The past two decades have witnessed a dramatic change in maternity care. Despite these changes however, disabled women are still being marginalised in that their specific and individual needs are not being met in our traditional healthcare settings. From my experience as a specialist midwife in disability, more disabled women are seen in our healthcare settings in the UK. Despite this, statistical data for this client group are not readily available as birth register records do not routinely include details of maternal disabilities. The women are seen as vulnerable adults, as a minority within a minority and therefore experience of need is limited. Furthermore, society in general assumes that disabled women neither want nor are able to have children, and if they do have children are unable to care for their well-being. In this latter situation many care professionals concentrate on the needs of the child at the expense of nurturing parenting skills.
It is estimated that there are in the region of 1.2–4 million disabled parents in the UK but exact numbers are unknown because of difficulties with calculations (Disabled Parents Network 2006). People with physical and sensory impairments appear to be the most prevalent. Of this number there are many who face barriers both in their maternity care and their parenting role. Expectations are not met, and overall experiences have not always been positive. This is often the same for their carers; midwives in particular find themselves unprepared, lacking in disability awareness and knowledge of disability issues.
This chapter focuses on the needs of women with physical or sensory impairments. Within these criteria, no boundaries are set for age or type of impairment, however women with mental health needs will not be considered as they are not within the remit of this book. Using experiences from my personal and professional life and information from contacts, I have included three composite case scenarios at the end of the chapter to illustrate service provision. None of these ‘cases’ actually refers to an individual case therefore there are no issues of breach of confidentiality. One of these ‘cases’ describes a couple with learning disability; the specific needs of women with learning disabilities are discussed in Chapter 5.
The aim of this chapter is to explore the maternity needs of disabled women with physical and sensory impairments as perceived by disabled women themselves. It will also address the specific maternity care priorities and needs of this client group. Women’s own experience of pregnancy and parenting will help identify gaps in service provision and make services better targeted to need. It will enable health carers to focus on the needs of disabled women to ensure a maternity service that is woman centred and evidence based.
Specific chapter objectives listed below will help service providers to:
▪ overcome prejudice and barriers by offering equal choices with services;
▪ help women to make an informed choice about their care;
▪ identify issues and areas of concern for the women and themselves;
▪ inform and empower disabled women by giving accessible and accurate information;
▪ consider the need to provide appropriate equipment.
BACKGROUND AND LITERATURE REVIEW
A systematic, computer-assisted search of the literature showed that there is little research into the maternity needs of disabled women. Some qualitative evidence exists and reports of case studies, but much of the literature is primarily anecdotal in nature. My experience in this area has also identified a lack of relevant literature available for disabled women and their health carers. There is some evidence in the area of learning disabilities, but here the literature tends to focus mainly on the needs of the child and not always the needs of the parent. Furthermore, other writers confirm that there are relatively few published studies on the maternity and parenting experience of disabled women (for example Thomas & Curtis 1997). Campion (1990) and later Shackle (1994) both reported disabled women’s experiences of negative attitudes in relation to their sexuality and parenthood. The latter information was the report of results from a conference organised by the Maternity Alliance giving details of disabled women’s experiences of the maternity services. Findings from this conference generated the UK midwives’ professional body: the Royal College of Midwives (RCM) to publish a position paper (1996) to give midwives guidelines for their practice which was updated in 2000.
Despite these guidelines however, Shackleton & Goddard (1997) claimed that disabled women who choose to become parents still experience discrimination, disempowerment and insensitivity from health professionals. They discussed the need to explore emerging themes identified by disabled women themselves in order to make recommendations for change. However, it must be acknowledged that the experiences reported by the women may have occurred long before the first RCM position paper was published. Furthermore, some women are reluctant to focus on the impairment alone preferring to adopt the social model of disability.
Personal contact with disability specialists and support groups also confirms that research in this area is needed. In view of this therefore, there is clearly a necessity to determine the needs of this minority group to meet individual requirements. Without this, obstetricians, midwives and other health carers will be faced with providing care and support often in situations where they may have little or no experience (Carty 1998) and with little evidence to guide practice. Indeed, as disability and maternity are two words rarely seen together in the same sentence according to Campion (1997), it is not surprising that many health carers are unsure how best to provide maternity care to this minority group.
Culley & Genders (1999) confirm this need for more information as highlighted in a research project designed to examine the role of learning disability nurses in supporting people with learning disabilities who become parents. They argue that training is essential to providing a person-centred service where disabled people are valued and respected and where attitudes are positive and appropriate.
Disabled women have been identified as a group that the present maternity services are failing. The RCM (2000) believe that midwives have a key role to play in meeting the needs of disabled women and supports the woman-centred principles set out in the UK government’s document Changing Childbirth (DoH 1993) that physical access and the attitudes of professionals do not prevent access to services.
Inadequate services are no longer acceptable and some legislative progress has been made to help rectify the issues. The most significant legislation of the decade in the UK is the Human Rights Act 1998 which came into force in October 2000 (Dimond 2000). It is extremely likely that this Act has ensured that more concern is directed to the rights of the individual. Similarly the UK Disability Discrimination Act (DDA) (1995) draws attention to the duty of care for service providers in the respective parameters of access, communication and disability awareness training, embracing these concepts to improve the quality of healthcare provided. The DDA states that it is unlawful to provide a lower standard of service to disabled people and focuses on three areas of concern:
▪ Physical barriers.
▪ Care by professionals. Attitude and behaviour of others.
Maternity services can place barriers for disabled women which Dimond, 2003 and Dimond, 2004 points out is illegal as it is discriminating against them. Left unaddressed these barriers often give rise to prejudice and ignorance of individual needs. Problems may arise if these needs are not met. The DDA states that reasonable adjustments are to be made to ensure that services are not impossible or unreasonably difficult for disabled people to access and use. Part 3, Section 21 identifies three key areas for action:
▪ Disability awareness training—the most significant barrier cited by disabled people was that of inappropriate staff attitudes and behaviour.
▪ Communication and information, to include policy and procedures.
▪ Access/removing barriers.
The legislation in the form of the DDA, and more recently the new maternity services standard published as part of the National Service Framework for Children Young People and Maternity Services (NSF) (DoH 2004) sets out the principles of care that midwives should offer to all women and that of course includes those with a disability. The latter document continues to revolve around promoting women centred care and advocates informed choices as did Changing Childbirth (DoH 1993). Access to up-to-date and relevant information, in particular preconception advice, care and support; working in partnership; appropriate care pathways; and alliances and networks, are all highlighted.
Standard 11 of the NSF addresses the requirements for women during pregnancy and maintaining contact before and after the birth process. Maternity services are to be proactive in engaging all women early in their pregnancy, particularly women from disadvantaged groups and communities. The principles of the government which initiated the Sure Start system, whereby midwives and other health professionals work with disadvantaged groups of pregnant women and new mothers and babies, should be extended across other services i.e. working with parents and children. This should be started early, be responsive to women’s needs and be flexible at the point of delivery. There must be provision of services for everyone ensuring they are community driven and professionally coordinated across agencies, and outcome focused. Sure Start midwives engage with disadvantaged groups and midwifery-led centres are being developed in deprived areas to ensure care is locally based and accessible.
Maternity care providers and Primary Care Trusts should plan the provision of maternity services based on an up-to-date assessment of the needs of the local population e.g. identifying specific vulnerable groups. Involving service user groups to explore the reasons why women from these groups find it difficult to access and maintain contact with maternity services will improve the access to, and effectiveness of, maternity services for minority groups. This means that providers must ensure that local maternity services are inclusive for women with learning and physical disabilities taking into account their communication, equipment and support needs.
Services need to be innovative and flexible in meeting the needs of women with communication difficulties and other disabilities, and informed by best practice from settings and regions caring for disabled women across the country. To aid this it is suggested that a directory of local and national agencies is developed that can provide expert advice and support for professionals working with women from disadvantaged and minority groups and communities. There should be inter-agency arrangements, including protocols for information sharing. Additionally, to promote the health and well-being of the mother and her baby, it is highlighted that there is the need for a lead professional who will help to ensure that women from disadvantaged groups have adequate support from other agencies.
It is clear from the literature and my own experiences in practice, that the most common themes for disabled women are lack of relevant information, barriers to access to services, and negative attitudes from professional carers. Disabled women want to be treated like all other women but not at the expense of the disability being overreacted to or ignored. There is a tendency for the needs of disabled women to become more medicalised as professional carers often view pregnancy as problematic. As a consequence the experience of childbirth becomes one of ‘high risk’. This usual traditional view is not the case for every disabled woman. Being realistic however, one must be aware that problems may arise, but this is also the case for non-disabled women. Disabled women themselves live within their strengths while recognising their limitations: knowing what they need and what they do not. Carers should, therefore, respect their individuality, seeing them as women first, disabled second.
These issues cannot be viewed in isolation but need to be embraced within the context of the wider determinants of health and the link between economic, social and environmental conditions as these also have implications for health. Furthermore, providing maternity services for disabled women represents a challenge to many health professionals who often find themselves under resourced and not adequately prepared for the role.
The rationale for this chapter emerged not only from these factors but from my own personal experiences of disability, childbirth and parenting (I am a disabled parent myself) and my professional role as a specialist midwife/disability advisor working in a maternity care setting in one of the largest specialist centres for women in Europe. This specialist role has enabled me to offer care and support to disabled women with physical, sensory, learning and mental health issues.
Investigating the needs of disabled women helps to identify gaps in service provision to enable health providers to be better able to target the needs of this client group and to provide a maternity service which is woman centred and evidence based. It is the responsibility of all carers to prepare themselves to meet this challenge. With this in mind I conducted a small-scale qualitative study using semi-structured interviews with 12 disabled women with a physical or sensory impairment. This highlighted the perceived needs of this client group, giving further experiential evidence of requirements. These experiences highlight some of the negative attitudes that exist, and the gaps in service provision to meet individual needs. Making reasonable adjustments will enable health care services to offer maternity care that is woman centred, evidence based, meeting the needs of disabled women.
One of the components of the UK Disability Discrimination Act (1995) is ‘Disability Awareness’: the process of informing and empowering individuals in disability etiquette. The biggest barrier cited by disabled people is that of negative attitudes and behaviours.
The view of many disabled people is that professional carers are not disability aware. There is a lack of understanding by many GPs, obstetricians, midwives, and other carers as to their needs. Women are not asked directly, there is no mention of the impairment and the implications thereof, and there is an obvious lack of specialist knowledge. The duty of care is the responsibility of all carers in order to be informed, enabled and empowered to provide an inclusive philosophy of care.
Thomas and Curtis (1997) support the claims made in Changing Childbirth (DoH 1993) in that professional practice and other features of maternity services can place barriers for disabled women. Left unaddressed these barriers often give rise to prejudice and ignorance of individual needs. The current literature identifies three predominant barriers faced by disabled women: attitude and behaviour, access to services, and care by professionals. The experiences of disabled women highlighted by Shackle (1994) summarises the negative attitudes that exist, poor access to services and the lack of relevant literature available for disabled pregnant women and their health carers; as one disabled parent commented to me: ‘it should not be down to informal conversations with other parents and the luck of the draw with professionals as to whether relevant information is given’.
Following a recent opportunistic survey, Wates (2003) claimed that the level of support given is often dependant on the individual relationship between a disabled woman and her professional carer, and that certain professional groups are more supportive than others, although variations between groups do exist. In the report, ‘It shouldn’t be down to luck’, Wates (2003) describes what over 150 disabled parents said about access to information and support. Although midwives and maternity services were not specified directly, this study highlighted that even to the present day disabled women who choose to become parents are still experiencing discrimination, disempowerment and insensitivity from health professionals.
My professional experience of midwifery, parenting and disability reflects and confirms these findings in that negative attitudes abound, and the need is for more midwives and other carers to provide individualised care centred on each woman to make a difference. The level of services received by disabled women is often influenced by the underlying beliefs and attitudes of service providers. Attitudes towards disabled people are often negative. This is highlighted in the UK Disability Discrimination Act 1995 as the most influential and most common barrier to this client group.
This negativity is associated with the many myths around disabled pregnancy and parenting. For example, assumptions are made that women with a physical impairment do not want, or are unable to pursue the role of parenting. Similarly, it is often thought that disabled women cannot adequately care for and meet the needs of their child. Typically these views focus on issues of the individual coping and the associated ‘problems’. Therefore they concentrate on the impairment and pay little attention to the social perspective. There is also popular belief that people with learning difficulties have more children and that their children will be neglected because of inadequate parenting skills (Shackleton & Goddard 1997).
Although these issues may be real in some cases, this is not the norm for the majority and is not the perspective from which healthcare policies should begin. Positive attitudes can only be developed as people have regular contact with disabled women and mutual respect in their diversity. Change is therefore necessary in order to provide equity in maternity care provision for disabled women. It is the responsibility of all carers to explore their own attitudes, to investigate the needs of this minority group, and be willing to be prepared to meet the challenge.
Ask yourself, why is it that so many disabled women struggle in these areas, having to justify their reasons to become parents, to convince health carers that they are women first and want to fulfil the role of motherhood? Do you give disabled parents the credibility and respect they deserve? Many have planned and considered the implications of disabled parenting very carefully. It is often the belief that disabled people are irresponsible, that the pregnancy is a mistake or that they will be unable to cope with the needs and demands of parenting. This results in women having concerns about pressure to become good mothers due to professionals’ unhelpful support.
Disabled women need to be accepted and supported in their choice to become parents and to be cared for and informed like all other women. Evidence suggests that information aimed at parents and families tends to omit the issue of disability, whereas information for disabled people rarely covers parenting (Wates 2003).
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THE RESULTS OF THE STUDY: WOMEN’S EXPERIENCES (SEE APPENDIX FOR QUESTIONS)
Expectations and fears
Women’s expectations of their maternity experience often depended on the type of their impairment, and the support and information they received during their pregnancy. Many disabled women feel confident in this experience, others have many fears. When these fears are left unaddressed the maternity experience for both user and carer will not meet expectations.
Some of the most common fears for disabled parents are highlighted as follows:
▪ Concern about well-being throughout pregnancy and delivery.
▪ Vulnerability—may not have been a patient before. Nervous seeing doctors, fear of the unknown. Not able to care for baby, coping as a disabled mum.
▪ Implications of delivery: the need for caesarean section and choice of anaesthetic. Knowing about the procedure from the experience of others or maybe their own can be fearful causing upset. Being admitted the night before can be problematic for some, for others it can feel more reassuring and secure.
▪ Loss of independence, having to ask for help to shower, to mobilise, requiring use of specific equipment, bed, cot, Zimmer frame, help with child-care: handling, lifting, changing, feeding, bathing.
▪ Exacerbation of impairment following pregnancy and delivery—effects unknown.
▪ Depression due to fatigue and maybe doubting own parenting experience; some mothers can become depressed due to the change in emotions, the added responsibility, impairment itself or just being a new mother.
Information enhances knowledge: to have knowledge is to have control and autonomy. The information needs of disabled parents are variable according to the type of impairment but on the whole they are the same as that of non-disabled women in respect of pregnancy and birth. Disabled parents, however, may also need appropriate, relevant and up-to-date information specific to the impairment and in a format which is accessible. The Disability Discrimination Act 1995 highlights accessible information as one of its themes in providing equity in goods and services.
From the results of my study the following information requirements were identified.
▪ Availability of specific preconception services for those who require specialist advice before becoming pregnant because of pre-existing medical or familial conditions.
▪ Specific information to parents and family requesting referral for genetic counselling following the diagnosis of a genetic disorder in a previous child.
▪ Early provision of preconception information and then more emphasis on early pregnancy information to meet the needs of second-time parents.
▪ Information on the effects of disability on pregnancy and vice versa: For some there was no specific information, for others not enough information was given.
▪ There was much information on pregnancy and very little on disability—nothing on being pregnant and disabled.
▪ More specific information related to the disability to fill in gaps in knowledge.
▪ More information on medication, its effects on pregnancy and risk to baby: ‘risk to baby only explored by one support group’.
▪ Information needed ‘on what to do in an emergency’.
▪ More practical hands-on information—what to do, how to do it and what to expect.
▪ Lay knowledge of medical terms to be used for easy-to-understand everyday language.
▪ Information on all methods of contraception not just sterilisation.
▪ Explanation to be given when care is medicalised.
▪ Parent education to be offered at weekends—Sundays for women with families and to accommodate working partners, building a relationship of trust.
▪ Classes to be more focused on disability issues or at least to have disability more integral to session: Parent education to also cover general issues: ‘what it’s like to be a parent’.
▪ More reassurance to have the confidence to ask questions.
▪ Effects of pain relief in labour, effect on baby and what to expect.
▪ Maternity hospital to work in partnership with Primary Care—effective communication one with the other, exchanging relevant information and instruction.
▪ Network to sources of information, newsletters, and phone lines.
▪ Closer liaison with support groups and other specialists to share information.
▪ Accessible information in different formats and media, large font, Braille, audiotape, disc, video (with subtitles, British Sign Language).
▪ Information on conditions associated with pregnancy e.g. symphysis pubis diastases (SPD), depression, and postnatal depression.
▪ More explanation of caesarean section, pre-operative care, postnatal, what to do, what not to do when at home, long-term implications.
Disabled parents access information from many sources, primarily from midwives who are seen as the main carers. Other professionals also give specific information (see responsibilities of midwives) and many are given information from family members who share their own experiences. Disabled parents have individual needs which are impairment specific. Many will make their own enquiries exploring equipment resources and other service provisions.
Best and worst moments of maternity experience
The experiences of many disabled parents are variable, depending on their own personal experience. My research revealed some of the best and worst moments for disabled women.
The following quotes from disabled parents show how experiences can vary.
▪ ‘Whole experience was good’
▪ ‘When pregnancy confirmed was my best moment knowing that I had done what some women couldn’t do’
▪ ‘When my baby’s first picture was taken in theatre, I was afraid I would miss it’
▪ ‘When I found out on the scan that my baby was OK’
▪ ‘The first hour when I was left alone in the recovery area in theatre, just me and my baby’
▪ ‘The care I received from my midwife after delivery, it was brilliant’
From my experience disabled women also report that:
▪ ‘Yes, needs asked by consultant, midwife, maternity care assistant and others’
▪ ‘Shared care good e.g. Sure Start and team midwives, other professionals seen in pregnancy, specialist consultant, fetal centre’
▪ ‘Choice for delivery given by midwife who discussed issues’
▪ ‘Staff on wards were informed of care needs from the plan of care’
▪ ‘Supported by consultant, having all appointments at hospital’
▪ ‘Closely monitored, pleased with this, needs not ignored, taken seriously’
▪ ‘Care needs during labour always good’
▪ ‘Scared of delivery/nervous, helped by tour, also seeing theatre’
▪ ‘Partner always encouraged to get involved’
▪ ‘Staff supportive, pleasant, good fun’
▪ ‘Happy with outcome of delivery/position restrictions’
▪ ‘Information given on folic acid, heparin, pain relief and other medication, this explored in detail’
▪ ‘Good video in antenatal clinic. All kinds of leaflets, books, someone to ask questions’
▪ ‘When the pain relief stopped working’
▪ ‘My fear of delivery’
▪ ‘When my impairment got worse, I couldn’t move’
▪ ‘There was not enough info on symphysis pubis diastases, my needs were unmet’
▪ ‘I was ignorant of the equipment that was available to use, I struggled on my own’
▪ ‘Not being able to bath baby because of my impairment’
▪ ‘Long labour, I was left too long before any intervention: I was exhausted, it exacerbated my myalgic encephalomyelitis (M.E.)’
▪ ‘When I was told the sex of the baby’ (psychological issue)
Other negative experiences of disabled parents are quoted below:
▪ ‘Midwife not aware of my impairment. Impairment and needs only explored by Disability Advisor.’
▪ ‘Hospital should take a more proactive role e.g. a referral to see specialist for care and support before discharge home’
▪ ‘Did not want caesarean section—not prepared enough for this’
▪ ‘Not enough nursing care after caesarean section —needed extra support’
▪ ‘Caesarean section planned because of my impairment, I was sad not having first sight of baby because had a general anaesthetic’
▪ ‘Little help given with self care’
▪ ‘Long postnatal stay—too long’
▪ ‘Own room key factor to recovery’
▪ ‘Had complications postnatal, not prepared for this’
▪ ‘Pain relief discussed on ward postnatally, too late should be discussed earlier’
▪ ‘Not enough care at home’
The assumption is made that disabled women require more tests and investigations than others. The majority of disabled women are happy with all tests performed but the experiences of women are varied in this instance in that they report:
▪ Good care clinically, impairment was not ignored.
▪ Many scans performed, drugs, and the effects on baby, fear of ectopic, size, sex of baby.
▪ Usual bloods taken and urine samples as other women, no extra tests.
▪ Glucose tolerance and other tests in fetal centre reassuring.
▪ Reassured that pregnancy was monitored closely.
▪ Enough information on tests and investigations seen in leaflets, books available, also midwife availability to explain.
▪ Age influenced decision to have blood test. There is an assumption that more tests are done because of age; when test refused, attitudes of professionals can be negative.
To develop positive attitudes towards disabled parents, all carers need to explore their own attitudes in order to offer respect and not impose their own values and beliefs.
Disabled people on the whole face negative attitudes, however in my experience comments have been positive when the impairment is acknowledged and needs identified and supported.
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