Increasingly women with disabilities are making use of the maternity services (Royal College of Midwives (RCM) 2000) although the extent of that utilisation is unknown and is probably impossible and unnecessary to quantify. Nevertheless, anecdotal evidence exists that women with disabilities are undertaking parenthood. This is probably reflected in the slowly developing interest from professionals that is evident from the higher profile of the issues in professional journals. In order to respond to the increasing diversity of women with disabilities accessing maternity services, midwives and others providing those services during the childbirth continuum should have greater depth and breadth of knowledge, understanding and skill. This will then ensure the most appropriate services for this, still small, group of women whose requirements may need to be met in alternative ways. The interaction between effective, appropriate communication and the development of a trusting relationship, and midwives’ interpersonal skills and their ability to be mothers’ advocates can be seen to have an impact on the quality of care that women receive.
Maternity services should be both physically and psychologically accessible. Physical access has to do, for example, with entrance to buildings and the use of facilities whilst in that building; reception desks that are low enough for someone using a wheelchair or of short stature to readily interact with the person at the desk, and mechanisms to help communication and finding the way round the building (see Chapter 3 for more details). Psychological access has to do with the interaction with those providing the service, which means all staff whether professional or support workers. The values, attitudes and beliefs of those people will be reflected in the type of welcome and approachability they present and the respect they offer to the service user. Nothing less than that which is given to other users is acceptable.
Overviews of some of the issues that need to be considered during antenatal, labour and postnatal care are included in this chapter. However, Chapter 8, contains a greater depth of information related to women with specifically identified conditions, including preconception issues, and needs to be read in conjunction with this chapter.
COMMUNICATION AND INTERPERSONAL SKILLS
One key to successful maternity services is effective communication. That communication may be between clients and midwives, midwives and their peers, and midwives and other personnel. Fraser (1999) found that women’s prime concern was good communication from their maternity service providers but they also wanted a special relationship with their midwife. To develop that relationship when working with mothers, a person-centred approach is important. But it could be argued that where a mother has a disability it is more than important; it is essential to aid the development of a partnership between equals, as people with disability may perceive themselves as subordinate to health professionals if previous experiences have put them in that role. Perceptions of equality will aid a two-way communication process (Ralston 1998), and can be helped by the mutual agreement that all parties use first names. Increasingly in all elements of social interaction the automatic use of first names is burgeoning. However it must never be assumed that use of someone’s first name is acceptable.
Communicating effectively can have a life-long benefit to all concerned. As Ralston (1998) puts it ‘…how the midwife communicates [may promote] a therapeutic relationship …or create barriers’ (p 8). However, Goodman’s (1994) report of the maternity experiences of women with disabilities indicated their considerable dissatisfaction with communication with health professionals, although midwives were not singled out. Nevertheless, midwives not only need to develop their communication skills but that development should be at an advanced level.
To participate in advanced communication midwives need to be self-aware and perceptive. Valuable communication requires appropriate speaking i.e. using words that are understood or explaining new words; suitable questioning techniques; and active listening skills i.e. not just hearing the words but understanding the meaning behind them. Butler & Jackson (1998) particularly highlighted midwives’ need for effective listening skills but warned that these are influenced by their own experiences, attitudes, feelings and assumptions. Lack of experience associating with people with disability may mean that midwives feel anxious about communication, although they may feel comfortable interacting with people with disability. A sense of comfort interacting with people with a disability indicates a positive attitude towards them (Gething 1994) and there is evidence that this correlates with confidence in communication (McKay-Moffat 2003). However, uncertainty and negative attitudes may present as not knowing what to say or how to ask questions particularly related to actual or perceived sensitive issues, for example about the disability and how it affects daily life, and discussion about antenatal screening for fetal abnormality (McKay-Moffat 2003).
If mothers are unable to voice their feelings or needs, clues may come from the non-verbal signals that they display, therefore midwives need to be alert to recognise those indicators. In a busy practice situation with pressure of work and time constraints, perceptions of non-verbal signals may be inhibited. Perhaps the answer lies in using the ‘chatty’ conversation style identified by Stapleton et al (2002) that serves to enhance a mutually trusting relationship, thus increasing the likelihood of an openness of expression of thoughts and feelings.
Non-verbal communication from midwives or other carers, for example body language, eye contact and tone of voice, can be very powerful suggestions of both negative and positive perspectives including attitudes and availability of time. Women with disability may be especially sensitive to those signals depending on their perceptions of self and life experiences. People with a disability are often stared at, avoided or receive derogatory remarks from members of the public which may leave life-long sensitivity to non-verbal clues from those with whom they interact. Experience of contact with health professionals may also have left them with a sense of intimidation, vulnerability and inferiority. Therefore midwives must reflect on their own attitudes, opinions and preconceived ideas, and be vigilant to their own non-verbal signals that may betray them. Tone of voice and choice of words may reveal underlying acceptance or prejudices to which women are likely to be sensitive, especially those with learning disability. Verbal intonations will give a woman who is blind the clues others obtain from visual signals, whereas visual signals do not offer the person who is blind that background detail. Non-verbal communication may enhance the perceptions of people unable to hear and offer clues to what is actually meant.
Information giving and receiving are a vital part of the role of midwives. Given information needs to be clear, unambiguous and meeting a recipient’s requirements. Women with disabilities will want the same information related to pregnancy and childbirth as other women but they may also require additional information. Having appropriate, relevant information leaves women in a better position to take control over their childbirth experiences and to make the choices that suit them. Despite being a large part of the daily work of midwives, the giving of information may not be achieved as effectively as practitioners may think (Blackford et al 2000, Stapleton et al 2002). Yet if women receive the information they need, satisfaction with their maternity service is greatly increased (McKay-Moffat 2003). What midwives must do is avoid the ‘patter’ of information giving, which means that what they say revolves around a set spiel that is given to everyone with little regard for individual preferences and desires. Further, the way information is delivered must be considered as the positive or negative aspects of an issue can indirectly guide the response and the choices made, or lead to misunderstanding (Stapleton et al 2002).
Despite using the word ‘discussion’ much of what Stapleton et al (2002) noted during antenatal visits was little in the way of opinion or thoughts elicited from women. If ‘discussion’ is inadequate with a mother with a disability, information and opinion gathering will be lacking, resulting in failure to identify her specific individual or alternative needs. The use of effective questioning techniques, in particular the use of open questions where relevant, will enhance midwives’ ability to elicit what is required and facilitate two-way discussion. However, this type of genuine discussion takes time, therefore adequate preparation must be made to ensure availability of time for each appointment.
Mothers with sensory impairment
Communicating with a mother who is deaf can prove challenging and stressful for all concerned without the right know-how or correct help. Pen and paper can be useful as can text using a computer or via a mobile telephone. If a woman lip-reads, knowledge and understanding of what to do and what not to do is vital, for example the speaker’s face should be well lit, the mother looking at the speaker and speech should be at a steady pace without over-emphasis of the words (Iqbal 2004). Basic skills in British Sign Language (BSL) can be very valuable for midwives, as can a readily available finger spelling chart. Although it is time-consuming spelling out every word, it can be useful for the often new terminology that will be used. Literature to take away and read later is vital to ensure clarity of understanding and reinforce the information given.
The use of an appropriate interpreter is often the most efficient way of ensuring effective communication but caution needs to be employed to avoid talking to interpreters rather than mothers. Bramwell et al (2000) recommended independent freelance translators and dismissed the use of family members, especially children. They argued that using family members would mean that women loose their privacy; that family emotional involvement may lead to misinterpretation of information; and that accusations of child abuse could even be levied. A regular female interpreter chosen by a woman is likely to be the ideal. However, access at short notice or in an emergency could be problematic (Iqbal 2004). The private, intimate time of giving birth may be the time when mothers want no one other than a close significant other person present. Therefore planning and preparation for communication between a mother and her midwife who is going to provide labour care during pregnancy would be of great advantage to all concerned. However, realistically this may not always be possible.
Verbal communication with mothers who are blind or partially sighted is usually not a problem but additional or supporting information needs to be in a format that is useable. This may be in the form of literature in large print or Braille, or audio tapes. To be innovative in this area there is nothing to stop midwives recording the content of commonly used leaflets or information packs for women to take away. As the women will not be able to read their hand-held records it is also important that midwives actually read to mothers what has been written. This means that each mother can ensure accuracy and clarity of information, and that confidentiality will not be breached because she had to ask family or friends what was in her notes.
Midwives need to be proactive in ensuring that aids to communication for women who find communication difficult are available, for example a loop system, minicom (textphone), hearing aid amplifiers, flashing lights, and literature in Braille or large print. Some Trusts, however, due to the financial implications, may find this difficult or impossible to fund. This leaves it up to individual midwives to use their skills of flexibility and adaptability, and resources from outside agencies to fill the gap in facilities. If this is the case then the respective organisations need to be reminded of their duty of care under the Disability Discrimination Act (1995).
Mothers with learning disability
The ability of mothers with learning disability to communicate will vary depending on their level of disability. In general people with learning disability have a reduced capability of understanding new or complex information and abstract concepts, and they may not be able to read letters or complete documentation (DoH 1999). Straightforward language should be used when both seeking and offering information. If understanding of time and dates is difficult focusing a question related to a specific event may elicit more accurate information, for example when trying to determine the date of a last menstrual period.
Taking a social, medical and obstetric history may be difficult therefore liaison and information sharing between service providers, for example GPs, health visitors and social workers will enhance the quality and accuracy of necessary information. However, that information sharing should be a two-way process therefore it is important that midwives share information about a woman’s progress during pregnancy and childbirth, but still remain within the boundaries of confidentiality (NMC 2004a). So this means seeking permission from each woman to share necessary information about her to other relevant service providers or carers. If permission is refused, her rights are respected the same as everyone else.
People with learning disabilities may not have difficulty communicating their ideas and preferences (DoH 1999) so it is important that they know about and understand that they do have choices the same as everyone else. However, extra time may be needed to enable that choice to be informed. Visual aids will enhance learning and if written material is appropriate it should be in a language that is readily understood. Information may need to be repeated and alternative ways of giving that information may need to be explored to ensure or reinforce learning. Terminology and bodily functions are often difficult for those without learning difficulties to understand, and for women with learning problems models (see Figs. 6.1, 6.2) and pictures can be of great use. Skill acquisition may be slow and additional time will be needed to not only explain how to perform a procedure, for example basic baby care, but to give opportunities to practice.
In order to try to counteract any previous negative experiences of healthcare and to focus help and support for mothers, midwives need good interpersonal skills. Their conduct needs to be one that radiates approachability and it needs to be obvious that they are non-judgemental and offer unconditional regard. Research by Tinkler & Quinney (1998) demonstrated that when women were treated as individuals in a supporting, enabling partnership as opposed to one where midwives were dominating or interfering, mothers gained the most benefit and satisfying experience. Application of those same principles should be implemented in care provision for mothers with a disability who may feel vulnerable, particularly if they have received negative attitudes from family, friends or professionals towards their decision to become a parent.
Women with a disability may strive against all manner of difficulties to achieve conception and a child. Like Neville-Jan (2004) some avoid analgesia to enhance their ability to conceive, thus enduring what could be considered as unacceptable pain. Others may alter or omit medication that may be harmful to the fetus challenging their own health and well-being. Therefore a sincere, sensitive and caring approach to a mother’s possible emotional and personal feelings is a must.
Records and care planning
The most effective way(s) of communication with mothers should be recorded in their notes as appropriate to ensure speedy instigation of that method by all concerned who work with them. This will not only enhance all parties’ knowledge and understanding by ensuring that the exchange of information between mothers and helpers is readily available, but will help to prevent a disempowering relationship.
Record keeping, care planning and liaison with other members of a multi-professional team require effective communication skills. Adequate records about a mother’s disability, how it affects her daily living and what treatment if any she needs will lessen the need for repeated history taking that can cause her considerable distress. But it is not just about making the records, it is important that those records are read by a person taking over care. Plans of care should be made in conjunction with mothers and other experts as appropriate, for example occupational therapists or specialist consultants. However, the pressure of work may make it difficult or impossible for all those concerned to get together. So it is important that the midwife acts as the coordinator, taking the lead by liaising with all those concerned to provide a holistic plan of service. A plan of care is formulated by first undertaking a thorough assessment of the mother’s needs and wishes (see below).
MIDWIVES AS ADVOCATES
Midwives believe they are women’s advocates and the directives in the Code of professional conduct (NMC 2004a) and ‘Midwives rules and standards’ (NMC 2004b) demonstrate that this is a key part of the role of midwives. Indeed, women expect midwives to be their advocate (Fraser 1999). However, as Warrier (2003) explains, in today’s ethos of practice where risk management is all embracing, this is a challenging element of the role. Where a mother with a disability is concerned, that challenge may be even greater because she may be perceived as ‘at risk’ because of her disability. Midwives providing care may find the role demanding and testing of their ability particularly if they are confronting ‘the system’ on mothers’ behalf. Yet meeting that challenge is potentially very rewarding for both mothers and midwives.
Advocacy goes hand in hand with trust. Midwives need to trust women: their knowledge of self and their capabilities. Woman need to trust midwives because that relationship can affect women for the rest of their lives (Gould 2004) but of course that trust needs to be earned. A philosophy of openness and honesty will facilitate the development of that trust. Midwives need to trust themselves: their knowledge, skills and ability to support women through the whole birth process. A philosophy of mutual trust and respect will enhance a working partnership that will benefit all parties. A trusting relationship will enhance women’s satisfaction with their care and lessen the chance of them holding back i.e. not asking for information or help, or not sharing information (Fraser 1999).
To act as an advocate midwives need to be proactive in championing the needs of women. From her research with parents with a disability Wates (1997) identified four main characteristics of a good professional allay as one that:
▪ provides encouragement;
▪ supports parents’ way of doing things;
▪ is helpful in finding solutions to practical challenges;
▪ sees parenthood as a right of passage into society.
Midwives, whilst being the experts in normal midwifery and with an extensive depth and breadth of knowledge and skills, are unlikely to have all the information and ability to meet the needs of all women with a disability. This means that liaison with other disciplines from the health, and a social or voluntary sector, is vital. This will not only enhance the level of expertise that is available to women, but will enable midwives to develop their helping skills. Both aspects will initially benefit mothers concerned, but knowledge and skills gained by midwives will be available for mothers in the future.
Midwives’ advocacy role for mothers may have to be extended to function with colleagues and women’s families. Not all professionals appear to have positive attitudes towards mothers with disabilities, and family members may also be sceptical about their undertaking to have a child. Situations may arise where a woman makes a choice about a specific issue that professionals and the family feel is inappropriate, for example refusal of antenatal screening for fetal abnormality or a decision on place or mode of birth. This may result in unacceptable pressure being put on a woman to conform and, particularly where professional advice is rejected, it may result in an insensitive or even antagonistic approach. If midwives have discussed the issue(s) adequately and given women all the information available; if they have been honest about their concerns; if there truly is an open relationship where mutual trust is evident; then even if midwives disagree with decisions women make, those decisions should be respected. Midwives are then being supportive: that is genuine advocacy.
CHOICE AND CONTROL
In 1993 the philosophy of the government’s Changing Childbirth report (DoH 1993) promoted the rights of women to have care that centred on their needs and was based on their choice and control over their childbirth processes. However, 5 years later Baroness Jay, the then Minister for Health (DoH 1998), acknowledged that women-centred care for minority or marginalised groups requires special effort. Policies and procedures that lack flexibility, and NHS Trusts’ financial constraints make some innovative practices slow to be implemented, therefore the needs and choices of some women remain unmet. However, midwives spearhead midwifery practice and they can be a powerful force to bring about change if effort is made. Much of that change may have little in the way of financial implications because it revolves around patterns of care and the attitudes of midwives and other professionals.
The more recent government document, the National Service Framework for Children, Young People and Maternity Services (NSF) (DoH 2004), continues to promote the rights of women to have choice and control over what happens to them during pregnancy and childbirth. But this document makes much greater emphasis on including women from disadvantaged or vulnerable groups (of which women with a disability are frequently a part) and focusing on their individual needs.
Conventional choices for mothers with a disability may be inappropriate, therefore midwives may need to make a special effort to empower women with a disability to make choices appropriate for their needs. Midwives need to adopt an attitude of flexibility and adaptability as these will be the key elements in meeting those choices. This may mean that midwives utilise local resources or contact self-help or voluntary organisations (RCM 2000) or statutory bodies to enhance the level of practical and financial support for mothers. They may need to be proactive in ensuring that there is a list of readily accessible contact details of local and national organisations, or people who could prove very useful to the mother to help fulfil requirements.
By empowering mothers to make the choices that best meet their wishes and requirements midwives are enabling them to take control over their maternity services and childbirth experience. Participation in decision-making could ensure that women know they are being treated as the expert in their care (Tinkler & Quinney 1998). Midwives also need to recognise that women with a disability are the expert in their own situation, therefore they are in the best position to make the decisions that affect them and the care they receive.
CONCERNS WITH NORMALITY
Women with a disability are likely to be concerned about the ‘risk’ related to pregnancy (Thomas 1997) both for themselves and their baby, but they may not always verbalise that concern. Pregnant women generally want to know that their pregnancy is progressing normally, paralleling those of other women but they may also want to be seen as different and unique (Earle 2000). Earle attributes midwives’ expertise and authority in normal childbirth to their ability to confirm normality for women providing the key reassuring element of care provision. Conversely, Earle explains that good communication with women, knowing them individually and using their name promotes a sense of being individual and special. On the other hand, if a mother with a disability sees herself as achieving womanhood and developing her perception of self as a mother (Grue & Trafjord Lærum 2002, Thomas 1997), she may not want to be seen as different or special. Wates (1997) declares ‘Asserting one’s “normality” is linked ultimately with asserting the right to retain control over one’s life’ (p 14).
Women may not want to be praised or seen as special any more than they want to be blamed or receive sympathy. With two possible contrasting perceptions of being a mother with a disability, midwives need to use their own insight and sensitivity to elicit how a woman feels about her pregnancy and future motherhood. This will then guide appropriate responses and the ability to offer a maternity service that is focused on mothers as individuals.
All women, but particularly women with a genetically linked disability, need accurate information about prenatal screening. However, midwives and obstetricians may not always be fully conversant about screening guidelines (Wray & Maresh 2000) and the probability of genetic abnormality occurring. Sometimes this is because of the lack of concrete evidence to underpin information. This may then result in women lacking understanding about their babies’ risks of abnormality and even the possibility of inaccurate screening test results (Bramwell & Carter 2001). Rowe et al (2002)postulate that additional communication skills training may improve information giving. This is particularly necessary when needing to explain to mothers that there is no information available.
CONTINUITY OF CARER
Women should have the choice of lead professional for their maternity care although in reality that choice may not be readily offered or taken up. Continuity of carer has been a much discussed issue in maternity services mainly since the Changing Childbirth report (DoH 1993). Although women often appear to benefit from continuity of midwife carer, evidence in the literature is not always conclusive. Nevertheless, it is recognised as a marker of good practice in the NSF document (DoH 2004). Indeed, a mother with a disability is likely to benefit considerably from seeing the same midwife and by the development of a close positive relationship. Regular visits by one midwife or a very small team of midwives will aid the development of a trusting rapport particularly if a woman feels vulnerable or finds it difficult to interact with new people. Where communication is challenging, for example with a mother who is deaf or has learning difficulties, midwives will have time to develop their skills to improve their chances of communicating effectively (see Chapter 7 for how this can be done).
A sense of relaxation and confidence during interaction with another person aids greater depth of discussion about feelings and wishes, and can have a positive impact on perceptions of experiences. Therefore issues that require solutions will be more transparent and sensitive topics more easily addressed without embarrassment or ill feeling. Having the depth of knowledge and understanding of a mother’s individual disability and her ways of managing daily living will enhance midwives’ ability to advise on practical things like coping with body changes in pregnancy, positions for giving birth, and baby care.
A partnership of care where mothers know their own expertise is respected will strengthen the decision-making process and give confidence to all parties concerned. That decision-making process will be aided by readily available channels of communication and consistency of information. This in turn will boost mothers’ self-confidence and feelings of security with their own and midwives’ judgement and ultimate decisions.
All women regardless of ability should have a detailed need assessment performed. This analysis will form the basis of a plan of care for the antenatal, labour and postnatal period. The purpose of this plan will be to inform midwives and other carers of an individual’s general needs and care requirements (see Box 4.1). Ideally this process should be undertaken in a mother’s own home as this is a non-threatening environment, and will allow the physical, emotional, psychological, educational, spiritual and financial dimensions of health to be explored. Mothers should be encouraged to give a history of their impairment and any consequent limitations. They should consider, discuss and focus on the details of their own specific needs (see Box 4.2) and be supported to seek ways to overcome any obstacles in an innovative, flexible and creative way.
▪ Support and advice required.
▪ Emotional and psychological needs.
▪ Access issues.
▪ Specific equipment needs.
▪ Communication needs.
▪ Requirements for specific relevant literature.
▪ The format of information.
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