As a UK mother of three children, one of whom was born with imperforate anus, I was interested to hear about your web site. My children are now in their thirties and the sort of information now available through groups like yours would have been invaluable if it had been available when my children were young. In those days (and perhaps even today) few people I met had even heard about the condition's existence. As a family we had to learn from experience and by trial and error. I always felt the situation was unsatisfactory and decided to try to address it when the opportunity arose. I did this by means of qualitative research.

When my children were in their teens I learnt that a self-help group for families with children with imperforate anus had been set up in Britain. With the help of the mother who set up the group, I circulated a questionnaire to which nineteen families responded. It was clear from this small piece of research that families were facing significant problems despite their resilience. One of the major issues families had to manage (as well as many practical ones) was the stigma arising from the negative attitudes of other people.

Later, in the 1990s, when I had acquired more research experience and was working as a university lecturer, I won a grant from a UK charitable body (the Joseph Rowntree Foundation) which funds social research. Up to that date information which was published about imperforate anus tended to be very medical. While this is valuable, it is difficult for non-medics to understand and does not tell affected families how others cope day-to-day. I and a co-worker interviewed 35 families (one or both parents, plus their affected child in most cases). We wanted to find out from families how they coped with the practical and emotional issues relating to imperforate anus, and what was helpful and what was unhelpful. We were not medics, although we were both experienced in disability research, and we were interested in what helped families to deal with the challenges they faced and what made life more difficult.

As a result of this study I wrote a short book reporting what the families told us. In the book I used as many of the family's own words as possible so they could convey their views themselves. I wrote the book partly so that other affected families could learn about other families experience and ways of coping. I also wanted to make more people, including professionals and service providers, aware of the difficulties often associated with this hidden impairment, especially the faecal incontinence that may be associated with it. In writing the book I tried to make clear the significant problems families faced because I wanted service providers to take the conditions seriously. On the other hand I also wanted to make apparent how resourceful both parents and children often are in coping on a day-to-day basis. Later I also wrote articles for teachers and the social workers to raise awareness of the condition in these two professional groups.

The families in the study reported that the condition (i.e. imperforate anus) was little-known and poorly understood, so I called the book: "People Don't Understand: Children, young people and their families living with a hidden disability". The book begins by highlighting the importance of the social context in which the families lived and the pressures on the children to conform to social rules which were difficult or impossible for them to achieve. The next chapter explains to the reader about management of the physical effects. This is followed by a chapter about the considerable emotional impact of the condition. After this the book describes family life, and parents' efforts to maximise the opportunities open to their children. The next chapter deals mainly with school, as well as giving a little information about working life. This latter was provided by the eldest young people in the study - the children and young people who gave information for the study as a whole were aged from 8 to 22 years.

The last chapters in the book describe the expense, that the condition involved for the families, the families' need for good, timely information and the role of health and social services. In the UK hospital care is free, and the children received surgery in regional or national centres where the staff's expertise was highly valued. However, families often lived at some distance from the hospital so that parents sometimes felt left to cope without recourse to much local help once their child was discharged after surgery. The book ends positively, noting that the study highlighted that affected children, perhaps because of their experiences, could show themselves to be very empathic and caring.

This is not to underplay the difficulties families faced. Some adolescents and teenagers, in particular, went through difficult periods. Some parents also were perplexed if their children went through a stage when they refused to acknowledge they had a problem with incontinence, although this phenomenon was not uncommon.

It is also important to emphasise how well the families were coping, given the difficulties they faced. Sometimes social research is carried out which compares the behaviour of children affected by some sort of impairment with children without an impairment. I do not think this is the right approach. Rather we should focus our efforts on researching how to provide as positive environment as possible for all our children, including those with rare conditions. I thought it was important to hear from affected children and young people themselves about their experiences and preferences.

Of course, some of the information in the book is really specifically about the UK situation. For example, in the UK families with disabled children (and this includes children whose impairment leads to faecal incontinence) qualify for financial and other forms of assistance from national and local government. I was interested to learn how far families were aware of and claiming this type of help, but I know services are organised differently outside the UK.

However, much of the information families gave provided insight into the issues faced by families with a child with imperforate anus which is relevant to families in the US and elsewhere. For example, the social pressures and emotional cost involved are, I suspect, rather similar. A four-page summary of the study is available on the web site of the organisation which funded the original research and the book's publication - see http://www.jrf.org.uk/knowledge/findings/socialcare/scr228.asp

Greg and I also hope to be able to organise that some copies of the book will be available for purchase through your group. Currently the book can be purchased from the London publishers - The National Children's Bureau, (telephone number from outside the UK, +44 20 7843 6000)

My children are now grown up, and all have succeeded in acquiring good academic qualifications, and are kind and caring people. We faced difficult times together, especially after their father died while they were still very young. However, ultimately they have all prospered, largely thanks to the help and support of loving extended family and friends, as well as to hospital and other services.

Judith Cavet
October 2004