Parents' experiences of negotiating care for their technology-dependent child

Abstract

The aim of this exploratory study was to understand the negotiation of care as experienced by the parents of technology-dependent children in a hospital context. Qualitative semi-structured interviews were undertaken with a group of six parents. Parents felt that their roles as parents were not considered enough by nurses and they tended to be seen as carers, not parents. Negotiation of care was not always apparent. Instead, nurses often made assumptions about parental involvement in care. Parents wanted to carry out care when in hospital, but were not always given choices. Parents also reported a desire for more confident nurses. This study highlights the need to gain insight into parents' experiences, in order that nurses can provide care in a way negotiated to suit the individual family. Suggestions for further research in this area are offered.