Parents of children with congenital heart disease

Accommodation for parents

Adequate facilities and accommodation for parents should be available when a child with a congenital heart defect is admitted to hospital. Families should be accommodated within a reasonable distance from the cardiac ward/paediatric intensive care unit.

Here parents talk about their experiences of the accommodation they were given while their child was in hospital. It was very important for them that their needs had been considered, especially for those mothers who had only recently given birth.

Many parents said the accommodation at the hospital when their child was in intensive care had been superb and they were very grateful. Depending on the hospital, provision ranged from bunk beds in a room to a self-contained flat adjacent to the hospital. The room had a telephone with a direct link to the ward; some places had a self-contained kitchen or bathroom, others had shared facilities. But all were close to the hospital. Much of the accommodation was self catering but parents could in some cases also buy canteen food at staff prices. One couple whose child spent 4 and a half months in intensive care said that without that provision they would not have been able to afford staying in London.

Although accommodation was usually provided, some parents found it was not available when they first arrived at the hospital. One couple had to sleep in the chair beside their child's bed or the bed in a day ward until a room was found while their child was in intensive care.

Another couple said that one parent stayed with their son, while the other parent and sibling stayed in a hotel at the hospital's expense for the first night in hospital. One new mum found that no accommodation was available for them when one of her twins was transferred to a specialist hospital for emergency surgery at the Easter weekend and they had spent the first night on the children's ward.

Some parents could bring their other children to stay. One couple's older children visited their parents, which they said helped to give the family to feel more normal while their son was in hospital. Other parents said the accommodation had provided a sanctuary away from the hospital environment.

When their child moved to the ward, one parent usually slept on a mattress or in a chair next to their child's bed (see Interview 17).

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Last reviewed July 2018.


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