Visual impairment: new guides

Elena Piras, a visually impaired parent from Edinburgh, reviews the Having a baby pack from a parent’s perspective; and Julie Brown, Midwifery Practice Leader for Parent Education, St Thomas’ Hospital, London, writes about the pack from a professional’s perspective.

DPPI has launched a new resource for visually impaired parents and for professionals. The pack is called Having a baby – a guide for visually impaired parentsand professionals and it has three guides: Planning, pregnancy and birth,From birth onwards and Useful resources for parenthood.

The pack has been produced with input from visually impaired parents as well as health professionals, and the information is based on their knowledge and experience. The pack is available in a choice of formats: print, large print, Braille, audio CD and DAISY CD (a digital talking book format).

Launch of pack

The launch of this new resource was hosted by the Royal National Institute of the Blind (RNIB) on Friday 26 May at its headquarters in London.

The launch was attended by visually impaired parents, some with their babies and children, as well as healthcare professionals and representatives from visual impairment organisations.

Mary Cox , RNIB Public Information Officer, highlighted the need for accessible information for visually impaired parents and spoke of the important role these guides will play in helping to bridge the information gap.

Monica Smith , a visually impaired parent who was commissioned by DPPI to research and write the pack, spoke about her own experience as a parent and how she came to be involved in the project.

Mervi Jokinen , from the Royal College of Midwives, said that midwives and other professionals must increase their understanding of the needs of this group of parents. She called for a two-way exchange between parents and professionals and said that the Having a baby pack can help facilitate this vital dialogue.

Terri Balon , a visually impaired parent, spoke about how she felt the pack could be useful to visually impaired parents.

The content and style of the pack were well received.

A parent’s review of the Having a baby pack

This pack contains useful information, resources and practical advice, ranging from planning a pregnancy to after the birth. It is divided into three parts. The first deals with planning pregnancy and antenatal care. The second talks about postnatal care, support from health professionals and social services, and has lots of useful contacts of different organisations, which can be helpful. The third part is a very comprehensive list of organisations and resources, which includes various message boards and e-mail groups of interest to visually impaired parents; organisations which produce books in Braille, large print or audio formats; and much more.

This information is very useful for parents. It includes quotes from other visually impaired parents, explaining

how they coped in different situations; as well as information about different organisations which provide general information to all parents and disabled parents, such as specialised equipment, counselling and play groups.

If I had had this pack when I became pregnant nine years ago, I would have been delighted to know what to do in difficult situations, such as dealing with those health professionals who didn’t know anything about visual impairment and thought that I was mad to have a baby. Also, I would have felt a lot less isolated if I had known about other parents who were in a similar situation.

The pack was produced in consultation with other visually impaired parents, who participated in a steering group. Group members were asked to review the pack at various stages of its production. This included the format, the language used and the quality of the product in various different formats. I was part of the group, and was happy to contribute to such an important resource for visually impaired parents, and hope to help again in the future.

One thing I would have liked to see in the pack is information about regional organisations which may be of help to parents: I now live in Scotland and there was no mention of any Scottish organisations.

Elena Piras

A professional’s review of the Having a baby pack

The Having a baby pack is a useful resource for both parents and service providers. The information provided is written in plain English without any medical jargon. Each guide is clearly set out with defined sections taking parents-to-be and new parents through what to expect during pregnancy, such as the emotional changes and screening tests, and beyond into parenthood. They also include information about needs assessment and direct payments. The contents page clearly shows what is included in each section making it easier to find information on relevant subjects. Also included in Planning, pregnancy and birth and From birth onwards is signposting on where to access more information and help, with useful telephone numbers and web addresses, although there is much more detailed information in Useful resources for parenthood.

Many people have contributed to the content by providing an insight into what it is like as a visually impaired parent or parent-to-be when accessing maternity care. The quotes are from personal experiences: the majority of experiences have been positive but they also reveal that some have struggled to have their needs met by service providers. They also emphasise the importance of building up a support network during the pregnancy and maintaining it after the birth. This support has been so valuable to parents when sharing the joys and worries of parenting and the adjustments that are needed in their new role.

There are also suggestions on how services or accessibility to information can be improved as well as naming brands of baby care equipment that was most useful to them, although this does depend on individual need and level of visual impairment.

These guides can be used on their own or to complement information given by midwives, general practitioners and obstetricians. Overall, this is a well-presented information pack and an eye opener to service providers of maternity care.

Julie Brown

The Having a baby pack, developed by DPPI is available in print, large print, Braille, audio CD and DAISY CD. Price: £6 for one guide or £15 for the set of three. Free to visually impaired parents. Please order from DPPI. Tel: 0800 018 4730. Textphone: 0800 018 9949 E-mail: info@dppi.org.uk

First published in Disability, Pregnancy & Parenthood international, Issue 55, Autumn 2006.

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