The learning needs of expectant women with physical disabilities vary considerably more than for women without disabilities and contemporary models of antenatal education have been described as inappropriate (Conine et al, 1986; Blackford et al, 2000). The evidence suggests that the needs of women with disabilities are not being met when attending antenatal classes (Conine et al, 1986; Blackford et al, 2000; Commission for Healthcare Audit and Inspection, 2008). Some women reported that class facilitators do not advocate for women with disabilities (Blackford et al, 2000) and described them as cold and uncaring (Westbrook and Chinnery, 1995). Westbrook and Chinnery (1995) found that many facilitators lack knowledge in relation to disability and pregnancy and fail to consider the special needs of women with physical disabilities. Some facilitators consider that the provision of antenatal education classes for women with disabilities is not part of their role and function (Conine et al, 1986) and have indicated how the provision of adaptive programmes for women with disabilities is time-consuming and disruptive to normal progress (Conine et al, 1986). In a recent survey of the 152 trusts providing maternity services in England, pre-pregnancy advice clinics were available for women with a physical disability in only 19% (Commission for Healthcare Audit and Inspection, 2008).
Conine et al (1986) found that many of the environments where antenatal classes are held are inaccessible; doors, walkways and bathroom facilities are generally inappropriate and directional guides indicating the location of appropriate facilities are non-existent. There is a lack of sufficient information in appropriate formats which could help to facilitate a state of independence (Blackford et al, 2000) and facilitators do not discuss adaptive techniques that could help women with disabilities in their parenting skills. Lipson and Rogers (2000) and McKeever (2003) found that facilitators did not routinely provide alternative equipment or refer the women to appropriate services from where adapted/modified equipment may be purchased.
Teaching and learning resources used by class facilitators are more suited to women without a disability and are inappropriate for women with a physical (or sensory) impairment. The stigma of having a disability impacts on women's sense of self and self-confidence. Consequently women may lack the confidence to discuss their particular concerns and issues with class facilitators. This often results in many women not accessing and availing of antenatal education classes or, when they do, women are unwilling to voice concerns or simply ask a question because the educator and other women with no disability in the class cannot relate to or associate with their anxieties or fears. Women therefore feel excluded from the class (Westbrook and Chinnery, 1995).
Some health professionals communicate with women with disabilities in a patronising (D'Eath et al, 2005) or authoritarian (Westbrook and Chinnery, 1995) manner. Campion (1997) reports that the language used by many health professionals reflects their prejudicial attitudes and ignorance and may leave women feeling fearful, uncomfortable and degraded. Even the physical positioning of health professionals in clinic areas reduces good communication, for instance, due to lack of eye to eye contact between a wheelchair user and those standing near them (McKay-Moffat, 2007).
Inappropriate attitudes, behaviours and a lack of awareness (Nosek, 1992; House of Commons Health Committee, 2003; RCN, 2007) are the most significant subtle challenges encountered by women with disabilities when accessing health care during pregnancy, childbirth and early motherhood and are the most difficult to address and overcome (Schopp et al, 2002). Women with a disability will have very diverse backgrounds and different experiences and the disability will impact differently on the lives of each individual. When health professionals are unable to recognise and embrace this diversity it has a profound impact on the development of attitudes and whether or not women access the health care services (Kallianes and Rubenfeld, 1997; Shakespeare, 2000).
The many myths and misconceptions surrounding women with disabilities have resulted in the construction of negative prejudicial attitudes towards them, and hostility, sympathy and pity are common associated emotions (DeLoach, 1994). These emotions and prejudicial attitudes heighten women's sense of vulnerability, insecurity, isolation and marginalisation and increase the pressure experienced by women as they embark on, and attempt to negotiate, the many challenges of pregnancy (McGuinness, 2006). One prominent myth is that women with disabilities are asexual (NWCI, 2006), uninterested in sex or are unable to part take in sexual activity. This assumption is 'pejorative' (Kaplan, 2006:pg. 450) and may result in health care providers denying access to appropriate services and care. The assumption is also untrue, as women with physical disabilities are sexual beings who engage in sexual activity. They, too, experience feelings of desire and love, seek sexual gratification and desire motherhood (Anderson and Kitchin, 2000). Vansteenwegen et al (2003), however, note how some women with a physical disability tend to reject their sexuality, around which there is a great deal of negativity, prejudice and misunderstanding (Nisha, 2005).
Lee and Oh (2005) highlighted a range of barriers experienced by married women with a physical disability with regard to obtaining sexual and reproductive health care information. Barriers included lack of knowledge among health care professionals and the absence of medical facilities for people with disabilities. Many women in this study (n=410) reported not using safe sex devices and 25% had insufficient information regarding sexuality and reproductive health.
Becoming a mother is an aspiration of many women with a physical disability, which, according to Mc Keever et al (2003) represents the 'capturing of a gender or recapturing of a lost gender' (Mc Keever et al, 2003:pg. 671) and provides women with a sense of normality. It is an avenue to societal acceptance, as becoming a parent shifts the focus from the disability to parenting and provides women with a platform that emphasises their independence and competency (Grue and Tafjord-Laerum, 2002). Pregnancy and parenthood is thus perceived as a triumph over their disability (Goodman, 1994). However, many women with physical disabilities planning to become pregnant are exposed to prejudicial attitudes of others and experience tremendous pressure not to do so (Baker et al, 1997; House of Commons Health Committee, 2003; Prilleltensky, 2003; McFarlene, 2004; Thierry, 2006). These attitudes are quite often founded upon, and impregnated with, a eugenic philosophy and ethos and are described as dehumanising (Grabois, 2001). Consequently, women may forgo pregnancy and parenting because they fear that their disability will be inherited by their child or that the child may be psychologically deprived or burdened by the fact that one or both parents have a disability (Carty, 1998). Health professionals sometimes label women with disabilities as having an unwanted, unplanned pregnancy and desiring a termination, which exemplifies their assumption that women with disabilities are incapable of becoming a parent (Welner, 1997; Carty, 1998; Prilleltensky, 2003).
Women with physical disabilities have described health professionals as aloof, authoritarian and domineering (Westbrook and Chinnery, 1995) or patronising, hostile and unable or unwilling to accommodate diversity (D'Eath et al, 2005). The hypervisibility of the woman's disability may result in the woman being shunned or ignored (Zitzelsberger, 2005), although this may be due, in part, to health professionals' nervousness at the different challenges that women with disabilities (Goodman, 1994) present.
Having a physical disability and needing help are in contrast to the normal representation of mothering (McKeever et al, 2003) and health professionals may find it difficult to comprehend these women's ability to mother, nurture and care for their baby (McFarlene, 2004). Women with physical disabilities describe how they perceive themselves to be constantly judged and scrutinised by health professionals and are fearful that they would be considered a failure (Prilleltensky, 2003; McFarlene, 2004). Many are afraid to ask for assistance as they fear that such a request would be interpreted as them being incapable and unable to cope with the functions of their new role (Thomas and Curtis, 1997; McKeever et al, 2003; McFarlene, 2004). Health professionals often interfere and provide unhelpful advice and care which only reinforces the woman's sense of difference and signals their inadequacy (Thomas, 1997). Frequently, alternative solutions offered or proposed by women that could help them master the skills associated with practical baby cares are considered inappropriate by health professionals (Thomas, 1997) and they fail to appreciate women's expertise in mastering and adapting to their disability.
Such prejudicial attitudes combined with insensitive and derogatory comments only serve to diminish a woman's self-esteem and self-efficacy and cause her to doubt her own ability to be an effective mother (Welner, 1997). This erodes women's sense of autonomy and empowerment and they become passive and compliant in their interaction with health professionals (Prilleltensky, 2003), describing how they feel depersonalised and a burden on the health services (Smeltzer et al, 2007).
The literature demonstrated clearly the strong emotions such as anger and bitterness, expressed by women with physical disabilities, which emanates from their feelings of isolation and exclusion (Tilley, 1998). These feelings arise in response to the assumption that their traditional roles as nurturers, mothers, wives, homemakers, and lovers are not considered appropriate for them; instead society perceives stereotypes and portrays them as dependent and asexual individuals (Tilley, 1998). Moreover, many women may feel disabled, demoralised and 'at the mercy of a fragmented, medicalised system' (WHC, 2004:pg. 13), which erodes their sense of individualism. In a recent study of 152 trusts providing obstetric or midwifery-led maternity services in England, where over 26,000 women responded to a questionnaire survey, women who described themselves as having a disability responded more negatively to questions on the quality of care at all stages of pregnancy, birth and the postnatal period. They were also less positive in their responses regarding being treated with respect and dignity, and on those concerning the receipt of enough information (Commission for Healthcare Audit and Inspection, 2008).
The negative attitudes from health care professionals described above may stem from the health professional's lack of awareness, knowledge and expertise in relation to the disability (House of Commons Health Committee, 2003). Few health professionals seem knowledgeable about the care required by women with disabilities and many are unfamiliar with disability related complications that may develop (Westbrook and Chinnery, 1995; Lipson and Rogers, 2000; McGuinness, 2006; Thierry, 2006; Smeltzer et al, 2007). They may lack awareness of, and therefore be insensitive to, the individual needs of women. Quite often it is the woman who educates the health professional about her disability. This lack of knowledge and awareness leaves many health professionals anxious, uncomfortable and nervous about caring for a woman with a physical disability during pregnancy, childbirth and early motherhood (Baker et al, 1997), which may encourage them to refer women to another physician. This action impacts on the concept of continuity of care (Grabois et al, 1999; House of Commons Health Committee, 2003), a concept that could help alleviate the many attitudinal challenges experienced by women.
Furthermore, the evidence suggests that women with physical disabilities find it extremely difficult to locate a physician with the knowledge to manage the disability and the pregnancy (Nosek et al, 2001; Veltman et al, 2001; House of Commons Health Committee, 2003). Many physicians perceive the pregnancy to be high risk, unusual and problematic (Thomas, 2001). For some women, disability does increase the risk of developing secondary complications; however, labelling the pregnancy as high risk results in increased frequency of antenatal visits, consequently women are 'compartmentalised and labelled as deviant from the norm' (Prilleltensky, 2003:pg. 29). Evidence also suggest that some physicians employ discriminatory actions (Grabois et al, 1999) by developing an eligibility criterion that excludes women with a disability or by failing to modify policies, practices or procedures that would ensure the inclusion of women with disability and facilitate access to their services.
Health professionals rarely consider pregnancy and disability together. Women are often defined in terms of their disability and their disability overshadows their pregnancy and new role as a mother (Lipson and Rogers, 2000; Clark, 2002; Prilleltensky, 2003). This may not be the experience of all women, for some the opposite may occur; health professionals may fail to acknowledge the physical disability and may not discuss the possible additional and unique needs the women may have (McKay-Moffat and Cunningham, 2006). An unfamiliarity with the woman's disability impacts on the provision of appropriate care (Fiduccia, 2000). Welner (1999) found that the casual attitude of some health professionals towards complications that may occur can instil a lack of confidence and facilitate a state of discomfort between health professionals and the woman. Many health professionals make a conscious effort to avoid discussing the reproductive concerns and issues of women with disabilities because they are overwhelmed by their workload and unable to manage additional problems (Welner, 1999).
As described above, women with disabilities who need to access health and maternity services must negotiate between their own self-identity as a healthy woman and the medical perception of disability. Women with physical disabilities have identified how decisions in relation to mode of delivery usually occur without consultation with them or assessment and consideration of their ability to deliver vaginally, despite their wish to do so (Lipson and Rogers, 2000; Smeltzer, 2007). Instrumental or operative birth is commonly advocated by health professionals (Lipson and Rogers, 2000; McFarlene, 2004). Physicians unfamiliar with caring for women with physical disabilities base their decisions on rigid protocols devised primarily for the larger population of women without disabilities, so the woman's birth choices may not be respected (Lipson and Rogers, 2000).
Bias and insensitive care also extends to the postnatal period. Health professionals lack knowledge about the necessity to refer women to allied health professionals, support services and networks. Women describe a lack of specialised and adapted instruction, for example, no referral to adaptive aids or techniques that might assist with breast-feeding and instruction on parenting skills not being specific or tailored for women with physical disabilities (Lipson and Rogers, 2000). Some health professionals focus predominantly on the physical disability and fail to consider the woman as competent (Thomas, 2001; McGuinness, 2006) and capable of becoming a parent.
Data from the first ever national survey exploring public attitudes to disability, commissioned in 2001 by the National Disability Authority presents an interesting picture of how disability is perceived and accepted in the Irish context. The study revealed how an individual's personal experience of disability impacts significantly on the establishment of their attitude toward people with disabilities (NDA, 2002). Five years later the survey was repeated and the relationship between attitudes and personal experience was identified once again. Evidence from this second survey suggests that people's attitudes towards disability are improving (NDA, 2007) but society still has a long way to go before inequalities and the social exclusion of people with disabilities are to be adequately addressed. Responding to a question on whether people with disabilities should or should not have children, the majority of respondents (84%) drawn from the general population agreed that people with physical disabilities have the right to become parents, while a similar number (87%) of respondents agreed that people with sensory impairments should have children if they chose to (NDA, 2007).
The introduction of legislation, policy and many other initiatives may all have contributed to the change of attitude evident in the second survey. The initiatives include the implementation of the National Disability Authority Act (Government of Ireland, 1999), the Equal Status Act (Government of Ireland, 2000); the European Year for People with Disabilities (Council of Europe, 2003); the Special Education Needs Act (Government of Ireland, 2004), Disability Act (Government of Ireland, 2005) and more recently, the National Disability Strategy (Department of Justice, Equality and Law Reform, 2004). Although it is important to acknowledge the change in attitudes between the 2 surveys, periodic monitoring of attitudes over time is useful in order to differentiate the transient fluctuations in attitudes from ongoing positive trends that may occur at the time any survey is completed.
The environmental challenges that exist for people with disabilities are solvable (Moore, 1997; Veltman et al, 2001) and all health care facilities should be made physically and socially accessible. The following suggestions may alleviate the many challenges encountered by women with disabilities in accessing the services. Policies and guidelines that promote access for women with disabilities should be devised, implemented and audited on a regular basis, involving women with disabilities in the development phase and auditing phases (Nzegwu, 2004). Consideration should be given to creating a specialist role to cater for the needs of women with disabilities, for example, a disability advisor (Brown, 2001). A robust complaints mechanism should be established to enable feedback from women to be heard and acted upon (Nzegwu, 2004).
Women should receive health care as near to their home as possible (Institute of Obstetricians and Gynaecologists Subgroup, 2006). Community based models of midwifery care, for example, Domino schemes, should be developed in all maternity units (Institute of Obstetricians and Gynaecologists Subgroup, 2006), which will enhance continuity of care and choice for women (Women With Disabilities Australia (WWDA), 2004; HSE, 2005) and facilitate women with disabilities, in particular, to choose their preferred model of care. All women should be provided with information about these services (WHC, 2004). Service providers should be more creative and flexible in the provision of care (Crow, 2003; RCN, 2007), to accommodate women with disabilities in a location near to their homes.
Reliable and accessible public transport to and from the provider's facilities is essential (Scheer et al, 2003). Failing that, women with disabilities should be provided with subsidised private transport as required.
Structural and architectural barriers that prevent women with disabilities from accessing health care facilities and services should be identified and remedied. Modification of the built environment should occur and should be guided by the building legislation that addresses the issue of accessibility (Department of Environment and Local Government, 1997, 2000; NDA, 2002a). Remedial measures include the provision of a disabled parking bay close to the entrance and clearly signposted, change of the physical environment to ensure freedom of access, ramps externally and internally, wider exterior and interior doors, and wider corridors with access to all areas. All amenities should be within reach and the receptionist desk should be at appropriate level to facilitate exchange of information in a private and respectful manner (Jones and Tamari, 1997; Schopp et al, 2002; McKay-Moffat, 2007). A simple wheelchair tilting manoeuvre may avoid the need to transfer woman to tables for antenatal examination (Bar-Hava et al, 1999). Accessible bathroom facilities that facilitate ease of movement for people with mobility disabilities, with an emergency cord that extends to the floor should be situated on each unit and clearly signposted (McKay-Moffat, 2007). A designated unit/ward specifically adapted for women with disabilities may alleviate any issues in relation to accessibility when a woman with disability needs is admitted to the health care environment. Other modifications that will help to ensure access to health care include the procurement of suitable equipment and technical aids, for example, hoists, height adjustable hydraulic examination tables, and accessible baby cots.
Enhancing maternity care for disadvantaged groups, including women with disabilities, requires better planning and coordination of services utilising a multidisciplinary approach (Clancy and Andresen, 2002; D'Souza and Garcia, 2004; Kelsall, 1992; Carty et al, 1993; Goodman, 1994; Thomas and Curtis, 1997; Lipson and Rogers, 2000; Clark, 2002; Comhairle na nOspidéal, 2003; WWDA, 2004; D'Eath et al, 2005; Institute of Obstetricians and Gynaecologists Subgroup, 2006; McKay-Moffat and Cunningham, 2006). Establishing links and a mechanism of referral to the various support services will facilitate the sharing of knowledge amongst disciplines (Campion, 1997; Thomas and Curtis, 1997), thus enhancing standards of care and women's experiences, which should result in a higher level of satisfaction (McKay-Moffat and Cunningham, 2006).
A key Irish study commissioned by the National Disability Authority in 2005 captured the experience of people with disabilities, including persons with intellectual, physical and sensory disabilities, of the health services (D'Eath et al, 2005). Unlike respondents in other work (Piotrowski and Snell, 2007), women who participated in this study reported some positive experiences with the health services. The value of acceptance and reciprocity was demonstrated in the participants' experience of General Practitioners, with some exemplifying partnership approaches and inclusive practices (D'Eath et al, 2005).
Women with physical disabilities should have access to all information (Thomas, 1998) and education about their condition (Mitton et al, 2007) in an appropriate language and format that is easily understandable. Health professionals must recognise that they are a conduit for information (Thomas, 1998; Harkin, 2001). Canadian research has indicated that culturally sensitive antenatal education classes should be provided specifically for women with physical disabilities (Conine et al, 1986; Carty et al, 1993). Pendergrass et al (2001) recommends that health service providers should use the internet to provide information and, in particular, to establish health information sites for women with disabilities.
Disability awareness and training should be an integral part of all health professionals' education and induction to services, supplemented with regular seminars (Carty et al, 1993; Goodman, 1994; Baker et al, 1997; Campion, 1997; Royal College of Midwives (RCM), 2000; Veltman et al, 2001; Schopp et al, 2002; Ubido et al, 2002; Scheer et al, 2003; Nzegwu, 2004; Underwood, 2004; Valios, 2004; WHC, 2004; WWDA, 2004; D'Eath et al, 2005; Harris, 2006; McGuinness, 2006; RCN, 2007; Smeltzer et al, 2007). In particular, health professionals could learn from women with disabilities (Smeltzer, 2007). Health professionals should embrace diversity (Crow, 2003) and recognise the importance of seeing beyond the disability (McGuinness, 2006).
All health professionals should receive periodic training on the correct and safe handling and transfer of women with a physical disability (Baker et al, 1997; Grabois et al, 1999). Such training should encourage and facilitate professionals to use women's own adaptive equipment (Carty et al, 1993). Instigating early referral systems to allied professionals, such as occupational therapists or physiotherapists (Carty et al, 1993; Thomas and Curtis, 1997; Thomas, 1998; Lipson and Rogers, 2000; WWDA, 2004; RCN, 2007), will facilitate an assessment of need. Health professionals should also enhance their knowledge of the services and supports available to women with disabilities (RCN, 2007), in order to be able to inform women as required. In order to develop their knowledge, health professionals should listen to, and learn from, women with disabilities, recognising that they are the experts in terms of their disability (Baker et al, 1997; Campion, 1997; Crow, 2003; D'Eath et al, 2005; RCN, 2007).
This chapter commenced with a definition of the term 'access to services', which has been described as having 5 components: availability, accessibility, accommodation, affordability and acceptability. Barriers reducing the accessibility of services were found to relate to the location and models of care, difficulties in transport, and moving around the physical environment. These were perhaps the most obvious barriers encountered, and led to difficulties for the women concerned. Barriers to the accommodation of women with physical disabilities centred mainly on the lack of provision of suitable health information and less so around difficulties with communication, which tended to be caused by physical mal-positioning of reception desks and staff. Barriers to the acceptability of services to women were encountered in terms of lack of knowledge and negative attitudes and behaviours from staff, which upset many women.
The facilitators to access were more difficult to ascertain from the published literature. Most factors described related to improving access to buildings and services, with some emphasis on developing ease of movement around the physical environment. Facilitators to accommodation of women with physical disabilities focussed on the provision of sensitive antenatal education classes. Facilitating acceptability of services for these women would require considerable work on developing health professionals' knowledge of, and attitudes towards, physical disability.
[3] Health service provision in England occurs within designated Trusts that divide the country into a number of areas.