Parents whose children have complex needs: experiences of hospitalization

Authors: Hewitt-Taylor, J.

Journal: Journal of Children's and Young People's Nursing

Volume: 2

Pages: 13-19

ISSN: 1753-1594


This paper discusses the experiences of parents’ whose children have complex and continuing health needs in relation to their child’s hospitalisation. The findings are taken from two qualitative studies. The principal findings are that the challenges which parents whose children have complex health needs experience as a result of their child’s hospitalisation may appear to be very similar to those of other parents. However, the nature of their child’s needs and their level of dependency usually makes the demands on their parents even greater. There generally appears to be an expectation that parents will remain with their child, and provide for all their care needs, including many of their specialist medical or technical needs. This may be because of the workload which nurses carry, the skills, knowledge and confidence which staff have in meeting the needs of children who have complex and continuing health needs, and staff attitudes towards children and their families. However, although parents are often expected to take on a role which acknowledges and makes use of their expertise, they are not always seen as equals to staff in relation to respect for their expertise, knowledge of their child, and decision making about them, and are not given the opportunities which staff have to take breaks or have time off duty. This paper describes what were largely unstructured additional findings from two studies of the experiences of children who have complex and continuing health needs and their families. Despite the limitations which this poses to their validity, they provide some insights which may be useful in directing more specific studies.;article=JCYPN_2_1_13_19

Source: Manual

Preferred by: Jaqui Hewitt-Taylor