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When somebody knows my name
A Caring Narrative
When Somebody Knows My Name
by
John Atkinson
In 1990 I was asked by a charity to assess a project in Romania that was caring for 200 HIV-positive children in hospital and other institutions. The project had a Romanian medical director who was being assisted in her work by two consultants from Britain: a virologist and a community pediatrician with HIV expertise. My role was to make a needs assessment, consult with the medical team, and discover prospective patterns of practice that might improve the children’s situation. My own background was as a community nurse with expertise in delivering nursing care to margi-nalized people in deprived circumstances, particularly those with HIV, and the homeless.
I discovered that although some babies and children were terminally ill, most of them were not. The children were receiving adequate medication. Those that were dying seemed to die, not from HIV disease, but from preventable malnutrition and dehydration. Details like name, date of birth, weight, and continuing observation charts were not accurate, although injections were given regularly. The children were also, mainly, quiet and docile. They were not treated cruelly although they were not treated as individuals. There was little of no use of their names. These children were not orphans, but when they were admitted they commonly became “lost.” They became orphans by default because the parents could not find them or felt that it was hopeless to look.
Over the next few months we set up a nursing project using a community model whose main purpose was to individualise the children, monitor and encourage their nutrition, hydration, developmental milestones, play, and other activities. A full-time team of nurse volunteers worked in two of the main institutions. The use of each child’s name was central to this model and the name, age, and date of birth (where known) were placed above each child’s bed. The names were also put on the
RADIX 7 Published in the Radix Journal – San Francisco, USA October 1993
children’s plastic bibs.
On subsequent visits the change was dramatic. The mortality and morbidity had improved. Each child had his or her own cot and was always called by name. Documentation had improved, so that it was known more exactly how a child was progressing. This meant that children were not slipping into serious and terminal illness as happened before. Instead of all the children having uniformed cropped hair, the Romanian staff would bring in little ribbons and make other small differences. Instead of docile still children, the wards took on the demeanour of a minor riot, with each child shouting for attention or to a friend.
Because it was known who each child was, the team began liaison with the parents. An outpatients clinic was started for children outside as well. This helped prevent children from being lost in the system.
The most important process in the project, therefore, happened when the children were called by their names. This had the practical purpose of establishing accurate records, enabling continuity of care, and providing building blocks to rehabilitation.
Naming the children appeared to have a pro-found effect on the Romanian nursing assistants. Because of the enormity of the problems they faced, with death and despair all around, it must have been difficult to relate to a seemingly endless string of sick and dying children. Although Romanians are renowned for their love of children, this terrible, relentless situation tended to make the workers detach themselves from the individual plight of the children.
Once the children had names and a story (of which they, the workers, were a very important part), there appeared to be more hope around the institutions. Attachments between individuals became common. That small act of naming them bestowed humanity on each child. Their individuality was recognised. Each had a place in history and, I hope, also in someone’s heart.
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