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Education: preparing midwives to meet the needs of disabled women during their childbirth experience.

Zita Killick - Senior Lecturer Midwifery, Faculty of Health & Social Care, Anglia Ruskin University, Chelmsford

The University works with local NHS Trusts to provide midwifery education. Students, mostly direct entry midwives, undertake a 3 year BSc. (Hons.) degree with a mix of 50% theory & 50% clinical practice; there is some mention of disability in the first two years, and a special option module devoted to it in the third year.

Inquiry-based learning forms part of the teaching and learning strategy. The students are exposed to triggers; I use video, and when they have seen this they go off in small groups to find material, which they share on their return. They are in effect self-managing their study, reflecting also on clinical and other experiences and applying theory to practice. I fill in some of the gaps for them, but we also use lectures, seminars and discussions. It is useful that the students bring back information from a number of hospital trusts, and occasionally from personal work of their own, always preserving confidentiality.

The National Service Framework for Children, Young People & Maternity Services (DoH, 2004) requires maternity services to be equitable and accessible to all, complementing the purpose of the Disability Discrimination Acts of 1995 & 2005. The Office of National Statistics (2001) reported a total of 10.3 million disabled people in the UK, among whom are an estimated 1.2 to 4 million parents (Goodinge, 2000; Disabled Parents Network , 2008).

The Disabled Parents Network definition of a disabled parent includes any person with actual or perceived physical, sensory, emotional, or learning impairment, long-term illness, HIV, drug or alcohol dependence or with a mental health issue. These impairments may be obvious, hidden, long term or short term, and a parent may be unmarried, of the same sex, or a step- or grandparent.

The module content includes:
Disability definitions & relevant legislation
Disability awareness, for example where acquiring some familiarity with British Sign Language
Provision of services & resources, local and national.
Voluntary organisations
Roles of health & social care professionals, who may speak to the students at the University, or agree to their visiting them.
Communication & interpersonal skills
Health Promotion
Education for childbirth
Parenting skills

Topic areas chosen by students have included:
Arthritis
Asperger's syndrome
Blindness and Visual impairment
Cerebral Palsy
Deafness and Hearing impairment
Learning Disability. An example has been a student who helped a young woman, a poor reader, to construct a personal calendar of the pregnancy and significant personal and family dates.
Mental ill health
Mobility problems. A student studied symphysis pubis dysfunction, but correctly identified that the mobility difficulty and its solution could be applied to other conditions affecting the pelvis and low back.
Multiple Sclerosis: some students correctly identified care of the baby as the need.

This module is assessed when the health promotional materials relating to the needs of parents whom the students had been assisting are discussed within their group and checked by two assessors. It was gratifying to learn that they had regularly turned to the DPPi for help. Promotional material produced has included a board game based on snakes and ladders, which works as a teaching and learning tool for mothers in self and baby care. We have also seen calendars, leaflets, posters, models, diagrams on T-shirts, British Sign Language, and plans for disability related parent education classes.

We have recommendations for practice in the midwifery setting (from Carty in Alexander et al, 1995, pp. 48 - 68). Services are to be physically accessible and psychologically appropriate; if possible preconception care should be included. Provision is to be made for well planned pregnancy care which is sensitive, and based on a thorough assessment of the physical and psychosocial needs and the special needs of labour and birth. Thought must also be given to the preparation of interpreters and signers exposed to the birth event.

Midwives are developing more knowledge and skills in this area and working in partnership with other professionals, voluntary organisations and others, and with parents, who are best placed to describe their own needs. Jean Ball (adapting from Bryar, 1995, pp.160-161) provides a picture of the support systems for maternal well-being:
Maternity services derived from society's views
A woman's personality formed by her upbringing and life experiences
The family
The effective linking of these elements

Services and patterns of care must respond to the needs of women, whether disabled or not, which necessitates listening, learning, and changing.

References.

Ball J The Deck-Chair Theory of Maternal Wellbeing in Bryar R (1995) Theory for Midwifery Practice. Hampshire: Macmillan Press Ltd.

Carty E Disability, pregnancy and parenting in Alexander J, Levy V, Roch S (Eds.) (1995) Aspects of Midwifery Practice: A research-based approach. Hampshire: Macmillan Publications Ltd.

Department of Health (DH) (2004) The National Service Framework for Children, Young People & Maternity Services. London: The Stationery Office

Disability, Pregnancy & Parenthood International (DPPi) http://www.dppi.org.uk

Goodinge S (2000) Jigsaw of services: Inspection of services to support disabled adults in their parenting role. London: DoH

McKay-Moffat S (Ed.) (2007) Disability in Pregnancy & Childbirth. Edinburgh: Churchill Livingstone

Rotheram J (2007) Pregnancy & disability: RCN guidance for midwives & nurses. London: RCN

Putting theory into practice.
Julie Williams (JW), midwife, Basildon and Thurrock University Hospital AMENDED

In my antenatal classes, attended by 80 to 100 women, I use art work of my own to illustrate the physiology of pregnancy and birth, and the mothers have found this helpful. In particular it prevents their accepting misleading information and advice at home.

All maternity units should have a specialist midwife who is readily accessible and knowledgeable within the field of disability. A sensitive attitude ensuring effective care is of course important. This named midwife should be allocated to all women with disabilities, so that up to date information regarding voluntary organisations and support networks is available.

Examples in practice:
Hand held notes should have a Braille sticker carrying the contact details of the labour ward. For the visually impaired a sticker with the same information in a large black font and on a yellow background should be attached.
Pregnant women with a hearing impairment should be provided with a minicom free of charge, with which they can contact their key health professional.
All hospitals should be equipped to meet the needs of their clients.
Parent education should be flexible, creative and accessible.

Tours of the maternity unit should be encouraged and sufficient time allowed to provide familiarity with:
The layout of the room
The position of the bed and toilet
Labour ward equipment
Mobilising area available
A cardiotocograph (CTG) machine
The location of Entonox equipment and its use
The cot to bed location - separate or clipped on
Beanbags, birthing balls, the birthing stool and the water pool

Intrapartum.
Continuity of care for the woman and her birthing partners is essential.

Examples in Practice:
A woman who has a hearing impairment may require an interpreter, arranged antenatally, whom ideally she has already met.
Effective communication with a visually impaired woman is essential to help her to feel safe and secure during this overwhelming experience.
Moving and handling equipment should be readily available.

Postnatal.
All women should receive up to 28 days care.
For visually impaired women who choose to bottle feed the Royal National Institute of the Blind have available to purchase talking measuring jugs, weighing scales and thermometers.
For those with hearing impairment vibrating baby monitors are available.
It is essential that there is a good support network with families and health professionals.

Future needs.
The development of guidelines to ensure that all women are provided with effective support.
A funded specialist midwife within this field. This would facilitate learning among their colleagues.
The design of a joint working framework with common pathways and joint decision making with others such as occupational health, mental health and learning disabilities.
Written procedures and check lists for the support of women with disabilities available to all hospital and community staff.

Although statistics are not readily available disabled mothers are becoming more visible in the maternity care system. In my trust we are now working towards ways of auditing patient satisfaction and by this means and through research we can develop and improve the service.

My experience with one disabled couple.
She was deaf from birth, he from the age of three due to meningitis. Booking was at 12 weeks, in the hospital; this would preferably have been in their home, and I will always try to arrange this if possible in future. I introduced them to three interpreters, one of whom would attend during the labour and birth. She laboured in the birthing pool with her partner; an interpreter and I were in attendance. This worked very well throughout, including the birth, and I found it very affecting.

Working for change: Influencing maternity services as a disabled parent - ways in which disabled parents in East Kent are changing NHS Maternity Services.
Isabella Devani, Co-chairperson, East Kent Maternity Services Liaison Committee (read in her absence by Jill Wilson)

The Maternity Services Liaison Committee (MSLC) monitors, evaluates and helps to shape the local NHS maternity service. It is multidisciplinary, comprised of midwives, obstetricians, commissioners, other supporters of the service such as breast feeding counsellors, and most importantly user members who are women or their partners who have had a baby in the last three years.

The MSLC is informed and consulted on all major issues facing East Kent's maternity services. As a disabled representative on the MSLC it is possible for me to inform the commissioners within the PCT and hospital trust management of the possible barriers to disabled parents, and of the benefits to all families and staff in making changes to the service. Disabled parents have much to offer the NHS from their own experience in the design of maternity services. A surprising number of adaptations benefit all women expecting a baby.

An audit of consultant-led labour wards across the region has been an important opportunity to observe barriers to disabled people at first hand. These have included a lack of disabled toilets and bathing facilities, an absence of variable height cots, limited space on wards and areas inaccessible to those with impaired mobility. The findings were reported to the responsible Clinical Governance Committee and within nine months a refit of bathrooms, including flush floor showers and other facilities have been achieved. The new wet-rooms allow everyone a safer and more comfortable shower with space for assistance from staff as necessary. The needs of disabled parents have now been made part of the agenda in terms of both environment and service design. For this project the East Kent MSLC has been awarded a NHS Best of Health Award for its achievements.

Since water can be particularly useful for helping women cope with the pain of labour and can reduce spasticity, the MSLC would like to see the introduction of water birth facilities for women with physical disabilities and staff training in their use. Training sessions for all maternity staff in issues affecting disabled parents with physical, sensory and learning disabilities are a priority for the coming year.

During 2007/08 I worked with one of two consultant midwives in East Kent on a Disability Support Scheme for expectant mothers and their partners across the county, aiming to give disabled parents-to-be control over aspects of their care. An assessment form is completed with the community midwife detailing equipment, interpreters or adaptations that need to be in place, as well as provision for personal care needs and ensuring accessibility to appointments. The scheme is keen to detail plans for fathers with disabilities also.

Two midwives named as disability leads are available to meet with women and their community midwives to discuss care. One of them has a particular interest in learning disabilities and both are actively reviewing and building on their knowledge of disabled maternity care. Objectives include the promotion of normal birth amongst this group, other feasible changes, and those aspects of maternity care, such as interprofessional links with social work departments, which are harder to influence because of the limits of the committee's jurisdiction. Additionally a Disability Resource Folder, a collection of articles, leaflets and journals related to disabled pregnancy, childbirth and parenting is held centrally and available to any midwife or parent. Its index is held on every hospital site for midwives to offer to women or to draw on themselves.

A welcome leaflet to the scheme is included in every maternity pack handed out by GP surgeries before the first midwife appointment. Guidelines have been produced for midwives to use in conjunction with the scheme, describing how best to use the materials with their clients. It is currently been trialled by two disabled women in the hope of revising, finalising and implementing it across East Kent.

It is a concern that not everyone who would benefit from its use would consider themselves disabled, or conversely that families with little need may attempt to use the service to gain access to increased care or single rooms in hospital.

It is important to enter a complete list of the adaptations or scenarios that may be needed by families, as equipment used routinely on a daily basis, in fact the most essential, may easily be forgotten. There is still much to learn on how best to represent the needs of disabled parents in the design of maternity services and how to create a culture of inclusion by management and staff. However, a local MSLC has proved to be an ideal way for disabled parents in this area to detail their experience, voice their concerns and actively work with commissioners and providers to design a maternity service that better meets families' needs.

East Kent MSLC hopes that the projects that it has initiated will generate more interest from local service users to continue the work and become part of the future changes.

DPPi: Supporting disabled parents and examples of accessible information for parents with sensory impairments.
Shanta Everington (SE) and Krishna Ramamurthy (KR), Information Officers at Disability Pregnancy and Parenthood international

SE:
After one look the midwife at my booking visit assumed that I was not disabled, simply on the basis of my appearance. I'm sorry to say that thereafter much of the care in my pregnancy was inappropriate.

As a disabled parent much of my work with DPPi is supporting other disabled parents . The DPPi is the leading UK and international information service for disabled parents; established in 1993, it is controlled by disabled parents and it exists to promote awareness of disabled parents and support for them. We aim to build bridges between disabled parents to be and veteran disabled parents, the professionals who will support them and advisory groups.

Our national information service offers free, confidential information and support to disabled parents and professionals, on rights, good practice, adaptive techniques and details of local and national services. All forms of communication with DPPi are available, and our responses are tailored to individual needs. Our centre in Finsbury Park, London includes a resource area displaying equipment and relevant publications. Parents and professionals are welcome to be seen by appointment. The DPPi Journal is available on subscription and on our website; among other topics it contains parents' experiences and good practice articles. Our wide ranging publications are available free to the disabled and come in a variety of formats. We are able to supply speakers and trainers to raise awareness of the needs of disabled parents, and to demonstrate adaptive techniques and equipment. Student midwives, occupational therapists, home-school advisers and other voluntary organisations have benefited from this training.

KR:
Examples of DPPi publications include the parenting of different kinds of disability, practical strategies and tips such as bathing, choosing cots and beds, dressing, carrying a baby or child in a wheelchair and changing nappies. Large print versions are available in 18 point, but a Deaf-blind client wanted them in 24 point bold, on yellow paper, and computerisation enabled this with little difficulty.

In 2004 with a 3-year lottery grant we responded to a commission for accessible guides for parents with sensory impairments. We developed a DVD on Pregnancy and Childbirth for Deaf Parents presented in British Sign Language with subtitles and voiceover, and pictorial leaflets describing feeding options and the role of health visitors. Its development was deaf-lead, involving deaf parents and professionals, and it was published by a deaf production company, Remark. For visually impaired parents we produced the Having a Baby pack, in multiple formats including the digital talking book Daisy, covering planning, pregnancy, birth and early baby care. This was written by a visually impaired parent with input from a range of visually impaired parents and professionals. A practical guide for one-handed parenting is in the pipeline. We are organising a consultation meeting in London launching the Empowering Parents initiative, a Department of Health funded project to produce information on pregnancy and childbirth for physically disabled parents. Our sister organisation Disabled Parents Network provides peer support.

Contacting DPPi:

Helpline: 0800 018 4730
Textphone: 0800 018 9949
Email: info@dppi.org.uk
DPPi website
Admin: 020 7263 3088
Fax: 020 7263 6399

Bibliography / Suggested reading.

DPPI Publications list

DPPI Journal published quarterly, January, April, July, October
Working with deaf parents: a guide for midwives and other health professionals (reference G1) 2007
A guide to pregnancy and childbirth for Deaf parents (reference DVD1) 2006
Having a baby: a guide for visually impaired parents and health professionals (reference H0) 2006
Good practice for midwives (collated articles - reference C7) 2008
Useful references (R1) 2008
Bathing your child (P1) 2005
Choosing cots and beds (P2) 2005
Nappy changing and dressing (P3) 2003

Discussion, morning session.

A director of the organisation Remark told us that his partner has had three children, and that the decision to deliver the first two by caesarean section was decided without her involvement in the discussion due to a misunderstanding about her deafness and her ability to take part in the decision-making process. This was overcome when she was pregnant for the third time; she insisted on VBAC (vaginal birth after caesarian section), and this was completely successful. The result of a test for Down's syndrome implying a small risk was communicated quite wrongly to her mother. It is also inappropriate for a mother to interpret for her deaf daughter. In our area there is only one interpreter for 140 deaf people, and the service is required to be booked well in advance, which is obviously unsuitable for somebody who may go into labour at any time. The interpreter's task is not an easy one; they may be unfamiliar with obstetric jargon, and insufficiently aware of the sensitivities of the situation and of the need at times to stand back and leave the family to themselves. Deaf Training UK can inform staff of the specific needs of deaf families in a birthing area. JR: We have simplified communication for the deaf by installing push-button intercom outside closed areas such as labour wards.

KR: DPPi will take on a suggestion that we involve AIMS in an upcoming consultation.

JR, responding to a question from the chair: We are using some of the modern methods of communication with the patients, including text messaging and email. ZK and PF agreed that these are very useful, and in particular texting the pregnant teenager is their common method of communication.

JV confirmed that all policies originating in the Department of Health are subjected to an impact assessment. We have some difficulty with data collection, such as national data on early access to maternity care and disability.. A minimum dataset for maternity services has been developed and is available on the Information Centre website. A national implementation programme is being constructed.

JV: Disabled women are not always allocated a midwife specialising in disability, but they should all have a named midwife providing care throughout pregnancy, and should ensure that they provide accessible, innovative and flexible care that is informed by best practice. They are able to call upon specialists to meet particular needs of the women concerned. JW: Just as there are midwife specialists in diabetes so there should be specialists in disability in every unit, and in the annual update that midwives receive they should be imparting their knowledge to their colleagues.

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