Abstract
This study explored the existing nursing homecare packages required by children who receive home parenteral nutrition and their families, in order to evaluate the effectiveness of the support required. The study forms the basis for ongoing financial discussions with PCTs to ensure high-quality nursing services are available and meet the needs of families. Families' views about homecare packages developed in response to the needs of care for parenterally fed children were explored. Findings indicated three emergent themes that families face: physical, psychological and burden of care. Homecare packages developed in response to family needs were highlighted as being essential. A 24-hour on-call service with expert paediatric nursing staff was a key factor for families to feel secure. It was felt that the individualized homecare packages supported the vulnerable patient group. Families felt that nursing their child at home was a major advantage in the homecare package, but improved delivery of social and medical care was necessary to meet individual child and family needs.
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