“They’ve got to be as good as mum and dad”: Children with complex health care needs and their siblings’ perceptions of a Diana community nursing service

Abstract

Background

The benefits accruing from the provision of ongoing care and support for children with complex health needs in the community are well established with Diana Nursing Teams contributing to and filling gaps in existing service provision.

Methodology

The study aimed to explore the children’s/siblings’ perceptions of the (Salford) Diana Team. It drew upon participant inquiry and involved participant observation of the children’s activities. Data were generated by the children through informal peer interviews, photographs, and the development of scrapbooks containing poems, stories, drawings and other materials.

Results

Five families (ten children, aged 2–13 years old) participated in the study. Three key findings were constructed from the data relating to technical competence with the ‘sick’ child, the qualities and attributes that Diana nurses should (and should not) have, and the difference the Team made to the children and their parents.

Conclusions

The sick child’s siblings highlighted that attention to their needs was important. This study shows the value of including children within research about children’s services. It also highlights that children use parents as their gold standard for care and they are clear about the skills and attributes they value about ‘outsiders’ who provide care to their family.