Increasing numbers of women with disability are becoming users of mater-nity services, as they seek to live full and independent lives.18 Often, simple measures can be taken by the midwife to enhance these women’s experi-ences of maternity services. the Disability Discrimination Act, related to
‘Access to goods, facilities, and services’, came into force in December 1996, making it unlawful for service providers to discriminate against peo-ple with disabilities by:
• Offering a lower standard of services
• Offering less favourable terms
• Failing to make alterations to enable disabled access.
this includes all hospitals and health- care facilities.
Who are the disabled?
the World Health Organization (WHO) has defined disability as an umbrella term for impairments, activity limitations, and participation restrictions, referring to the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors).19
However, the definition of disability varies widely between different social groups and cultures, as do the meanings which are attached to a per-son being labelled as disabled.20 In the uK it is very difficult to measure the number of disabled because, although local authorities must keep a record, disabled individuals are not required to register. Disability is also very sub-jective; not all people with impairments see themselves as disabled.21 Disability, sexuality, and pregnancy
the non- disabled population, inclusive of health professionals, has:
• Disputed that disabled women might have sexual desires, have sex, or wish to reproduce
• Defined sexual performance and reproduction for the disabled as a medical problem
• Disputed that the disabled are capable of being, and entitled to become, parents.22
Women with disabilities are expected to forgo mothering in the interest of the child, as some fears exist that:
• the disability will be handed on to the child
• the child will be psychologically harmed
• the child will be deprived
• the child will be burdened.
Disability and the midwifery services
Disabled women have reported the following difficulties encountered with maternity services:
• Lack of physical access
• Lack of accurate information about pregnancy and childbirth, especially in relation to their disability
DeALING WItH DISABILItY DuRING pReGNANCY AND BeYOND 155
• Lack of effective communication
• Ignorance of maternity professionals about both the medical and practical needs of disabled mothers
• Inflexibility in maternity services
• Language and attitudes which reflect prejudice
• Doubts about a disabled woman’s ability to cope with motherhood
• Staff who do not respect a disabled woman’s own knowledge of her disability
• Negative attitudes from health professionals.23
the Royal College of Midwives (RCM)24 supports the principle that:
‘It is important that services reflect the needs of women who have disabilities and ensure that action is taken to overcome the obstacles which confront them.
While physical obstructions are of course a frustrating problem, there are other equally daunting barriers resulting from prejudice and ignorance of able bodied professionals.’
Midwives and disabilities
Midwives must be aware of their own values and attitudes regarding the rights and responsibilities of childbearing.
Midwives have the potential to strengthen a woman in her ability to give birth and to be a parent in a society that may not be 100% supportive of her decision to do so.
However, midwives have expressed concerns that:
• they do not always feel equipped to do this
• there is a lack of a coordinated approach by health professionals and health authorities
• Little is known about available information and resources
• they are unsure about alternative support agencies
• they feel that service provision is preventive, rather than reactive.
General recommendations for practice
• Identify disabled clients early and ensure this information is passed on to other service providers involved.21
• provide services in settings that are architecturally/ physically accessible.
• provide services that are psychologically accessible.
• provide preconceptual care to assist the woman and her family prior to the decision to become pregnant.
• provide pregnancy care that is sensitive, based on thorough assessment of physical and psychosocial needs, and well planned.
• Identify the woman’s strengths, focusing on the social model and how needs can be met safely, rather than directly on the impairment.
• One- to- one care and continuity are important; refer to the specialist or named midwife with responsibility for disability if there is one.
• plan for the special needs of labour and birth.
• Assist the mother to organize for the many needs of the post- partum period.
Sensory impairment
Recommendations for women with visual impairment
• One- to- one care and continuity are important.
• tactile models are helpful when describing aspects of the childbirth process, e.g. doll and pelvis, knitted uterus, cervical dilation chart which has holes representing the different stages of dilation.
• teach and encourage the woman to palpate her own abdomen; focus in on fetal movements and listen to the fetal heart. this will enable her to know her infant antenatally.
• Familiarize the woman with the hospital prior to admission. If the woman requests the presence of her guide dog, organize this well in advance.
• All health- care workers should introduce themselves verbally by name and function.
• Give full explanations before all procedures.
• encourage immediate skin- to- skin contact following birth, to enable the woman to know her baby.
• perform any examination of the baby with the woman present, giving a clear explanation of the procedure.
• Describe the baby’s characteristics, expressions, movements, and behaviours.
Recommendations for women with hearing impairment
• Determine the way in which the woman communicates most comfortably, e.g. writing, hearing aid, lip- reading, finger spelling, sign language, or interpreter.
• provide one- to- one care or small classes for antenatal education.
• Make it clear in the records that the woman has a hearing impairment.
• If the woman is able to lip- read, obtain her attention before speaking;
face the woman; do not over- mouth words; do not stand in shadows, and do not dim the room lights.
• Be patient; repeat and rephrase as required; avoid analgesia that causes drowsiness.
• Familiarize the woman with the hospital prior to admission. Choose a quiet room.
• Watch for facial expressions during procedures; the woman may not be able to communicate discomfort or concern.
• Wear a transparent mask if one is needed.
• provide as much written literature as is available on all aspects of care.
• provide early screening for babies at risk of either inherited or acquired deafness.
• ensure that application for a baby alarm is made early in the antenatal period.
• Inform mothers about the Disability, pregnancy & parenthood International (DppI) DVD Pregnancy and childbirth— a guide for deaf mothers.24
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Women with learning disabilities and perinatal mental health disorders
Recommendations for women with learning disabilities
Most parents with learning disabilities recognize that they need extra help and support. the support may be practical, emotional, or social, and most likely a combination of all three. In order to provide successful support, midwives need to:
• Recognize that these parents are individuals who may have many skills and abilities on which to build
• Ask the person who best knows the parent about the most effective ways of communicating21
• Recognize ways in which self- confidence and self- value can be increased
• Recognize that external influences will impact on the individual.
When teaching parenting skills, the midwife should:
• Break a task down into smaller sections, allow time, and be prepared to repeat the same information
• Avoid using long words or jargon
• Keep to the facts and avoid using abstract concepts
• Demonstrate the task alongside the parent; the parent then can watch the task and repeat the actions
• Allow the parents to complete as much of the task as they know before reminding them what comes next
• Always repeat the same prompt and the same set of instructions
• Write down training plans explicitly, showing verbal and physical prompts and at what stage of the task they occur
• Remember that the written word is not always the most effective or the best way to impart knowledge to parents. A variety of visual or audio tapes, photographs, or drawings may be more accessible, either on their own or accompanied by simple written information.
When using written information:
• Avoid abbreviations
• use simple words that are not too long
• use large print; ask if they prefer capitals
• Highlight the main points
• use lists or bullet points where possible.
Recommendations for perinatal mental health
the term ‘perinatal mental health’ is a term used increasingly to relate to the various mental health disorders experienced by women during preg-nancy and the postnatal period. these include a previous history of mental disorder, signs and symptoms demonstrated in the antenatal period, along with the range of disorders that appear in the postnatal period. Despite the high prevalence of postnatal depression and anxiety (15– 20%) such disturbances often go undetected.25
It is important to recognize that the management of mental health prob-lems during pregnancy and the postnatal period will differ from that at other times because of the nature of this life stage.25
Midwives have a crucial role in reducing the effects of perinatal mental health disorders on the mother, her child, and the family.26 Midwives should:
• provide continuity of care and carer whenever possible
• Carry out a modified psychiatric history during the booking interview26
• Be alert to the increased likelihood of a woman relapsing or developing postnatal mental illness if she has a personal or family history of a psychiatric illness and/ or a post- partum illness27
• Acknowledge the woman’s role in caring for her baby and support her to do so in a non- judgemental and compassionate way25
• Involve the woman and, with her consent, her partner, family, or carer, in all decisions about her and her baby’s care25
• Liaise swiftly and appropriately with the multidisciplinary team.
If the woman has a previous history of mental disorders, antenatal assess-ment by a psychiatrist is essential, along with a manageassess-ment plan for after delivery and access to a perinatal mental health team.
Post- traumatic stress disorder
Childbirth has been identified as an event that could be psychologically traumatic, leading to the development of post- traumatic stress disorder.28 postnatal post- traumatic stress disorder is a condition, however, that has only been acknowledged since the 1990s. the prevalence rate varies from 1% to 6% although it is thought that it may be increasing due to further med-icalization of childbirth and women’s dissatisfaction with intranatal care.29
Midwives should be aware of:
• the trauma a woman may experience in childbirth
• the action that health professionals can take in order to prevent its occurrence
• the factors that can contribute to post- traumatic stress disorder, including:
• Violent birth
• Fear for the baby
• post- partum pain
• Low energy levels
• Sexual abuse before and during pregnancy
• excessive vomiting in pregnancy
• ectopic pregnancy
• Hospital treatment for miscarriage
• Macrosomia
• episodes of preterm labour although the mother gave birth at term.28
• post- traumatic stress disorder can result from loss of control and a sense of powerlessness in labour, lack of trust, and inadequate information.30
All women should have the opportunity to discuss with their midwife the care they received during childbirth.
Referral either to a postnatal listening service or to a ‘Births after thoughts’ programme should be available to all mothers where they can talk to a midwife trained in this area.
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Women with physical disabilities and chronic illness
Women may present with a wide range of physical disabilities and chronic illness during pregnancy, including multiple sclerosis, spinal cord injuries, cerebral palsy, amputees, and rheumatoid arthritis, to name but a few. the general recommendations for practice identified at the start of this section should be followed, together with the following:
• Caregivers should respect the woman as the primary source of information about how to proceed with care
• Women with disabilities are very aware of their abilities and limitations, and all care should be discussed fully with them and their partners
• Assist the woman to focus on her abilities and not her disabilities
• Women with chronic illnesses will require information about the effect of their illness and drug therapy on the pregnancy, birth, post- partum period, and the newborn, as well as the possible effects of the pregnancy upon their condition
• A multidisciplinary approach to care must be adopted to include the midwife, the obstetrician, the woman’s disability and/ or medical consultant, the physiotherapist, and the occupational therapist, etc.
• Help the woman to manage her own care regimes as much as possible
• take extra care to prevent skin breakdown if mobility is restricted.
References
18 Raynor MD, Mander R, Marshall Je (2014). the midwife in context. In: Marshall Je, Raynor MD, eds. Myles Textbook for Midwives, 16th edn. edinburgh: Churchill Livingstone, pp. 3– 53.
19 World Health Organization (2011). World report on disability. Geneva: World Health Organization. Available at: M www.who.int/ disabilities/ world_ report/ 2011/ report.pdf?ua=1.
20 Helman CG (2007). Culture, Health and Illness, 5th edn. London: Arnold.
21 Royal College of Nursing (2007). Pregnancy and disability: RCN guidance for midwives and nurses.
London: Royal College of Nursing. Available at: M www.rcn.org.uk/ _ _ data/ assets/ pdf_ file/
0010/ 78733/ 003113.pdf.
22 Walsh- Gallagher D, McConkey R, Sinclair M, Clarke R (2013). Normalising birth for women with disability: the challenges facing practitioners. Midwifery 29: 294– 9.
23 Walsh- Gallagher D, Sinclair M, McConkey R (2012). the ambiguity of disabled women’s experi-ences of pregnancy, childbirth and motherhood: a phenomenological understanding. Midwifery 28: 156– 62.
24 Disability, pregnancy & parenthood International (2006). A guide to pregnancy and childbirth for deaf parents. Available at: M www.dppi.org.uk/ journal/ 5354/ resources2.html#dppidvd.
25 National Institute for Health and Care excellence (2014). Antenatal and postnatal mental health:
clinical management and service guidance. NICe guidelines CG192. Available at: M www.nice.org.
uk/ guidance/ cg192.
26 Centre for Maternal and Child enquiries (CMACe) (2011). Saving Mothers’ Lives. Reviewing mater-nal deaths to make motherhood safer: 2006– 2008. The Eighth Report of the Confidential Enquiries into Maternal Deaths in the United Kingdom. BJOG 118(Suppl 1): 1– 203.
27 Bates C, paeglis C (2004). Motherhood and mental illness. Midwives 7: 286– 7.
28 Alcorn KL, O’Donovan A, patrick JC, Creedy D, Devilly GJ (2010). A prospective longitudinal study of the prevalence of post- traumatic stress disorder resulting from childbirth events. Psychol Med 40: 1849– 59.
29 peeler S, Chung MC, Stedmon J, Skirton H (2013). A review assessing the current treatment strategies for postnatal psychological morbidity with a focus on post- traumatic stress disorder.
Midwifery 29: 377– 88.
30 Laing KG (2001). post- traumatic stress disorder: myth or reality? Br J Midwifery 9: 447– 51.